Please help SAVE MY LIFE!

August 30, 2012



How are you?  Well… today was my last day in California, as I am scheduled to be coming home tomorrow.  I can’t wait because it has been a LONG week here in California.  I miss my mom, as it has been my dad who has been traveling with me.  I have seen countless amount of doctors and have had countless amount of tests.  I have literally been in the hospital all day long every single day.  I think if I see the inside of another hospital soon, it will be way too soon.  However, I do have to return to California as soon as possible, as my life depends on it.  Therefore, I guess I will be seeing the inside of a hospital sooner then I think because they want me to come back like in 3 weeks to get more stuff done. 

However, I guess I should just finish up with this trip first and take care of everything that goes along with this trip before worrying about the next one.  I really want to tell you what happened today because today was the BIG day, as today was the day that kind of determined my life.  I had the meeting with the TRANSPLANT team and therefore, it was “decision” time.  It was the time when they were going to decide if I was going to be granted the transplant or not.  Even though I so desperately needed the transplant to survive, we didn’t know if I would be given the transplant for two reasons. 

First of all, my health is so bad and I weigh literally nothing.  We didn’t know if I would be able sustain an operation and we didn’t know if any surgeon would be willing to take the “chance” on me of operating.  I am extremely unstable and they don’t know if I would be able to survive an operation.  So, not many surgeons are willing to give me an operation or do anything on me in the first place even though I may desperately need something… even if it means saving my life!!

Second of all, I am on so many medications.  I not only suffer from a failed GI system that leaves my entire GI system (esophagus, stomach, small intestine, large intestine, etc.) dead, but I suffer from other ailments such as severe autonomic dysfunction and a severe underlying neurological disease that is extremely painful.  Therefore, I am on so many medications.  I take over 50 pills a day and I am on so many injections as well.  We didn’t know if they would give me the transplant because the medications that I am on compound the reason why my GI system has failed me.  Even though my GI system has “died” because of the Gastroparesis and other diseases, the medications that I have to take doesn’t help things either. In fact, the meds that I take (especially the narcotics), happen to be the worst for my GI system and therefore, they will contribute to killing my GI system as well.  They only compound the problem. Therefore, we didn’t know if they were going to waste giving organs to me because it is very possible that the new organs can be affected too because of the medications that I am on.  However, like I said before, I will definitely die without this transplant and therefore I understand the reasoning that they wouldn’t want to give me organs that might be ruined again because of the meds, but I also understand that this is my only chance of living and therefore I want to live.  You know? 

I am so used to getting BAD news that I didn’t honestly know what to expect.  In fact, one of my doctors on my team here even said that when they were reading through my records, they felt bad for me because they see how badly that I am sick and every time a doctor wanted to do something for me that could help me, they couldn’t do it because an obstacle stood in there way.  They said that they felt so “sorry” for me and everything.  But, that is just the story of my life, so I was kinda thinking that this was going to be the same thing.  I thought that when I went to the transplant doctor today, I was also going to get the same unfortunate news.  I thought I was going to get my “death” sentence because like the doctor said to me “every time there is something to do, another obstacle stands in my way that prevents me from getting it.” 

I knew how badly I needed this transplant too because I am basically knocking on death’s door.  The doctors have already said that I am “lucky to be a female because if I was a male, I would easily be dead.”  A male cannot live below a BMI of 13.  There just is no way.  However, a female has a little more wiggle room, as she can live down to a 12.  So, since that is the case, I am able to survive a little longer, as my BMI is like a 12.6.  However, I am literally borderline death and therefore, I don’t have room to drop anymore.  I literally weigh in the 60s and if I drop anymore, I will literally die.  I am desperately running out of time and I don’t have that much time left.  As the doctors said to me, “it is amazing how I am alive, and we don’t honestly know how you are still living.  Yet you must be doing something miraculously right because you are still alive.”  They told me also that even though I am still “living” all I need is one extra stress or something like that to my body, and I will easily die.  They said in the state that I am in right now, “I can’t afford any stress whatsoever because I have no reserve whatsoever to handle it.”  So… it is important to get help quickly because I can easily die.  I am knocking on death’s door, as it can happen according to doctor’s “any day!”

But guess what?  I guess I should stop beating around the bush and tell you how it went today at the transplant doctor.  When I went to the transplant team, they said that they would GIVE me the transplant.  However, it is extremely risky and dangerous.  One big problem that we have is that it might not be done here in California.  There are only 8 hospitals in the country that do this transplant.  However, even though this hospital does do it, it depends on the insurance and stuff.  It could very well be done in Nebraska, Indiana, or Georgetown.  They do it also in Pittsburgh, but after meeting with the surgeons here, they told me that I shouldn’t have it done there because the hospital and transplant team isn’t good there.  This transplant is very dangerous, radical, and risky and therefore, I can’t just have it done anywhere. 

Although I would really prefer to have it done here in California, my dad and I were really thinking about it and don’t know honestly if that is the BEST thing.  The biggest center is Nebraska and maybe even though we do love the doctors in California, maybe the best place for me to go is there because that would be the best place for me.  We will be “Eskimos” in Nebraska because it will be so very cold there.  We did some research and found out that if we go to Nebraska, they get like 20-40 inches of snow between the months of January and February and the temperature gets so very cold.  I hate the cold.  My dad said to me that I would be ok because I would be in the hospital; it is him that would have to worry about it because he wouldn’t be staying in the hospital.

I really need to go where the best place is for me.  But I don’t know where that would be.  If I have it done in California, I might be better in the sense that I would get the transplant in about a week or two.  I am so very sick and if I have it done in this center, I probably would get it in that time frame.  However, they only do 1-2 a year and they have 85% survival. Every single one has a complication. 20% have major complications where they have to go back to the or. They sometimes never get to leave the hospital. So we might b better going to Nebraska because it’s a bigger center.   I’ll have an ostomy bag for at least 3 months and hopefully after they’ll be able to re-hook me up. They will have tubes coming out of me for a while too. For the first 6 weeks I won’t gain a single pound because all weight and food will go into healing.  If I have it at another center, I don’t know how long the wait will be for the organs. 

But, the doctors know that I most definitely need the transplant and therefore, they are starting the transplant process since it is a very lengthy process.  Even though you can get the organs in a fairly fast amount of time period, the time it takes to do the whole process of the transplant because so much goes into getting it… that does take a while.  So, they really want to start getting the “show on the road.”  However, they are planning on trying something else while they start the process as well. They are going to try TPN or a central line with lidocaine 24/7 to see if I can tolerate it. They don’t think I will or even if it will be possible. They said that the tube feelings will have less than a 30% chance of working.

When my dad heard that the tubes might have a 30% chance of working, my dad became extremely hopeful that something would work.  My dad wants me to live no matter what.  It would kill him if something happened to me.  He doesn’t realize that 30% is really nothing and the doctors even said “LESS THAN a 30% chance.”  But, like the doctors said, “He likes to see the glass ½ full all the time.  My dad is just so optimistic.  He wants me to do everything there is to live.  He is just so hopeful and wanting to try anything and everything.  He puts his eggs all in one basket and I don’t want to see him hurt.  Sometimes I wonder if he doesn’t “push” me too much and if he just doesn’t push me because he doesn’t want to lose me, not because it is the BEST thing for me. You know?  Sometimes I think he is just “selfish” because he loves me so much and doesn’t want to let me go.  Sometimes I think he would rather see me “suffer” because he doesn’t want to let me go.  I know that if something happens to me, it would kill him and he would never recover.  

If the transplant definitely worked… It’s my best option because I’ll b able to eat whatever I basically want. If I go with the TPN or tube… I’ll never put another morsel of food in my mouth again. But the transplant is HIGHLY dangerous and HIGHLY risky. I will not only need a small bowel, but I will need a stomach and pancreas as well. So I will be getting a small intestine, large intestine, stomach, pancreas, etc. The doctors said what’s amazing is that despite everything like how little I weigh and how my organs are failing and how I’m knocking on death’s door… I am NOT malnourished. It’s really amazing and they honestly can’t believe it.  So… if the transplant works and I make it through… of course that is the better way to go because I will be able to eat again.  However, it is no “walk in the park” by any means.  But, at least I will be able to eat again.  I can’t imagine never being able to put another morsel of food in my mouth EVER again.  My stomach will be so hungry and I will never feel “full.”  Being “full” not only comes from having nutrients enter your system, but because you taste food and food enters your mouth and stomach.  However, since I won’t have this, I will never feel “full.”  My stomach will rumble with hunger all the time, which won’t be pleasant.  I also will feel hungry when I smell food too and will feel “weird” around food when I go out to restaurants and such.  The doctors said there are “tricks” around this such as putting mint Vaseline under your nose to not smell it, but still… I still want to be able to eat.

If I have the transplant… We don’t even know how we are going to manage to do it because my dad has the business and money is so tight. We will have to stay here roughly 70 days…maybe more.  Even now, I need to come back in 3 weeks and I don’t even know how we are going to accomplish that.  They say I’m in really bad shape and wanna move on this ASAP.

What is good though is that when I return in 3 weeks, they want to do a lot a one time.  I am in such bad shape that they don’t want to “wait” on things anymore and want to do as much as possible as quick as possible.  Usually they do one thing at a time but they wanna do a lot with me. Firstly, I need a psych consult in order to get clearance to have anything done.  They want me to have the psych consult one day because they can’t really do that when I’m admitted. Then, that clears me to have the snail venom and ketamine. This way I would go into the hospital right afterwards, which would be later that night or the following day, and they would not only do the “tube,” but the snail venom and/or ketamine. So this way they do a lot of stuff at one time instead of waiting. Of course they are hoping to do this all… But who knows if it will happen. We don’t know if we can afford it.

We have no idea how we r going to even make it back here in 3 weeks. We r soooo financially broke that it isn’t even funny. Plus… With dad not working… It really is taking a toll. I hate to be a “crier,” but I desperately need help so badly.  Therefore… Dad has to do some working and catch up on all that he missed out on from being in Cali this time. Then, he has to also do additional because when we go out here again, he will miss even more work. I don’t even know how we are going to do this. Dad doesn’t even know how this transplant is going to work out because of how much time is needed to be spent in the hospital and away from the business. Being away from the business means money and customers lost and no income for us. The business will never survive and therefore, we won’t b able to even pay our bills and such. We are so financially in debt that it isn’t even funny. We really need a miracle. If something happened to my dad’s business or to my family because of me, I would never forgive myself.

Sometimes I wonder if the best thing isn’t just to do nothing. This way no one will get hurt because we can’t afford it and my family won’t suffer anymore.  I have been a burden on them for so many years already and they have given so much of their lives up already.  If they had to give up more, especially their house and my dad’s business… that would be the last thing I would want them to lose.  I don’t want them to have to give up or lose out on anything anymore.  They have given up so much for me already.  It isn’t’ fair to them.  Plus, the transplant is extremely risky and dangerous, so maybe the best thing is to just live out whatever time I have left. You know?  Maybe I should just enjoy whatever time I have left and enjoy it.  I have been suffering for so long so therefore, maybe the best thing is just to enjoy whatever time I have left and move on.  At least I won’t have to suffer any more and I won’t have to go through the transplant, which is so very dangerous and there is definitely no guarantee whatsoever that I would even survive.  Like I said before, it is no “walk in the park,” as it is so very dangerous and runs the highest rejection rate.  I am basically being “gutted.”

Even if I go through with it, the recovery is really intense.  Like I said before, everyone has complications from it.  20% even have to go back to the OR because they have MAJOR complications, and some never leave the hospital.  I am hoping I will never have that. I will also have an Ostomy bag and I will have tubes coming out of me as well.  They will also have to swab the inside of my intestines every single day, twice a day, to make sure that I am not going into “rejection.”  They said that if I was going to start “rejecting” the organs, the first one to go would be the small intestines.  So… they said they swab it 2 times a day to find out if it is going into rejection.  I will be on very heavy anti-rejection meds because of this transplant. It is the transplant that runs the highest rejection rate.  I would be on these very high drugs for the rest of my life.  Plus, even if I tolerate the transplant and make it trough, there is no guarantee that it will last.  I can very easily need the transplant again in 3 years or something. 

So… I have a lot to think of.  But… in the meantime, I really gotta find a way of raising money because not only will I need money for the transplant because I will need to stay here for like 70 days at least and will need to survive without my dad working and such, but I will also have to pay something towards the transplant as well because we don’t know how much the insurance will pay (if they pay at all).  We also need to find a way of raising money because we need to return to Cali in 3 weeks to have these other procedures done as well.  Gosh… it surely stinks that my life depends on money.  If only I had a money tree in my backyard.  So… if you can think of any ways of raising funds or anything… I would really appreciate it.  After all, my life depends on it and without the funds, I won’t be able to receive treatment because my family can no longer afford it.  I have been extremely appreciative of all the help I have gotten already, but it is nothing in comparison to what I will need.  So, if you can do anything such as think of a way of raising funds, spreading the word that funds are needed, saying a prayer, etc… I would much appreciate it.

In the meantime, when I return to NY, they want me to go into the hospital to have a procedure done.  Like I told you in the past, I am filling up with air/gas and it is not good.  It is building up and since I am so small, it is even worse.  It is suppressing my organs, and it is causing them to go into organ failure.  It is also putting pressure on my spine and with my bones being paper-thin, they are very afraid that I am going to get a life-threatening fracture.  So, they want me to go into the hospital and get a “rectal tube” so that the air will come out of me.  Of course this is only temporary and will only come back.  So… it will have to be constantly repeated over and over again.  So… the hospital will be my home away form home for this procedure.  It will really stink.   A “rectal tube” is a rectal balloon catheter.  It is inserted into the rectum, some as far as the inner colon, and helps to collect or draw out gas or feces.  They want me to have it done ASAP because it is causing a lot of problems including total organ failure and therefore, the pressure must be relieved before more damage is done even though it will only come back.

The use of a rectal tube to help remove gas when the sphincter muscles do not work appropriately enough for gas to pass on its own. It helps to open the rectum and is inserted into the colon to allow gas to move downward and out of the body. This procedure is generally only used once other methods have failed, or when other methods are not recommended due to the patient’s condition.

Gosh… this total GUT FAILURE has caused so many problems.  It has caused this organ failure to occur because of the gas buildup, as well as aspirations into my lungs and fluid build-up as well as other things.  I can’t wait for the day to say that I am “normal” and have my life back.  I have made a BUCKET LIST and there is so much that I want to do that I has been robbed from me because of this illness. I really hope that I get to do it before I die. 

You will never guess what has been happening.  I have been having a lot of trouble breathing. I really haven’t felt well… especially tonight. I didn’t realize it but with everything going on and everything being so hectic, I forgot to take my breathing medicine. Can you believe it?? I can’t believe that I did that because I’m usually so good about my meds.

I haven’t taken my breathing med since Tuesday, so that means three days without it. It’s only was a matter of time that it caught up with me this bad. Tonight I had such a hard time breathing that I literally thought that I was going to die or even end up in the Hospital. Then I realized that I forgot to take my breathing medicine since Monday. What an idiot I am!! So if course I immediately took it. No wonder I’ve been feeling so horrible. But the problem is that I am only supposed to take it once a day and now I don’t know if I should take it in the morning like I’m supposed to, especially since it’s less than 12 hours away.  I am scheduled to come home tomorrow on the plane and therefore, I think it is important to be able to breathe.  Yet, it is going to be less than 12 hours and who knows if it will be “smart” to take it again?

Well… that appears to be all that has happened today.  I guess I better get going because I have a big traveling day tomorrow.  I have to “knock” myself out on meds again because otherwise I won’t make it on the plane home tomorrow.  That is one good thing because I won’t feel the real “length” of the trip, which is like 8 hours long.  When we came to California, my dad was so bored and couldn’t sit a moment longer.  For me… it felt like a split second.  I was knocked out by the meds that my dad didn’t hear a peep from me the entire trip.  I had no choice but to knock myself out because with all that I am going through… the pain and everything… I won’t make it in the air at that altitude without being knocked out. 

One good thing about returning home is that I won’t be having to beat up my dad at night anymore and constantly yell at him throughout the night to “stop snoring.”  We share a bed since it is a king size bed and he snores a lot. I literally can’t take it. I can’t sleep because of the pain and such. I am so hypersensitive that I can’t get comfortable and be able to sleep comfortable.  I can’t even tolerate a blanket on me and therefore, it literally makes sleeping unbearable.  The only “rest” I get is the 1-hour I get after I take all my medications because they knock me out for about an hour.  Anyway… his snoring literally runs me up the wall.  I don’t know how on earth my mom can put up with him.  I have gone crazy with him and it has only been a week.  My mom spends every single night with him and I just don’t know how she does it.  I swear… next time we come here, I am bringing either a nose plug or some other snoring mechanism to try on him or earplugs for me.  Too bad I am not rich and can afford another room because I would send him into another room so quickly for some peace and quiet.  LOL

So… I guess that sums up my trip to California.  We will see where this adventure takes me next.  Hopefully things will start to turn around, but it will only be possible through the help of others.  I will only be able to continue treatment if I get the help of others since my family can no longer afford it.  So… I am really hoping and praying that although I have received help in the past, I am really hoping that more people will help me and help me LIVE.  I am really too young to die. There is still so much I want to do and I am literally watching my life slip away. 

Thank you though to everyone who has stood by my side and encouraged and supported me. I definitely wouldn’t have been able to do it without you. 


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August 29, 2012



What is going on?  Another day in California seeing more doctors.  Since more has happened and I promised that I would keep you updated… here is the latest!  My life is like a soap opera… never  a dull moment!

It has been another day in California.  I am barely holding up anymore.  It has just been seeing countless amount of doctors and spending countless hours in the hospital.  We literally wake up, eat breakfast and leave straight for the hospital.  By the time that we are done, we come straight back to the hotel because it is so late.  We then eat dinner and then we get ready for the next day.  We have been so busy that we have had absolutely no time to sightsee or take advantage of anything that San Francisco has to offer.  The only sightseeing we do is what we see from the car as we travel to and from the hospital.  I still want to go and see the GOLDEN GATE BRIDGE, as the last time I came here, it was completely fogged over.  My parents say that it is “no big deal” to see the bridge because it isn’t even made out of real “gold,” but I still want to see it.  I also still want to see the Sea Lions, as I didn’t see them in the past times that I have been here either.  Even though I did manage to make it to the end of the dock last time we were here, which is where they are located, they weren’t out.  So… it is still on my BUCKET LIST to do.  Gosh… I have so much to do on my BUCKET LIST because my disease has limited me so.  There is so much that I want to see and do before I die, and I am really hoping that I get that opportunity.

So scared for tomorrow. Tomorrow is the BIG day.  I will basically know tomorrow if I am going to LIVE or DIE because I am meeting with the transplant team.  I am so nervous that they are going to turn me away.  I am so nervous that they aren’t going to accept me.  If they don’t… I am going to be given my death sentence.  I am surely going to die.  I don’t know what I will do then.  I am really trying not to think about it, but I know deep down that it is going to come down to that because “shit” always happens to me.  Nothing ever works out.  It is like the brain surgeon said to me the other day… whenever something comes about to “help” me… there is always something that stops it from happening.  I am starting to think that I am not “made” to live.  I am trying to keep a positive attitude… but it is soooo hard. But… in a few hours, I will know for sure where my destiny will be.

I am so worried that I won’t get the transplant because of my medical history.  It stinks because I so desperately need it and yet, my medical history might prevent me from getting it.  I have an underlying neurological disease that makes me take medication… medication that has the possibility of “killing” the new organs that I receive.  Therefore, I don’t know if that will disqualify me from getting the transplant. I understand that they don’t want to “waste” organs on me if I am only going to RUIN them, but don’t they realize that if they don’t give me the organs that they are giving me a definite LIFE SENTENCE?  I am definitely going to die for sure!! Therefore… shouldn’t they at least give me the “chance” to live?  I mean… even if I get the transplant and I do “hurt” the new organs, perhaps something new can come about during that time that can possibly help the underlying neurological disease and therefore the new organs won’t be harmed.  They are coming out with new medical technology every single day.  Perhaps with them “buying” me more time or allowing me to “live,” they would be able to come up with something also.  So… in that sense… wouldn’t it be a good idea to give me the organs either way?  I am just so very scared that they will not give me the organs.

In fact, the doctor’s office called me today to go over everything and confirm the appointment.  It is going to be a long appointment tomorrow.  I am definitely going to need you to talk to afterwards… especially if things don’t go well.  They told me that it would easily be a 2 hr. appointment.  They reminded me to also write down all of my questions so that I can ask them.  I am so nervous about being “turned away” that I said to the person making the calls that “please don’t turn me away so fast.  I really need your help.  Please help me.  I am so desperate.  I am going to die.”  So… we will see what happens.  Only a few hours left.

In the meantime, I of course had more doctors to see today.  I saw the doctor today for the ketamine.  The doctor I saw today was going to deal with the underlying neurological disease.  I am so glad that I came here because this place is simply amazing. I was originally going to have to go to Florida afterwards because I was going to have the more intensive ketamine coma so that hopefully my neurological disease could be “helped.”  However, we found out that Stanford is the BEST place to be because they have all this cutting edge technology and they are definitely probably going to help me the most. The only horrible thing is that they are located across the country.  It also means that I will have to constantly travel back and forth to California, which will mean so much money needed to be spent.

This is definitely money that I don’t have and therefore, I definitely have to find ways of getting it.  But, if these doctors can help me with the underlying neurological disease, then perhaps I can come off of the medication and then it will allow me to have the transplant.  It will be a HUGE process, but it might be just the only thing that will save my life.  You know?  If getting off the meds that will “kill” the new organs might be the only answer to getting the transplant, then something is going to have to be done especially for the neurological disease, which is extremely rare and has no known cure. However, even though on the East coast they thought that ketamine was the answer, even though it didn’t “cure” it, they have state of the art treatments here that they are pioneering.

I can’t believe how this hospital is so much different than any other place that I have been in the past.  The doctors here are amazing.  I met with the doctors and they have plans for me that no other doctor has.  Perhaps they might be able to help me the most.  However, like I said before, it will entail traveling back and forth a lot to California in order to get that treatment, but it might be my only chance of getting my life back. You know?  as of right now, I have to go and get a psych evaluation because no matter what treatment I pick, they are all extremely risky and radical.  They all have the potential to be extremely dangerous and they have to make sure that my mind is “sound.”  They told me that if I have something “deep seeded” that I am suppressing or something, these treatments can really cause them to come out and stuff.  They really have to make sure that I am ok from a psychological point of view.

The only horrible part is that none of these  treatments for this part is covered by the insurance.  So… I don’t know how on earth I will be able to afford this. This stinks because everything revolves around money.  Even though it is being done at a famous hospital such as Stanford, it is considered EXPERIMENTAL and therefore, the insurance company is not going to pay for it.  The doctors said that they can fight for the insurance company to pay for it, but they will only lose in the long run.  These are going to be extremely expensive treatments too and therefore, unless I come into a rich person or inherit a huge amount of money, I don’t think that it’s going to be possible to undergo these treatments that can possible save my life.  So…like I said before… every time I get some “good” news or something that can help me… I always hit a brick wall and there is a down side.

All the doctors agreed and said that I am one of the sickest patients that they have ever seen.  Their hands are really tied too because a lot of options that they have are kinda eliminated because of how much I weigh and everything.  They thought about putting in a “pump,” which would be able to give me medication that are not available in pill form and meds that won’t harm organs and such, but I can’t get the pump because of how small and skinny that I am.

There is just no place at all to put the pump in me.  I told them to go and do some plastic surgery on me.  They laughed, but they said that it really was impossible.  They did think about putting the pump, if necessary, in my butt… but they didn’t particularly seem enthusiastic about the idea or think it was a good idea either because even in my butt, there isn’t a lot of padding or anything.  They are afraid that the pump is just going to erode right through my skin or cause some really major infection or some other problem.

The doctors can’t figure out why I didn’t get the pump sooner when I could have gotten it because I was ‘heavier’ and there was room in me to put it in.  They asked me “Why no other doctor gave me the pump sooner when I was bigger?”  They asked me “Didn’t a doc suggest a pump a while ago when you were bigger and able to get one?”  The truth is that even though I live in New York and you think that New York has such great doctors, they really don’t compared to here.  They kept putting me off… saying that they would try opioids and other stuff that potentially could hurt me and cause other problems.  They were all going at it the “wrong” way and therefore, they wasted time.  They never really wanted to operate and now when someone does… they wasted so much time and now it is too late. So… they really wasted the time that kinda could have saved my life awhile ago and helped me.  U know?  But can’t cry over spilled milk.  Right?  But…gotta work with what I have now.  Right?

So… since I can’t get the “pump” there has to be some other ideas.  Thankfully STANFORD has them.  I really need to get back to STANFORD to get them though, but it will be time and money… both which I don’t have a lot of. Anyway… if I should pass the psychological exam, which I don’t see why I shouldn’t, the first mode of treatment that they are going to do is put me in the hospital and give me SNAIL VENOM. I know… it sounds really weird, but it is true. They are actually going to give me SNAIL VENOM.  They are the ones pioneering this treatment, but it has been highly effective.  It is actually called ZICONOIDE.  Although they prefer to put it in pump so that I can be given it continuously, they doubt that it will be possible because of the reasons I explained before. Therefore, they will be giving it to me through my spine and hopefully it will help.  They said it won’t “cure” me or anything, but it will help me for about 3 months or so.  In this way, I would be able to go down on some of the meds as well, which are the meds that are killing my GI system on top of the autonomic and gastroparesis already killing it.  But can you imagine… snail venom?

Snail venom is for severe pain who cannot take other treatments or when other treatments (like oral narcotics) are no longer effective.  It works by directly blocking pain signals.  However, it is extremely dangerous and that is why I need to have a psych evaluation and everything.  So… we aren’t playing around with a everyday or easy drug.  This drug may cause very serious or severe mental symptoms and neurological problems.  It can also cause psychosis as well.  I would have to be monitored very closely by a doctor because it could very easily lead to confusion, make me less alert, hallucinations, changes in mood or consciousness, etc.  I can also develop mental symptoms or neurological problems, including depression or thoughts of suicide.  It can also cause serious muscle damage and damage to the kidneys.  The most common side-effects of the snail venom are dizziness, nausea, confusion, headaches, sleepiness, problems with vision, and weakness.  But the upside of this is that the treatment can be interrupted or stopped suddenly without experiencing withdrawal effects.  In the event of any serious neurological or psychiatric signs of symptoms occur, this therapy can be interrupted or discontinued abruptly without evidence of withdrawal effects.  So that is one good thing.  You know?

Although the mechanism of action of the snail venom has not been established in humans, the snail venom has been shown to directly block the nerve channels that help transmit pain signals as they travel up the spine.  This direct blockade has not been shown to weaken over time, which is an additional benefit because it means that I won’t build up an intolerance to the drug or anything.  In studies, patients who slowly increased their doses of this snail venom reported an average of 2.4 times the reduction in pain by week 3 of treatment, compared with those in the control group.  Patients experienced a 24% reduction in non-pump narcotic use, compared with a 17% reduction in the control group.  So… those are good numbers.

So… if and when I decide to go down this route and get enough money… I will come to the hospital to have it done.  They will put me in the ICU and they will do it.  Then if that doesn’t work or if it isn’t as effective as they want it to be, they will do a very intensive ketamine coma.  However, the ketamine coma is not covered by the insurance either and will also be very expensive.  They kinda want to stay away from the ketamine because it “messes” around with your brain.  It is like LSD and they want to do stuff that will have the least affects on your brain and stuff.  Plus, they don’t want me to become dependent on a drug and they think that ketamine is one drug that I will become dependent on because I will have to come consistently back for “boosters”… all which will be more money and more time  It also will not last that long in comparison to the snail venom and therefore, the snail venom is the prime choice.

So… if I decide to go through with the ketamine, which will be in place in case I don’t have good results with the snail venom, it will entail me receiving high doses of ketamine in the ICU for about 10 days. It will be extremely risky and dangerous, but it will be my only chance.  The doctor said that I will have to be in the ICU because I will need to be very CLOSELY monitored.  So… now I have that to consider as well.

They probably can do the snail venom as soon as I go for the psych consult, get the approval that I am “sane”, can come back for the treatment, and of course pay for it. The big thing right now is first having the psych consult. I asked if it can be done at home because it is really a hardship to continuously travel back and forth to California in time and money, but they said that I can’t. The psych clearance MUST be done here.  However, the clearance and the treatment cannot be done during the same visit and therefore, it would mean that I would have to come at least 2 times at the very least.  So… it is definitely going to be very expensive.

So… as I said… the first step is the psych clearance and to get that, I have to wait a bit.  They are very “booked” and although the doctor put in the recommendation and prescribed it to be done as an URGENT request, the soonest they really have is the end of September/beginning of October. The doctor doesn’t really want me waiting that long, so he is going to see what he can do about getting me in sooner.  After all… you know when doctors talk to doctors… they always manage to get patients in sooner.  However, that will also mean that I will have to come up with money sooner because I can’t just come back here for “free.”

So… I will really have to find money quickly too because without the funds, I can’t come back either.  So… it isn’t so easy either.  I was hoping to be able to see the psychologist and have the clearance possibly tomorrow before I went home this time, but they are totally booked and with the holiday being this weekend, there aren’t a lot of psychologists around.  Therefore, the doctors are seeing what they can arrange, but they doubt that it will happen.  It just stinks that I will have to wait and come back because I can’t have the clearance and the procedure the same time.  I don’t know how on earth I am going to afford coming back so many times. I also don’t know how my dad is going to arrange taking off so much from work because without him working, the business really suffers and will go “under.”  It also means that we don’t get any income or money into our family to pay the bills too.  So… it really complicates things a lot.

However, I still have to come back in about 3 weeks for the tube surgery too.  Remember?  They still want to put in that tube for me and see if they possibly can get some food into me and “buy” me time that way as well even though they think it will be totally unlikely that it will work.  Yet, they are wanting to try anything.  Even though they know that my entire GI system is dead, they are hoping that if they bypass the stomach and intestines (well actually put the tube low enough into the intestine), they might find a little portion that is viable and able to accept food.  But… their gut feeling is that it won’t work, but like they said… gotta go in with a “positive” attitude.  If it does work, then they will do a huge surgery and instead of having the tube going up my nose and through my stomach and intestines (to bypass it), they will have it just come out of my abdomen.  But, they don’t want to give me a major surgery that is unnecessary.  U know?  After all, surgeries are really dangerous to me, especially when any traumatic event can cause my disease to spread and surgery is extremely traumatic.

So… we are thinking that when I come back for the tube, they will do the psych clearance then.  I would have definitely liked to try the snail venom then or something to try to relieve me of some of this pain and such, but even these doctors said that if I had the clearance today and such, the GI team is not going to want to do their procedure the same time as I go for the snail venom and ketamine.  They want to do one thing at a time. So… it is also… which is more important to do first?  The tube which can potentially buy me more time because I need to gain weight because if I don’t… I am surely going to die because my levels are borderline as they are and can’t possibly drop any lower.  Or do I go for the snail venom and potentially try to lower the meds and such that are contributing to “killing” my organs and harming me in that way?  It is like they said… what came first… the chicken or the egg.  We just don’t know which is more important to do first.

If I went for the snail venom or ketamine, the damage is probably done to my GI system.  The organs are dead and most likely won’t come back.  But perhaps if I was able to come off the drugs, it would allow me to have the transplant because I wouldn’t “ruin” the new organs.  Also, there is a slight (but very unlikely) possibility that the organs are possibly able to come back in a very minute way if I could come off the drugs.  It wouldn’t come back in a major way, but it might come back in such a minute way that would allow me to eat a minute amount of food or allow me to gain even a slight amount of weight.  All this would help me gain weight and help me fight this disease better.  Plus… if I can gain weight… then I would have more options kinda open to me as well because I would be able to get the pump implanted (there would then be room in me), doctors wouldn’t necessarily be so scared to operate on me (I wouldn’t be so unstable and would be able to survive a surgery), and I would probably have more chances to get the transplant.  So… anything is possible.  In short, even if I can get in just a little bit of food that gets digested – it could be 10x better when it comes to getting on a transplant list.  Plus, the pain relief is super important – people in less pain/well controlled pain generally last longer, because their body and mind isn’t nearly as stressed.

So… as you can see everything is a big mess right now.  From what I can see… there are 2 big things that have to be done.  I definitely foremost need the transplant.  That is a MUST!!  Without that… I am definitely going to DIE.  Then, I also need the snail venom because that would give me the ability to stop or even lower all those horrible narcotics that I am on for my underlying neurological disease that can potentially kill my new organs (or at the very least continue to cause problems and kill my old organs).  However, all these treatments cost money and like I said before… that is something that I definitely don’t have and desperately need.  So… if you can think of anything at all to help me out or do anything… I would really appreciate it.  I know you have done plenty, and I can’t thank you enough for it.. but if you can continue to help me out, I would really appreciate it.  It really stinks how my life is so dependent on money.  I should have a money tree planted in my backyard.  That might be a simple answer to this problem.  LOL

But, we will see what will happen.  Tomorrow is the transplant team, so we will see what will happen.  I am just so glad that I am here.  It just stinks that it is located so far away.  Too bad they don’t have these doctors in New York.  But I guess it is like the surgeon said to me yesterday “That is why they don’t call it ‘Stanford’ for no reason!”  I just know that I am running out of time and running out of time FAST.  Something needs to be done and done fast or I am not going to definitely see the New Year.

I am so very worried because of the whole financial issue and the pressures on my family.  My dad travels back and forth with me to California and tries to do everything that he can, but there is only so much a person can do.  He would do anything to get me well, but there is only so much he can do.  His hands are literally tied and he knows it.  It hurts him so very much that he can’t “cure” me.  He would do whatever to get me well. He even told me that he would ‘Freeze’ me and never let me die.  He would never be able to handle it if I would die.  However, I am so afraid of what all this traveling is going to do to him because he can’t travel, be with me in California, and own a business at the same time.  If he isn’t in New York and working, the business is never going to survive.  Without him working, there is no business really going out, and therefore, there is no income being made for my family.  So… essentially… my whole entire family is suffering because of me.  I am so afraid that my family is going to lose the house and everything else because of me. They have done so much for me already and given up so much too… I don’t want them to lose the house as well.  It just isn’t fair what I am doing to them.

My dad has been working like a horse when we are home.  He works nonstop.  He works 7 days a week, holidays, etc.  He never takes a moments rest.  He is out of the house by 4 AM and doesn’t come home til at least 7 PM.  It isn’t like he is sitting behind a desk either.  He does physical work and driving all day long and therefore, I am really worried about him and worried that something is going to happen to him, especially since he isn’t a youngster. His 59th birthday is next week and therefore, I don’t honestly know how much longer he can keep up this pace without crashing and such.  He is so very tired that he is so ‘jumpy’ and everything.  I can’t blame him because anyone at that pace would be totally exhausted. However, I am just so scared that something is going to happen to him because if it did… I would NEVER be able to handle it.  I would never be able to deal with it.  I would never forgive myself.  Yet, he is doing whatever he can to help me and such because he doesn’t want me to die.  I can’t thank him enough for it because I don’t’ want to die either.  But I don’t want to hurt him either or the rest of my family in that matter.  My dad is my very best friend and my “hero!”  He is definitely the huge reason why I am here and without him… I definitely wouldn’t be here now.

My dad is so very important to me.  We have the best of times together.  I better love him, especially after what he did to me last night.  My dad snores like crazy at night.  It is bad enough that I can’t sleep at night because of the pain and because of my over all illness.  I just can’t get comfortable and not being able to sleep with a blanket doesn’t help.  The slightest touch will literally send me through the roof.  Anyway… my dad snores like crazy and I basically spend the entire night hitting him and beating him up because I can’t take the snoring.  It literally drives me up the wall.  Well… guess what?  He got me good last night.  He ended up giving me a good whack last night.  He did it in his sleep, as he rolled over and there I was since we are sharing a bed because it is a “king” and such.  I didn’t think it really made a mark or anything, but guess what?? When I got up this morning I saw that he definitely gave me a black and blue mark on my face.  Luckily, he missed my eye and it wasn’t ‘big.’ But… I still wanted to kill him.  My dad’s answer was “you shouldn’t have gotten in my way.” Of course he was kidding though.

My dad keeps saying how he hasn’t really slept here.  Meanwhile… he has really slept like a baby.  It has been me who hasn’t slept.  But he insists that from me waking him up all the time to turn over and such, it isn’t a “sound” sleep and therefore he isn’t technically “sleeping.”  I told him that he is getting “sleep!”  I wish I got the sleep he got. But I also told him that if he didn’t want me to constantly hit him and wake him to roll over… then he needs to STOP snoring.

Dad has really been wonderful though.  He has been taking really great care of me.  He even has ironed my clothes.  He never irons at home, but he has been ironing here.  Never thought he knew how to iron, but apparently he does know how.

Wanna hear something funny?  My dad had a difficult time going to the doctor today because we kept getting lost.  He kept getting in a “tither” about it too.  He kept blaming me and my GPS for not getting there and such.  Meanwhile, I told him “it isn’t us… it is him since he is the driver.”

What a way to end my night… just as I was about to finish this letter, the Wi-Fi connection in the building went out.  I immediately alerted the front desk and asked if it was just us or if it was the whole entire building.  Apparently it was the entire building.  So I was the “bearer of bad news.”

To top that off, no sooner did that happen, but the fire alarms in the building went off.  Never seen my dad jump so high. At 2:30 AM the fire alarms went off and I freaked out.  I asked my dad what to do, especially because we are on the 5th floor and it isn’t like I can get downstairs so easily since the elevator won’t work in a fire.  I tried to call the front desk, but of course the lines were all busy.  I asked my dad if we should evacuate, but my dad of course was not going to evacuate in his PJs.  So… we remained in the room.  We watched the fire engines come from the room and everything.  I managed to finally get through on the phone to the valet dept. and they said that we could remain in the room.  Thank goodness it wasn’t worse and we didn’t have to evacuate.  It could have always been worse.

Well… I am going to get going. Have a big day tomorrow.  I have had enough excitement for the day, especially now.  Please say a prayer that everything will go ok with the transplant team and that I will be able to get it.  I desperately need this in order to save my life.  I am literally watching my life disappear.  Like I always say… if you can please do anything or have any suggestions to raise some funds, please let me know because my life depends on it.  Thanks again for all your help.  You can’t imagine how much I appreciate it.  Looking forward to a better tomorrow… hopefully!!



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August 28, 2012



Well… another day has passed in California and of course more has happened.  So… I am writing another update to let you know all that is happening. There has been so much happening today and it really has been a bad day.  I do wanna talk… don’t get me wrong, but so much has been happening today and didn’t get such a great report today.  I am also not feeling well at all today either. I am annoyed with how I am feeling, annoyed with what is going on, annoyed with life, etc. I am just really tired with all that has been happening.  I think it is all starting to settle in what is actually going on. Before… It didn’t feel “real!”  I thought that it wouldn’t settle in til I got back to NY.  However, I think all that is happening… it is starting to take hold now.  So please… like I said… bear with me. ok? I wasn’t even going to write tonight, but I decided to do so because I thought it would might make me feel better, it might sort some stuff out, and plus I promised I would keep you all updated on all that has been happening.  So… had to keep my promise!!

So much has happened today… it really has been unbelievable.  When has something not happened?  I had the MRI today, which was a real disaster.  I thought I wasn’t going to make it through it.  I had gotten the “ok” from the doctor to proceed with it even though they weren’t 100% sure that it wasn’t metal.  They were pretty sure it wasn’t, but they said that if it “heated up to let them know about it.”  I made my dad come into the MRI with me because I was so nervous and I didn’t want to be alone.  Since I am on crutches and I can’t bring metal into the room, my dad was going to carry me into the room to put me into the machine.

What a “hero” my dad is.  He has always and always will be my “hero.”  I don’t know what I would do without him.  He always tries to help me out in whatever way possible.  He kept asking me “are you sure you want me in the room?” and of course I said “yes.”  They made him sign a release of course and they made him “strip” down of course because he couldn’t wear or have anything metal on him including money, jewelry, belt, etc.  I thought he was going to kill me for what I was putting him through.  Then… with all the banging that was going on in the machine…  I thought that he really was going to kill me because it was so incredibly noisy despite the fact that they gave him ear plugs to wear. My dad still blames me for the fact that we went to a concert when I was little to see NEW KIDS ON THE BLOCK and he insists that his hearing has never been the same since.  He insists that he has gone “deaf” since and blames me for it.  But… he has really been good about it.  I am sure though when we say that he can’t hear something later on though… he will say it is “my fault” because I took him into the MRI machine.

Anyway…. I had a really bad time with that.  I am really hypersensitive… due to my wonderful Autonomic Dysfunction.  I also have something in my back, which they don’t know what it is.  Despite the x-rays, they weren’t 100% sure it wasn’t metal but with my hypersensitivity being so much… I literally feel EVERYTHING because I am so sensitive.  So… I was ok on the quicker scans,  but when they did the longer scans, I really started to heat up.  It triggered whatever was in my spine (I have also vascular clips in my spine that in a normal person shouldn’t be a problem but in me… it could cause problems because of my extreme hypersensitivity.  Anything… even the most minute thing… it can cause a problem.  It is literally UNBELIEVABLE.

Anyway… when they were doing the longer scans and also the scans that were kinda with greater intensity, I kinda heated up because it triggered off some effect on the clips and/or from the piece in my spine that they left in.  It spread from my spine all the way up.  They had given me a ball to hold onto and if I felt anything, they told me to squeeze it and they would “pull” me out immediately.  I took it as long as I could, but I just couldn’t last anymore.  I thought it was going to “stop,” but with the longer scans, it just didn’t stop.  There was only so much I could take and with my autonomic dysfunction, once you trigger it off… there is really honestly no way of shutting it off.  So… when they triggered it off, it just got worse and worse.  I finally couldn’t take it any longer and when I squeezed the ball, they told me that I had like 1 minute left of this one scan and asked if I could last for another 60 seconds.  I knew how important these scans were and how much I came along already and therefore, I was like “whatever.”  I tried to last the remaining 60 seconds, which felt like an eternity.  They pulled me out and I just couldn’t cool down.  I had to literally pull off the “catcher’s mask” that they put on you and pull off all the padding/towels that they put around my head so that my head wouldn’t move in the MRI machine in order to cool myself down.  I was really having a hard time breathing too because once you start off the autonomic dysfunction, it makes it really difficult to breathe too.

Finally though, after I pulled off everything… I cooled down and broke into the chills.  Thank goodness.  I went back into the machine to finish up because I knew how important it was to do, but I wouldn’t let them put all those towels and padding around my head.  They told me that I needed to “keep my head completely still” and I told them that I would.  Anything was better than having all that padding because I didn’t want to heat up all over again!  U know? My dad was in the room with me too because he went into the MRI with me.  He got so nervous with everything happening, but unfortunately he couldn’t do anything to help me.

I did get some news though back from the brain surgeon and the MRI. I found out that it is laying on some of the nerves that really cause a lot of problems.  The doctor doesn’t know if it can be operated on though.  I am speaking more to him tomorrow though.  In the meantime, he is having me see a neuro-opthamalogist to see if he could possibly do something.  I will also be speaking more to the brain surgeon tomorrow.

I saw the Gastric Pacemaker surgeon today.  Everything that I was worried about… I kinda didn’t have to even be bothered about.  I was so very worried about what my dad was going to say and how he was going to “make” me go through with it despite the fact that it hasn’t been proven to work…. all because my dad wants me to get better so badly.  The only reason that we were really going through with the gastric pacemaker was because the doctors said that since I am so “bad” and out of really all options and such… they said to try it because even though it hasn’t really “worked” and they didn’t think that it would “work” in my case, they said it was still an option and therefore if I wanted, I could still go through with it so I could “try” it.  After all… anything is possible.  Right?

However… guess what?  When the doctor walked into the room, the first thing he said was “I don’t know why you are even talking to me about this.  There is no way in the world that this pacemaker is going to work.  Your GI system is totally ‘dead.’  There is no viable part really and there makes no sense to even try it.”  So… all that thinking about it really didn’t matter because the doctor wasn’t going to do it after all.  However, it wasn’t a worthless appointment because this doctor was also going to be the doctor who would be putting in the tubes if and when it did happen when I came back in 3 weeks.  So… I got to talk to him and discuss that with him as well.

When I come back in 3 weeks, the doctor wants to put me in the hospital and put a tube in me to see if possibly they can “buy” time.  They want to see if they can get any type of nourishment into me despite the fact that my entire GI system is completely dead.  Therefore, they will have me admitted into the hospital and they will put a tube in me.

The tube will go into my nose, down my esophagus and through my stomach and into my intestines.  It will not actually go “into” my stomach, but it will go through my stomach so that it “bypasses” it.  They want to put the tube in so that it reaches so low into the intestines that possibly even though all the intestine is “dead”… they are hoping that if they put the tube low enough into the intestine and bypass the stomach and most of the intestine that they might find a little viable part that could possibly “buy” me time.   However, they don’t think it is likely, but at this point… there is really no other choice and we have to do something because we are literally running out of time.

I am really going to die and die soon. If I was a male, they said that I would be dead already because at the level that I am at, with a BMI that I am, there is no way that a male could live.  Males can no way live below a 13. Females on the other hand are able to live a little longer because they can live with a little less fat.  So… they can live until they reach 12.  However, once they reach 12, it is impossible to live past that.  I am so borderline with that number that the doctors are really fearful for my life.  They said that I don’t have long to live.

So… they are hoping that these tubes would “buy” them time.  However, they are unsure if they would work.  It could really cause a lot of problems as well and that is why they are trialing it out like this instead of doing surgery and implanting them immediately.  They can very easily trigger off my disease and make it worse, trigger off the autonomic dysfunction, make a “bag” there and start a collection because the stuff can’t pass through, etc.  It is really bad with what I am going through, but we have to try something.  So… they are trying this out.  If I am able to tolerate this and it does somewhat work… I won’t be able to eat ever again.  They will surgically implant the tubes so that they come out of my abdomen and therefore, I won’t ever happen to eat or drink again.  It won’t be so great because eating and feeling “Full” isn’t just about receiving food.  You feel “full” because you taste the food and it goes into your stomach.  However, since I will never taste the food or have food in my stomach, I will never feel “full” again.  I will always be hungry and therefore, my stomach will always be rumbling, which will be really uncomfortable.  U know?  Plus… I don’t know what it would be like to go out and watch people eat all the time while I just sit there.  You know?  They told me that there are ways to avoid smelling the food so that I don’t get per se “hungry” but it still isn’t the same.  U know?  However, this is my only chance to “buy” time.

What stinks though is that I don’t know what is happening with the transplant.  I desperately need the transplant, as that is the ONLY thing that will save my life.  Despite how radical and how risky it really is… that is the only thing that will SAVE my life.  All the doctors even say that this is the one thing that I really need.  However, I have a big problem because I don’t know if I will be accepted into the transplant program.  Even though I need the transplant desperately in order to save my life, I don’t know if they are going to give it to me.  Due to my underlying neurological disease, which is extremely painful, I  am on a lot of drugs, which can eliminate me from the transplant.

This really stinks because I desperately need this transplant to live and because of my other condition… I can die because I need to take other meds to save my life from that condition.  I kinda can’t blame them in a way because they don’t want to give me organs that could be given to someone else when I might “ruin” them again.  But still… I don’t want to die either.  U know?  I am on all this medicine that I can’t do without for my underlying neurological disease especially since my underlying neurological disease is known as being one of the most painful diseases that you can possibly have.  Doctors have said that “If Hell is a Medical Condition, it would be known as my disease.”  Experts liken the pain response to that of “an engine revving out of control.” On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation!  So… I don’t know what is going to happen because medicine that is best for my neurological disease is worst for my GI system.

I am so very scared that I won’t get the transplant because without the transplant, I am surely going to die.  I desperately need it despite how risky it is.  I asked the doctor what would happen if I failed the tubes that they put in me when I go into the hospital in 3 weeks and then they don’t give me the transplant either.  The doctor told me that “I will end up remaining the way that I am.”  So I said to him, “So you are saying that I am going to die?”  The doctor didn’t know what to say except “Let’s not think that way and hope that the transplant team doesn’t turn you away and hope that the tubes work so that they buy you time.”

I am so very scared because nothing in the past has worked and the doctors know deep down too that the entire GI system is dead, as there is no viable part.  However, they are doing it in “hope” that I will be able to live and buy some more time.  The doctors I think know deep down too that I will be rejected from the transplant team too, but they are still continuing to send me through the process.

I will know for sure what will be happening on Thursday with the transplant.  I guess Thursday will be the BIG DAY!!  It will determine whether I will basically live or die.  I will be seeing the whole entire transplant team and they will be making the decision as to whether or not I will be a transplant candidate.  I just pray and hope that I will be because this is my only chance of living.  I am so close to death that if they don’t accept me, I am surely going to die.  I am so close to that magical 12 number that I don’t have long to go.  I know that if I don’t get the transplant that i won’t be long before I will die because of how close I am.  The doctors know this too and so does my dad.  I am so very scared.  It isn’t fair that they are just going to let me die because if they give me organs it might happen again.  Even if it does happen again, at least I have more time to live.  U know?  You never know during that time what can come out in medical technology.  Maybe they could find a cure to my underlying neurological condition during that time and they would be able to stop those meds.  You never know… anything is possible.  So… I at least want a chance to live.  You know?  I just hope that I get that chance, but I won’t know if I will be granted that chance until Thursday morning.

When I was at the hospital today, we saw a helicopter come and land on the hospital roof.  It was a helicopter delivering organs for another person for a transplant.  I was like “I can’t wait for that helicopter to be my helicopter with organs for me.”  I thought maybe that was a sign that things will be ok and that things will work out, but in my life… things never work out.  I am trying to be positive, but it is really hard. I am really scared.

O guess what?  When I went to the pacemaker doctor, I told him my fears about the going and getting the tubes.  I told him that I was scared that I was going to get the tube and then it was going to start off the autonomic dysfunction or cause some other problem and I wouldn’t be able to tolerate it.  I am so used to the doctors in New York and how you have to wait forever for them to call you back or if you have a problem in the hospital, they kinda make you “suffer” and make you stay like that for awhile because first of all it takes them forever to get to you and second of all… they only do what they want to do.  They barely every listen to the patient because they think that they “know” best and know it all.  U know?

So you know what he said? He said that “this is why you are here at Stanford and this is why they call it Stanford Hospital.  They don’t call it Stanford for no reason.”  He told me “What other hospital has doctors meet with you when they don’t usually see patients (this doctor came out of surgery just to see me)?”  He also explained to me how thorough he went through me records, as he spoke to my entire “team” of doctors before he came into the room to speak with me because he didn’t want to come into the room and not know what to say.  He said to me, “What other place does that?” The doctor assured me that if I ever needed something, they would come and talk to me immediately and how they are always reachable.

I must say that Stanford doctors are definitely one of a kind.  They really bend over backwards for you.  The doctors are really amazing and there are no other doctors like them.  I really love the doctors here and feel extremely comfortable with them.  I wouldn’t want any other doctors except them.  The only thing that stinks is that they are located across the country and they are such a hardship to get to. You know what?  Even their office is open during hours unheard of.  They open at 7 AM everyday and don’t close til 7 PM.  I never heard of doctors starting so early or closing so late every day just so they can help patients and get back to them.  They really are amazing.

People are wondering why they don’t do the “tube operation” now.  First of all, you can’t do everything on the drop of a hat.  Everything takes time.  There is planning and waiting in no matter what you do.  After all, you aren’t the ONLY sick person in the world.  In addition, my doctor wants to be the doctor in “charge” and such when I go into the hospital and my doctor is only on the inpatient service for a week every 3 weeks.  So… I have to wait for him to be on the “inpatient service” in order to be hospitalized and have this done.  I wouldn’t want any other doctor also to do it because my doctor is familiar with my case and is supposed to be the BEST.  Second of all, even though it will cost additional money to travel back and forth to California, we can’t stay here forever.  We do have to come home because my dad has a business.  We don’t have enough money that will enable us to stay here longer than our planned trip’s length, as we are scheduled to come home this weekend.  My dad has to go back to work because by him not working, it is really taking a HUGE toll on our entire family.  By my dad not working, no income is being made and bills are not being paid either.  Therefore, since we are having financial problems as it is… we really can’t afford to have more. We can’t afford the treatments that I am having as it is… we really have to be careful and save enough money so that we can have more treatments… even if it means waiting and risking my life.  After all… there isn’t a money tree in the backyard giving us an unlimited supply of money.  If my dad doesn’t work, then his customers go someplace else and my dad’s business will crumble.  It will only then hurt my family further because we will not have money at all… money to pay our bills… or even that little money to pay for the little treatment that it can do so now.  So… my dad really has to go back to work so that he can catch up on his work and so that we can make some more money so that we can come back and so that I can receive more treatment.  Even though this money is not nearly enough money that we need… it is better than nothing.  After all… no one is going to do anything for “free” and I can’t stay in California and have treatment if there is no money.

So… we have no choice but to return home.  That is also why it is so urgent and so imperative that I raise some funds and get help.  I desperately need help from others to help me raise money because we can no longer afford treatment and travel to California, which can potentially save my life.  We are literally scraping the bottom of the barrel already.  So despite everyone thinking that it would be cheaper and easier if we stayed in California and had everything done now, it is literally impossible.

Tomorrow is another doctor appointment.  I have the ketamine doctor.  They are trying to set me up with doctors who manage ketamine and such here so that they can better manage me.  Plus… no matter what they do, it is really important to get ketamine because that is one drug that could really stop my disease from spreading.  In a high enough dose, it has been proven to put the neurological disease (at the very least… it could very well also put the GI problem too) in remission.

However, the amount of ketamine that I require is not FDA approved, as I am really sick and it is way too much.  The only hope for that is to go out of the country to Santo Domingo and get put into a really high intensive ketamine coma there.  It is really risky and extremely radical.  It is also extremely expensive too, as it will cost nearly $100,000.  It is something I definitely need, but I also have to wait for the approval from the IRB board.  They were doing it in Germany and Mexico, but they had to stop it due to complications and deaths.  My doctor has been working on getting the approval to send patients to Santo Domingo, as he is trying to set up his “Study” there.  He is almost done, but he is still waiting for the “approval.”  So… we need to wait for that in order for anything to happen.  Then… we also have the financial issue too.

In the meantime, I have been undergoing ketamine comas in New York.  It is not nearly as intensive and really doesn’t do that much.  It does get me out of pain for the day though and when I am suffering 24/7 and never get a moments rest… I will take any “break” I can get.  The pain is relentless.  It is so much suffering. You can’t imagine how much it hurts.  I don’t wish this on my worst enemy.  However, the coma is also hopefully stopping the disease from spreading to a point since I am getting some sought of ketamine dose.  I am also supposed to be going to Florida to get a even higher ketamine dose, even though it isn’t as high as the dose I will be receiving out of the country.  It is higher than the one I get in New York though.  So… it might help a bit more.  I desperately need this ketamine because it is causing my entire body to go haywire and literally killing me because it is killing and affecting everything that is on the nervous system… which is essentially everything.  Yet, even the coma in Florida is expensive and not covered by insurance.  It will easily cost me at least $20,000 and that doesn’t include the boosters that will be needed afterwards.

So… at least when I go to these doctors, they will be able to take care of me as well.  Thursday like I said before though is the day I meet with the transplant team.  Please say a prayer, cross your fingers, do whatever… I just hope that I won’t be turned away because this is my only hope and I don’t want to die.  I am so very scared.  I will also have an appointment with the GI doctor afterwards.  I am so scared to find out the end results… but it is something I need to know.  Only one more day til I find out my life sentence… whether I live or whether I die.  I am so scared.

My dad hasn’t been handling it very well.  Even though he has been trying not to “show” it… he really is showing it.  He is really jumpy and agitated.  I can’t blame him because he doesn’t want anything happening to me.  I am so scared not only for me because I don’t want to die and because I am too young to die, but I am so afraid for my dad too because I know that if something happens to me, my dad would never recover.  My dad would literally do anything and everything to make me better.  He keeps saying how he would “take away this disease and have it himself.”  However, I tell him that if it was him… he wouldn’t be able to handle it.  I see the pain in his eyes and I see how much he wants me to get well.  I know it must kill him to know that whatever he does… his hands are kinda tied.  I know that it must kill him to know that he might be forced to “bury” me before he goes.  After all, a parent is supposed to die before their kids… Not the other way around.

My dad even has it planned that he is going to “freeze” me.  He really doesn’t want anything to happen to me and it is affecting him badly.  He tries not to show it and tries to make me laugh and smile despite all that is happening still.  My dad can be really annoying because he is constantly “bothering” me, but I know he is just “playing around” and trying to make me laugh and smile.  My dad is the best. He is not only my dad, but my BEST friend. He makes the sun come out and things look bright even on the most gloomiest day.  I don’t know what I would do without him.  That is why I tell him that I am basically doing this for him.

Even though I want to live… don’t get me wrong… I am tired.  I am tired of suffering, I am tired of being in pain, etc.  I just honestly don’t know how much longer I can continue on.  However, I am continuing to push because I don’t want to leave my dad.  He is way too important to me and I know how much I mean to him.  I know that if something happens to me… I know he would never take care of himself.  I really don’t want anything to happen to my family… especially my dad… and that is partially why I am scared about the money issue too.  I know how badly we can’t afford this.  Even though we have made “cuts” in everything, even my treatments, we can not afford my treatment much longer.

The cost of the doctors, medications, procedures/treatments, traveling expenses, etc. are way too great.  Even if the insurance does pay for the stuff, which they don’t pay for all the stuff, we still have copayments and deductibles that add up.  We easily pay over $25,000 a year just in that, which doesn’t include all the medications, doctors, treatments, etc. that are not covered at all by the insurance companies, which are a lot too because I do take quite a lot of meds that are gotten out of the country as well as some of my treatments being considered “experimental.”  I also see top specialists that don’t always take my insurance, but it is important to see them because there are really no other doctors that can help me.  I have been to countless doctors before, but I am way too complicated and such.  I have to travel all over the place such as to California and to Florida to see top specialists because not all doctors know about my condition.  All this all costs money… money that I don’t have.

I don’t know what we are going to do because the “well” has run dry and we basically don’t have any money to continue me receiving treatment.  Without treatment and traveling to California and Florida so that I can receive the necessary treatment, I am surely going to die.  I desperately need help from other people because otherwise I am definitely going to die.

It just stinks how my life rests in the hands of other people.  It would kill me if my parents lost the house or the business because of me. They have done so much for me and given up their lives enough for me.  They have paid out all that they can afford and are heavily in debt.  We are so much in debt that getting a loan is basically impossible.

Therefore, it is imperative that I get help from other people.  I just don’t know what it is going to take or how to go about doing it.  I wish I knew the magic secret because despite all the times I have tried to get this “help,” it never works out.  If anything, it is good for a day, but it quickly dies out.  I really need media attention such as on the news on TV or something.  I see other people get their stories on TV and such, but I can’t get mine addressed.  I just don’t know how all these other people raise so much funds to allow them to survive when they need to.  I have tried countless ways to get help such as make websites, write to the media, write to famous people, have flyers, etc. However, nothing has really come about.

It has gotten to the point though that I am really weak and I really need someone to “take over” for me.  I really have done all that I can do and really need to hand over the “reins” to someone else because I am too weak and too sick to continue “fighting” to get attention to my cause.  I desperately need this attention and desperately need this money…. yet I can’t find the strength anymore to “fight” for it.  If anyone can help me… I would really appreciate it.  If you can possibly do anything, I would really appreciate it.

I am really thankful to the hotel staff that is here.  They really have been wonderful.  With everything that has been going on, they have really made a big difference.  It really is great how they have made my dad and me feel so “welcome” here.  We have stayed here in the past a lot and they all know us.  So… it is so nice that wherever we go, ether it is just walking downstairs, going for breakfast, going to get the car, etc. people are talking to us.  They are always asking us “how we are doing,” “how things went,” or even saying that they are “praying” for us.  It really makes a world of difference to know that they care and to have them express their concern, especially after the types of days we have at the hospital. It really makes having those “bad” days turnaround a bit.

One good thing about where the hospital is located is that the weather is PERFECT. I don’t get to go outside a lot because of my illness and how hypersensitive I am.  The slightest temperature difference, wind, humidity, etc. really HURTS me.  Even the sunshine has the potential of “burning” me because I am so hypersensitive.  This disease that I have is just horrible.  Everything that people take for granted… I can’t do.  I can’t even sleep with a blanket or take a shower because of how hypersensitive I am.  Anyway… where the hospital is, I finally get to stay outside because the weather is PERFECT for my illness.  The temperature is at a perfect degree that I can withstand, there is no wind, and there is no humidity.  It really is gorgeous.  Therefore, I love to spend some time sitting outside with my dad, whether it is after my appointments or in between appointments.  It really is something too because where the hotel is located, which is San Francisco, it is totally different weather than in Palo Alto, which is where the hospital is located.  So… not only do they have the BEST doctors, but they have the best weather too.  I wonder if it ever rains because it hasn’t rained yet.  Plus, in order to get from each wing in the hospital, you literally have to walk outside even though there are overhangs and such.  It really is beautiful at the hospital.  No wonder they let the patients out during the day.  It really makes a difference and makes you feel so much better.

Well… going to get going.  It has been a long day and really not feeling well.  Thanks again for all your encouragement and support.  Please say a prayer that I will be able to get the transplant.



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August 27, 2012


Well… one day down… I made it through the very first day of doctor appointments.  My head is spinning with all the information that I was given.  I have seen so many doctors today and did so many things.  I have so many things to sought through.  In fact, I didn’t even receive the greatest news either. However, I don’t think it has “sunk in” because it really hasn’t “hit” me yet.  I don’t think it will “settle in” until I come back to New York because as of right now, it just doesn’t feel “real!”  Even though I didn’t get such great news, I really don’t feel like it is really happening.  You know what I am saying?  I don’t know why this is the case, but it is.  Maybe it is because I am able to “pretend” it isn’t real since this isn’t my “real” life or how things really are in my life.

 But anyway… I really have a lot to digest.  Perhaps that is why I don’t think it is so “bad” and why it all hasn’t “settled in.”  I have been through so much today that maybe between going through so much, it just has been too much to bear.  U know?  I have seen three doctors today including the brain surgeon, autonomic dysfunction/neurologist, and transplant doc.  I have gone for countless tests as well including blood tests, x-rays, etc.  I have also been set up for even more tests and to see other doctors, which are tests and doctors that I was not prepared for.  I don’t know what I am going to do in a way because for the doctors that I am not prepared to see, I don’t have all my medical records printed out for them.  My medical record is like a book and before I see each and every doc, I always print them out from home.  This way I can give each and every doctor a copy of my records so that he/she knows what is going on.  However, since I was not prepared to see these new doctors, I didn’t bring extra copies with me.  I hope it will be ok. But even if it is ok, it would really be beneficial if I had them since I am so complex and complicated and so that they could better understand me.  I really wish I had some extra copies with me.  But… can’t cry over spilled milk, right??

 What a huge and trying day it has been for me. It started out with going to see the brain surgeon.  The brain surgeon doesn’t know if he is going to operate, despite the fact that I have the brain tumor on the pituitary gland. I have the other complicated problems, and I am also considered extremely high-risk.  In addition, brain surgery isn’t an easy task to begin with either.  Therefore, he doesn’t know if it is worth taking the risk because he doesn’t want to do more harm than anything else. He doesn’t want to spread my underlying disease, which can very well happen because my disease spreads through “trauma” and surgery is very traumatic.

 However, he said that he wants to see exactly where he stands with the tumor before proceeding.  In the previous scan that we showed him, the tumor was 10 mm.  It is considered somewhat big, but unless it grew, I don’t think he is going to touch it.  Even though I am having a lot of difficulties such as double vision, headaches, etc. he doesn’t really want to touch it unless it has “grown.”  Therefore, he wants me to get another scan performed so that he could compare it to the one that was already taken.  The only thing is that we don’t know if this can be done.

 I have had surgery in the past because I had a dorsal column stimulator placed in me.  It had failed me and therefore, it had to be removed.  Well… when the surgeon removed it, the surgeon had left something in my back.  We don’t know what it is, but there is definitely something back there.  It doesn’t take an “Einstein” to know that there is something back there because you can see it right through my skin.  It literally protrudes right through my skin from my spine.  However, we don’t know what it is and therefore, if it is metal… it would mean that I can’t go for an MRI because you can’t have an MRI if any metal is in you.  If it is metal and I went for an MRI, it could easily heat up and melt away my spine since it is located right on it.  We have called up the original surgeon who performed the operation to ask what was left in my spine, but he insists that he “personally did the operation and didn’t leave anything whatsoever in my back.”  Even when my doctor (internist) said something, the surgeon’s response was that he “personally did the surgery and it is very unethical for another doctor to say something about it.” However, the surgeon didn’t even want to see me to see what we were talking about… so you go and figure it out.  So… we just don’t know what to do because we have no idea what it is.

 Therefore, since we don’t know what was left in me, I have had countless x-rays and scans to try to figure out what was left in me.  However, no one can figure out what it is.  The brain surgeon that I saw today sent me for another x-ray today so that he could see if he could tell if it was metal or not, and this way he would be able to see if I could go for the MRI, which is something I desperately need.  I definitely need to go for the MRI because that is the only way to really know what is happening with the MRI and to know if surgery is going to happen.  If I can’t go for the MRI, the only other scan that they can do is a CT scan, and that won’t be good enough to let us know if surgery is warranted.  CT scans aren’t sensitive enough and unless the tumor grew really significantly, it won’t show anything.  It is like comparing apples and oranges.  So… I am in big problems.  Hopefully, I will be able to have the MRI.

 I did have the x-ray taken today and I am awaiting to hear from the brain surgeon what the results are.  I really need to know ASAP what is going on because I have the MRI scheduled for tomorrow.  Originally, they wanted me to have the MRI scheduled at 8:30 at night. Can you imagine?  I never hard of people scheduling a scan so late at night, especially when it is over an hour long.  But then again… nothing surprises me with this hospital because they really bend over backwards for patients. They really do anything and everything for their patients.  I never saw anything like it. These doctors are really the BEST.  The only thing that stinks is that they are on the other side of the country.  When I explained to them that I can’t have the scan at that time because I can’t “walk” at that time, as I get progressively worse as the day goes on and by the late afternoon I am completely “gone”, the hospital really went out of their way and scheduled me at an earlier time.  However, it was of course all dependent on the fact that the piece in me was not “metal” because I can’t go for an MRI if it is.  I called the brain surgeon to ask him what the results were and to ask for him to call me back, which he said he would, but I haven’t heard from him as of yet.  I guess I will have to call him first thing in the morning because otherwise I don’t know what to do about the MRI because like I said before… I can’t go for it if the piece if metal.

 The doctor also ordered me to have more bloods taken, so I had to do that as well.  But, I had to wait til after I saw the other doctors that I had today because I had no other time to do it beforehand. Luckily I did that though because all the other docs had me take bloods for them also.  By the time I had all the bloods taken for all the doctors, I had to have about 15 vials drawn.  I thought I was going to vomit because I had so much blood drawn.  Even though it appears that I have such “good” veins, my veins are really fragile when they enter them.  Plus, it isn’t so easy on me because it is so painful.  I am extremely hypersensitive and therefore, a simple needle stick is like someone sticking a knife in me.  But… I had no other choice because it had to be done.  So… I had to grin and bear it.

 I then had an appointment with the autonomic doc/neurologist.  He didn’t like what was going on. The doctor wanted to put me into the hospital and give me IV immediately because he said that I was extremely dehydrated.  He said that something was wrong with my “plasma” and that it really needed something.  I am not quite sure what was wrong with it, but I needed something.  However, in order for this to occur, I would need to be literally knocked out in order for this to happen because of the pain that would occur from the “line” that they were putting in.

 So… the doctor is trying to schedule something before I go home, so that I can get the stuff I need and be knocked out.  The thing is that it isn’t such an easy task You have to usually “wait” and if you are going to be “sedated” in the way that I am because the team that I need to have is usually “booked,” especially when I only need to be sedated to put a “line” in. But, the doctor is doing whatever he can to accomplish this.  He told me that he will get back to me within the next day or two because he wants this to happen.

 The doctor also set me up with another doctor to see.  The doctor is known to do ketamine, which is good because I desperately need ketamine with my underlying neurological disease.  Ketamine is the best thing for me and in a high enough dose, it can potentially “cure” me.  Of course I can’t get it in the United States because it isn’t FDA approved at that level and that is why I am waiting to go out of the country, but I do get it in a much lower dose here in the country.  I have been getting ketamine comas every other week in NY, but it is nothing compared to the dose that I require.  However, at least when I am in the coma in NY, at least it is 1 day out of pain… which is something I would gladly take, even though it comes back once I wake up.  Anyway… it is so good that they do ketamine here because it is so very important to especially get ketamine when they are doing anything “traumatic” to me so that my disease hopefully doesn’t spread further.  So… hopefully whenever I go for something, I will be able to get it to prevent it spreading. U know?

 The doctor also saw how dehydrated I am and how I am not absorbing anything.  That is because my GI system is basically “dead.”  Therefore, we need to do something to help me. The doctor prescribed me pedialyte in hope that it will help me.  So… I have pedialyte freezer pops.  He is hoping that since they dissolve in your mouth, hopefully I will absorb something from them. I told them that I always drink GATORADE, which he was happy about.  But, he told me that with my condition, I can’t have sugars.  So… that is why pedialyte is probably so much better for me. So… we will see if it gets better with taking that.  He said that I don’t have to get the whole thing down, but he will take whatever he can get.

 I have to be so careful what I eat because I can’t have sugars and I can’t have too much fat even though I am so thin and desperately need the calories.  Fats are the worst for me, as they really “plug” me up.  They want me to have as much carbs as possible, as well as proteins instead.

 I then went to the final doctor for today, which was the transplant doctor.  I was late to him because the doctors here take their time with you and don’t chase you out.  They keep you and let you ask every single question you may have.  They never think that any question is a “stupid” question.  I never saw anything like it because if I was in NY, you know that I would clearly be on a time schedule… as I would definitely be in and out of the appointment in no time because they barely take anytime whatsoever with you.  These doctors are really amazing.  I am like literally in each appointment with each doc for 2 hours each… no joke.

 Anyway… since we were running late to the transplant doc, I was so afraid that the doc wouldn’t take us.  After all, if it was NY and we were late, they would definitely say TOO BAD!!  So, I had the doctor’s office that I was in before call over and tell them that I was “held up” and I was on my way.  This way the doctor knew that I was on my way and knew that it wasn’t my fault either.  But guess what?  The other appointment was in another building of the hospital.  So you know how I got there?  We took a golf cart there.  I couldn’t believe it.  When my father told me to get on the golf cart and it was going to take us there… I thought he was honestly kidding me.  But, he was apparently not.  This hospital is really amazing.  They don’t make you walk from place to place at all. They try to make it as “Easy” for you as possible and therefore, they transfer you on “golf carts.”  It really is great because it surely beat walking.  U know?

 Well… I went to the next doctor and I am literally in love with my transplant doctor even though I didn’t get the “best” news.  First of all, the doctor told me that I am lucky to be a female.  He said that if I was a male, I would definitely have been dead already. He also said that he is deathly afraid for my life because I am borderline ready to die. He basically told my father that if I drop anymore, I will die.  I can’t afford to drop because according to him, I will definitely die.  If I was a male, the lowest you can drop in BMI is 13.  Anything lower is death.  There has really been no one that has lived lower than that and therefore 13 is “death” for a male.  So… luckily, I am a female because I am lower than that, as my level is 12.6.  Females have a little more wiggle room, as they can live longer with less “fat.” They can live until they drop down to 12, but anything lower than that… it is certain death. So… with my level being 12.6… it really is dangerously low and the doctor is extremely afraid that I am going to die.  He said that “it is very possible that I can die anytime and if I drop any lower, it is extremely dangerous.”

 When my dad heard this, he kinda went bizerk. I can’t blame him because  I am his daughter.  I tried to make the “best” of the situation, but after my dad heard this… he didn’t really want to hear anything else.  He really was in a “bad” mood afterwards.  I started saying how “I will be ok” and how “At least I have a good attitude because attitude plays a role in everything.”  Even though the doctor agreed that having a good attitude definitely helps you, my dad didn’t want to hear it.  As far as he was concerned, I was going to die and something had to be done.

 The doctor said that something has to be done and done urgently because I am literally dying. He said that I can very easily die at the state that I am in now. If I drop any lower, he said that it will be “certain death.”  He told me how desperately I need the transplant, but we have some huge issues with it.  We don’t know if I will get it in time and it is also not a quick and easy process.  It is lengthy process and they just don’t give it to everyone.  He is afraid that due to my underlying illness and me being on all those medications, especially the methadone and such, he is afraid that they won’t give me the transplant.  He is afraid they won’t give me the transplant because I can very easily kill the new organs like these organs died.  I am on Methadone, which is the WORST medicine to be on. Unfortunately it is the BEST medicine to be on for my neurological disease though.  Yet… it KILLS your GI SYSTEM.  So… I am literally put between a rock and a hard plate.  So… although we are really hoping that I get the transplant, the doctor is afraid I won’t get it because of this.  I am meeting with the transplant team later on this week and will know more, but he is very afraid about this very issue.  If I don’t get the transplant, I will surely die.  It is like I am screwed either way because I desperately need the transplant to live and I can’t come off the medicines either.  I am so very scared.

 In the meantime, the doctor wants to put tubes in me.  However, it has to be done in the hospital and therefore, I will have to return to Cali in 2 weeks to have it done.  It will hopefully “buy” us some time, but he doesn’t even know if it will work.  He highly doubts it, but it is something we have to “try” because we have to try everything to “buy” us time because I am quickly running out of time and quickly dying.  The doctor only wants me to do it when he is running the inpatient service, which is one week every 3 weeks.  So… he is making me come back in 2 weeks to have it done.  I don’t know how on earth I am going to afford all of this.  I really gotta find a way because between this and everything else, I don’t know what is going to happen.  My dad wanted me to go into the hospital this week to have it done, but it really wasn’t enough time between the holiday being here and how I am feeling.  I am feeling worse than ever and therefore the doctor didn’t really want to do it when I am doing this “poorly” either because it will wreak havoc on my illness too and if it is already causing me lots of problems, it will be worse. He is hoping that by waiting a while, I will be able to have some ketamine, which will “calm” it down a bit too because the tubes are not comfortable.

 The tube will literally go in my nose and bypass my stomach and go into my intestines.  The doc said that he would do it under general anesthesia so that I don’t feel it.  However, we don’t even know if it will work.  They will then try putting some food in it as well and see if I can tolerate it.  However, since my entire GI system is dead including my stomach and intestines, we don’t think I am going to tolerate it.  But, we have to try.  We are afraid that even though it is bypassing my stomach, it is still going to be intolerable since my intestines are “dead” as well.  The intestines don’t move and therefore, the food will probably become stuck.  That is the worst feeling because it forms a “bag” there and I get so distended.  It is like I am “pregnant” and it not only makes me feel uncomfortable, but it also causes my underlying neurological disease to act up and spread because of the “trauma” to my body.  The doctor said that we would “try” it and if I can’t take it, we will stop it.  However, if I can tolerate it and such, he will then do surgery to permanently implant the tube so that I won’t have it coming out of nose anymore.

 I really don’t want the tube in a way though because that means I will NEVER eat again.  Since it bypasses my stomach, I will kinda always be hungry.  Since you are kinda “satisfied” and “full” by tasting the food and by having the food in your stomach, I will never have that feeling because I will never have another morsel of food in my mouth and in my stomach again.  Therefore, my stomach will always have stomach pains and have hunger pains.  Even though I might be fed through my intestines, I still won’t be “full” or satisfied because of this.  So… it could be quite unpleasant… u know?  I don’t want to live like this.  Plus… whenever I go out with friends or something, I will only be able to “watch” other people eat. I will never be able to eat again.  It will only make me more hungry.  The doctor said there are ways to avoid the “smell” of the food so that it doesn’t make me so hungry such as putting mint Vaseline and stuff under my nose, but still… it isn’t the life that I want to lead.  I just want to be NORMAL.  U know? 

 This is definitely not the life that I want to live.  Wanna hear something funny though?  The doctor asked me about one of the injections that they prescribed to me known as OCTREOTIDE.  I told them that is one drug I am no way going to take EVER again.  The doctor started to laugh and asked me why I was saying this. But, it was as if he knew exactly what I was going to say.  I told him that it was the most painful injection EVER.  It is like fire being put into you and it even has the name of being “liquid fire.”  Plus, it makes you so very itchy too.  When I took it, I literally hit the roof.  Even with Benadryl… it didn’t do anything to lessen the side-effects.  It wasn’t like it really did anything to “help” anyway… so it was definitely not worth it.  The doctor definitely knew where I was coming from and therefore, he didn’t press me for it. Thank goodness.

 So… now I am basically up to God’s hands.  I really need the transplant and it is up to him to give it to me.  I am really hoping that they give it to me.  They told me how they usually do about 2-3 transplants a year.  I asked how successful they have been, but they told me that the last one that they did, which was last year, happened to fail.  It wasn’t what I wanted to hear, but it is life.  They are the only hospital really to do the transplant and then put you on anti-rejection drugs that are not “steroid” based, which is good.  We were also told that I would have to be here for a while after the transplant until I am “stabile.”  I don’t know how on earth we are going to pull that off.  My dad really needs to be able to work and yet, someone has to be able to stay with me.  It doesn’t necessarily have to be my “dad” who stays with me, but someone definitely has to be with me.  Even though I would really want my dad with me, I know that my dad can’t stay with me because he has to work too.  I will be here for a month at the very least to a couple of months and it will be extremely expensive.  I have no idea how on earth we are going to even afford this.  IF my dad can’t work, the business is definitely going to go under and therefore, we will lose everything because we will have absolutely no income whatsoever. So… we really have to find a way to affording this transplant, as well as a way of getting someone to stay with me.  Everything is just so complicated.  When it rains, it certainly does poor.  I don’t know how on earth this is all going to work out.

 I asked the doctor if I can remain at home until the transplant becomes available, but he said that it is all up to the “team” and I have to discuss it with them when I meet with them.  It all depends on how long the organs can be viable because they can only be viable for so long.  It also depends how fast I can get here when I get the page.  I told him that I think I would be able to get here in like 8 hours, but I doubt it will be doable.  I know that anything that would make it “easier” for me and that will enable me to live a more “normal” life until the transplant will not happen.  U know?

 So… that is my life in a nut shell for today.    A lot has certainly happened for today.  I am in so much pain and so very scared.  I don’t know what to do and don’t know what is going to happen to me.  I am so very scared.  All I know is that I didn’t get the BEST news today and that I desperately need something to be done and done quickly because I am running out of time. My dad and I have so much on our minds to think about.  I know my dad has so much on his mind too because not only is he so “jumpy” and not able to really be talked to, but it took him so long to get home from the hospital.  We have been to and from this hospital so many times already and yet, he kept getting off the route and parkway saying we were going the “wrong way.”  Meanwhile, we were going the “right” way, but he said that he never saw this area before.  You know how many times we passed this area before since we have been back and forth to the hospital so many times already?  He just couldn’t remember and recognize the way home.  I can’t tell you how many times we had to U-turn around because he thought he was going the wrong way.  It even got to the point that he was calling the GPS a “liar.”  Yet, even though I knew and saw that he had so much on his mind, he still was trying to cheer me up in the car and make me “smile.”  He always likes to joke around and everything just to make me laugh and everything. He never likes to see me upset.  So… even though he can be very annoying at times, he does try to make me happy.

 I said to my dad though later on tonight “You are so lucky that I am a girl.”  My dad said “So are you!” I told him though that “It really doesn’t matter to me because the only real reason that I am trying so hard is because of him.”  I am honestly tired of suffering. I am tired of fighting. I honestly don’t want to die, but I don’t know how much I can go on.  I don’t know how much “fighting” power I have left.  But, if it wasn’t for my dad… I can tell  you this much… I definitely would have given up a long time ago.  I just don’t want to hurt my dad because I know how much it means to my dad. I know if something happens to me, my dad would NEVER recover.  I never want to hurt him.

 Tomorrow is another day.  I have an appointment with the stomach pacemaker and for the MRI.  I don’t know if the MRI is a definite though because I still have to hear if I have “metal” in my back.  If I don’t… It is like an 1 1/2 hour scan.  I don’t know how I am going to tolerate being in the “tube” for that long because it is a “closed” MRI.  I can’t sit still because of the pain and I don’t know how I am going to manage to sit still for that length of time.  I asked if they had any OPEN MRI’S but they said they only had the “tube” MRIs.  I am not claustrophobic, but I hate being put in them.  it is really freaky.

 I have an appointment tomorrow with the stomach pacemaker surgeon, and I don’t know honestly why I am going.  All the doctors insist that it really has “poor” results, but I am going because it is still an available option.  However, even if it does work, it will only work on the stomach, so I would still have the issue with the rest of my GI system being “dead.”  It probably is useless to get because it hasn’t been proven to work, but they said that they would do it since there really isn’t anything left to do.  However, it can very easily spread my underlying disease too because of the surgery and then the pacemaker that is implanted can spread it as well since it is very traumatic and I don’t really have any cushioning.  So… I am probably just wasting my time going tomorrow, but it is something I need to check out for myself.  Otherwise I would always be wondering if I checked out ALL my options even though the docs said that it wouldn’t work. U know?

 Well… gonna get some rest.  I really need to start sorting things out.  I need to figure out how I am going to pay for all this as well.  If anyone has any ideas, please feel free to let me know.  I am desperate. 

 I wanna thank everyone who has been so helpful so far.  It is because of people like you that I continue on and continue to push onward. People think that I am really strong… but in reality… I am only strong and get my strength because of people like you. Without you and other people, I definitely wouldn’t be here today. You really give me reason to continue on. It is a really difficult and scary time in my life. However, you and others help make it easier. You give me support and encouragement to push onward and to overcome those difficult hurdles… you give me the encouragement to continue to strive to survive and I can’t thank you and all those who have supported me enough. I love you guys and forever will be grateful!

 Love always,



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August 26, 201



Just wanted to let you know that I am here in California.  I finally made it.  I just wanted to post and let you know this because I told you that I would keep you up-to-date with all the latest.  Plus… I am really nervous about tomorrow since it starts all my appointments and the reason why I am here.  So I figured that perhaps doing some writing might make me feel a little better and calm me down.

Before I begin, I just want to let you know that I had a huge surprise in the mail the other day before I left.  I had written a letter to various people in search of help.  As I suffer from a rare and life-threatening disease that poses a very heavy financial burden on my family and me, I cannot afford further treatment without the help of others.  We have made “cut” everywhere, even including cuts in treatment and such, but they are not nearly enough to cover the treatment that I need.  This disease is very costly, as I am on a great deal of medication, see various and numerous doctors, have plenty of procedures, etc.  I also have the travelling expenses such as the gas, hotel, parking, etc.  I not only see doctors in Manhattan, which is very expensive in general to park in and cost a lot of money to get to because of the gas, but I have to travel to various states to see top specialists because my disease is so complicated and complex, and not a lot of doctors are aware of my situation and knowledgeable about it.  I even go to California and Florida to receive treatment and therefore, it is extremely expensive because we have to “fly,” pay for a hotel, pay for a car, and all other expenses associated with “going away.”  We also have to worry about the amount of money that my father loses by taking me to appointments, especially when we travel and are away for a while, because this is all time away from his business.  When my father is not working and he is away from the business, it is money lost… money, which we desperately need. 

Even if the treatment/procedures, doctor visit, and medication are covered by the insurance, they are never covered 100%.  As a result, there is always the copayment that I have to pay.  I see so many doctors, on so many medications, have so many treatments/procedures that the copayments quickly add up.  For example, just in medication… I take over 50 pills daily, which entail taking injections as well.  We easily spend over $25,000 a year just in copayments. 

In addition, not all my medications, doctors, treatment/procedures are covered by the insurance.  Therefore, not only do I pay the amount for the copayments as previously stated, but I also have to pay the entire amount that they cost when they are not covered by the insurance.   I am even forced to get medication out of the country and therefore, they are by no means covered by the insurance either.  So… you can just imagine how expensive pay fully out-of-pocket for medications, doctors, treatment/procedures can cost. 

As a result, I desperately need help.  I am suffering from a life-threatening disease that needs treatment and without the help of others, I fear I won’t be able to continue the treatment that I need.  Not only do I require medication, seeing doctors in the NY area, and treatment in the New York area, but  I also need to be able to travel to California and Florida to receive treatment there.  I need to have surgery in both places.  I need to have brain surgery in California, as I suffer from a tumor on my pituitary gland, which is extremely dangerous and causing me a lot of harm.  I also suffer from severe gastroparesis, and I am down to weighing in the 60s.  I desperately need a radical and risky transplant that only 8 hospitals in the United States perform.  I need a new small intestine, large intestine, stomach, esophagus, spleen, and pancreas.  It is extremely dangerous and has the highest rejection rate of all transplants.  However, it is my only hope of survival even though it is so very dangerous.  Therefore, I really need to get to California to have this performed. 

In addition, I suffer from an underlying neurological disease and autonomic dysfunction that desperately needs to be treated.  There is no known cure for this illness at this time, but the best hope that I have is a ketamine coma out of the country.  The amount of ketamine that I would require to hopefully put me in “remission” for the neurological disease is way to great and is not FDA approved in the United States.  Therefore, I am waiting to be sent to Santo Domingo so that I can undergo that very heavy, risky, and intensive ketamine coma.  I have to wait for the IRB to approve it though.  In the meantime, I have been undergoing ketamine comas in New York, but they are nothing compared to the ones out-of-the country.  Therefore, I am waiting to go to Florida because at least it would be a more intensive coma than the ones I receive in New York, but it still will not be nearly as intensive as the one I receive out-of-the country.  The coma in Florida and the coma out-of-the country are not covered at all by insurance and therefore, I will have to pay all out-of-pocket for it. It will easily cost me over $100,000 for both.

So… as you can see… My disease is very expensive.  But, I really don’t want to die, as I am too young to die.  I have so much to live for and I still want to be a doctor and have so many other things that I still want to do.  I was robbed of my life and never really got to live it and therefore, I really want to get better so that I can “live” that life I never got that opportunity to do so.  However, I know that it won’t be possible without the help of others as we can no longer afford it.  I hate to be a “crier,” but we really need help.

I have tried countless ways of trying to get help.  I have set up websites, wrote letters, been featured in local newspapers, etc., but nothing “BIG” has really come about.  It works for a few days and then quickly dies out.  I really need to be featured in a bigger spectrum of the media such as on television or something.  Therefore, I tried writing to everyone in the past as my one of my last attempts to get help.  I tried writing to all the news programs, talk shows, etc.  I even tried to write to various famous people in hope that they would be able to help me.  But, nothing really came back as being successful.  It really bugs me that I can’t be featured on TV or anything. I see other people getting featured and I am like “how did they get on TV and why can’t I?”  I can’t understand it because I need so much help, and yet I see stories on TV that are not as tragic or important as mine.  I guess it is like the saying goes “It isn’t what you know… it is who you know!” 

That was part of my last “ditch” effort kind of because I am too weak to really continue to be on “top” of things or to “push” for things.  But, I must say that I was really surprised to get one response back… especially since people laughed at me when I wrote this person the letter.  I tried writing to various famous people including the President.  I was even so desperate that I wrote to Queen Elizabeth, the Queen of England.  People thought I was “crazy” to do so because they thought that I was wasting my time.  But guess what?  I finally got a letter back from her the other day.  Can you believe it?  Out of all the people I wrote to, she was one of the very few that contacted me back.

I couldn’t believe that I received letter from Queen Elizabeth.  It came right from Buckingham Palace.  Even though it didn’t have money in it, it was still like receiving $100.  In the letter, she apologized for not getting back to me sooner but it was the year of the diamond jubilee and she has been very busy. She apologized for not being able to donate, but she wished me well and such.  The letter didn’t have her signature per se, as it had the signature of her correspondent, but from what I learned… Queen Elizabeth never writes her letters. HER MAJESTY just dictates her letters and has someone else write them.

Well… let me now tell you how my trip is going.  It is only the end of the first day, but what a day it has been.  I really hate traveling because it takes so much out of me.  I hate going away, but once I am there, it is a bit easier.  However, one thing that really stinks is that I am away from my mom.  I usually go with my dad, so it is really hard being away from my mom, especially when I go for treatments and procedures.  When I am sick, even though Dad does a good job taking care of me… sometimes all I want is my mom.  However, someone has to stay behind and hold down the fort, so it has to be her.  Plus… it is too expensive to have everyone travel, so just my dad and me go.  My mom and I spend so much time on the phone with each other and I am trying to teach her to FaceTIme so that we can see each other.  She just loves when I go to California and I call her in the middle of the night because of the time difference.  But… she obviously gets us back because she calls us in the morning for her, which is the middle of the night for us.  Luckily… I don’t sleep so it doesn’t quite bother me.

But… we finally made it to California and this is the first time I am really “awake” and able to function.  The doctors didn’t think I was even going to make it to California because of what has been happening, especially what has happened during the past few days.  The other day I went to the doc and found out that my organs are failing me.  I have so much “air” and “gas” in me and it is putting way too much pressure on my organs and spine.  I knew that this was a problem a few weeks ago, but who knew that in 3 weeks that it could get so bad? 

I wasn’t feeling too well, but who knew that it meant that all this was occurring?  Who knew that my organs were really suffering and failing me so badly?  Who knew that I was going to need emergency surgery?  They did an x-ray and it was really bad.  When they compared it to the x-ray taken 3 weeks ago, it was crazy how bad it had gotten.  I am so tiny also… so it makes it even worse. 

Due to my GI system failing me, I have too much air and gas inside of me.  It is putting too much pressure on my organs and causing them to fail.  They are worried that my colon is going to completely twist as well because once that happens, we will have a huge problem on our hands, as I can easily die.  They are also worried about the pressure it is putting on my spine because my bones are paper-thin and they are always worried about me getting a life-threatening fracture because it can very easily happen.  Therefore, the doctors wanted me to go to the hospital immediately to have emergency surgery to relieve the pressure because of the organ failure as well as the risk of something happening to my spine.  However, even with the surgery… the air and gas will only come back because my GI system is completely gone.  However, if something is not done and not done quick… even though it is temporary, I will be in total organ failure and I can have even more problems. 

However, the doctors knew that I was going to California and how important it was that I got there.  If I had the emergency surgery, I wouldn’t have made it.  Plus, they wanted the doctors to see everything, as well as the doctors in California wanting to see, before anything was done. This way my “team” in California knew exactly what was going on and how to treat me. After all… I am awaiting a transplant and they need to know exactly what is going on.  So… the doctors in NY gave me their pager numbers and told me to call them in case I couldn’t hold out and make it California.

Yesterday, I was really fortunate that the transplant doctor happened to call me from California.  I was not expecting it at all, but I was really glad that he did.  It is amazing how “outstanding” and “caring” these doctors in California are.  It only stinks that I have to travel all the way across the country to see them.  The transplant doctor wanted to know everything about me and wanted to know everything about my trip.  He wanted to know what I have been eating, my weight, as well as the itinery of my trip as well such as when we were leaving and everything.  I never heard of a doc wanting to know so much about you, especially all your flight info and such.  But, it showed that he really cared. I spoke to him for a while.  As this transplant is very rare and risky, I asked him if he really thought it was necessary to do it.  He said that he was 99.99999% sure that it had to be done.  He told me that I would be meeting with him Monday and the rest of the transplant team later on in the week.  This is surely a huge procedure and a lot of things need to be done.

I wonder if this “hottie” doc is on my team.  When we were here last time, we needed help finding our way through the hospital to get to an appointment.  Not only did a doctor actually take the time to stop and help us, but he also actually brought us to the doctor’s office that we had to go to.  In addition, even when he was confused about where it was, he actually took out his phone and called to find out where it was and such.  He really went beyond the call of duty to help.  I don’t know a doctor in NY that would have went out of his way like this doc did.  Not only was this doctor really helpful, but he was sooooo CUTE.  I know that he is a member of the transplant team, but I don’t know which one.  I wonder if he is on mine because I will be GAGA over him. 

Well… the only way I was going to make it to California today was to be heavily medicated.  Due to my overall disease and how bad things have gotten, especially with the extra pressure, the doctors said that the only way I was going to be able to withstand the plane and trip was to be heavily medicated. Not only was the pressure causing my organs to fail, but I was getting intense spasms. I was also getting spasms on my spine as well because the air was putting pressure on that as well. So… they gave me extra meds to get me there because they knew how much extra pain I would be in on the plane.  I have been in excruciating pain as it is, but with the altitude that we would be, it would be even worse.  Even though the plane is supposed to be “pressurized,” it would really wreak havoc on me. 

My dad was really freaked out though.  He kept thinking that something happened to me because he didn’t hear a “peep” from me the entire time. I was literally unresponsive. I did what the doctors said, which was to overdose on medications.  I am on really potent medications like methadone and morphine and dilaudid, etc. and therefore, they had me take a little extra in hope that it would “knock” me out for the trip.  It was kinda  a little risky considering my state… but it was honestly the best thing considering all the stuff that I was going through.  They really didn’t think that I would make it to California in any other way because it was like an 8-hour plane ride I must say that even though I was heavily medicated and didn’t really say anything, I still felt a lot.  I was in a lot of pain.  I was just too tired, too weak, and just not able to really “complain.”

When we landed though, I couldn’t believe how fast the fight went.  My dad was complaining how he couldn’t take it any longer.  I mean… it was 8 hours on the plane and I would probably have been the same way as him if I was awake for every single minute and just sitting there.  We didn’t have a video or anything.  Usually my dad and I always watch a movie on the iPad, but we didn’t get a chance to do that.  So… it was really slow for him.  We started to watch a movie, but then my dad broke his earbud.  By the time we fixed his earbud, the meds had kicked in and therefore, I was gone.  My dad wasn’t going to put on the movie and watch it himself, so he basically just sat and stared at the seat in front of him for the next 7 1/2 hours.  When we arrived, he was complaining and such.  I couldn’t believe how “quick” it went.  I was like “meds knocking you out really make a trip go quick.”  My dad was like “I can imagine.”  The only bad thing was that I don’t know what happened, but the trip really took a big toll on me and just as we landed, the meds wore off and I started to hit level 10+ with pain.  It was like my body was hitting REVENGE for making it to California.  Everything that was “masked” from the heavy dose of meds plus more was being hit on me as soon as we left.  I thought I was going to die.  I was hysterical.

I was in so much pain.  I was like on level 10+ with pain and we really didn’t know what to do because I was so heavily loaded with meds before.  We didn’t really know how much more meds I could take again because of the amount I had in my body before.  But, with all the pain that I was in… I really didn’t care.  They couldn’t even get me out of the airport.  It was horrible.  All this as we waited for the wheelchair too.  It turned out that when we got to San Francisco, the people weren’t there to get me off the plane with the wheelchair.  So, we had to wait.  The guy at the terminal kept “bugging” them to bring the wheelchair and how I was waiting there.  He must have called them like over a dozen times to come and they kept saying “5 minutes to 10 minutes wait.”  Anyway… guess what?  When they finally did show up… I just didn’t get one person with a wheelchair.  As soon as one person showed up, I had a whole entourage show up.  There were like 20 people that showed up with a wheelchair.  When I was getting into the wheelchair with the first guy that came to get me, I couldn’t believe that they kept coming and coming.  Even when we were walking away from the gate and going to the baggage claim, they were still going to the terminal.  They kept asking what “gate” we were from and when he told them, they had to turn around. It was so funny.  From not having one single wheelchair… they all came for me.  But I was really lucky with the person who came and got me first because he was really nice and I enjoyed him.

Wanna hear something funny though?  Listen to this.  At the baggage claim, I was with the person that was pushing me.  My dad had gone to get the baggage.  My dad had packed the bags and I was unaware of what he actually did.  Even when we brought the bags to the airport, I didn’t take a close look at them.  Well… on all the previous trips, my dad had been very intuitive and tried to make it very easy to spot the suitcase when it came to the turnstile.  Therefore, he put masking tape all over the handle because this way he would see it easily.  After all… you know how many people have “black” luggage?  I must say… even though it did sound stupid, it was helpful.  But… apparently he wanted to make it more helpful during this trip because you know what else he did this time? Not only did he have the masking tape on the handle, but he put masking tape on the actual body of the suitcase as well.  He put an entire strip on it.  I couldn’t believe it.  I had a feeling it was so he could ID the suitcase easily, but I wasn’t 100% sure because it was either that or he was hiding a tear in the suitcase without me knowing.  But, when I saw the other suitcase have it too, I knew.  What a dad!! Always thinking of something!! 

But he wasn’t so smart because he didn’t know after all this traveling that the cosmetic bag was made so that it could slip on the handle and be carried that way.  He has been tying it up on the luggage with the straps.  I thought he knew this all along and when he did it this time, I was “Why don’t you just attach it through the pocket in the back.”  My dad was like “It is a pocket… everything is going to fall out.”  I then showed him that it wasn’t a pocket and in fact, it was the part that you slide the handle of another suitcase through so you could carry the cosmetic bag and luggage together.  IT made it so much easier for him.  He was like “Why didn’t you show me this before.  It is so much easier.”  I was like I thought you knew this already.

But… guess what else happened?? When he went to go and hand me my jacket because I had it packed in the suitcase, he had the luggage standing up.  However, the way that he had it (before I showed him how to put the cosmetic bag on the luggage right) made it really heavy and it toppled over.  However, there was a little kid (maybe 2 years old) right in front being a little pain in the ass to his mom.  HE was having a temper tantrum and everything and his mom was even having a hard time controlling him.  Anyway… the luggage then toppled over onto him and it was so funny. It did knock some sense into the kid though.  I guess the kid got what he deserved.  LOL.  But my dad almost killed the kid with the luggage at the same time.  LOL

But, while we waited though, I was in so much pain that I couldn’t even move too.  So… my dad knew that we weren’t really going to get anywhere without giving me something else in order to dull some of the pain.  Even though I didn’t really “feel” anything on the plane… the traveling was already wreaking havoc on me and making everything so much worse.  Traveling really takes a HUGE toll on me and it was already beginning.  So… even though we didn’t know how much meds I really could take, I didn’t care to be frank with you because I was in just so much pain.  Therefore, we just took some more meds because I wasn’t going to make it otherwise.  Even with these extra meds, I was in excruciating pain… but at least it was enough to get us out of the airport and to the hotel.

So… I was really out of it with the meds that I was in, but I was in so much pain as well.  I thought I was not going to make it to the hotel to be honest with you.  I have really been suffering from the pain.  I just laid in bed sleeping and resting, and hoping the pain would stop.  I have been so weak since we landed and couldn’t do anything.  I was really bad.  It was like my entire body just “shut down” or something because of everything. I couldn’t do anything and honestly… I really didn’t want to do anything.  When we arrived at the hotel, everyone came up to us and talked to us.  That is one thing that is nice about staying at this hotel… everyone knows us.  But, to be honest… I really didn’t want to be bothered by anyone.  I just didn’t want to talk or anything. I hope that they didn’t take it “personal” because I really wasn’t feeling well and even though they were trying to be “nice” and talk to me and such… I really didn’t want to be bothered.  I couldn’t even eat… but of course my dad made me go and eat dinner.  My dad said that I can’t afford to lose an ounce, so I had no choice but to go and eat.  I really didn’t want to, but I had to other choice.

When we went to go and eat, I really wanted to go back to the room because I really didn’t feel well.  I really thought that I was going to have a “seizure” or something because my body felt like it was “closing” up.  I couldn’t believe what I was feeling. My body just felt like it was “shutting” down.  It does that when it gets very cold and stuff.  I don’t know if it’s protective mechanism or anything, but I literally feel my body shutting down and break into the shakes and such when I get really cold.  It is like my body can’t take it.

The waiter came over and tried to warm me up, he raised the a/c and then tried to talk to me to get my mind off things.  Everyone here knows us… so it was really nice. As we were sitting there, everyone kept coming up to us and talking to us… so it was really nice that they were doing that.  But … I just wanted to be left alone.  I told my dad that he was going to have to carry me back to the hotel room in the chair because I couldn’t move.

I am really nervous for tomorrow morning.  I have so many doctors to see.  I don’t know what to expect.  I am so worried that they are going to “back” out or something.  I am not just worried about myself, but I am worried about my dad.  My dad has all his eggs in this one basket.  He thinks California is the “miracle” that we are waiting for.  My dad wants me to get better so badly.  I know that if anything should happen to me.  He would never be able to handle it.  He would literally do anything to get me better.  He even wants to “freeze” me so that I don’t die. At times when I am suffering, my dad says to  me that he “wishes that he could take this disease from me and have it himself instead.”  I tell him though that he would never be able to handle it.  It is so bad this disease that he wouldn’t be able to handle a single minute of it.  It is the worst.  I don’t just suffer medically, I suffer physically, emotionally, etc.  I never get a single second of a break.  I suffer 24 hours a day, 365 days a  year.  I don’t wish this disease on my worst enemy.  Everything that I have ever taken for granted like eating, walking, taking a shower, sleeping, etc. have all been taken away from me because of this illness.  This disease is “hell.”  In fact, doctors have said that “if hell was a clinical medical condition, it would be known as my disease.”

Well… gonna go and rest.  In a few hours I start all my appointments.  I am meeting with the brain surgeon, transplant doctor, and neurologist/autonomic doctor.  I am really nervous.  But… I will see what they have to say. 

Well… until next time… I guess I will talk to you tomorrow.  Thanks again for all your support and encouragement.  I would never be able to make it this far without you.  It is a long and difficult time in my life and without you, I would not have the strength to continue pushing.  I can’t thank you enough.  Keep your fingers crossed for me!




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August 22, 2012



 Well… haven’t updated for a while and with all that is occurring now, I figured that it would be a good time to write something.  So much has been happening and definitely after the day that I had today… I definitely had to write because I have to let you know the latest.  I also had so much happen to me that my head is spinning.  So… perhaps by the time I finish writing this blog, perhaps it might have helped me sought out my thoughts. 

 I had such a bad day today.  I am so confused what to do because I feel like someone is telling me that no matter what I do… going to the hospital is inevitable.  For a while… things have been getting bad over all.  My bloods have been dropping, I haven’t been feeling well, my heart has been giving me problems, I have been aspirating like crazy, they think I am filling up with “fluids” and such, etc.  However, no matter what the deal has been…. I never really wanted to go to the hospital because you know me… I hate hospitals. I have really become “phobic” of hospitals. You wouldn’t think that because I have been so sick and been to the hospital so many times… but the truth is that I can’t stand hospitals anymore.  I literally freak out.  So… I really have been trying to postpone going to the hospital even though I know that the best place for me would probably be in the hospital.

 However, something is telling me that going to the hospital is inevitable.  No matter what I do… it seems like I can never catch a break and that I am getting pushed more and more towards the hospital.  I also didn’t want to go to the hospital because I am supposed to be leaving this weekend for California.  I know that if I go to the hospital, it could really jeopardize my trip to California.  I also know that the best place for me is in California and therefore, it is imperative that I get there so that I can be with the “team.”  So… I really don’t know what to do.

 I have been getting worse and worse.  I knew something was “up” though despite all the other things that I have been going through… the aspirations, the filling up with fluid, bad bloods, etc.  I have really been feeling so horrible lately. I really haven’t been feeling like myself.  I have been passing out like crazy, but they think it is because of my GI system.  I cannot convert amino acids and fatty acids to energy anymore and therefore, I cannot get energy and oxygen to my cells and organs.  Therefore, any exertion that I do… quickly depletes me of energy and oxygen and I don’t have any energy or oxygen in reserve to replace it.  As a result, I become fatigue and black out.  I get so wiped out so easily especially as the day progresses.  I have also been getting really bad back spasms where my kidneys are located.  I definitely knew that something was up with my kidneys, especially since I knew that they have been failing me in the past.

 Luckily, I had an appointment with the kidney doctor today.  I kinda had a feeling that something was “up” with my kidneys because of the way I was feeling, but I honestly wasn’t expecting to hear the news that I was given today. The news is not good at all.  I really REALLY REALLY need to get to California quickly because I am literally running out of time.  My GI system is really causing havoc in my body and causing my organs to go into total organ failure.  It is also causing a lot of pressure to be put on my spine, which is especially dangerous since I have such weak bones.  The doctors are always worried that I am going to get a life-threatening fracture because my bones are so very bad since the brain tumor literally makes my bones deteriorate among other things.  I literally have paper-thin bones and can “break” at any moment.  Therefore, they are really scared because if I break my spine… it could really be a HUGE problem for me.

  When I went to the kidney doctor, he ran some tests.  With all the tests he was running and the way he was acting, I kinda had a feeling that something was wrong. Yet… everything was kept “hush hush” until I was done.  I kept asking everyone “What was going on?  Did he find something?”  But of course no one told me anything.  I guess it was for the doctor to tell me and no one else, especially since the news wasn’t good.  You know?

 It turns out that after all the x-rays and examinations were done, it showed that I am really filled up with air and gas.  I have been suffering with it in the past and I knew it was bad because I was over 75% full of air, but apparently now it is so much worse that it is life threatening.  It is so bad that now the doctor wanted to send me directly to the hospital.  It has gotten that bad.  The x-rays have shown that I have become even more distended; I have filled up with more gas and air, etc.  This is not good because it is putting a lot of pressure on my organs.  It is really shutting them down.  It is also putting pressure on my spine, which is causing further problems.  It is really bad because since I am so small, it makes it even worse.

 The pressure that the air and gas is putting on me is no good whatsoever.  It is shutting my organs down and it is causing my colon to twist.  Once that twists, I will be in really HUGE trouble, as I can easily die. However, like I said before… I am supposed to be leaving this coming weekend for California.  The doctor wanted me to go today to the hospital to have a surgery to relieve the pressure even though it would only come back because of my wonderful GI system.  I didn’t know what to do because if I went to the hospital today for surgery, we didn’t know if I would be able to go to California, as I leave early Sunday morning and it is the BEST place for me. In addition, when we go to California, the doctors (especially the transplant team) want to see exactly what is going on so that they can “help” me.  If I go and have the surgery here to do anything, they will not get an accurate picture of what is going on and would not be able to treat me like they might otherwise.  You know?

 The doctor certainly understood where I was coming from.  He knew how important going to California was, but on the next hand, he knew how important it was to get this taken care of because it was really jeopardizing my health further.  He told me “we never know if you are going to make it through the day as it is.  We never know if you are going to make it through the night.  Between the filling up with fluids and now this, it really complicates things plenty.  You can very well die very easily.”  In addition, he was also going to be in the hospital tomorrow, so he also gave me that as an option as well.  He told me that I could always go into the hospital tomorrow morning (if I could hold out) because at least he would be there and he would be able to “take charge.”  

 Therefore, he gave me his pager number and let me go home to think about it and have him think about it as well. Of course if it gets worse… I will have no choice but to go to the hospital. I will have him paged and he will notify them of me coming. We were also thinking that if anything… we would have it tomorrow morning (if I can last) because my doctor would be in the hospital and therefore, he could take charge and be on top of things. But everything is chaotic because I am really filling up with air and my GI system is completely DONE. So much pressure is being put on my organs that it is shutting them down and causing organ failure. It is causing the colon to also twist and once it completely twists… we will have HUGE problems on our hands as I can easily die quickly from it. I also have a lot of pressure being put on my spine from it.

 I didn’t know what to do.  It just stinks because this surgery isn’t even a “permanent” fix.  It will only be temporary, as it will always come back until they take care of my GI system.  During the operation, they have to operate and puts tubes in me to relieve some of the pressure in me. Otherwise the pressure on the organs and spine are going to cause more problems. I am going into total organ failure because of it and causing the colon to twist… which when it twists is not good and will result in death. However, due to my “dead” GI system, the pressure and “air” will only come back even after they alleviate it. So… it really is important to get my GI system fixed and helped as soon as possible because my organs are really suffering and I am literally running out of time quickly. The worst part is that I am so tiny and there is not a lot of space in me as it is… so it makes it even worse.

 The doctor really is freaking out and doesn’t really know what to do with me.  I am like “damn if I do and damn if I don’t.”  In the meantime though, there have been flyers being put up in places to ask for help and bring awareness to my situation.  The flyers are asking for donations because like I have previously said, without the help of others… there is no way that I am going to continue treatment, especially continue to receive treatment in California, which is the best place for me.  This disease is a real financial burden and my family and me can no longer afford the treatments, medication, appointments, traveling expenses, etc.  

 Therefore, my life literally is in the hands of everyone else because I fear that without the help of others, I will not be able to receive any more treatment.  We have made tons of “cuts,” but even with all of those, it really isn’t possible to afford this illness anymore without the help of others, especially when so many parts of this illness are not covered by insurance.  The insurance doesn’t cover all the procedures, medicines, appts, etc. that I have and take.  In addition, the ones that they do cover still have copayments, and they quickly add up as well.  Just in co-payments alone, we spend over $25,000 a year at least. The doctor knows how important it is that we get the help because I will die otherwise and therefore, he took all my flyers that I had and is posting them all over the hospital.  I couldn’t believe that he was going to do that.  What a wonderful doctor to go out of his way and take all my flyers and to go post them all over the hospitals. I am so thankful to him.  

 So… everything is up in the air.  We know what is the best thing for me, which is to go to the hospital and have the procedure done as soon as possible because my body is literally suffering and dying, but we also know how important it is that I get to California. If only I was in California right now and could have it done there.  That would be the best.  But, California is not until another 3 days.  Gosh… it is so close and yet so far away at the same time.  I really hope that I am going to make it.  The doctor is just so afraid because this isn’t good and then with everything else occurring… the filling up with fluids, the bad bloods, etc.  The prognosis isn’t good.

 I have been really thirsty as well lately.  So, of course I have been trying to drink as much as possible.  I just can’t quench my thirst. This isn’t good though because I am literally aspirating and “filling” up with fluids.  My GI tract is so “dead” that it is literally spilling over into my lungs.  As a result, the more that I drink because I am so very thirsty, the more that I aspirate and spills over into my lungs.  I am literally drowning in my fluids.  It is horrible. When I saw the kidney doctor, he confirmed that the reason that I am so thirsty and can’t quench my thirst is because of my GI system.  It is not absorbing anything.  My GI system is just completely gone.  So… that is just one more reason why I should go to the hospital immediately because I am so dehydrated and I am so thirsty, which is resulting in me drowning in my fluids.  This way if I go to the hospital, perhaps they can do something to hydrate me better and stop me from “filling” up at the same time.  But, it would only be able to be done by IV and I can’t tolerate IVs too because of my illness.  I am so hypersensitive to everything and therefore, a simple IV is like sticking a knife through me.  I can even feel the fluids going through me, and it sends me through the roof.  Whenever I go for an operation or something, they have to wait for the last minute to put the IV in, and then give me lidocaine to numb the entire line.  Then, even when they start the line and the liquid goes into my vein, they have to put it so that it goes as slow as possible because it just kills me.  So… it isn’t a very easy answer to this problem either.  

 It has also been confirmed today that the nerves that conduct my GI system are completely “gone” as well.  Therefore, I can’t really go to the bathroom and I don’t have feeling when I have to go or not.  It is just horrible because it is just problem after problem. It never ends.  I am so very scared.

 So… like I said… everything is “touch and go” right now.  It just freaks me out that I can basically “die” any minute with everything going on.  However, since the best place for me is California and since they really should see the COMPLETE picture so that they can best treat me, I am hoping to make it there. I am hoping to hang in there as long as possible, but of course I have the doctor’s pager number right at hand in case I have to go to the hospital immediately.  But… I have made it this far and California is only 3 days away.  I can make it.  I know I can!!

 We are supposed to leave Sunday morning to go to California.  However, with all this now occurring to me, it really complicates the flight to California as well because I am definitely not stable.  Traveling is normally not “easy” on me as it is.  My body usually “acts” up and I usually have a great deal of problems when I travel.  Now… with all this going on… we are really expecting the worst.  There are so many times in general that we almost end up in the hospital because of the traveling, so I can only imagine what this is going to bring.  I am really hoping that it isn’t going to be that bad.  The doctors are just really bad that I won’t be able to tolerate the flight especially because it is so long and I won’t be able to really “move” and such.  So… we are going to really load me up on meds and really “knock” me out.  Hopefully that will get me to California.

 Gosh… with going to California in 3 days, there is just so much to do.  However, with me not able to get energy and oxygen to my organs and cells, I really have to be really careful.  I can’t really exert myself.  I already got strict instructions from the doctor that I can’t do anything that “over” does it.  I am literally not even allowed to lift a finger because anything really completely depletes me and once that happens, I am officially a goner.  I keep passing out (blacking out) because of that.  It is really freaky and scaring me.

 Not only do I have that problem, but my head has also been giving me a lot of problems.  The brain tumor is really causing havoc on me as well.  I am having a hard time with my vision, getting severe headaches, having extreme fatigue, etc.  So… things just continue to get worse and worse.

 It is really imperative that something be done and done fast.  I know that I am not doing well and that my body is “dying.”  I hate to say it like that, but it is the truth.  It is something that only people who are “dying” really can understand. I keep having these “out of body” experiences and they are really weird.  I can literally feel my body just giving out.  I can feel my body just “dying.”  My body is just so tired.  It is tired of suffering.  I just don’t know how much longer honestly it can hold on.  It is tired of the pain, tired of the suffering, tired of being sick, etc.  It is like a punching bag and it just keeps getting beat up 24/7.  I never get a second to come up for air.  I really just don’t know how much I can hold on and my family and me are watching my entire life just slip away from me.

 I really can’t wait to get to California.  They are the best doctors out there.  I really have an amazing team out there.  It just stinks that they are located on the other side of the country.  It just isn’t so “easy” to get out there.  You know?  Well… we leave on Sunday for California and there are so many doctors that we are going to see.  We are only going for a week this time, but it is jam packed with doctors.  I am going to be seeing so many doctors and going for so many tests that my head is going to be spinning with so much information and such.  I am going to be seeing the transplant team, the brain surgeon, the neurologist/autonomic dysfunction doctor, the pacemaker surgeon, the GI doctor, etc.  It is nonstop doctors.  But… it isn’t a “vacation,” so what else did I expect?  LOL.

 The GI doctor recently put me on a new drug to see if it possibly would help.  However, it hasn’t and the doctor was really hoping that it would.  She kinda is at the bottom of barrel too, so it basically all we have left is the transplant and just have to wait it out til then.  Guess there is no “magic” up the sleeves anymore.

 I will be flying again with my dad.  Dad always goes with me when I have to travel.  I just love my dad. He is not only my “dad,” but he is my very best friend and my hero.  I don’t know what I would do without him.  I know how much it hurts him that I can’t get well and I know how much he would do anything and everything to get me well.  He would literally chop off his arms if it meant me getting well.  He always tells me that he would “take the disease from me if he could.”  But I always tell him “he would give it back to me in a heartbeat because you wouldn’t be able to handle it.”  This disease takes no mercy.  It is simply the worst.  I have already had doctors state that if “Hell was a clinical medical condition, it would be known as my disease.”  Not only do I suffer medically from this disease, but it also is extremely painful.  It is one of the most painful diseases that you can possibly have.  Experts liken the pain response to that of “an engine revving out of control.” On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation! It is horrible. 

 I am so very nervous because I know how much I need these surgeries and how much I am at my last straws. I know how I am dying and I know how I don’t have long to live.  I know these are basically my only chances if I am going to live and I know also how risky these surgeries are as well.  After all, brain surgery is no easy surgery because we are talking about someone touching my “brain!”  I have a brain tumor on the pituitary gland, which is really difficult to get to and treat.  I was also told that I might need radiation and/or chemotherapy.  My dad has been very wonderful in that he said he would shave his head with me, but if it comes down to it… I don’t know honestly if I am going to go through with it.  I have been doing everything that I can to get well, but I don’t know if I could possibly go through with the chemotherapy and radiation. It just is too much.  There comes a time when enough is just enough. But… I don’t want to hurt my dad at the same time because I know how much he wants me to get well, so I don’t now what to do.  I do know that I really don’t want to hurt him, but I also don’t want to go through with the chemo   or radiation if it comes down to that.  But, one step at a time and I will find out what is in store for me when I see the surgeon on Monday. 

 I also need a transplant and I know that the transplant is extremely risky and radical. Yet, it would really be amazing if I can get through it.    The transplant is extremely dangerous and only 8 hospitals in the country do it, Stanford being one of the 8.  It really has only been done since 2008 and Stanford has only done about 40, even though they have done perhaps the most. When I talk about this transplant, most people can’t believe that I am having it done, as it is basically unheard of.  They are basically “gutting” me.  They are giving me a new small intestine, large intestine, stomach, esophagus, and pancreas.  It is extremely dangerous and radical.  They said that it is the transplant that is the most riskiest, as it runs the highest rejection rate of all transplants.  I really am nervous, but the doctors say that if I do make it through the transplant, it would really transform my life and make a huge difference.  That is what is keeping me going.  I really can’t imagine the day when I am not suffering and I don’t have to worry about all this anymore.  I can’t wait for the day that I will be able to “eat” again.  People take “eating” for granted.  However, that is something that was taken from me. 

 My dad will literally do anything and everything for me.  He always makes the sun come out on the gloomiest days. Even when I am not feeling well, he always tries to make me feel better. I am just so afraid that we are going to get bad news.  Not only am I afraid for myself, but I am also more afraid for my dad.  I don’t think that he could handle it.  I know that if something should happen to me, he would never be able to recover. So… I am so afraid that the news won’t be good for him because he is looking forward to California so much and really hoping that they will be able to help me.  In fact, he is putting all his eggs in that basket.  He is constantly telling me to “hold on Fallon… California is right around the corner.”  He really is thinking that California is the “Miracle Answer.”  I only hope that he is right. 

 Well… tomorrow morning is bloods. Gosh… I wonder what the bloods are going to come back as because they are so very low as it is, and they continue to drop.  I am literally in the level that I can easily go into “cardiac arrest” or have an arrhythmia.  I should also be in the hospital because of this, but the hospital isn’t always the best place for me.  I have no immune system and the hospital is one of the best places to pick up an infection. So, the doctors like to keep me out of there as much as possible because if I do pick up an infection, it could easily kill me.  Everything is magnified for me and therefore, a simple cold is like the flu to me.  In addition, with all the meds that I am on, it is very difficult to put me on antibiotics that could “cure” something if I get an illness because of all the interactions that could possibly occur with the meds that I am already on.  In addition, the stuff that they would give me would burn up the veins of a normal person.  With me being so hypersensitive, it would be so much worse for me.  Finally, it would only be a temporary fix.  When I get home, I would only be back to square one and therefore, all that time in the hospital and all that risk and suffering while being there would have been for nothing. You know?  So… it would always be merry-go-round back to the hospital. 

So… the doctors try to keep me out of the hospital as much as possible.  They are watching my bloods very carefully, but they are dropping like crazy.  Between everything that is going on and then the bad bloods, I really am a walking disaster.  I just hope that they don’t drop further, especially since I am leaving for California and will have to travel, which will exert extra stress and pressure on me.  It will definitely affect my heart and if my bloods are down and already affecting my heart, who knows what would happen?

 I have been trying to pack a little bit here and there because I can’t do too much due to my condition.  It is going to be a long flight to California, so of course I am bringing my iPad.  Dad definitely loves that thing. Dad and I will of course watch some movies to try to keep us busy.  I was thinking of watching BATTLESHIP, THE LUCKY ONE, and THE RAID: REDEMPTION. I am also probably going to watch THE LORAX because I wanted to watch that this past week, but I couldn’t rent it.  I wasn’t going to spend close to $20 to buy from FIOS, when it wasn’t even where I got a DVD for it.  So, I figured that I would just wait a few more days til it was able to be rented because it would be cheaper.  Do you have any suggestions for any better movies?

 I bought my dad his birthday gift since his birthday is around the corner.  His birthday is September 9th, which is basically as soon as we get back.  Since money is tight and he also needed shirts when we go away, I figured that it would be a perfect gift.  If I didn’t buy it for him, I know he wouldn’t buy it for himself and that was one of the main reasons why I bought it for him.  He definitely needed shirts to go away with and therefore, I thought it killed 2 birds with 1 stone.  I bought him some shirts and gave it to him, but he didn’t care for the colors.  He likes his “blue” shirts and I got him various colors such as orange, red, yellow, etc.  I mean… how many “blue” shirts can a person have, right?  But… since he wanted “blue” shirts, I returned what I ordered him and got him new shirts.  This time I got him more shirts in the “blue” family, but I still managed to get him 2 shirts that weren’t.  I got him a nice green shirt and a nice yellow shirt.  There is no way he is wearing “blue” all the time.  I really wanted to make his birthday special because not only does he do so very much for me, but it could be the very last birthday I share with him.  So… I wanted to make it as good as it can be.

 I have also been trying various ways to raise money.  Even though I have gotten so much weaker and sicker and can’t do as much as I have done before, I am still trying.  I have sent letters again to the media (television programs and news programs), and hopefully they will answer me.  I am so thankful to all the people who have contributed to helping me… whether it is by donating, spreading the word, or even by saying a simple prayer. I can’t tell you how much it really means to me.  I really get all choked up each time I think of all the wonderful and thoughtful things people have done to try to help me out. 

ImageA very thoughtful person has sent me a new bear to add to my collection.  I love stuffed animals, especially GUND bears.  Anyway, this person has been by my side everyday and has been so caring towards me.  She will literally bend over backwards for me and do anything that she can to help me out.  Anyway, she bought me a bear to bring with me to the hospital and to treatments so that she can be by my “side” all the time.  He is absolutely the cutest.  I love him. His name is PHILBIN, but I am thinking about changing it.  Not only is he the cutest, but he is so cuddly. Whenever I am so stressed, it really calms me down to cuddle with my bear, especially him because he has beans in his paws and toosh.  I like playing with the beans, as it is kinda soothing.  Since I am always in the hospital, I dressed him in his own hospital gown.  I think he looks kinda cute in it.

Wanna hear something amazing?  Dad went fishing this past weekend.  I used to love fishing too, but I haven’t been able to do so since I got sick.  This disease has robbed me of so many things and I can’t wait to be able to have my life back.  Anyway, my dad loves to go fishing and he usually goes on his fishing trip once a year.  However, since he knows how much I do love to go fishing, he does arrange one Sunday at least during the summer to take me fishing off the dock.  Since I can’t go out on the boat because of the waves and rocking, as well as since I can’t stay out in the sun because it burns me, my dad takes me very early in the morning fishing off a dock before the sun really comes up.  It isn’t the same as going out on the boat, but at least it is something.  It is even more special because it is a day I get to do something “fun,” which is something I never really get to do, as well as get to do it with my #1 dad.  It is even more special because it is something hat my dad arranges when he doesn’t have to. He is always trying to arrange things so that I can be happy.

ImageAnyway… when he did go fishing this past weekend, guess what he caught?  He caught a sand shark.  He was so proud of himself and really amazed. It was 2 feet long.  He took pictures with it and everything.  When I saw the pictures of it, I couldn’t believe it. He was holding it like he was so scared and such.  He said that he was “scared that it would bite him.”  Too bad I didn’t see this in person because this is something I definitely would have loved to see.  Who would ever have thought that my dad would have caught a shark when he was just fishing for fluke?

 It is really extremely difficult to battle this disease, but to know that I have support from people behind me… it really makes a HUGE difference.  I fight because of all the people behind me!! I get my strength from everyone behind me to keep going and I am forever thankful to them.  If you can please continue to spread the word that “help” is needed… please do so.  If you have any fundraiser ideas, you can always email me at Spunkyfal@aol.com or leave comments here. 

Well… going to get going… been a long day and not feeling too well.  Thanks again for all your support and encouragement.  I will write again when more info is known.  If I become hospitalized before going to Cali, I will let you know.



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August 14, 2012


Hey all-

What is going on?  So much has been happening lately, so I figured that I would just give a little update as to what has been happening.

It is getting close to leaving for California, as I leave in only 1-½ weeks.  I am really deteriorating and hoping that even though California is so very close… I am only hoping that I will still be able to make it there.  My parents are very nervous about me because my parents are afraid that I am not going to make it.  My dad is very nervous because he knows what “traveling” does to me and how “hard” it is for me too.  It is very stressful on my body and stress is something that my body does not tolerate well.  My body really acts up when it is “stressed” out and really makes my disease flare up a lot.

I really don’t want to go in a way because I am really nervous.  I am meeting so many doctors there… the transplant team, brain surgeon, surgeon for the gastric pacemaker, etc.  and I am really afraid of what they are going to say.  I am not just afraid of that, but I am more afraid for my dad because I know how much all this means to him.  In the past, doctors have been really hesitant to “work” on me and such because of my complicated and complex medical condition.  I am really high-risk and they are really scared to do anything on me. Plus… not a lot of doctors know exactly how to treat me also and therefore, it is really difficult to get the necessary “help” that I need.  However, the STANFORD MEDICAL CENTER in California is supposed to be one of the BEST hospitals in the country and known for these risky cases and such.  I only hope that they stand by what they say and continue to work on me.  I am not just afraid of bad news for myself, but I am afraid of bad news for my dad because I know if something happens to me… my dad would never recover.

My dad is also worried about me losing weight because I literally weigh nothing as it is.  I can’t afford to even lose an ounce and when we travel away from home, I don’t really “eat” as I should.  I am a self-conscious about eating away from the house since I can’t keep food down and end up vomiting everything and therefore… I don’t really eat as I should because of fear of embarrassment.  In addition, I don’t tolerate food well and if I am not home, I cannot eat the food that I can normally eat.  I have a “dead” GI tract and extreme difficulty swallowing and therefore, only certain things even go down.  So… I am really limited in what I can eat and drink because of this.

When you go away, you are kinda at the mercy of what the chef at a restaurant prepares and makes and therefore, you can’t always get what you can and want to eat  (as you would at home). So… I really end up freaking my dad out because any ounce I lose is extremely detrimental to my health, as I only weigh in the 60s and once the weight is lost, it is basically lost forever because I can’t regain it.  Especially for the surgeries and the transplant, I need to be as strong as I can be and that means to have as much weight as I can on me.  Without weight and appropriate nutrition, I won’t heal and be strong enough to recover.

California is around the corner and funds are really short too.  I am really afraid that not just with California, but with all my treatment that it will end up having to be “cut” because we can no longer afford it.  My disease is extremely costly and the bills are growing.  We have made so many “cuts” in my treatment and yet… it doesn’t seem nearly enough.  It is a shame that my life depends on money and that is something that I don’t have.  As a result, my life essentially rests in the hands of the people of the world because without the help of others, I fear I won’t be able to continue to seek treatment.  I desperately need to raise funds and need support.

I am so fortunate that some people have stepped up and helped me out. I can’t thank them enough because my life literally depends on it.  However, there is so much more that needs to be done.  I am running out of time and deteriorating quickly, as I was diagnosed with RARE and LIFE-THREATENING diseases. Treatments in California, Florida, and New York, which are VERY expensive, are my only hopes for survival. I need to get to California to have surgery and get a small bowel transplant (small intestine, large intestine, stomach, esophagus, etc.), as well as to Florida for an intensive ketamine coma that insurance won’t cover. I am too young to die and I have so much that I still want to do! My family and me are watching my life slip away.

I can’t believe that some people have stepped up and helped me though.  When I see people helping me… even if it is just by spreading word on Facebook or something that I need help, you can’t imagine what it means to me.  These people are what definitely keeps me going!!  I can’t tell you how much that means to me.  Without you… I definitely wouldn’t be where I am today.

I only wish the media or a magazine would pick up my story so that people nationwide could be able to see it.  Maybe it would bring in a lot of funds that way.  It really bothers me that I have tried to contact media such as talk shows, news, magazines, etc. and gotten nowhere.  Yet, I see other people on TV and see their stories.  I wonder what I am doing wrong  and how they get their stories on.  But I guess it is like the saying goes “It isn’t what you know… it is who you know.”  Even if I don’t get the funds, at least if it is televised or in magazines, at least I can bring awareness or attention to my illness and leave a mark that way. I want to leave a lasting legacy and perhaps this can be it.  People shouldn’t take anything for granted because who would think that this would happen to me.  In a heartbeat, something can be taken away and therefore, people should be extremely grateful and appreciative for what they have.

O by the way… I had someone send my story to SKEERY JONES from the radio station known as Z100, which is a very popular station.  I was really glad to see that he shared it on his wall on FACEBOOK. If you look on his wall… it is there. Just be careful because just as I learned… there are 2 pages of his.

Things have not been good lately.  I have had a very bad day… but that is nothing new.  I went today to have my bloods taken because my bloods have been really low lately and have been at risk for cardiac arrest and arrhythmias.  I have also had to get my heart checked out because of the fact that the doctors in California wanted to put me on a medicine that would effect my heart because prolonged QTs.  I already suffer from prolonged QTs and therefore, this medicine could cause them to worsen, especially since I take Methadone, which is known to cause that too.  In fact, my heart doc has always told me in the past that I can raise any of my meds, but I can’t raise the methadone because of that very fact.  So… I had to go for the heart test to see if I could tolerate the new med.  It would be a shame if I couldn’t because we are basically at the bottom of barrel already.

Well…  I just got back my bloods, and of course they fell.  But, I am so glad I get to remain at home after all that happened today.  Really thought that I would end up in the hospital, but luckily, they let me stay at home.   My bloods really dropped… and it wasn’t good because they were low already.  I am a cardiac arrest waiting to happen.  I also spoke to the docs in Cali.  They are counting down the days til I go there.  1 1/2 weeks more.  I am so nervous.  I really am scared to go.

I should really be in the hospital, but the doctors are trying to really hold off on that as much as possible.  They don’t want to hospitalize me.. and will try to avoid it as much as possible… but if my bloods are too low… they will have to send me to the hospital. My bloods are already too low and I can easily have arrhythmia or cardiac arrest. They send my bloods out STAT so who knows where I will be tomorrow night. Hopefully I will still be able to stay home.

The hospital isn’t the best place for me and they know it. It is a place where I can easily get sick because I have no immune system and susceptible to everything. If I get sick… it can easily kill me too because I can’t fight it. Everything is worse for me too. a simple cold to a normal person is like getting the flu to me. So… u can just imagine how bad it is. Everything is so much magnified for me. Then… with all that is happening… I can’t really take meds that would help “cure” any sickness. First of all… I am on so much and therefore… there are so many interactions tat it really makes it impossible to take things that could help if I get sick. Second of all… I don’t absorb things either… so even if I could take something… there isn’t any guarantee that I would absorb the med. I can take meds in the morning and then at night (after dinner), I can vomit and bring down in a cup to my dad all the pills that I took in the morning… whole and not absorbed. It is really amazing how it is over 12 hrs. and they are still there… whole and such. In fact… one time I had a procedure where they make you swallow a camera. It is so they can see how your GI system is. We waited a lot of hours before I ate too, but when I did eat… guess what happened? I vomited up the camera. The doc never saw anything like that before. The shell of the camera was even on it… which should have broken off at the very least.

In addition, it is also dangerous too for me to take meds because since my GI system is paralyzed, they have to be careful what to give me. Pills don’t dissolve where they are supposed to. Instead, they dissolve in my esophagus and therefore, they can easily rupture my esophagus. I can’t tell u how many times I had to have an emergency endoscopy so that they could pull out a pill because it was stuck there. It is also really painful too because it dissolves in my esophagus where it isn’t supposed to be. Anyway… the docs don’t want me in the hospital because not only because of the infection risk but because I can’t be treated like a “typical” patient. Therefore… there is usually more harm than good that is done. U know?

Plus… the stuff that is given that could raise my bloods is really painful and burns up the veins in a NORMAL person. In me… it would be even worse. So… if a normal person really can’t tolerate that med… you can just imagine how horrible it would be for me. I can’t even tolerate saline IV in me… so u can imagine this. Also… they know it would only be temporarily too. Once I get out of the hospital… I would be back to square one too. So… unless I remain in the hospital forever… they know that it kinda is pointless because it will only go back to the way it is when I come out. But… if the bloods get so bad… they of course will have to put me in because they aren’t going to let me die at home. U know? But they are just actually hoping that I will make it to Cali first because that is probably the best place for me.

In terms of the heart test though, although it did appear that the med would possibly affect me because of the prolonged QTs, they are willing to TRY it.  Long QT syndrome (LQTS) is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death.  It is really dangerous to me too because of my poor bloods.  I am going to be closely monitored and therefore, they are going to try it because things are getting so very bad.  Something just has to be done because I am getting so very bad and suffering, so they are going to try this.  I just have to be extra careful because I already have the prolonged QTs and I can’t afford to have anything exacerbate them further such as limiting physical activity or stress.  I don’t have the problem limiting the physical activity because due to my illness, I can’t really do anything.  But… the stress problem is going to be a BIG problem.  Due to everything happening with me… I have a HUGE amount of stress in me.  Who would expect something different… especially with everything that I am going through.

I also have started  a new injection lately for my bones because they are really bad.  Even though I have been receiving bone infusions, my bones are still deteriorating and the doctors are very worried that I am going to get a life-threatening fracture.  As a result, the doctors have placed me on another daily injection to add to all the rest.  I have been getting the worst side effects from it.  It has felt like my throat has been closing up, I was dizzy, weak, in pain, etc.  However, I have been continuing to take it.  However, it has been a couple of days and it hasn’t gotten better.  I was hoping that it would get better and since my throat wasn’t “completely” closed up… I still continued to take it. In addition, with this new injection being taken, it is getting really difficult to take my original injections because it is like something is stopping the needle from going into my belly.  All the injections go into my belly and since I am so small to begin with… there is only so much room to play around with. U know?  I just don’t know why I can’t get the original injections into my belly anymore.  I don’t know if the new injection is forming scar tissue or anything, but this is definitely something I can’t afford because I don’t have anyplace else I can put the injections.

But… it is at the point where I can’t do it anymore.  I didn’t take one of the injections tonight.  It appears that I have been having worse than ever side effects from it. So we are holding off until we speak to the doctor, which we couldn’t get in touch with because something must have been wrong with the phones.  So…. we are holding off because we didn’t realize that I shouldn’t be taking it… especially since I have kidney stones and hypercalcemia.  So with everything going on… we stopped taking it until we speak to the doctor.  However when we tried to contact the doctor today, we couldn’t reach him for some weird reason.  There must have been problems with his phone because it is very weird that you can’t get through to him.

I really can’t take the pain of the new injection either or the side effects from it. I don’t know what I am going to do about it too because I can’t tolerate it. To think… I am supposed to even be taking yet another injection for my intestines and such, but have been holding off because that injection is WAY too painful. It is so bad that it has the nickname LIQUID FIRE. I am in way too much pain as it is… if I take that… I will literally go through the roof. It killed me by taking that injection without these other ones… I can’t imagine what it would be like with the injections now. I don’t know what is going to happen. There really isn’t any other options and I know how important all these injections are. But I am getting just so very sick from them. I don’t know what I am going to do. Something really bothers me about taking them too because honestly… if I don’t have that much time left… why do I have to spend all this time or whatever time I have left “suffering?”  Enough is enough.

To be honest… I am not doing well. I never know what is going to happen with me.  I have been doing worse than ever.  I don’t know how much longer I can hang on.  I am getting pains and visions that I never got before.  I am getting really weird things.  The docs say that it is because of the brain tumor.  But who knows.  All I know is that I was used to all these things that I Was experiencing, but these things are “new” and therefore, even though the old things that I was “used” to were scary… these are really scary because they are new and not used to and I don’t know what is going on. U know?  I just hope that I make it because I honestly don’t know what is going to happen.  I don’t even know to be honest if I am going to make it through the nites or days anymore.  Things are getting really bad.  I am so very scared.  The neurologist said it’s because of the tumor, but who knows.

I don’t think I can honestly do this anymore. People say that I’m sooo strong, but I am really not. My parents especially say “I am sooo strong and brave!” The thing is that I am really not. This is me with all them and of course u behind me. I wouldn’t have the strength or attitude without them or u. U r my support team. I fight for you guys more than I fight for myself.

But games on to now find a donor and have brain surgery before its too late. Then the game will b just to survive it which will really b one difficult task… Something I am really scared that’s not going to happen.

Yesterday, I also spoke to the neurologist from California because I had some huge problems. I haven’t been doing well at all. I have been in such weird states. Today I blacked out and couldn’t figure out where I was. It took me a while to figure out where I was (I was in my room and in my bed). Then when I finally figured that I was in my room, I couldn’t remember and it took me a while to figure out that I was in my bed. Then I couldn’t even remember which way I was laying. It has really been getting weird. I have been getting the weirdest sensations and things that have not been happening before. I have been having a lot of blackouts, memory problems, confusion, etc. I also have been having really bad headaches, trouble seeing, and a lot of pressure in my head. Something just doesn’t feel “right.” I have experienced a lot in the past… but this is all new… so it kinda scares me because I am not used to this. I am literally feeling like I am coming out of my body and it freaks me. When I told the doc all this, he said that it is probably because of the brain tumor and that is why I am seeing the neurosurgeon when I go to Cali. He said that I am seeing the BEST neurosurgeon there is and that he will take GREAT care of me. I told him that I didn’t expect anything else because I knew that he would only send me to the BEST.

But… just to know that the blood levels are so high for the tumor and that these things are probably all associated with the tumor… it really scares me. The highest level it should be is 23 and mine is over 75. When I told my dad this… my dad said that he just hopes the neurosurgeon (even though he is the best) does something to help me because I have had so many doctors chicken out because of the risk that I am. I am extremely risky and so complicated. But… Stanford is supposed to be like one of the best hospitals in the country and they are known for operating on high-risk cases. The surgeon is known for this as well, so hopefully he will be able to help me. I also talked with the neurosurgeon and he gave me an appt because he too wants to see me when I come to Cali. Gosh… so many docs to see when I go. That first day is going to be soooo booked with appts. I literally go from 10 AM with the neurosurgeon to seeing the neurologist/autonomic dysfunction doc at noon to seeing the transplant team at 12:30. The doctors in California are not like the docs here that they only spend 2 seconds with you either. They spend so much time with you and let you ask all the questions you need and explain everything thoroughly. They never push you out. It is nothing to spend like 2 hrs. in an appt. so… u can just imagine how tired I am going to be after all the appts on Monday.

Dad and I were watching the brain surgeon that I am seeing in Cali speak. He did this whole entire speech and lecture about the exact type of tumor that I have as well as how they go about treating it with the different surgeries and such. My dad asked my mom if she wanted to c it but if course she didn’t because she hates watching all this medical and gory stuff. Anyway… This neurosurgeon I’m seeing is really top notch. They do procedures there that no other places do. Besides doing the regular craniotomy where they open the skull and operate that way, they can also go through the nose and open up the skull that way by removing part of the bone to enter the brain that way. It’s a lot easier to recover from and everything.

You know how there are regular surgeries that are huge in the abdomen and then laparoscopic surgeries that make it so much easier on the patient? Well this is kind in the same way of thinking if u get my drift. The only thing is that the surgeon has to be really experienced and know what he’s doing because he’s essentially blinded since he’s going through the nose and sinuses and entering the skull that way. The doc also said how the tumor in the pituitary is right over there so it basically “falls through”. It really was cool to know all these different approaches that he did and know how experienced he is to do this. They do a “team” approach and they even have cyber knife surgery too. But I guess it’ll b up to the surgeon when I see him to see what I’m better off getting. I just hope I’m not going to have to have radiation or chemo like they said is a possibility. I would never be able to handle it. Dad said he would shave his head with me but it wouldn’t matter. Enough is enough and if it honestly comes down to that… I don’t know if I’m honestly going to proceed with it.

I also have been so bad and deteriorating that I have to go for an emergency ketamine coma. The problem is that I am leaving for Cali in less than 2 weeks and therefore it has to be done really soon. I have to really have it done this week because of the fact that it could mess around with the tests that they are running and it also gives me severe pain and messes around with my autonomic dysfunction afterwards. My body kinda pays me back for “starting” with it. Some people say why do I bother going for it if it causes all these problems afterwards, is so risky to begin with, gives you severe nightmares and hallucinations, etc. But the reason I go for it is because at least it will take me out of pain for the day. it gets to the point where even being out of pain for the day is better than nothing. I never get a moments rest, as I am in pain 24/7.

So… I am willing to take anything. I just curse it out afterwards. LOL. I am in so much pain and agony that I am not only overdosing on meds at night anymore (which it used to be because as the day and night go on… the disease gets worse and worse). It is at the point that no matter what time of day it is… it is just unbearable. I used to have to sleep (well not really sleep but lay on the bed) with my feet out of the covers and off the bed because of the hypersensitivity. However, now I have to lay with my entire legs off the bed and out of the covers because I can’t tolerate it touching the bed or covers whatsoever. It is unbearable.

You can’t imagine the pain or the suffering because if someone told me what this is like… I wouldn’t understand. I don’t wish this on my worst enemy. My dad always says that he wishes that he could take my pain away and take it from me. I always tell him that he would never want to do that because he would never be able to handle it. I told him that he would give it back to me in a second. I just need the ketamine so badly but I can’t go next week for it because it is too close to leaving and will not make me able to sit on the plane since we leave that Sunday. It is hard enough to travel and such without the ketamine. But with it… it will be impossible. Plus… since I have the tests there… it really will interfere too. So… It is really necessary to have it as soon as possible (like this week) so that I have the most amount of time to recover and so that my body can go back to the “regular” way it always is.

Plus… I am literally climbing the walls too… so the sooner the better. But the problem is that with everything happening with California and the bills and such… my dad can’t take off this week to take me for the coma. It literally takes the entire day and it forces my dad to not work the entire day. So… my dad really has too much work to do that this week and therefore, the soonest he really can take me is next Wednesday, which is really no good. It is no good because first of all… it is like 3 days before we leave for California and my body would no way cooperate to go to Cali and sit on the plane and such. Second of all… it would definitely probably mess around with all the tests and such because there isn’t enough time to “bounce” back. Third of all… we are talking about another week away and I am not going to make it that long. The problem is that he can’t really do this week and although I really need it, he really can’t do this week. He said that if worse comes to worse he can do Saturday, but it really isn’t good for him. It would make him LOSE A LOT of work and would really be detrimental to him. It would force him to really overload on work and work from morning to night even on Sunday. It would really be a BIG inconvenience. So …. I really don’t know what to do because I know how much I need it and how much my dad also needs to work. I am so confused and don’t know what to do. I feel bad making him take me … but I know how much I can’t last and need this. I don’t know what to do. I am so screwed.

Right now I am scheduled for the ketamine on Saturday, but I don’t know if it is going to happen because my dad really can’t take off.  Him working is so very important and therefore, I will probably end up canceling it.  But… I will let you know.

I had the dentist the other day and he literally KILLED me. He said that he could tell that my disease is getting so much worse because he never saw my mouth so bad. He said it really was a “disaster” in side. He could like barely touch me because of the pain. Every time he spun the drill or put water in my mouth or had to blow air on my teeth I was screaming and literally going through the roof. To think… I deliberately took extra pain meds right beforehand too so to try to alleviate some of the pain. I don’t even want to fathom what it would be like if I didn’t. He said the teeth and the bones in my mouth are really disappearing BIG time. It really scares me because I don’t want to lose my teeth.

My gums are really receding too. He said with all the stress I am under and the disease getting worse… that is why my teeth are so bad. According to the doctor when she did the surgery 2 weeks ago, everything in my GI system was really dilated… much more dilated than it should be. There is so much bile everywhere… definitely where it shouldn’t be. Therefore, the bile is coming up and eroding my teeth. Plus… since I am always vomiting… that isn’t helping either. It just isn’t fair. I ended up leaving the dentist in excruciating pain. I had pain in my mouth and going up to my head because it was traveling everywhere. I thought I was going to explode. I was climbing the walls and nothing was cutting it. Luckily I took more pain meds and it kinda knocked me out for a bit when I came home. That is the beauty thing (if you want to call it that) about the meds… they really don’t help but “mask” the pain. All they do is knock you out for about an hr. once that hour is up… you are wide awake and the pain is back. I don’t want to imagine what it would be like though if these meds were not helping.

On a better note though, I have been trying to read.  That is just one more thing that the disease has taken from me. I used to be such an avid reader, but since I got sick… it has been really difficult.  By the time I get to the end of the chapter, I can never remember what I read in the beginning.  I used to have the best memory.  But… that is something that this disease has robbed from me as well. So… I am now reading the book DISCOVERY OF WITCHES by Deborah Harkness.

I am also trying to think of some good books an movies to bring with me to California.  It is going to be one long trip  and I definitely need something to do on the plane.  My dad and I usually watch tons of movies on the iPad.  So… if you have any suggestions, please feel free to let me know them.  One good thing about this illness is that I can see a movie or read a book over and over again because it is like reading or seeing it for the very first time because I can’t remember it.  I have been thinking about bringing with me LORAX and HUNGER GAMES.  But I can’t think of any other.

In addition, I have also been busy making my BUCKET LIST.  This disease has taken so much from me and I have had so much that  I haven’t been able to do, so I am making a list of all the things that I really want to do once I get better.  I really hope that I will be able to do it.

Well… just wanted to give you some up-to-date info. I think I filled you in on enough info that is going on with me.  If you have any suggestions on how to raise some funds or anything, please don’t hesitate to contact me through this site or at Spunkyfal@aol.com.  Any help you can give me would be greatly appreciated.

Well… just wanted to thank you again.  Talk to you soon.


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August 10, 2012


I am so sorry that I haven’t been in touch sooner.  I know that I promised that I would be keeping in touch, but things have been so horrible.  I have been feeling so horrible and I also got the worst news.  It appears that every time I think that it can’t get any worse… it somehow does.  You know MURPHY’S LAW?  They should change it to be MIRSKY’S Law (my last name) because it appears anything and everything that can go wrong with me does go wrong.  But… since I haven’t really talked to you in awhile, I am so glad that I got this opportunity to finally “catch up” with you… even if it is only for a little bit.

To begin with, I just got the worst news.  I wasn’t honestly expecting it at all, and I am really hit hard with the news.  I got the news that my “best” friend has died.  When I was in the hospital one time many years ago, I met a very dear person who was my roommate.  She was diagnosed with Cancer at the time, and we became the best of friends. I couldn’t have been blessed with a better friend because no matter how bad things got, she was always there for me.  She was a bit older than me, as she was about 14 years older than me, but she didn’t care. She spoke to me and took care of me as if I was the same exact age as she was.  She always made sure that I was ok.

We had a special relationship.  We always had a special bond with each other and said that we were a special team.  We called each other “Mario” and “Luigi” because just like them on SUPER MARIO BROTHERS battling those bad little koopas… we were going to battle our disease together.  No matter how bad things got, she never was pessimistic or had a “bad” attitude.  She always told me that “everything was going to be all right” and made the sun come out on the gloomiest days.  Whenever I was having a bad time with my illness, she was the one who would help me through it because she would get on my back to help me “push” through it.  She would never let me give up under no circumstances.  She was such a trooper and had the best attitude on life.  She never looked at a cup “half empty” and always looked at the positive side of things.  She even beat the cancer at one time.

So… we had a plan that we were going to always be there for each other be there for each other.  She was MARIO and I was LUIGI and like I said before, we were going to beat our diseases together.  We weren’t going to let our bad koopas win.  But, unfortunately, I found out last night that she past away.

I am not handling it well at all.  I had a feeling that something happened to her because she always called me or texted me.  A week would never go by without hearing from her, especially if I wrote to her or if she knew that I was having a problem or going through some rough spots like I have been doing.  So… with all that was happening with me now, I thought it was really strange not to hear from her.  I had just spoke to her about 2 weeks ago and she was just getting finished with surgery.  She had a small bowel obstruction, but as far as I knew… things appeared to be going ok and she was recovering nicely.  She was restarted on food and appeared to be going home.  I was not expecting to hear that the “worst” has happened and that she died.  However, when I didn’t hear from her, I tried calling her and leaving messages for her.  She never returned them of course.  I then found out that she had died.

I am not handling it well because now I feel like I have absolutely no one.  Everyone that promised that they would be there for me and promised that we would “fight” our illnesses together have disappeared.  My grandma was another person who was sick and promised that she would always be around “fighting” with me.  However, she too passed away this past March.  It appears I am the last of the bunch that promised to do the “fight.”  Why am I the last one?  So… I am really upset because I feel like I have no one.  When I got sick with my illness, I really lost everyone.  You really find out who your true friends and family are when you get sick.  Therefore, they were really special people to me even more so because they stuck with  me even when everyone “walked” out on me.  I will forever miss them, as they were such great “friends.”  They looked out for me,  cheered me on and supported me, made me laugh,  never let me give up, and  continued to “push me.”     They will forever be missed and forever be in my heart.

But… on the next breath… I guess I should tell you what has been happening with me because I am not doing well at all.  I don’t even know where to begin because there is so much to say.  I am getting ready again to leave for California.  Gosh… it feels like I just literally got back from California and I am leaving again to go back.  We are supposed to be leaving August 26th and staying for about a week.  I really don’t know how we are going to afford this trip and the trips that are going to have to come afterwards, but I guess we have no choice.  I am really hoping that through the kindness of others and through fundraising and donations, I will be able to have enough support to be able to continue going because my life literally depends on it.  I am literally rapidly deteriorating and I don’t honestly know how much longer I can hold on even though I am “trying” as much as I can to hold on as long as possible.

To think… I should have been in Florida now receiving the more intensive ketamine coma that I was supposed to have.  However, with my body deteriorating the way it is and with me having to go for the transplant and such, as well as the funds being the way that they are… we had to postpone the trip. We can only focus one thing at a time and right now the priority is going to California because we have to take care of my failing GI system and the brain tumor.  Of course afterwards I will definitely need the intensive ketamine coma because it will be needed to stop the disease from spreading. After all, the disease will probably be made worse after the transplant and all the surgeries in California and will need to be “helped” more than ever because it spreads and is made worse through trauma.  Surgery is one of the most traumatic things that can happen.  Plus… we didn’t have the funds that could allow me to go for the coma anyway, as it is very expensive.  So… hopefully by the time the coma comes around when we are done with California, I am only hoping that we will still have enough money to have the coma done in Florida because my life still depends on it.  It is like my life is so dependent on so many things and it all revolves around money.  Therefore, it is basically in the hands of others because unless I get help from other people, I fear that I won’t be able to receive the treatment necessary to help save my life.  In the meantime though, I am hoping to continue the comas that I have been having in New York even though they are no way as helpful or the same as the one that I would be having in Florida.

We are headed back on August 26th even though the doctors really wanted me sooner.  They really wanted me to come back this past week.  However, we just got back from California and there is honestly no way that we could have “swinged” going back this week.  I mean come on… we aren’t talking like they are just around the corner… u know? They are on the other side of the country and they are so expensive too.  We still didn’t even finish up paying for our last trip.  Plus… dad has to do some of his “work” as without him working, no money is being made and therefore, bills cannot be paid.  Dad is still trying to catch up on all his work that he missed out when we went to California 2 weeks ago.  Even going to California in 2 weeks will be a great hardship on us.  But… to go right now…. it is ludicrous.  It is just snowballing out of proportion with the bills. They just keep adding up and they are adding up quickly.  So… we needed at least a little time to pay some bills, gather some money, do some work… even though we knew that we would severely and heavily be in debt even with waiting this amount of time too.  But… at least anything would be better than leaving right away. U know?

Gosh… when we head back… our schedule is going to be so packed.  We are seeing so many doctors.  The main reason that we are going back is because we have to see the transplant team.  Yes… it appears that I definitely need the transplant because according to that surgery that I had the last time that I was down there… I have absolutely no contractions in my stomach or small intestines.  Essentially… my GI system is totally “gone,” as my stomach and small intestines are dead.  Therefore, I need to have a GI transplant that encompasses getting a new stomach, small intestine, large intestine, esophagus, spleen, pancreas, etc.  It is extremely dangerous, radical, and risky.  It is really rare to do too.  They have only really started doing them since 2008 and only 8 hospitals in the country really do them… Stanford being one of them.  However, not many are really done. I was reading about Stanford and all the different transplants that they did.  They were saying the statistics about how many of each different kind of transplant they do such as 1000 of this kind of transplant, 800 liver transplants, etc.  However, when it comes to the transplant that I need to have, they only did about 40.  However, at least it exceeds the “national average” so I should be thankful for that.  Right?

I am really nervous to be honest about it.  It is really risky and it runs the highest rejection rate of all transplants.  I am really nervous about it because we aren’t talking about a “simple” surgery.  The doctors even told me that it is definitely “no walk in the park” and that I would be hospitalized for months.  They said it would be a “real battle” and I would probably be hospitalized for months.  But, if all goes well and I don’t “reject” or anything… it would really be awesome.  I definitely need this in order to live because I am literally dying. I only weigh in the 60s and rapidly dying.  My little body is just shutting down and can’t take it any longer.

So… we are heading down to California to finally meet with the transplant team and to “finalize” and go over everything with them.  I am really nervous because I am having “attachment” issues as well.  I know… it sounds weird, right?  But honestly… I really am.  The doctors say it is kinda like having the “battered wife syndrome” because just like in the battered wife syndrome…. my organs are constantly abusing me and yet… I still love them and don’t want to leave them.  I actually never thought about it like that… but I thought it was funny how the doctors compared it to that.  The doctors said that just like an abused wife doesn’t want to leave her abusive husband even though she knows it would be better in the long run because she is so ‘attached’ to him and despite the fact that she is constantly abused by him for so many years… it is the same thing with me.  Despite my organs constantly abusing me… I still don’t want to leave my organs even though it would be better too.  I have been with them for 30 years and been through too much with them.  Plus… it seems weird to be known that they are going to completely “gut” me. I am really afraid to leave them because once they are removed, there is no going back.  I can never have those organs again.  I know I probably wouldn’t want those organs anyway because they aren’t any good… but still… they are still my organs.  You know?  So… I guess I am going to have to get over that feeling too.

I also have to get over the fact that I feel so horrible that I am actually “waiting” for someone to die. I feel so bad that in a way I am hoping that someone will die so that I can live.  I feel so horrible even thinking such a thing, but the doctors claim it is a normal feeling.

When I go to California, not only are we going to be seeing the transplant team, but we are also going to be seeing so many other doctors that we are going to be so very busy.  I just hope that my body is going to be able to keep up with all that is going to be going on because my body is so every weak.  I don’t have a lot of energy any more.  I have been diagnosed with conditions that affect the energy and oxygen content in me.  It appears that I can no longer get enough oxygen and energy to my body and cells that I require.  So… with all that is going on and me being so sick, I just hope that my body will be able to hold up with all the “running around” to doctors.  It is going to be one long week!

I have so many doctors to see and we have been setting them up.  In fact, there are more doctors to see than days of the week and therefore, there are multiple doctor appointments even in one day.  It is really stressful on my body when I have just one appointment.  Can you imagine what it is going to be like with all these appointments?

One of the other appointments that have been set up is with the brain surgeon.  I have a tumor on the pituitary gland and it must be taken care of.  It is on the pituitary gland, which is the “master” gland of the body and as a result, it is causing a lot of problems for me.  Not only is it causing problems in my head such as headaches, vision problems because it is located right by the optic nerve, etc. but it is causing hormonal problems as well and causing other things in my body to malfunction and go wrong because so many things are regulated by the pituitary gland, which is malfunctioning due to the tumor.  Even my bones are really deteriorating, which is something I can’t afford.  The doctors are really afraid that I am going to get a life-threatening fracture because my bones are so very bad.  To make things worse… the medicines that I am taking for my paralyzed digestive system are actually “feeding” the tumor.  We have tried in the past to stop the drugs, but it is literally impossible.

Wanna hear something?  When I was talking to the assistant today and telling her my blood numbers, she literally freaked out when she heard the levels that I had.  She said that it definitely had to come out.  But of course it isn’t up to her.  From the blood test that I previously had, the levels of the tumor are way out of control.  The highest the level should ever be is 23.  However, my level is 74.  This tumor definitely is causing problems and needs to come out. However, no doctor in the past was willing to touch it because of where it is located (it is so risky because it is right on the pituitary gland) and because of how complicated and risky my medical health is.

Yet, the doctors at Stanford are not like any other hospital.  They are hopefully going to follow what they are saying and going to “touch” me.  They are used to these very “high risk” cases and therefore, they are willing to operate on me.  Thank goodness because it really is causing  a lot of problems.  Not only are the bloods coming back, but I am also suffering from the actual effects of the tumor because I am having lots of vision difficulties and I feel a lot of “pressure” in my head and eye.  I have also been having black outs and such, but we don’t know how much is attributed to the tumors, autonomic dysfunction, or both.

I was really afraid that I wouldn’t be able to be seen at Stanford for the tumor because when I was trying to make the appointment to see the neurosurgeon, the original neurosurgeon that they wanted me to see was not taking on new patients due to a family emergency.  However, they found me another neurosurgeon who is supposed to be “top-notch.”  This doctor better be “top” because after all… he is operating in my brain and it is very dangerous.  I mean we are talking BRAIN surgery.  We can’t afford for ANYTHING to go wrong.  They aren’t sure if they will be opening my skull though and operating that way or if perhaps they can do cyber knife.  So… we will see when we go down there.  He is one of the most famous doctors though that operate on the pituitary gland and take off tumors from there. So that is good.

I am also going to see another doctor who is involved in the gastric pacemaker because the doctor said that if I really want to… I might be able to do that still.  Of course she said that I would have to understand that they don’t really “think” that it was going to work, but they will be only be doing it merely as a reason as being something that is “out there” and a possibility.  They don’t think it is going to work because they haven’t had really good results with it.  Plus, even if it did work… it would only be helpful on the stomach and wouldn’t have any bearing on the rest of my body like on my intestines and such. So… my intestines would still be “dead” and such.  So… is it worth it?  Also… going for the surgery can easily spread my underlying neurological disease, which is already spreading like a wildflower and on the rampage.  We can’t afford for it to spread and therefore, we don’t know if it is also worth trying as well because is it worth risking it for something that we don’t know is going to work and even if it does will only work on one particular organ and will still leave other organs “dead?”  Also… the pacemaker is a device and since I am so thin, I have no padding and cushioning. As a result, it can easily spread my disease too because of the trauma it causes from being a device in me.  So… what would you do?  My dad and I really have to decide because we really don’t know what to do.  We know deep down that it probably isn’t worth it at all because it hasn’t been proven to work or really be beneficial.  Plus… it still would leave my other organs “dead.”  But, when I think that it could prevent the transplant, it seems such like a wonderful idea because I know how risky and dangerous the transplant is.  So… we will see what happens.  I know that the best treatment probably is having the transplant, but if I knew that it would be a success and I wouldn’t have any complications, it would be such an easy choice.

I also am meeting with my other doctors as well. I have to meet with the neurologist/autonomic dysfunction doctor and GI doctor.  There are also tests that I am going to have to undergo as well.  So… I will be very busy.

Speaking of… I have to undergo some heart tests because of a medication that the GI doctor wants to place me on. Unfortunately, the medicine causes prolonged QTs and since I already suffer from prolonged QTs, they don’t know if I can take it.  It is basically the only drug left that I can take to “help,” so it would be a shame if I can’t take it.

I am not allowed to take any medication that would affect my heart in QT way. If I was… the docs would have raised my methadone because they would have loved to do it with all the pain and suffering that I have been in.  However, since methadone has been known to cause prolonged QTs as well, my heart doc has already said that I can raise any other med, but under no circumstances can I raise the methadone.  So… it would be the same under the new medication if indeed my heart does show the prolonged QTs with the new drug.  I have went for one test to see if I could use this drug, but the doc didn’t “type” my name into the computer and left the sex on the paper as “male!”  As a result, even though it really wouldn’t make a difference in the long run, the doctors at Stanford won’t accept it.  Therefore, I am going to have to go back to the doctor and have this test again so that my name can be typed into the computer (and so it can be printed clearly on the printout with the results) and so it can say “female” instead.  Gosh… what a pain.  It isn’t like I have all the time in the world to do this either. But, I have no choice.  I have to go back to the cardiologist next week to have this done.  The docs also made an appointment for me at the hospital in Stanford in case I am not able to get it done here, but I am hoping to get it done here because the sooner, the better.

I also started new injections today.  Like I said before, my bones are severely deteriorating.  The doctors are really afraid that I am going to get a life-threatening fracture, and then I will definitely have much more problems on my hand than we bargained for.  In fact… whenever I do go to the bone doctor(a.k.a. endocrinologist), he is always asking “Did you break any bones lately.”  I have been undergoing bone infusions, but they haven’t really been affective.  Despite the first time that they actually “built” bone, I have been losing bone since.  The doctors though say that it could be a lot worse without those infusions.  However, since my bones are so very bad, they had to do other things to help my bones because they are literally “paper thin.”

I have tried these injections in the past, but I was allergic to them.  However, with all that has been occurring with me, the doctor really thought that we had no other choice but to try it again. As a result, the doctor wanted me to have the first dose in the hospital in case something happened. At least I would be in a “controlled” environment and I would be able to receive the necessary “help” I would need if I did have a reaction.  As a  result, my dad and I went to Columbia Presbyterian today to have the injections started.  It just stunk that we had to go to that hospital to have it done because it isn’t like it is right around the corner.

Columbia Presbyterian is the one hospital that I hate going to the most. I hate going to all hospitals in Manhattan because they of the commute and traffic, but more so because of the parking.  It isn’t like the parking is right outside the door like the hospitals on Long Island.  Instead, they have the parking garages like 2-3 blocks from the hospital and as a result, you have to “walk” to the hospital.  Going to Columbia Presbyterian is the worst because not only does it take the longest to get to that hospital, but the garage also happens to be outside.  So… if it rains, there is kind of no place to take cover. Plus, where the hospital is located, it is really hilly.  As a result, when we are walking to the hospital, it is kind of difficult because we are walking “uphill.”  Being on crutches and everything… even though I am a “pro”, it still isn’t easy walking up hills and with me not having a lot of energy and oxygen… you can imagine how difficult it is.  Of course leaving isn’t so bad though because it is all downhill.  It especially stinks when it rains too because you have to do all this walking in the rain.  It is horrible for me because for someone that is so hypersensitive and in so much pain, any type of weather really affects me unless it is the perfect weather outside.  Therefore, the rain, sun, wind, etc. all affect me and cause me even more pain as I walk to and from the hospital, but I really have no other choice.

The endocrinologist is one of my favorite doctors.  He always sticks up for me when my dad “picks” on me because he is kidding around with me.  My endocrinologist and I even had a talk saying that “medically” I shouldn’t be existing.  He said that he doesn’t know what I am doing… but I really shouldn’t be alive.  Someone that weighs as little as I do… really shouldn’t be alive.  He said that all things considered… I am really despising the odds.  I told him that I am going to be his longest patient ever to live.

Anyway… the doctor of course was there when I was giving myself the injection.  I already give myself injections and of course they all have to go into the same place, which is my stomach because that is the only place that I have some “fat.”  My poor little stomach… how much can it take because it constantly is having injections daily, and it isn’t like it is one injection either.  You know? Well… due to how thin I am, the doctor wanted me to be really careful with this needle even though I have given myself injections already with other medicines.  He was afraid that due to how thin I am that I would puncture my pericardium or something, so he showed me how I should be positioned.  When he said that I could “puncture my pericardium,” I got really afraid because I never thought that was possible.  I was so afraid because I punctured my lung in the past and had to have so many chest tubes inserted and such because they couldn’t get it to stand up… I didn’t want a repeat performance. It was one of the worst experiences of my life!

When I did take the injection though, I did have a reaction.  The doctor made me stay in the hospital all morning and right by the nurses too  because I had to be monitored.  However, I did end up having a reaction.  I ended up breaking into a rash, getting light-headed, extremely dizzy, and have a huge headache.  I was really nauseous too.  All I could do was put my head down and such.  I was also really itchy.  I thought it was never going to end.  However, despite all these feelings, the doc still wants me to do it again because as long as I don’t go into anaphylactic shock or something… he wants me to take the injections because that is how bad my bones are and how badly they need it.  However, he said that I should take them as long as I can take it. He said that if it really gets unbearable… than let him know.  I was so very sick during this time and to think that I am going to get this way all the time I take this injection… I don’t know how I am going to handle it.  My dad already said to me that it was the longest morning of his life with me.  I told him that tomorrow I am not going to take the injection until he comes home because just in case we have to go to the hospital or something.  You never know, right? After all, I felt so sick this time… who knows what will happen, especially since it is only the second time I am taking it?

My mom’s birthday was the other day.  I really wanted to make her birthday really special for her because she does so much for me and I can’t thank her enough for all that she does for me.  She has given up so much for me too and it is definitely not fair to her for all that I have put her through.  She definitely deserves a much better life than the one that she has.  I have been such a “burden” to my entire family.  Anyway, with the money being so “tight” as it is, I really couldn’t afford much.  Therefore, I just bought her a nice card, a beautiful cake, and a chocolate champagne bottle.  I really wanted to make it nice for her because it can very well be the last birthday I share with her, especially if I don’t get enough funds to continue treatment or something happens during the transplant or something.  With how I am deteriorating, the doctors don’t think I will make it another year, so I really wanted to make it as special as I can for my mom.  I was told though that the cake was simply amazing.  I knew that she loved pistachio ice-cream and even though no one else in my family loved it, I still made sure she had all that she loved because 1/3 cake was pistachio/vanilla, 1/3 cake was vanilla/chocolate, and 1/3 cake was coffee/vanilla.  I even had freshly chocolate dipped fruit put on top because I know how much she loves it.  I really hope that she loved all that I did because I only wish I could have done more for her.  I know how much she would have loved to go “out,” whether it was for dinner or for an activity, but since I can’t do either… I tried to make up for it.


What I did for my mom for her birthday. I hope she liked it!

Well… that appears all that is going on.  I am really not feeling well, so I better be going. I am in desperate needs of support and funds and have been praying that I raise some money because my life depends on it. The bills are really growing and it is getting more difficult to pay for the treatment that I am having because of the cost.  I was fortunate that people have donated money and I am extremely thankful for it.  I am also extremely thankful to all the people who tried to spread the word that I need HELP!

However, I really wish that I could get on TV or in a magazine or something.  I can’t understand how other people manage to do it.  I see all these people with their stories and yet… no matter how hard I try, I can’t get my story across.  I wonder how they do it.  I desperately need help and unless I get some funds, I fear that I won’t be able to get the treatment to help me.

I can’t afford this alone and unless I raise some funds, I fear I won’t survive. I am too young to die and I have so much that I still want to do! My family and me are watching my life slip away. Someone please help me whether it is by donating, saying a prayer, or even by spreading my website and saying how I need HELP.

Love always,


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August 3, 2012



O my goodness.  Things are horrendous.  As I write this update, I am literally shaking.  By the time you finish reading this, you will probably be so confused with info… as my head is ready explode with confusion I just got the worst news ever.  I desperately need to find funds because my life depends on it.  I never thought I would be so desperate for money, but I am.  I don’t mean to be a “crier,” but my life literally depends on it.  I need to get back to California because my health is really bad and I just got really bad news today that unless I go back to California and back soon… I am surely going to die.  Of course it is all contingent on the fact that I have the money to do so though.

I spoke to my head GI doctor from California today and the news is not good.  I kinda was expecting to hear this bad news, but when you are expecting to hear it… you never are completely prepared for it until it actually hits you.  I definitely wasn’t as “prepared” for this news even though I knew all of this beforehand.  I knew that I was in really bad shape before I spoke to her, but hearing all the stuff that she found and what is going to happen… it really is freaking me out. Knowing it and like I said “hearing” it is completely different.

I have been waiting to hear from my GI doctor in California for a while.  However, she hasn’t gotten back to me because of the time difference.  She told me that she didn’t know if it was ok to call me because by the time she finished her workload in California, it was of course later in New York and she didn’t know if was alright to call me at 11 at night or so.  I told her that she could call me anytime that she wants because I rather hear from her than not hear from her at all.  I told her that she could call anytime of the day or night.  So… she said that now that she knows this info, she will definitely call me anytime. 

But at least I got to speak to her today.  The news wasn’t good at all.  We sat down and talked for about an hour and went over everything because there was a lot to talk about.  We had to talk about the surgery that I had about 2 weeks ago, what the tests showed, and what the prognosis and the further treatment was going to be.  Gosh… by the time we finished this conversation… my head was spinning.  I couldn’t believe what I was hearing.  I am like she said… literally dying.

The GI doctor told me that my GI system is officially “dead” and has officially “shut down.”  I can’t believe it.  I kinda knew it, but it is now officially confirmed.  The only hope of surviving now is the GI transplant, and this needs to be done ASAP if I have any chance of surviving.  During this time, I will get a new small intestine, large intestine, esophagus, and stomach. It’s very risky and only 8 hospitals in the country do it. It runs the highest rejection rate of all transplants.

The only place really to have it done is in California.  Like I said, only 8 hospitals in the country perform this radical surgery, and Stanford is one of them.  Stanford is the absolute best place to have it done because they appear to have the most successes with it even though it hasn’t been done so many times in the past.  It is so weird… I was reading up on all the different transplants that were done at Stanford and they said that they did so many different transplants like 800 liver transplants and such, but when they spoke about small bowel transplants, they only said that they did 40. Gosh… what a difference when compared to the huge amount of the other kinds of transplants that they do.  But… if it is any consolation, it does say that this is above the national average patient rate. 

Due to the gastrointestinal dysfunction, my intestines can’t digest food and absorb the fluids, electrolytes and nutrients essential for life.  I am essentially starving to death and my body is shutting down because I am not getting appropriate nutrition. I already weigh in the 60s, so I really don’t even have room to play around with. 

I need to get to California to have it done ASAP because I am really deteriorating fast. They wanted me next week but due to funds and such… I can’t get there til August 26th. I desperately need to raise money because these trips are very expensive and so are these treatments. Without these treatments, I’ll surely die. I’m so scared. Right now we can’t afford it and don’t know what we r going to do. It is really imperative I get to California because they have the best doctors and is the best place for my disease.  I have seen numerous doctors throughout the country, and this hospital is the best in the country.  Stanford is one of the pioneering institutions behind steroid-free immunosuppression, with the goal of diminishing the risk of diabetes, infection and hypertension. New research developments at the Stanford Institute for Immunity, Transplantation and Infection include the use of intestinal stem cells in transplantation and restoration of bowel function.  So, with that in combination with their fantastic doctors, I am really hoping that they will be able to help me. 

The plan is that we are supposed to go August 26th and stay there for a week.  I tried to ask if I could stay shorter, but the doctors insisted that I stay that length of time at the very least.  They really wanted me to stay longer, but they said that they wouldn’t hear of me staying shorter than that because there is just so much to do when I go down there.  In fact, when I asked the secretary to ask the doctor if I could stay a shorter length of time, it was a matter of seconds that she got a response from the doctor, which was “No… it has to be at least a week.”  These doctors really mean business.  I really wanted to stay as short as possible because of the cost of the trip and how expensive it is.  I don’t even really have the money to go I the first place, so I wanted to stay the shortest amount of time at the very least so that it wouldn’t be as costly.  But, they have me seeing lots of doctors when I go down and going for lots of tests and therefore, they said that I have no choice but to stay for at least a week.  I don’t know how I am ever going to afford this.

To make matters worse, not only do we not know how we are going to afford these trips, but we also don’t know what is going to happen when it comes down to the actual transplant.  After all, this isn’t a surgery where you have it today and go home tomorrow.  I will probably have to be in California for a good length of time, which is something that is really going to be hard on my family because of financial reasons.  My father doesn’t think he can’t stay with me for that length of time because first of all we can’t afford it and second of all, he has a business in New York and it will never survive if he is away for that length of time.  Plus, with him away from the business, there is no money to be made and how are we going to pay our bills or how are my mom and brother going to survive and live in New York with the house and everything since there is no income. 

When it comes down to the actual transplant being done, I will have to be in California for a while and I will need someone to stay with me.  I will need someone not only to be thereto make decisions in case something happens, but they play a very crucial role in the recuperation process.  It has been proven that hearts left alone and patients left alone after surgery end up dying because they don’t have “reasons” to beat. They need to have people to support them especially with this surgery type in order to make it through it and survive. It has been shown that people that have surgery and don’t have others around them during their recovery don’t recuperate well. Therefore, it is crucial to have people around during this time.  However, it is going to be difficult to do this when my dad can’t be in two places at the same time.  He can’t be with me and have the business survive at the same time.  Without him being in New York, there will be no income or anything and there is no way that any money will be made. Yet, I also need him. I don’t know what is going to happen. 

So, we are planning on leaving August 26th because my first appointment so far is on Monday with the Transplant team.  I am seeing a doctor who is supposed to be amazing with Small Bowel transplants.  I am extremely nervous and when I was making the appointment, I asked the secretary about the doctor.  The secretary said that this was his specialty, as he specializes in the management and treatment of intestinal failure.  He also specialists in nutrition rehabilitation… so he is hopefully the right doctor for me.  The doctor e completed fellowship training at Groote Schuur Hospital in Cape Town, South Africa, and is known internationally for leading advances in transplantation.  I really hope that he will be able to help me.

I am also going to probably need brain surgery for my brain tumor that is situated on my pituitary gland because it is getting worse and causing a lot of problems too.  We aren’t sure if it is going to have to be surgery where they will have to open up my brain or if they will be able to use “gamma knife.”  The surgery is very risky because of my complicated medical condition and where the tumor is located, as it is located on the master gland of the body.  I have seen doctors in the past and they have been hesitant to touch it.  However, with it getting worse and with me taking meds too for my GI system that actually “feed” the tumor, I kind of probably have no choice but to have it taken out.  As a result, they are having me see a neurosurgeon while I am done there to see what he has to say as well, but it looks like brain surgery is on the table as well. Everything is in a state of chaos.

To make matters worse… I also have to meet with another surgeon.  This surgeon is for a gastric pacemaker. The doctor is talking about possibility of doing a gastric pacemaker because there isn’t anything else left as an option to do. The doctor said that she doesn’t even think it will work, but it’s the only thing left that we haven’t tried and can be an option.  However, the doctor did say that if we have to be aware that they are only doing it as a “last resort” and because “there’s no other options left so they are just going to try it as an experiment.”

The thing is though that it would only help my stomach. It would do nothing for my intestines and therefore, we don’t know if it is worth it since my intestines are essentially dead as well.  Also… the doctor is kinda scared to do the pacemaker because it’s invasive surgery and she’s scared that it will really flare up the neurological disease and cause even more problems, especially since its basically on the rampage and spreading like a wildflower.  She said that since I’m so thin and everything…. She’s scared it would cause my neurological disease to get worse because it’s surgery, which us traumatic in itself, and then it’s machinery that’s being implanted into me. I’m really thin as it is, and since there is not a lot of “padding” and “cushioning”, she’s afraid it’s going to startup the neurological disease and makes it worse. But in the meantime when we go to California, she is having us meet with the surgeon for the pacemaker to discuss it as well. My dad and I really don’t know what to do. It hadn’t been proven to work and then with my underlying neurological disease… We don’t know if it’s worth risking it spreading. But then again… We are desperate and there’s nothing else to try.

The doctor told me that when she operated on me and did the exploratory procedure, I was one of the worst cases she has ever seen. Everything in the GI tract like the esophagus, stomach, intestines, etc. was way too dilated. In addition, all she could see was bile, bile, and more bile. Of course there shouldn’t if be that much bile, but she said it was probably because my intestines and stomach weren’t functioning. Now I know why I’m always vomiting up bile.

The doctor also removed parts of my esophagus, stomach, intestines, etc. to further biopsy them. It turns out that in my esophagus, I have too many eosinophils, which isn’t good. It could either mean that I am allergic to something in my belly or because of all the bile that is in there. But it’s too difficult to determine which is the cause, but she’s leaning towards the latter… Especially since I have such a high eosinophil count in my blood too.  This isn’t good because it causes dysphagia in my esophagus, otherwise known as extreme difficulty in swallowing. Besides the problems of having my esophagus being “paralyzed” and having motility problems of my esophagus, I am having severe swallowing difficulties.  The high eosinophil count makes the esophagus close up, which causes further swallowing difficulties and can be the cause of why I am aspirating too.

In addition, the doctor also found out that there were also absolutely no contractions in my stomach or intestines. I kinda knew that already because the nurse told me, but of course I needed the doc to say it in order to make it “official!”  Anyway… It kinda means my whole digestive tract is “gone!” There’s nothing really else that can be done.

After speaking with the doctor, the doctor also wanted to change my medication.  First of all, the doctor wanted to put me on a new medication called Zithromax. She thought that might help me be a little more comfortable.  However, due to all the medication that I am on (as I take over 50 pills a day), there was surely an interaction.  It turns out that there was an interaction with the methadone and I don’t know now if I will be able to take it.  I already have a bad functioning heart because of all that is happening and as a result, I already suffer from prolonged QTs among other things.  It turns out the Zithromax with the methadone would produce prolonged QTs and therefore, we don’t know if it is wise to take this medication because I am already suffering from this and it can be life threatening.  I am still awaiting to hear from the doctor what to do because I don’t know if it is “safe” to take this new medication.  The only thing is that the doctor did say that this is the only medication that is a possibility that could help me so if I can’t take it, I don’t know what other option I will be able to have.

The doctor also wants me to continue taking the Octreotide injections.  I took it before the surgery and had an allergic reaction to it.  She then gave it to me during the surgery again, and I had another reaction even though it was less because it was in a “controlled” environment and I was given Benadryl prior.  I really hated this medication because of the reaction I got from it.  Not only did I get the “itchies” from it, but it also killed when I took it.  I never had an injection that hurt so badly.  However, the doctor told me that I should try it one more time and if I am not able to tolerate it, then I should stop it.  This is just another injection to add to all my other injections, as I already take two.  It just stinks that I have to put them all in the same place every single day because I have to put them into “fat” and the only place to put them is in my stomach.

Speaking of injections… I have to start another injection for my bones.  I have had a really bad allergic reaction to this new med as well in the past, but due to my bones deteriorating the way that they have, the doctors are extremely fearful that I am going to get a severe life threatening reaction.  As a result, the doctors want to do something to try to “help” me, as my bones are deteriorating rapidly and getting worse and worse.  Therefore, the doctor is going to try the injection again even though I had a reaction to it prior.  He wants me to come to his office to do the first dose and then I will remain with him for a couple of hours afterwards in case something happens.  So… that is taking place this Friday.

Even though I am deteriorating and I was told that I am literally “dying,” you know what I told my head doctor in California?  I told her that I was just talking to my endocrinologist and he even said, “medically… there should be no reason that I am living.”  He said “You must be doing something right because there really is no way possible that a person should be living in the state that you are in.  We would have thought you would have died a while ago.  It is amazing that you are still around.” No one knows what I am doing, but obviously I am doing something right if I am still alive because nobody usually lives at the weight that I am at.  Plus… I am not malnourished at all.  I mean… looking at me you can clearly see that I am malnourished because of the way I look because I am bone thin.  I am essentially a walking skeleton.  However, according to bloods and such, I am not malnourished at all.  If you didn’t see me and you only saw my bloods and such, you wouldn’t think that I was malnourished at all.  Even the doctors think that is amazing because all my proteins and vitamins are amazingly good.  You would think that with all the vomiting and with all the not eating that I would be malnourished, but I am not.  It is simply amazing.  I told the doctors that if I haven’t died with all that I have been through so far, it isn’t in the cards for me.  They said that they “hope that is true.”

If you think that this isn’t enough, I did find out even more info today.  I also found out my bloods dropped again today. Gosh… I don’t know how much more my body, especially my heart, can take.  At least they aren’t putting me in the hospital as of yet.  They aren’t putting me into the hospital because they don’t think that it will help me and it possibly will even hurt me.  They all think that the best place for me is in California, so it is imperative that I get back there.

When I did speak to the doctors in California today, I told them how much I am trusting them.  I told them how much we are putting my life in their hands and told them how much we are depending on them to “save” my life.  I told them how I don’t want to die and I am depending on them to “help” me.  The doctor said that I am a very complicated person and that they are all trying as a “team” to help me.  They aren’t giving up on me.

I must say that I do have one great team of doctors in California.  They really are the best.  The only thing that stinks is that they are on the other side of the country.

In the meantime, I have written letters to my parents just in case something should happen to me.  After all, you can never be too prepared, right?  In the letters, it explains everything to them.  It tells them how I felt about them, how much I loved them, how much I appreciated everything that they did for me, etc.  It also explains where everything is located so that there are no “loose” ends and everything can be taken care of.  It is so that they know where everything is and what to do. It also has names of contacts of people who need to know that the time has unfortunately came. I did explain in the letter that I don’t want them to cry over me because leaving them was not a “punishment” for them.  At least I am out of my suffering and at least they can have their life back because not only have I been suffering in agony 24/7 365 days a year and never had a break, but I have been such a burden to my family.  They really have given up so much for me and I can never tell them enough how thankful I am to them and how much I love and appreciate all that they did for me. 

I really need to get back to California.  I am desperate because my life depends on it.  But like I said before, it really depends on money.  Without that… it is going to be impossible to go, which only means one thing… I am going to die.  I really don’t want that to happen and therefore, I am pleading for help.

I have tried so many ways to get help… flyers, websites, contacting the media, writing to people to ask for help, etc. but nothing has really come about.  I desperately need help and I need it now because I am at the point where if I don’t receive it now, I am definitely going to die.  I am hoping that people will be willing to help me out because if the shoe was on the other foot, I am sure that they would want the same.  I know that money is tight because the economy is bad, but this is my life we are talking about and it is too precious to be lost.  I really don’t want to die.

If there is anything that you can do… even if it is a suggestion as to a way to raise donations, I would really appreciate it.  I have a donations tab at the top of my page to click, which will bring you to a site that accepts donations for me as well.  Checks can also be sent to my parents Gail or Perry Mirsky at 246-10 Francis Lewis Boulevard, Rosedale N.Y. 11422.  Any help that you can give, would be greatly appreciated.  I am asking from the bottom of my heart.  It would really mean a lot to me.  I don’t want to die.

Well… that appears to be all. I will keep you posted on what is to come.  I am sure that there will definitely be more soon because my life always has something happening.  Never a dull moment… that is for sure.  Just if you can… please help me because I don’t want to die.  Sorry to be a “crier,” but this is my LIFE we are talking about.  You only get one chance at it!!

Love always,

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August 1, 2012



I figured that I would post an update since I haven’t written in awhile.  Lots have been happening, but just haven’t felt “well” enough to write.  Things have just been getting worse and worse.  When is it ever going to get better?  I keep thinking that it is going to get better really soon, but it just continues to get worse and worse.  I can’t believe how much “bad” stuff can be thrown my way.  I can’t believe how much “bad” stuff a person can be diagnosed with. It is at the point that you ever hear of MURPHY’S LAW?  Well… that is like my life.

Things have gotten really bad.  I am feeling worse than ever and the news that I am getting from doctors and such aren’t good.  It is imperative that I get back to California as soon as possible, but it is impossible to do so because of financial reasons.  However, I fear that I am only going to deteriorate even more and perhaps even die if I don’t get back there soon because of how bad things are getting.  We really need to get back to California because out of all the doctors that we have seen throughout the country (and we have seen a lot), the best place for me is in California.  I never have seen such knowledgeable doctors who are willing to help and who actually “care” about me.  They really are great!  I have such an awesome “team” out there that do stuff that no other doctors do.  I really feel comfortable out there.  I am also going to probably (99.9%) going to need a small bowel transplant, which entails getting a new small intestine, large intestine, esophagus, stomach, etc.  It is basically almost a “definite,” but we are just waiting for the final report to come back.  However, it is really risky and really radical.  This transplant has the highest rejection rate of all transplants.  Only 8 hospitals in the country do this transplant and Stanford is one of them.  Therefore, that is one more reason why I need to get back to California and back there fast.

However, like I said, “There really isn’t any money to go back to California.”  Between the cost of my illness and the traveling, etc. the money is basically gone.  The bills are amounting up and there really isn’t any money left to go back to California.  I never have seen it so bad.  Before… we were always able to “scrape” something up.  However… it is at the point that even that isn’t possible anymore.  Unless something is done to bring in some funds or donations, I fear that it is going to be “awhile” before I will be able to go back there because of the finances.  I really need help immediately because if I don’t go back and back soon, I fear that I am not going to make it.

Things have been really getting bad with me.  I can’t believe honestly how bad things are getting.  You can tell that things are getting bad because I used to write “updates” and such all the time.  If you look, I haven’t written in awhile.  I just don’t have the energy to write anymore.  I want to update you so much because there is so much to tell you.  However, I just haven’t felt well enough to do so.  So… I just have to wait til I feel “up to it” in order to do it or I write a little at a time.

I have been so weak lately.  I basically feel like I am coming out of my body and I feel like my body I literally “shutting down.”  I have been getting the weirdest sensations.  In plain English… I literally feel like my body is “dying.”  I never know if I am going to wake up the following morning because of how I am feeling.  It is a feeling that is so difficult to explain.  I think that unless you really experience the feeling that I am experiencing, that is the only way you will understand the feelings that I am undergoing.  I literally feel so bad and that my body is dying off that I don’t really know how much I have left.  As a result, between how I am feeling and the results I have been getting from doctors, as well as the news from the doctors as well, I have written my parents a letter explaining where everything is and what to do when the day should happen that I pass.  I explain to them in the letter how great of parents they were, how thankful I was to have them as parents, and a lot of other personal things.  I also go into detail as to where everything is and what to do so that everything can be taken care of and they will know what to do when that day finally happens such as who to contact, where things are located, etc.  I don’t really want to die, but you can never be too careful… especially with how I am feeling.  My mom won’t even look at the letter because she is saying that I will “NEVER” die.  But, it is actually time to wake up and smell the coffee.  I am not getting better… I am only getting worse… especially since I can’t get back to California!!

I haven’t really received the greatest news from doctors.  I finally got back some of the results from the bloods that I took when I went to California the last time.  When I went to see the neurologist, he took like 18 vials of blood.  He basically tested me for everything.  Well, we finally got answers on a lot of things.

First of all, it turns out that the brain tumor is doing worse and must come out.  Lots of my levels are getting worse since it is on the pituitary gland.  It is really dangerous too because it is located on the “master” gland of the body.  The neurologist said that the tumor must really come out because of all the problems that it is causing.  Not only is it causing elevations in certain blood levels that it shouldn’t be, but it is also causing severe pressure in my head and vision problems.  I constantly feel like there is so much pressure in my right eye and that there is a “fog” in it as well.

The neurologist said that the tumor has to come out, but I really need to get to California to have it done.  I have seen other doctors in other hospitals, but they have been reluctant to take it out because of where it is located and because of my complicated medical history.  Therefore, I must return to California because that is the only place that is willing to do it.  I have to have it done soon because it is only going to get worse, especially since the medication that I have to take for my paralyzed GI tract actually “feeds” the tumor. The neurologist said that they aren’t sure if they are going to literally “open” my brain and take it out or use “Gamma knife.”  He wants me to meet with the neurosurgeons, but of course that means that I will have to make another trip there to do so and like I said before, the well has run dry as of now with money and therefore, it is impossible to do so at the current time.

In addition, I also found out that I have another condition called CARNITINE DEFICIENCY.  The fatty acids cannot enter mitochondria and be used to make energy. Reduced energy production can lead to muscle metabolism being impaired, causing myopathy, hypoglycemia, or cardiomyopathy. Fatty acids may also build up in cells and damage the liver, heart, and muscles. This abnormal buildup causes the other signs and symptoms of the disorder. I am at risk for heart failure, liver problems, coma, and sudden death. I am already having symptoms that my heart feels like it is giving out and symptoms of heart failure. It isn’t good. Very scared. Also… looks like brain tumor on pituitary gland is causing more problems Waiting to hear more about that too. When it rains it pours! I just hope I can be helped and I can get to Cali again before it is too late.

Gosh… you would think it would stop there, right?  What are the chances to be diagnosed with all that stuff, right? How much can a person take, right?  Well… to top it all off…they think that I might have another rare disease called MNGIE.  I really have all the symptoms and it would explain a lot.  However, what are the chances that I have this illness, especially when it is so rare?  But… with me… you never know because anything is possible.

But guess what?  When I was going through my chart, I saw that I was indeed diagnosed with this illness.  The last that I heard from the nurse, I was told that we were still awaiting the final diagnosis of the disease.  I was told that the blood work for this disease was still “pending.”  However, if that was the case, why was it in my chart that stated I was diagnosed with this illness?  So… I immediately called the neurologist to find out exactly if I was indeed diagnosed with this illness.

Unfortunately, the neurologist is on vacation til Monday.  So… I won’t know exactly what is going on til then.  When I spoke to the covering physician, the doctor said that the bloods are still pending, but he did say that it was “weird” for it to be listed if there wasn’t some “proof” or evidence that said that I was in fact diagnosed with this illness.  He said that perhaps the neurologist received a letter that was preliminary already before the final blood work.  But, we don’t know for certain as of yet.  But, we just know that it shouldn’t be in my chart unless there was some info that came back that said that I was indeed afflicted with this illness.  But, I guess we will have to wait til next week to know definitively.  Even though this illness would clearly explain everything that I am going through because I must say that I have all the symptoms and when you read and learn about this illness, it describes my life… I am really fearful of having this illness because it is indeed life threatening, as no one as lived past 50 years old.  This disease is also known as Mitochondrial Neurogastrointestinal Encephalopathy Syndrome.

I have also been having a lot of GI issues.  It turns out that my nervous system and my GI system is not working right.  When I spoke to the doctors, they insisted that I am extremely complicated and I have a lot of doctors working on my case.  They said they are working on my case and trying to figure out what to do.  It is the first time in my life that a real “team” approach is going on.   I have the best doctors from all different specialties putting their heads together and therefore, I am hoping that between all of them… something can be done and will hopefully be able to “save” me.  After all, my life depends on it.

Anyway…. everyone here is on edge since we have to get back to Cali and there really isn’t any money to do so.   Dad keeps saying to me that he “isn’t going to let me die”… but I keep saying to him “it isn’t in your power.” I see the pain in his eyes and I see how much it hurts him knowing that I am hurting and dying and yet, no matter what he does… he can’t do anything to “help” me.  It even hurts him that something as simple as take me back to California for treatment, he can’t even do because of the finances.  All he can do is say “hang in there.  I am not going to let you die.  We are going to make it back to California.”  I really don’t want to leave my dad because I know how much I mean to him.  I am so afraid of what is going to happen to me, but I am more afraid of how my dad will take it.  I don’t think my dad will ever recover if something were to happen to me because I am his “little girl.”  My dad is not just my “dad.”  He is my “hero” and my very best friend.  If I could make it all better for him, I would.  I want to get better so much for him.

I can’t understand what I am doing wrong though because I desperately need help and yet, I can’t receive the help (financially) necessary to get me the help (medically) that I need.  I have tried so many ways of getting funds so that I can receive the necessary “help” that I can get.  I have posted flyers, made websites, contacted the media, wrote to famous people, etc.  I have even written to Queen Elizabeth because I am so desperate.  I was willing to try everything and anything… just so that I can get some help even though I knew it probably wouldn’t help.  I just figured that there would be no harm in trying. You know?  However, no matter what I did… they were all failures in raising funds.

It is so unfair that no matter what I do… it is unsuccessful.   It is a shame that they follow and bring attention by televising other stories, but no matter what I do… I can’t get my story across.  It isn’t fair.  I don’t know what I am doing wrong… but obviously I am doing something wrong.  I am just so tired of fighting.  I am tired of suffering.  I am tired of sitting on the fence and waiting to hear things.  I just can’t take it anymore.  I feel weaker than ever and I honestly don’t know how much longer I can hang in there.

I desperately need funds so that I can receive medical treatment, as my life depends on it and yet, I cannot receive them despite all that I have done in the past to get them.  I just can’t understand it.  I can’t understand what I am doing wrong.  I turn on the TV and I see other people on TV bringing attention to their own stories.  However, no matter how many times I tried contacting the media and such, I have yet the opportunity to bring attention to my story and to be able to publicize my story so that I can receive the necessary help that I need.  If only I could get my story across the media like everyone else does.  It might really help.  There are so many people in the world and even though money is “tight” because of economic reasons, if people would only donate $1, it would surely add up.  However, I don’t understand why I can’t get my story across the media, whereas I turn on the television and I see other people getting their story across.  What am I doing wrong?  I guess the saying goes… it isn’t what you know it is whom you know and unfortunately, I don’t know anyone so I am out of luck!!

I desperately need help and therefore, if you have any suggestions about raising funds or any “connections,” please help me.  You can leave me a comment on this website or you can contact me at Spunkyfal@aol.com.  Any advice or any help that you can give me would be much appreciated.

Want to hear something weird?  When I was younger, I was diagnosed with Mono.  However, they say that once you have Mono, you can’t have it again and it also always shows up in your blood as having it.  However, when they do Mono tests on me nowadays, it always shows that I don’t have it.  It is the weirdest thing.  They think that I have gotten so sick and such that it literally “washed” out all the antibodies out of my body.  Can you imagine?  I can’t even fathom the idea.  But apparently it is possible.

In the meantime, I went for a bone infusion today.  I desperately needed this bone infusion because my bones are really bad.  They are severely deteriorating because of the tumor.  The tumor is basically “eating” away at my bones besides the other reasons why my bones are deteriorating. My bones are so very bad that the doctors are worried that I am going to get a life-threatening fracture.  That would be the LAST thing that I would need. Each year I lose so much bone mass.  In the past year, I lost like 16% of bone in my hip alone.  It just is really bad.

So I went for the bone infusion today at Columbia Presbyterian.  The only thing that really stinks about going for these infusions is that I get so very sick from them.  I always get extremely high fevers from them and I get very achy from them as well.  It is normal to get the side effects of being achy and a slight fever from the treatment, but due to my medical condition of me being hypersensitive and no immune system and such, it really impacts me a great deal more. Everything that happens to a “normal” person is magnified in me.  Therefore, the fever to me is usually really high.  I usually get like a 105 fever, which is extremely dangerous to me because it is usually difficult to treat in a typical individual… let alone someone in my given situation.  Also, the achiness that the normal individual feels is magnified for me and therefore, it feels like I have been hit by a ton of bricks. I feel like I got hit by a cement truck, especially since I am already suffering with TONS of pain due to my current painful condition that I suffer 24/7 265 days a year.  I already suffer from a painful neurological condition that I don’t get a break from and therefore, this only makes it so much worse.  To think… I am on such potent meds for my painful neurological condition already and they don’t even “cut” it.  You can’t imagine how much pain I am in now because I have all this added pain.  It just never ends.

This bone infusion makes me so very sick that my room looks like a “walk in pharmacy.”  I have everything lined up on my desk so that I can try to help myself as much as possible.  But, no matter what I take… it is like taking water because nothing seems to help.  If the meds are actually doing something, I don’t want to feel like what it is like without them. You know?

I had such a hard time with the bone infusion today though.  They brought in a special person today to start the IV because of how much pain I am already in and how “sensitive” I am.  A typical IV stick is like someone sticking a knife in me because I am so hypersensitive.  So… to make it as easy for me as possible, they brought in the best person to start the IV.

I have really been getting more hypersensitive than ever.  I can’t even sit still anymore for an IV placement.  My dad couldn’t believe how bad I have gotten with just sitting for an IV.  I used to be able to get IVs easily.  Now… I can’t even sit still.  It has gotten so bad that now I can’t even get any IV placed in me without getting lidocaine placed in the lines so that it “numbs” the line.  I am just getting worse and worse.

Want to hear something funny though?  When the IV was putting into my arm, they were trying to keep me calm and take my thoughts off the pain of the stick of the IV.  Therefore, they were talking to us about our trips to San Francisco and what has been happening lately.  Anyway, the doctors said to me “You must really hate hospitals by now!” I was like “U THINK?”

Everything is still up in the air as to where we are going from here with the bones.  I am probably going to have to try giving myself injections again for my bones.  I have done so in the past, but had an allergic reaction to it.  The doctor wants to try me on it again, but since I had the severe allergic reaction in the past, he wants me to come in and do the first dose with him just in case something should occur.  So… it looks like that will be occurring probably next week.  Just another injection to add to all the others.  What stinks though is that since I am so thin, I don’t have many places to choose where to put that injection.  So… I have no other choice than to put all three injections into the same place, which is my stomach each day.  My poor stomach.  It hurts so badly, especially when I am in so much pain already on a daily basis and I am so hypersensitive too.

My blood work is also falling.  I have another appointment for bloods on Friday.  Hopefully it won’t fall again because it is already in the “danger” zone.  I don’t know how much more my heart can take because how long can my heart play around in the “danger” zone without being seriously hurt.  I mean… I can easily have cardiac arrest or have an arrhythmia with the level that I am in now.  It is just that they don’t want to put me in the hospital right away for this condition because the hospital is the worst place for me… due to infection (I have no immune system) and how I am treated (as I can’t be treated like a typical patient).  Plus… there is no guarantee that it would even benefit me because there is no guarantee that it would bring up my bloods.  Even if it does, it probably would only go down again once I leave the hospital, so unless I actually “live” in the hospital… it probably wouldn’t matter.  You know?

Have you been watching the Olympics?  I have been busy watching the OLYMPICS.  Then again… they are the only thing on TV.  I am obsessed with Gymnastics.  I love that sport.  Too bad I am so old because I would love to have been a gymnast.  Too bad I went into figure skating instead.  But… my time has come and went and no more can I be a sports competitor in that sense.  Have you been watching the Olympics?  I had a gut feeling that the women were going to win gold from the beginning.  Usually when I have “gut” feelings… they are usually right.

I can’t wait to see the new BATMAN movie that came out.  I just love the BATMAN movies, but since I can’t go to the theater, I guess I will have to wait for it to come out on DVD.  So… guess I will just have to wait a little longer.

I have also been trying to read as much as I can.  Due to my illness, it has been really difficult to read since it is difficult to remember things.  To think… I one time had the best memory, as I had photographic memory.  So… I am still trying to regain the ability to read novels, as it is a constant battle.  I am trying to read a great book called A DISCOVERY OF WITCHES by Deborah Harkness.  It is a really good book, so I am hoping to be able to finish it.It is a trilogy, but only the first 2 books are published so far.

Well… guess that is about it.  I will keep you posted and let you know more when I have more to tell.  Thanks again for all your encouragement and support.  Again, if you have any ideas or suggestions for raising funds, please let me know because I desperately need to get back to California because my life depends on it.

Love always,


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