Please help SAVE MY LIFE!

February 16, 2013


 Here is just another brief update on what is happening.  Don’t know how coherent or long this will be because just got home from a ketamine coma and the anesthesia is wearing off.  I am really not feeling well, and as the anesthesia is wearing off more and more, the pain is getting worse and worse. 

 It surely stinks that I am becoming more and more in pain as the time is progressing.  But at least I was “resting” for the day while I was in the coma.  But, I guess now it is ‘payback’ time for all that I did today.  My body hates when I ‘bother’ it.  Now, as the anesthesia wears off, I will be suffering even more until my body stabilizes again.  The autonomic dysfunction will severely worsen and so will the pain.  Everything will also feel so much worse than it usually is (which is hard to imagine since it always feels so horrible) because I am going from feeling kinda (ok which is hard to imagine because I never get a moment free from feeling suffering) to being in severe pain.  It isn’t a gradual movement either… it is like SLAM!!

 Ugh though… besides the pain, I am suffering so much with my tummy too.  My stomach feels so expanded like I am pregnant (even though I know clearly that I am not). It feels like my stomach is inelastic and can’t even expand a millimeter more.  I am soooo thirsty too and every time I try to drink something, my stomach hurts even worse because it can’t expand any more at all.  Nothing is making me deflate.  I literally need someone to pop me like a balloon.  It feels like there are thumbtacks in my stomach and I am incapacitated with pain.  All this because of my paralyzed GI tract.  I just wish they would find a way of helping me because nothing helps.  I literally have to lay here like this wait for it to pass.  It could take hours for it to happen, but in the meantime… here I am suffering and unable to move.  When is this suffering going to end?  That is why I wish I could stay in the coma forever.  At least when I am in the coma, I don’t have to be bothered with all this. 

 I had a coma today, as well as back surgery.  I am still getting pains down my left leg and knee and we are not sure where they are coming from.  We think it is partially due to my illness and such, but we aren’t completely sure that it is 100% from that because I can’t walk on it, extend my knee (even when sitting), or even touch the one tendon/muscle/nerve going down my thigh to my knee.  I literally collapse when I try to stand on it and everything.  I am also severely discoloring and even though that is a known fact to happen with my illness, it has never ever been this bad.  I have had discoloration where I went to a deep purple discoloration and such, but never to a BLACK and never remained black either… even when I raised it.  Usually when you raise the body part that is turning discolored, the normal coloration will return to a point.  However, that has not been the case lately and therefore we are getting scared because blackness means that no oxygen whatsoever is getting to the tissue and cells and tissue are dying.  We are so afraid that I am going to lose my legs and such. 

 Since I have had this discoloration for so long with my disease, the doctors have always been fearful of me losing my legs.  They said that even if I was ‘cured,’ it was a good possibility that I could lose my legs later on because of all these years that my legs and other extremities have been deprived of oxygen and turning colors.  However, it is my legs that are the worst.  It is almost like a diabetic when their toes become black and have to have them amputated except I don’t have diabetes and it is more than just my toes.  But, I never really wanted to believe them because they never turned this ‘black’ before. 

 So… since I have been having all this additional pain and discomfort, as well as the discoloration and such, the doctors wanted to investigate further where it was coming from.  They wanted to see if it was from my disease or from something else.  It was kinda weird to be coming from my illness because the pain that was occurring from what I was explaining was only down a specific part of my thigh and around the knee in addition to all the other pains that I was feeling.  So, they originally thought that it was my hip because I broke it a couple of years ago and thought maybe it was contributed to that.  They thought that perhaps it was being cause as perhaps the way it healed or maybe because of arthritis from there or something else attributed to the hip.  After all, I never had surgery to repair my hip when it happened even though it was so warranted.

 I couldn’t have surgery even though I needed it so badly because of my illness.  I am also so thin that the screws/bolts would never be good for me.  As a result, I was on extreme bed rest for like 16 weeks.  Can you imagine?  My dad literally carried me around wherever I needed to go for that amount of time while everyone said a prayer that the hip would take and I would avoid the necessary surgery.  Thankfully it did.

 However, after looking into the pain coming from the hip, it was proven it was not coming from there. So they were then thinking it was coming from my Spine… more specifically the L3 nerve.  So… they did surgery on my back a couple of weeks ago and then they did it again today.  It really isn’t helping or doing anything, so I am highly doubting it is from there.

 Either way though, I had the coma today so that meant at least I had a day of “rest.”  So at least that was good because I have so much on my plate lately.  Not only have I had to think of so much and make so many decisions, but the pain has also been out of this world.  Everything is just worsening. 

 Want to hear something hysterical?  I found out that when I am under the coma, my dad does various things to keep himself busy.  I mean… he has to do something when I am under the coma, right?  He sits there the entire time, which is like over 8 hours just looking at me, so he must get bored, right? So he has to find some way of keeping himself occupied.  I usually pack a bag of food for him that he goes through easily.  I pack him granola bars, nuts, etc.  He feels funny having ‘lunch’ there in terms of a sandwich… but he doesn’t feel funny eating all this ‘crap.’  Luckily, the staff at the place is so nice there and really goes out of their way to make us feel welcomed.  They make us feel like family and always ask my dad if he wants anything.  Of course my dad turns them down though because he doesn’t want to ‘bother’ them.  He suffers from wanting something rather than to say, “yes” to an offer.

 ImageMy dad is the weirdest.  Not only does he like to grab my camera and take pictures of anything and everything… from me to him (which includes his hair, his bald spot, his teeth, his eyeballs, etc.) but he also sits in the chair and spins around in it like a little kid.  He literally spins around and sees how many times he can go around without getting dizzy.  Can you imagine?  I can’t believe that he does that.

 I am so lucky though that I have my dad there even though he does all these weird things.  I feel so ‘safe’ and comfortable when he is there.  When I first started going for comas, they wouldn’t let him into the room.  As a result, I used to prepare my iPod with all this music and such so that it would keep all the hallucinations and dreams away because ketamine is notorious for causing it.  Ketamine is really scary and going into a coma is scary in itself too.  I have to constantly remind myself that I am in a coma and can’t move because even though I can hear everything going on, I am literally paralyzed.  People don’t realize that people in a coma are still very much conscious to a point. That is why it is important to have people visit comatose patients because they can tell when someone is present and not.  So… since I was all by myself, I used to have my iPod to keep me company and to avoid having those fears.  However, since I am now allowed to have my dad… I don’t use the iPod so much because this way I can hear my dad.  My dad is still getting used to that fact that I can tell everything that is going on even though I may appear not to be able to.  I can wake up and tell him everything that has happened even though he thinks I am ‘sleeping’ and unconscious. 

 I am also so lucky to have my dad there because since I am so overly sensitive with my illness, I need extreme care especially when transferring from one place to another.  Therefore, when I am under the coma and need to be put into the operating room, it is easier for my dad to carry me than for them to first transfer me into a gurney and then onto the operating table and then visa versa.  Plus, my dad knows how to carry me and be gentle, so it is better off that way too.

 Anyway, guess what happened?  When I went into the operating room today with my dad and the doctor was getting me situated after my dad placed me on the table, I started to scream in pain because they were touching me.  For me to be in a coma and to be screaming like that… you can just imagine how much I am in pain because I am supposed to be “unconscious” and not feeling any pain whatsoever.  So you know what the doctor did?  He started squeezing the IV bag with all the mixture of meds faster and faster to put me into a deeper coma.  Well… that was the end of me complaining.  My dad told me that clearly “shut me up!”

 I also learned today at the coma that the medications that I am taking are extremely a ‘lethal’ combination and the worse combination that I can take.  However, it is the only combination that works, so I am literally playing with fire.  I take over 50 pills daily and I found out that the combination of taking Morphine and Nucynta together can literally kill me very quickly especially in the state that I am in.  When my dad heard this, he wanted me off the drugs ASAP.  My dad would rather me suffer than to have anything happen to me because he is ‘selfish.’  He doesn’t want anything to happen to me.  I know that if anything did happen to me, he would never recover.  But, since this is the only thing that ‘helps’… there is no way I am going to come off of it.  If I am feeling this bad and it is the only thing that ‘helps’… there is no way that I am going to not take it and feel worse.  I would definitely never make it then.  I would go insane.  So… I am willing to take the risk. 

 We also spoke with the ketamine doctor about a new form of treatment that we are thinking about trying.  We are thinking about trying Hyperbaric Oxygen Chambers.  The only thing is that it is quite expensive.  Although we are fortunate that the place that is giving it is willing to work with us and give us a ‘discount,’ it is still a problem when you have absolutely no money.  When you are broke, you are broke.  There is just no two ways about it.  As J.D Salinger put it in CATCHER IN THE RYE, “Goddam money. It always ends up making you blue as hell” and George Bernard Shaw said, “Lack of money is the root of all evil.” So… since we don’t have the money… we are thinking long and hard about this because even the minimal amount that they want us to pay is really too much, especially when you have difficulty paying the mortgage and putting food on the table already.

 In addition, besides the money issue, I would have to commit to at least going to the chamber 5 times a week for at LEAST 20 sessions.  So, we are talking basically every day for at least a month.  That is really asking a lot of my dad, especially when the chamber isn’t even located around my house.  My dad would literally have to give up so much work to do this because of the traveling to and from the place, as well as the two hours that I am in the chamber.  So, by doing the hyperbaric oxygen chamber, it literally kills the entire day.  Since we are struggling so much with the finances, we really need to consider this because it entails my dad missing so much work and when he doesn’t work… no money is to be made and bills can’t be paid.  Plus, the business isn’t doing well and no business will be going out if he can’t work.  So not only will out family suffer because we will have no income, the business will suffer because there will be no one to do the work.  You know?  If anything happened to the business because of me or if my family lost the house (which is basically the only thing we have left now and even that is getting really difficult to pay the mortgage), I would never forgive myself.  So, we really have to think long and hard about this because nothing would be worse than wasting this time and money because it is going to be a great hardship.  After all, it isn’t PROVEN to work.  This is just going to be another ‘experimental’ procedure and since I am such a rare and complicated case that had nothing worked in the past… who knows what will happen this time.  You know? 

 Let me tell you a little though about the Hyperbaric Chamber that they want to do on me.  They will place me in the Hyperbaric Oxygen Chamber for 2 hours each week.  It seems like something that you watch from outer space, right?  But if this works, I would be so grateful.  They have been doing this on many patients with neurological diseases such as Diabetes, wound therapy, thermal burns, gangrene, carbon monoxide poisoning, osteomyelitis, stroke, autism, etc. and have been getting good results. However, it isn’t covered by insurance for my condition because it isn’t backed by scientific research and anecdotal evidence alike.

 You are actually given 100% oxygen in the chamber.  Hyperbaric Oxygen therapy is the use of prescribed high-pressure oxygen, which is the use of oxygen at a level higher than atmospheric pressure.   Hyperbaric oxygen therapy increases the amount of oxygen your blood can carry, which enables the oxygen to be dissolved into the hard-to-reach plasma, lymph, and the cerebrospinal fluids surrounding the brain and spinal cord, providing a greater opportunity for healing.  In fact, under these conditions, your lungs can gather up to three times more oxygen than would be possible.  An increase in blood oxygen temporarily restores normal levels of blood gases and tissue function to promote healing and fight infection. 

 Another wonderful feature of this therapy is that it reduces swelling, decreases inflammation and stimulates the growth of step cells. I have all this swelling and inflammation in my body due to my illnesses, especially my GI tract has it because of the paralysis and such, so hopefully it will help it as well.  I am also in pain because of all the inflammation occurring, so perhaps the pain will decrease as well by having this therapy.  By stimulating the release of substances called growth factors and stem cells, it promotes healing. Finally, it even strengthens the immune system by creating an adaptive increase in one of the body’s antioxidants (superoxide dismutase), and free radical scavengers.  As a result, it promotes the ability of white blood cells to fight disease and infection.  This would hopefully help me because I don’t have an immune system and can’t fight anything.  Therefore, I am susceptible to everything and if I should get anything, I can clearly die easily because everything is magnified to me.  Even a simple cold is like the flu to me.   

So clearly, it might have beneficial results if it did indeed work for me.  If I did go for it, I would go down to about 33 feet below sea level, which is equivalent to 2 atmospheres.  It would take about 9 minutes to reach that level and then it would also take 9 minutes to come up out of it because you have to go down and up gradually because technically you are being “compressed” and “decompressed.”  While essentially painless, some patients may experience discomfort in the ears similar to altitude change during air travel or driving in the mountains.  However, once you are down to the designated level, I should feel nothing and all I have to do is lie there and let the oxygen do its work. 

 There is plenty of stuff to do there to keep you occupied.  You can watch TV, movies, sleep, etc.  There is even a telephone so you can talk to the person that takes you because that person is allowed to sit next to the chamber with you.  I did laugh though because the technician that does the chamber said that I probably wouldn’t like his movies that I had on hand and would probably want to bring my own because they were all “action” movies.  Little did he know that my dad only likes “action” movies and therefore it would be the only thing that would keep him interested.

 ImageThe only thing that is bad about the oxygen chamber besides the money issue is that you can’t wear anything or have anything in there since it is 100% oxygen. Pure oxygen can cause fire if there is a source of ignition, such as a spark or flame, and adequate fuel. Because of this, you can’t take any items into the hyperbaric oxygen therapy room that could ignite a fire, such as lighters or battery powered devices. They give you a whole list of things you can’t bring or wear, but that should be the worst of it, right?  You can’t wear basically anything including hairspray, nail polish, deodorant, make up, perfume, etc.  You can’t even wear your own clothes or even socks.  You can’t wear anything that has elastic.  So they do give you special 100% cotton scrubs to wear.  However, they already said it will be tremendous on me because they only have one size.  Oh well.  I just wish I could wear my stockinette on especially my bad foot because anything (even air) that hits my left foot (which is my worse of the two feet) causes me more pain than anything. I also hate looking at it too because of the way it looks. However, that isn’t allowed either. 

 So… we really need to decide on what we are going to be doing because we need to start making plans.  My dad’s ‘busy’ season will hopefully be starting soon and he could really use the work.  Therefore, he really needs to be around for it because if he isn’t, he will miss it.  This ‘busy’ time is only short-lived and is only in the springtime and summer because that is when the weather breaks and bugs occur, especially termites.  So…. He can’t afford to miss it because this is the time money is made and he depends on this time for the income to come in so he can pay the necessary bills.  So… we really can’t wait so long because we really don’t want to take him away from it.

 In addition, I am supposed to be leaving in March for California to be tubed and put into a ketamine coma while I have this ‘tubing.’  They are trying to buy time because my body is rapidly deteriorating so much.  They don’t know how much more time that I have.  They also want to make me stronger because I need the transplant that is so rare and risky, and they don’t think I will survive it in the state that I am at all.  So, they are planning on tubing me and putting me into the coma at this time so that my body will hopefully not ‘reject’ it.  Hopefully the coma will make me so comatose that my body won’t know it is there.  If that doesn’t work, they are talking about putting in a central line and giving me TPN again even though I failed it in the past.  They are going to try it again, but even that is really risky and can’t be done, if at all, for long because it can cause a massive infection very easily especially since it is in the central line.

 But, since we are having a huge problem with money, we don’t know if that is going to happen.  March is basically 2 weeks away and right now we can’t really afford it.  Plus, if we end up going with the hyperbaric oxygen chamber, it will really take a huge chunk out of our pocket.  So… we really need to make decisions because the wrong one can really kill me.  By staying here and putting off California for this oxygen, I am really really really taking a big risk even more than ever because I definitely can’t afford both at this time.  We are thinking if I went with the oxygen that I would go to Cali in May, but we don’t know if I can last that long.  My BMI is 11.7 and I am barely weighing in the 60s.  So, time is really in the essence considering females can’t live below a BMI of 12. 

 We are also thinking about going to Florida as well because that is where my ketamine coma doctor for my neurological disease/autonomic dysfunction disease is located.  Even though I need to have a ketamine coma for my neurological disease/autonomic dysfunction disease badly, it is different from the one I will be receiving in California and therefore, I need to have it done in Florida.  This will clearly be additional expense because it is not covered in Florida and will cost me over $20,000.  This doctor is also the doctor that is supposed to be sending me out of the country because the amount of ketamine that I require is not FDA approved.  I really am deteriorating from the neurological disease/autonomic dysfunction as well, so we really are between a rock and a hard plate… we really don’t know what to do or what to do first.  The wrong decision can really be the wrong one and cost me my life.

 In the meantime, I am scheduled for a vascular surgeon on Tuesday since I am turning black.  So… we will see what he says.  Even though I wanted to see a different one, he wasn’t covered by my insurance plan and therefore, I had to seek the help of a different one.  I just hope that he will be able to help me. I hate being tossed around like a hot potato because they don’t know what to do. You know?

 It is getting really difficult to hang on.  Even taking medications are getting impossible.  When I can’t even get down my ice pops, you know something is really up.  But… I am still trying to hang in there.

 ImageMy books that I wrote for my parents finally arrived.  They arrived just in time for Valentine’s Day.  They loved them.  I even wrote a little note on the inside cover to each of them to personalize it to them even more.  I really hope that they like it.

 Wanna hear something?  Wanna hear a miracle?  Remember how I said I lost my iPad on the plane when I went to Florida?  Well… guess what arrived in the mail the other day?  My dad said it would never happen.  The plane was on its way to Las Vegas after and he said to me “someone’s luck started earlier than they expected.”  I never even got to speak to anyone.  All I could do was fill out a LOST AND FOUND form.  But… it finally arrived.  I thought for sure I would never get it back, but I did.  What luck, right?  I had locked it from my phone when I found out I lost it and put a sound on it to play when it was turned on.  So you know what happened?  When it arrived at my dad’s office, the box was blaring. My mom (since she works there) couldn’t imagine what it was.  I got notification that it was found on my phone and since I did, I located it on the map where it was and saw instantly that it was at my dad’s office.  I immediately called my mom up and told her that it was there.  Then she knew and realized exactly what was in the box making all that noise.  What a story, right?  If only my computer now would turn out to be such a great story because I still have the broken laptop.

 My laptop had broke a day or so after returning home.  Unfortunately I lost everything on the computer too.  However, since I was so low on funds, I couldn’t afford to get a new one.  I lived on my laptop too because since I can’t get out of bed or off the couch, I used to spend all that time on the computer there. Even at night, it was great because I would stay in bed and be able to be on the computer.  It was great because this is the only contact I have on the outside world since I don’t get out.  But… it broke and now I am trying to fix it even though APPLE told me it is a ‘lost’ cause and I know deep down it is too.  But, what can you do when you have no money, right?  I am in the process of selling some stuff, so maybe when I do… I will have some money for it. 

 Well… going to get going… not feeling well at all.  Hope everything is well too. Like always, if you have any fundraising ideas or can help in anyway possible by spreading the word that HELP is desperately needed or bringing attention to my cause, I would really appreciate it. 

 Thanks again for all your encouragement and support.  I would definitely not be here today if it wasn’t for you. 



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February 5, 2013



I figured that I haven’t written during this entire trip and now that I have info… I guess it would be a good time to write to let you know what is going on. 

 Well… thank goodness I am coming home tomorrow.  I know… I wasn’t supposed to be like coming home til like Wednesday, but we changed the tickets to be coming home tomorrow (well later today since it is like after midnight).  This trip has been nothing but a COMPLETE disaster… from the minute we left New York.  I knew when I woke up the day we were leaving and I was sick as a dog, it was not a good sign at all!!

 I was so sick the day we were leaving… sicker than usual.  I pleaded with my parents not to go, but of course I lost.  I knew that it was in the best interest for me to go, but I was so very sick.  Besides my usual illnesses… the neurological illness, autonomic dysfunction and gastroparesis… I was extremely nauseous and had a severe stomachache (more so than ever) and I had a bad earache and runny nose.  I had a bad cold and because I was sick, it was making my regular diseases less because anything that impacts my body stirs up my neurological disease and also impacts my autonomic dysfunction.  Plus… when I do suffer from a cold, everything is ‘magnified’ because I am so hypersensitive.  Therefore, a simple cold to me is like getting the ‘flu’ to me.  So… I was really suffering.  But, I really had no choice but to continue going to California like this because we had tickets to go and I knew how important it was to go.  After all, we had this set up for awhile and they were expecting us. If nothing else, I am really deteriorating and time is definitely of the essence.  So what other choice did I have?

ImageIt was snowing when we left.  I never saw anything like this when we left because they had to de-ice the plane.  A guy came over in a truck and went up in a cherry-picker while holding a hose.  He looked like an alien and appeared like he was going to put out a fire.  Only when we the stuff came out to take off the ice, it looked like a scene from GHOSTBUSTERS because it looked like the airplane was being SLIMED. 

ImageWe tried to keep ourselves busy on the plane since it was such a LONG trip.  We watched LOOPER and an episode from the television show called THE FOLLOWING.  Dad also had fun with the camera.  I can’t leave him a second alone with it because he goes “camera crazy” with it.  He literally will sneak the camera away from me when I am sleeping and take pictures of everything and anything.  His favorite ones are of me sleeping and of his eyeballs.  I wanted to get  a picture of the two of us together, but he didn’t want to bother another passenger to take it.  He hates bothering other people to take pictures.  So, every time I tried asking someone, he got in my face and in my way I couldn’t.  So, I did the next best thing… I tricked him!

 ImageDad hates having his picture taken as well.  So… I had to trick him in order to get it.  So… I opened up PHOTOBOOTH on the laptop and took a picture of us through that.  It wasn’t the best picture that we could have taken, but at least it was something!   

ImageWe had a stopover this time in Denver, Colorado.  We never stopped there before.  It was really weird landing there.  Besides the  mountains in the distance, there really looked like there was no life there.  All we saw were plains.  It looked like there could be farming, but there were no farmhouses.  However, where the mountains were… it really was gorgeous. 


Well disaster struck right away.  It turned out that I lost my iPad mini, which is my lifeline. I was so upset because I needed it so much and I really can’t afford to get a new one.  After all, these things aren’t cheap and I don’t have any extra spare cash sitting around.  I depended on that thing so much because I used it for everything.  It was my sense of fun and relaxation. I use it to keep me occupied because I use it all the time to read and play games on it.  After all, I don’t sleep and I am awake all night.  This way it gives me something to do during those long and lonely nights.  In addition, since I don’t go outside, it is my companion during the day so I am not completely “alone” and it gives me something to do.  It is the best thing that I could have ever brought because since I am on crutches and everything, I don’t have to worry about carrying books or games because I can load everything onto this one device.  It makes it much easier to carry things especially when I travel.  Finally, when I go to the doctors and hospitals, which I am always at, it is the best thing to have because not only do I use it to keep me occupied, but I also used it to relieve my stress and to keep me relaxed.  I always get so stressed and scared and uptight at the doctors/hospitals, so at least this helps to keep my mind off of things.  I also keep my records on the iPad to show the doctors because I have so many records (it is like carrying a heavy textbook), so it is much easier to pull them up on the iPad if anything is needed.  So, as you can see it is really unfortunately that I lost it.  I just wish there was a way that I could afford another one but priories are priorities and since they aren’t so ‘cheap’ the money has to go towards my treatment and traveling to California, which is more important. 

 We didn’t realize that the iPad was missing until it was too late.  I heard something drop when we were on the plane, but I checked under the seat and didn’t see anything.  I thought maybe it wasn’t me and it was in fact someone else that dropped something because I couldn’t find anything.  Even when we landed and we were coming off the plane, I looked briefly on the seat and on the floor where we were sitting (my dad did also) and we didn’t find anything.  The iPad must have fallen either between the wall and seat and since it was a black case it blended in with the darkness and floor, or someone picked it up when it fell earlier because I know I did check on the floor pretty thoroughly when I heard something fall earlier and couldn’t find anything.  Anyway, when we were outside the airport waiting for the shuttle, my dad realized that the iPad was missing.  Of course it was too late to do anything because we couldn’t go back to the airplane.  Even if we could, time had already passed and I am sure that the plane already took off again for its next destination.

 As a result, I did the next best thing.  I called the airline and baggage claim to ask if anyone handed an iPad Mini into the Lost and Found and to also make them aware that I lost one just in case one was found and turned in.  However, they were not helpful at all.  All I was told was to go online and fill out a LOST AND FOUND form and if it were found, I would be contacted via email.  So, that is what I did.  I keep checking my email, but I am doubtful that it will show up.  I mean who would hand something like that in?  My dad said, “If one of the flight attendants found it, I might have a chance, but if another passenger found it… I am out of luck.”  My dad also said, “Since the plane is going on to Las Vegas, one person is going to say ‘my luck is already beginning!’”  I am hoping it shows up, but I am not counting my chickens before they hatch.

 However, once we got to the hotel, it felt great to be back.  One thing I love about coming to San Francisco is the hotel because the staff is so friendly.  We always stay at this hotel and therefore, everyone knows us.  Everyone is so nice and they all come over and talk to us, shake our hands/give us hugs, etc. They really make us feel ‘welcome’ and comfortable.  In fact, they saw how edgy my dad was when we arrived from all that traveling and they told us to go sit down and they asked if me if my dad or I wanted anything on the ‘house.’  Of course my dad doesn’t technically ‘drink’ and since I can’t drink because of all my medicines… they just gave me a diet coke and they gave my dad a coffee.  They are truly wonderful here.  They really go way beyond the call of duty for us!!  They make us feel like “family!”

 Besides losing the iPad, disaster continued even the next day.  In order to get to the hospital, of course dad and I had to rent a car.  Dad and I are NEVER late for our appointments.  In fact, we have a reputation of being punctual.  If we are ever late for an appointment, it really meant something BAD has happened and it is time to “worry!”  Doctors and other people even know that.  They have even said that to us that “we are the only people who are ALWAYS on time.  If we aren’t there, it is something to worry about.”  However, when we went to get the car to rent out, it was nothing but problems, which made us late to the doctors. You can’t really even afford to be late to these doctors in the first place because most doctors, especially top specialists like these, refuse to see you if you are late.  After all… time is money and you need them more than they need you.  Fortunately though, they understood why we were late and saw us.  We were only 15 minutes late, but still… it was still a sufficient amount of time to be late.

 It turned out that when we got the car, my dad forgot one of the parts to the GPS up in the hotel room.  Even though the hotel was only about a block away, it still took time to drive back to the hotel and have my father go upstairs to get the piece and come back down.  However, we are kinda lucky that we had to do that because when we went back to the hotel, the “Emergency Brake” light kept coming on.  There was something wrong with the car and therefore, we couldn’t drive this car and take it for an hour’s drive to Palo Alto and Redwood City.  So of course we had to bring back the car to the rental place, get a new one, and leave again.  All this took time and therefore, we were late to get to the doctors.

 Besides this car giving us problems, when we were coming back from the doctors, the new car started giving us problems as well.  The new car that we had started to have the light for AIRBAG alert start to light up.  My dad was starting to be afraid that the airbag was going to deploy and whack me in the head and kill me.  Only our luck!

 Anyway, once we got to the doctors we thought we would be able to park very quickly because of handicap parking.  We had brought my permit from home so that we would be able to park in the special spots marked for handicap permits only.  However, once we parked and went to hang the permit, we realized we didn’t have it.  We couldn’t find it anywhere.  Great… it was another thing that was lost.  Not only that, but we couldn’t park there either and we had to spend some additional time looking for another spot.  Fortunately, we found one quickly.  Also, whereas we thought we lost the permit on the plane (along with the iPad), we found the permit back in the hotel room stuck in magazines.  Thank goodness for that.

 Well… things didn’t go too well with the doctors.  The first appointment I had was for the psych clearance.  Since they were talking about putting me under a big and heavy coma that is extremely dangerous and such, I needed to have psychiatric clearance to make sure that I am “sane” and not clinically depressed, suicidal, etc.  So… I had so much paperwork to fill out. I hate when they give you surveys and questionnaires to fill out, especially when they ask you questions about “What would you do” or “ranking your pain” and such.  I just know what I feel and can tell them exactly what is going on… but to put everything in terms of “ranking” … I kinda have a hard time doing it.  I also have a hard time sitting there for a long time filling out paperwork especially stuff like this.  I don’t have the ability to focus on stuff like this because it is so tedious and they ask the same thing a million times… just in 100 different ways. You know?

 So I didn’t finish the paperwork and fortunately, they are allowing me to finish it at home and send it back to them.  It has to be in by Friday though because there is going to be a BIG team meeting on me and they need everything.  But at least I wasn’t stuck there filling everything out there right now.

 Anyway… the Psych meeting went ok.  I guess I passed the psych meeting/evaluation because when I met with the pain team/ketamine team…. they were willing to do the ketamine coma.  However, they explained to us how dangerous that this coma is.  It is the most dangerous thing that I have ever had.  They even want to do it longer than 2 weeks, but my dad unfortunately can’t stay longer and we don’t even have the funds for it.  The doctor explained that I can very well die during this coma because of how high and intensive the ketamine is and what is happening.  However, since I couldn’t stay longer than 2 weeks… they were first unwilling to do anything.  They said that I would need more than 2 weeks… but like always…  funds wouldn’t permit.

 But, all that changed when I then had a meeting with the HEAD doctor. The head doctor didn’t like what was going on with me at all.  My BMI is like 11.7, which is basically lethal.  I desperately need something to be done and done quickly.  The best thing for me would to have the transplant, but it is so very dangerous and the insurance is giving us a lot of problems.  However, my body isn’t even in the BEST shape to tolerate ANY type of surgery whatsoever, let alone a MAJOR surgery like this transplant, which I would receive a whole new GI system (stomach, small and large intestine, pancreas, and liver).  I would clearly most likely die.  Therefore, they wanna make me as strong as possible too because even in the best scenarios, there have been complications.  Not one transplant has been done without a complication. 

 In fact, when I spoke to the doctor a couple of days ago and we were discussing the transplant, the doctor told me that they really needed to BUY me time because they wanted to make me stronger for the transplant because they were afraid I wasn’t going to make it.  When I spoke to him a couple of days ago, the doctor told me that they lost 2 out of the last 3 transplants.  However, when we met with him today, he told us that they lost all 3 of the last transplants.  I was like “I thought you said you only lost 2 out of the 3?”  He then said, “We only lost the last one the other day.”  He even said that the one that recently died was doing ‘well’ and yet… ‘You never know.’  He also told us and explained to us yet again and reinforced it to us yet again how dangerous and risky and such this transplant is.  I think by now I have it permanently ingrained in my brain how dangerous it is because he is constantly telling it to us.  I don’t think he would even let us forget how hard and dangerous it is for a second.  He did tell us though that they are learning with every transplant since it is so rare and still fairly ‘new!”  He said that a big mistake with the three transplants that they lost was that there was no liver transplanted.  He said that that the liver definitely needs to be transplanted in order to be successful.  So… when the time comes… I will definitely be having my liver transplanted as well, but of course we definitely need to build me up and make me stronger because these people were far better and stronger than I was and they couldn’t even survive it.  Yet, we are between a rock and a hard plate because without… I don’t have much time left either.  You know?

 So… now its time for the next plan of action… which is to buy time and to save my life in the meantime, while I get stronger for transplant… which I will need in the very near future if I am going to be able to live.  So, we decided on coming back in March for a HUGE ketamine coma and being tubed.  It is going to be a HUGE procedure, but we have no other choice.  We need to do something to try to save my life.

 The doctors are planning on putting me in a HUGE ketamine coma and putting tubes all in me.  They will run the tubes way into my small intestine and bypass my stomach and such.  They will try to bypass most of the small intestine as well and go down low enough into the intestine to possibly get to a place that is not as “dead” or paralyzed as the rest.  We don’t know if there is such a place down below (so very low) but it is worth a shot.  We also don’t know if my body will accept the tubes or even the food that is put into the tubes because of my illnesses.  But one thing at a time.  The first thing is to get the tubes in me.  So I have to undergo an operation for that.

 I am very nervous about undergoing the operation for the tubes because the last time I had something similar done like that, I didn’t hold up very well.  It really ended up exasperating my neurological illness and ended up not being able to walk and wasn’t even able to stand up.  I really freaked out the last time when I had surgery because I was never able not to stand up.  I have had my share of complications before, but not to be able to even stand up, it really scared me.  I thought for sure that I was “done with!”

 But, thankfully I made a ‘comeback’ and was able to stand and walk again with my crutches.  Thanks to the wonders of ketamine, the doctors put me into a ketamine coma and the ketamine (my magic drug) gave me back the ability to stand and be able to walk again even though it was only with my crutches.  At least I was able “function” like I was pre-surgery.  In addition, my heart also gave me problems, as it even stopped.  I had to have the paddles brought in and my heart rate kept dropping so low like 30 and below that they wanted me to sleep with the paddles.  It wasn’t easy on me whatsoever.  I am not in the best shape, so it is really going to be a dangerous and stressful time.

 But it really gave me the scare of my life.  I am really afraid that the same thing is going to happen now with the surgery again because of what happened the last time.

 After the surgery and the tubes are in and such, hopefully my body won’t reject the tubes and feedings because I will be on an intensive ketamine coma.  But… with my illness, all bets are off. If I do tolerate it, then will never eat again.  The doctors are going to put a permanent tube in me on my side and I will forever not administer food into my mouth.  I don’t know if that is a good thing or bad thing at this point.

 I would love not to have to eat in a way because I am unable to swallow currently.  I am getting really sick nowadays from eating and I honestly can’t take it anymore.  It is getting harder and harder to swallow as time is progressing and I can barely swallow anything, if at all.  Even my tricks that I have developed to swallow food and medicine aren’t working anymore, as I have used soda in the past to take medicine and eat because the carbonation had helped get things down.  Now it doesn’t even help.  I am so limited to what I can eat, as anything with carbs doesn’t really go down.  All I basically live on is a little bit of ice cream, nuts (only certain ones), and egg whites.  It really isn’t much.  Even the ice-pops that are medicated are getting impossible to take.  Who would think out of everything that ‘ice-pops’ would be so impossible to take, right?  But at least I am eating. I really don’t ever want to give up that pleasure because this illness stole so much from me already.  I would hate for it to steal that from me as well because eating gives you so much… you know?

 I would hate never to eat again.  I don’t honestly want to even think about it.  Even though I would not really ‘suffer’ as much because I wouldn’t have to ‘swallow’ and it bypasses my stomach, it really is asking a big price to pay for that.  First of all, I would always be hungry.  You just don’t feel full because you have food in your body.  Because the food will never enter my stomach, I will never feel full.  Then because I won’t physically be putting food into my mouth, my brain won’t register it either… so I would be really hungry too.  My stomach will probably constantly be growling from food even though I would be getting nourishment through the tubes.  It would be really unpleasant.  So I don’t know if it would be worth it.

 Besides those feelings, eating really does do a lot for you.  Eating is like a social activity that is something I really don’t want to give up because it is kinda one of the last things that I have still.  Who would want to go to restaurant with me and just have me ‘watch’ them eat?  They probably would feel extremely uncomfortable with this.  I know if it was on the other foot and I was with someone just ‘watching’ me eat… I would feel funny and uncomfortable even though I knew that they chose to come and it wasn’t anything that really could change or be done about it.  Going back to me though… I also know that I would be uncomfortable being around food and going out with people and watching them eat because I would probably be hungry just watching them eat.  I mean… just the smell of food would probably make me even more hungrier than ever.  The doctors have said that there are ways to go around it like putting mint under your nose so you don’t smell it, but this is definitely not a life to live.

So honestly… I don’t know what I would want.  Do I pray for this to be successful and it works so that it buys me time because it would entail never eating again?  Or do I pray that it doesn’t because at least I still get to eat?  But if my body does reject the tubes and feedings, the doctors do have to put another plan into action and another plan fast because I am really deteriorating and time is of the essence.  They really need to buy time.  So they will do another procedure on me right away… another procedure that I am not too keen on!!

 If the body can’t accept the tubes, they will have to find another way to buy time and strengthen me.  Therefore, they are going to have to probably go back to giving me TPN (total parental nutrition).  Even though I have failed it in the past, they are going to try it yet again.  They will open up a central line in me and give it through there.  In order to receive TPN, a central line must be inserted. Typically, the first line is called a PICC line and is inserted into a vein in the arm. PICC lines are different from peripheral lines in that they are longer and the tip ends up in a large vain close to the heart. They are longer lasting than a regular IV line. However, I have failed them in the past.  They have also flared up my illnesses such as my autonomic dysfunction and neurological disease immensely and had to be removed.  Therefore, they will probably use a port in my chest because it is better.  However, this is NOT recommended long-term or on an outpatient basis due to an increased risk of infection, which I definitely can’t afford because it can easily kill me.

 I have had so many problems with the TPN in the past.  It really stirred up my illnesses in the past and needed to be removed. I can feel anything and everything.  Even when doctors put IVs in me, they literally have to wait til I am ‘knocked out’ before they can start the fluid because I can feel the slightest amount of fluid.  Anything that stirs up my autonomic dysfunction and neurological disease is not good.  Not only does it cause me extreme pain (which I am already suffering in agony 24/7), but also it really stirs up the autonomic dysfunction so badly that it makes it really difficult to breathe and such.  I honestly don’t know why I am doing this, but I guess it is because I have no other choice.

 The doctor did say he would try to work something out to try to make TPN more comfortable if we had to go that route.  He is thinking that possibly I would have a lidocaine drip along with the TPN if I had to have it.  This way I would be kinda numb and in less pain.  However, we don’t know if it will work or anything.  One thing at a time.  I guess we won’t know anything until we do it… but first thing is first.

 The first thing is to have the surgery to put the lines in and for the coma.  The doctors are also going to be having a team meeting in the next week or so to further discuss if there is any other better treatment that can be done for my pain.  I am really nervous because as of today, the doctors said that I am really in ‘bad’ shape and how I exhausted everything.  They said that I am really in bad shape and really out of options, especially when there is no cure for my neurological disease, which is the most painful thing out there.  My neurological disease is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.  The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating.  I suffer all the time and the pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!” If they are asking as a friend and you don’t want to scare them away you simply say, “It is the most pain I have ever experienced, it hurts constantly.”

 Most people don’t realize how bad it is… not even my dad because I don’t want them to know how bad it is.  I try to protect my dad and not show him how bad I am really suffering because I love him so very much and I don’t want him to know how really bad I am suffering.  I also don’t show the general public how bad this disease really is because I lost a great many friends because of the disease and they don’t want to lose more.  So I usually try to dress as good as I can and say “I am fine. It is nothing I can’t handle.”  Once in a great while I may let them know how truly horrible it is, after all, they see it in my eyes. But most of the time I try and shield them from the depth it. Yet, it is getting harder and harder to hide my pain because I can’t control it anymore.

 Obviously to make me stronger… they desperately need me to gain some weight because I am so low.  I mean… I am basically walking on death row because my BMI is so very low.  They are so very scared I am going to die any minute because I am only weighing in the 60s and getting closer to the 50s all the time.  It is really freaky to know that I am like 30 years old and weigh so little.  Yet, they told me that to gain weight too, I am really going to have a BIG fight ahead of me.  They said that it is so very dangerous to do that as well.  Who would think, right?  They said that because I am so very low, they have to be extremely careful not to “feed” me too fast and make me gain too quickly because it can easily kill me.  They said that they only want me to gain like 5-10 lbs. the first year.  I was like “Are you kidding me?  That is like nothing!”  But I guess with working with conditions like I have… ones that are so hypersensitive… you have to take every precaution and you can’t go fast at all! After all… the slightest wrong move can easily set us back BIG time or even kill me.

 But like I said, the next move is to have all this done.  Since that is all that is left, we don’t really have much left to do here as of now.  All that is left is to prepare for this BIG coma and surgery, which is extremely tedious and going to need a lot of prep.  Even though I need this as soon as possible, it of course cannot be done overnight for multiple reasons.  First of all, it has to be authorized by the insurance because even though the insurance will not be covering it totally, they will hopefully be giving me something towards it.  Second of all, we need to regroup on funds.  Even though the insurance is hopefully giving us something towards it, it is definitely not going to be nearly enough for what we need.  I know you can’t really put a price on your life or health, but we really can’t afford this on our own… especially now and right away.  We will have to still pay towards the hospital and procedures (even when the insurance pays).  These costs are going to be astronomical because they are clearly going to add up.  For example, even if the insurance pays for things, I still have copayments to pay that clearly add up.  Just going to the hospital is going to cost me $200 per day for being just in the hospital and that is without any procedure or test).  I also have to factor in the traveling expenses, hotel arrangements, procedures & tests (will have copayments for that too), etc.  So… obviously it can’t be done overnight.  Third, the doctors and nurses have to clear their schedules.  I have to have a special bed in the ICU because I need constant monitoring due to the types of drugs I will be on.  People think that you can be hospitalized and have surgery overnight.  But, everything takes time because they are booked and everything.  You know?

 So… instead of waiting around here til it is all done, I am going to go home.  It is going to take some time to schedule everything and it is really costly to stay here. Therefore, I will just return in March. I have til then to find the funds.  I really hope that between now and then I will find a way of raising some funds because I don’t know how we are going to afford it.  After all, like I said before… this is going to be costly because I have to worry about the hospital cost, traveling expenses, hotel, even rental car, etc.  The rental car alone is like close to $100 a day too. 

 So hopefully between now and then I will be able to raise some more funds.  I desperately need them. If you can think of anyway to raise anything, please let me know.  In the meantime, please say a prayer that I make it because I am so very sick and deteriorating by the day.  The doctors are hoping that I make it til March, but they don’t know. I know what some people are thinking… “If it is such an emergency and you are so bad, why aren’t the doctors doing something sooner?”  The truth is though… things can only go so fast.  Rome wasn’t built in a day and I am not the only sick person in the world. There are other people needing things as well.  So… I just have to be patient and hope that everything will work out in the end.

 I am also coming home today because I also want to be home for my birthday.  I want to be able to celebrate my birthday with my entire family and not just my dad.  Don’t get me wrong, I love my dad… but since the doctors are telling me that this is my very last birthday unless a miracle happens, I really want to celebrate my birthday with my entire family (including my mom). 

 Speaking of my birthday… I am kinda upset with my birthday.  I really wish that I could do something SPECIAL to make it a great day and a unique day.  I really wish I could make it a day that is DIFFERENT day than any other day and a day that will be memorable.  I have no way of celebrating it.  I am not going to be doing anything or getting anything that will make it different from any other day.  It will be just like any other day… a day filled with nothing and a day filled with suffering and being in pain 24/7.  Don’t get me wrong, I don’t expect my parents to get me anything because definitely can’t afford it.  They already told me that.  I don’t blame them either for it because they definitely do enough.  It isn’t that I need gifts or anything because gifts are only materialistic items. What bothers me though is that I can’t do anything to CELEBRATE my special day and make it SPECIAL.  I can’t go out and do anything because of my illness.  I can’t go out and do anything fun such as go to the movies, I can’t even go out for dinner or have a special dinner at home because I can’t eat, and I can’t even have birthday cake.  I think that hurts the worse because something so simple as having birthday cake isn’t possible.  What is a birthday without having birthday cake?  I told my parents not to waste their money on cake because I can’t have it.  I told them just to get me a donut since it is $.70 and put a candle in it.  It will be much cheaper and at least I will have my candle to make my wish, even though I know it probably won’t come true because it hasn’t come true for so many years already!!

 I can’t believe I am going to be 31 years old and I really have accomplished nothing.  I went from being top of my class in high school to having everything going for me to really just ‘existing’ in the world.  I had so much to contribute to the world too.  I was a competitive figure skater, straight “A” student, top violinist, etc. I was really going to make a difference.  I was going to go to a top college, going to become a doctor, going to help people, going to live on my own, going to get married, going to have a family, etc. But now all those dreams and that life is all gone.  I basically just ‘exist!’ I basically do nothing and have nothing to contribute.  Even though I would love to have that life back and still be able to do all that stuff like become a doctor and such… in reality… I know that is not going to happen.  I even wonder if getting married is in the cards because you really learn who your true friends and family are when you are sick.  I just wonder at times if I am going to live to see another day. 

 I never thought my life was going to be like this.  It just proves that no one should take his or her life for granted and when you have your health, you have everything!!I would do anything to have my old life back.  It is so unfair that I was ‘robbed’ of everything.  This disease really took everything that I had.  Everything that people take for granted was stripped from me… including walking, eating, and even being touched at times.  But I am like the ENERGIZER  BUNNY.  I KEEP GOING AND GOING AND GOING!!

 Well… I guess I should be going.  It is going to be a very long day.  I am not feeling well either. I have a huge stomachache and I am only wondering what is going to happen after this plane ride.  Traveling takes so much out of me and when I came home from Indiana 2 weeks ago, I got so violently ill that I couldn’t even walk.  I was so weak and was getting spasms all throughout my body.  It takes so much out of my to travel.  That is why my parents hate it when we have to fly, but what choice do we have?  We had to fly to California because it is the best place for me and it is on the other coast.  If only it was closer!

ImageI also have been busy writing each of my parents their own book.  I want them to know how much I love and appreciate them.  Each one is going to be published and binded and be like in a real “book” form.  It is going to show how much I love them and why I “love” them so much.  

Well… talk to you again when I am back in New York.  Again… thanks again for your support encouragement.  Probably talk to you when I am another year older.  Again, if you have any ideas to raise money, please let me know.  If you can also please spread the word of my website and bring awareness to my illness and website, I would really appreciate it because I would love to be able to see my next birthday and that will definitely not happen unless a miracle takes place or I receive treatment, which we can’t afford on the funds that we currently have.  If nothing else, please say a prayer for me… at least that is free and yet it’s powerful and hopeful!





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February 1, 2013


Just wanted to update you on all that is happening because I am hopefully again on my way out of here and onto California in 2 days.  Yup… leaving again!  Dad and I are jet setting!!  I really hate going because I know the traveling will be really tough on me.  I still haven’t recuperated from the last trip to Indiana.  But my life is like a soap opera… never a dull moment. 

I have really been deteriorating and getting worse and worse.  The pain has been so intense lately that I can’t do anything but scream and cry all throughout the day.  I am in pain from head to toe… from the very tips of my fingertips to the very tips of my toes.  I am in pain from the very top surface of my skin down to the inner core of all my bones in my body.  The pain is so excruciating and intense.  I don’t even know how to describe it anymore.  The pain is horrific. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me.  The “best” I can hope for is a dull ache that can last during periods of an attack of extreme suffering. 

I have also lately been suffering from involuntarily jerks.  You know when you have a dream and you feel like you are falling and you jerk because of that sensation of falling? Well… I keep doing that as I suffer in agony. I am getting worse and worse and nothing that I do helps the situation.  There is no medication out there at alleviates the pain. I am maxing out on all the meds that I have, and it isn’t like I am only on one medication.  I take so many meds that it could probably kill a horse if they took it.  I take methadone, morphine, dilaudid, nucynta, etc.  The doctors have even raised my meds and even put me on an additional meds including lidocaine patches and Opana (like oxycodone), but that isn’t even hoping.  The most I can hope for is that the meds just knock me out.  At least when I am out, I am not suffering as much… but that rarely happens!

The pain has been so intense that all I can do is scream and cry all day and night long.  Fortunately, I have one amazing dad that always comes to my rescue.  He has been with me throughout this entire journey and I don’t know what I would do without him.  He has not really been getting any rest or sleeps lately either.  Besides working like a horse because he is trying to bring in whatever money he can, especially when he knows he will be leaving to go to California, he has been spending countless nights awake with me trying to take care of me.  I am definitely not an “Easy” person to take care of.  My dad constantly says that he “wishes that he could do something to help me,” but unfortunately there is nothing that he can do.

I am in so much pain that I tell my dad to just KNOCK ME OUT!! I tell him to just take his best shot and KNOCK ME OUT.  He should think of me as a “punching bag” and just give me one good swing.  My dad said that he would “never hurt me” but I told him “not to worry.”  I told him that to think of me as a punching bag because punching bags always bounce back.  Therefore, even if he takes a good whack at me, I will always come back!!  So he shouldn’t be afraid of hurting me because nothing keeps a punching bag down forever.

I have been deteriorating so much that I can’t even stand anymore.  Even getting up and down off the couch is getting to be impossible.  My dad literally has to carry me around places because I am too weak and in too much pain to walk by myself.  Usually in the past I stay home alone for a while since my parents do work.  It is only for a couple of hours, and I can usually fend for myself for a limited amount of time.  However, with everything progressing and me getting so much worse, I haven’t really been able to be left alone.  My dad has been by my side all the time because I can’t do anything.  Plus, with the jerking around that is happening, my parents don’t like to leave me alone.

In addition, my body is just shutting down.  My organs have just had enough.  I also have extreme pressure being exerted on my organs and causing a lot of problems and shutting them down because of the gastroparesis.  I am getting so weak and staying alive is getting to be such a chore.  It really is starting to be impossible to even make it through the day or even night with all that is happening to me.  That is yet another reason why my parents have not left my side.  In case something should happen, at least they are close.

There have been so many close calls that we would have to go to HOPKINS.  I really belong in a hospital.  I have to admit that I am too sick to really remain at home.  Not only am I suffering in pain, but my body is also shutting down.  I can’t even take my medications anymore because I am having such a hard time swallowing.  Even with the carbonation that I discovered helped to a point to get down my meds, it will not allow anything to go down anymore.  Even the limited foods that I was eating before because they were the only things I could swallow even though I vomited them back up and they didn’t pass through my GI system and weren’t absorbed are not even going down anymore.  Before I could only tolerate foods that were NOT carbs.  I was living basically on egg whites and ice-cream (to a point), but now that is starting to be impossible to take in.  To think… I used to love ice-cream too.  There wasn’t a day that could go by that I could bypass having it.  My dad and I would have to have our ice-cream every night for dessert together.  It was something we looked forward to.  However, now my dad has his ice-cream alone as I watch.  One day hopefully that will change. 

I have also medicated ice pops to eat.  Who would think that out of all things that I wouldn’t be able to tolerate these ice pops?  I guess you know things are definitely bad when you can’t tolerate eating the pops.  It is important too that I get these pops in because they have the meds for my heart.  I can’t really take my pills and such, so at least some of the meds are in the pops and gets immediately absorbed through my mouth.  My heart is definitely doing horrible and I can’t afford for it to worsen anymore.  My bloods already show that my heart can easily go into cardiac arrest and an arrhythmia.   If they dropped any more… I don’t even want to imagine or say what can happen. 

I have also been aspirating like crazy.  This is definitely not a good thing because it is giving me additional problems with breathing.  Plus, the aspirations can develop into pneumonia.  With the FLU and other illness going around, even getting a simple cold can severely hurt me because a simple cold is like getting the flu to me.  Everything is magnified.  However, with the aspirations, it can also make me more susceptible to getting sick and if I do get sick… it can make it a lot worse.  After all, I already don’t have an immune system… so all bets are off as to what can happen. 

The bleeding internally and mucous coming out of me is also worsening.  Unfortunately, we don’t know where that is coming from because even though the doctors have tried to find out, they are unable to because the one procedure that is needed to actually determine where it is from, they can’t do.  They have narrowed it down to my intestines, but in order to further determine where the bleeding and mucous is occurring, I would need a colonoscopy. Yet, with my paralyzed GI tract, they can’t prep me for it.  No matter what type of prep they have used, it won’t “clear” me out.  They have even tried putting a nasogastric tube in me and pouring laxatives in me so I won’t have to swallow it and the tube would pass the laxatives right into my small intestines.  However, we only got in less than a ¼ of a liter and the tube backed up since my GI tract is basically dead.  They had to end up pulling the tube out and that was that. 

I am so very thirsty and nothing quenches my thirst.  However, I can’t drink because the more I drink, the more I suffer.  I can’t sweat either because of my autonomic dysfunction and therefore, I am even driver than ever.  I have been trying to put lotion on my hands so that I can have some type of moisture in me, but it really isn’t working.

I have been getting the worst stomach pains in the world.  They are so debilitating that all I can do is lay on the couch all curled up.  My stomach feels like there are thumbtacks in it and that it is inelastic.  It doesn’t feel like it can expand at all.  Therefore, the more I drink, the worse it feels.  So I am between a rock and a hard plate.

To make matters worse, I have lost weight and my BMI has dropped.  I don’t know if it is TRUE weight or if it is that I am just so dehydrated because I am bleeding and having so much mucous coming out of me, but losing ANY weight whatsoever is definitely not a good thing, especially when I don’t have weight to lose.  It is really scaring me because I am getting closer and closer to the 50s.  Who would think someone that is 30 years old would weigh that little?  I didn’t even think it was possible.  My BMI is also dropping and when we checked it, it was only 11.7 roughly.  It really freaks me out and the doctors are freaking out because basically I am on “death row.”  If I was a male, I would certainly be dead by now because males cannot live whatsoever below a BMI less than 13.  Females can live a little bit lower til 12, but even so… mine is lower than that.  I really am in borrowed time!!

So with everything that is happening and how weak I am feeling overall, my dad has been wanting to take me to HOPKINS.  I really need to be in a hospital, but unfortunately with my disease it is easier said than done because I can’t just go to ANY hospital.  I am so complex and complicated that I need top specialists because not a lot of doctors have even seen what I have.  When I go to the hospital, I am like on “show” because so many doctors, nurses, residents, etc. come in to see because I am one case they will never see again.  I suffer from illnesses that are rarely seen and symptoms that I have are unbelievable.  I change colors like a chameleon and have other symptoms that the doctors themselves don’t even know why they are occurring.  There are plenty of times the doctors are literally running out of my room and around the hospital with their feet not even touching the ground because they are scared.  My dad always says to them “Do we look nervous.”  But they say and admit that they “never saw this before.”  I am one case that they never forget when they see and I am one doctor’s worse nightmare.

Not only am I difficult case to treat, but I am a difficult case to handle as well in terms of nurses too.  I need TOP CARE and even though most hospitals give adequate care, I need hospitals that have more of a 1 to 1 nurse ratio because I need around the clock care and constant meds and such.  Therefore, the only hospital that can possibly help me in all realms besides California is HOPKINS.  I really should be going to Stanford in California, but of course that is a distance away.  My doctors always told me that in an emergency to go to HOPKINS because that is the best hospital that is closest to me.  Their mentors have gone there to work as well, so they feel comfortable sending me there. In addition, they have a heliport there, so I can get there in an emergency.

So there have been plenty of days and nights that we have debated leaving for HOPKINS because things have gotten so bad.  However, we also know that if we went there, it would cost more money… money that we don’t have.  I know there is no price for my health, but I don’t want my parents to suffer anymore than they already do.  Plus, we need all the money we have for other things like my treatment and for California (not that we even have enough for that).  It is a shame that my health and treatment depends so much on money and when it comes down to it… it will be the factor that really kills me in the end because I can’t receive the necessary care that I need because I don’t have the ability to AFFORD it.  That is why I am so desperate for support and donations. 

My family has been paying for my illness for so long that it was only a matter of time til the ‘well’ ran dry.  This illness is so costly, as there is so much money being spent on surgeries, treatments, hospitals, doctors, medications, copayments, etc.  Just in copayments alone, we spend like $25,000 and that is with the insurance paying.  I still have all the medications and doctors that aren’t covered by insurance.  I also have the cost of traveling expenses too since I can’t really get the necessary care that I need in New York.  It is a shame that I can’t have a procedure done or go to a hospital because we can’t afford it.  People say that I should just go to the hospital and have them “bill me.” Yeah that might work, but we are already in so much debt that we are never going to get out!!  I don’t want my family to lose everything that they have because they have already given up so much for me.  They have given up their lives basically for me.  Not only have I been suffering throughout this illness, but they have too!!  It is at the point that we don’t even have money anymore to pay for the mortgage or to put food on the table.  It is getting impossible to pay for anything.  So… if there is any way to receive support or donations, I would appreciate it. 

Not only have we not gone to HOPKINS because of the money factor though, we were hoping to hold out because we are supposed to be leaving for California on Sunday and if I went to HOPKINS, I wouldn’t be able to go to California.  When push comes to shove, the best place for me is California, so we are hoping that I will just make it until then.

I guess you have heard enough about the “suffering,” I guess I will tell you about the upcoming plans.  Well… as I have said… dad and I are jet setting to Cali on Sunday.  I am actually kinda excited because it is going to be Superbowl Sunday and the San Francisco 49ers are in the Superbowl.  What better place to be at then in San Francisco since it is their home team?  Even though the game isn’t being played in their city, I am sure that it is going to be really “chaotic” with parties and everything.  I don’t know how dad and I are going to eat that day because we usually eat in the bar area and they are usually big on sports as it is.  With it being the Superbowl and having the 49ers as the team in it, I am sure it is really going to be bouncing and packed.  I told dad that we can “skip” having dinner, but dad said “NO WAY… not in your condition.  If it was just me… then I would say OK, but definitely not you!  You can’t afford to lose an ounce!”  I am not a football fan and I honestly don’t know what is going on, but at least I will have my dad to explain the game to me. Every time we watch football (Which is basically only once a year and on Superbowl Sunday), my dad has to explain the game to me because I totally don’t remember from the year before what is going on. 

I am headed to California only for a brief period this time to take care of the loose ends and make sure everything is taken care of for the next trip.  At least I will be home by Thursday because my birthday is then.  The best gift I can ever receive this year is a miracle that I am all better. But since I know that is most likely not possible, I am at least hoping that I receive some support and donations from people so that I can receive the necessary treatment to try to keep me alive. I am suffering from a rare neurological disease/autonomic dysfunction and severe Acute Intestinal Pseudo Obstruction, which are life-threatening and have robbed me of everything people take for granted (walking, eating, having a career/going to school, sleeping with blankets, being touched because it is too painful, etc.). It has been a long and difficult battle, and I need very expensive treatment including surgeries, medication, ketamine comas, even a transplant (small and large intestine, stomach, liver, pancreas), which we can no longer afford.

Like I said though, we are headed to California because we have to meet with my “team!”  It is a shame that they aren’t closer because it takes a HUGE toll on me with all the traveling.  Anyway, I am meeting with my head GI doc and with the ketamine team.  I am also probably meeting with the transplant team as well.  California is the only place that is able to do the transplant and willing to do the transplant, but their hands are tied because the insurance refuses to pay for it there.  Instead, the insurance will only pay for it in Indiana UNLESS I am denied.  However, Indiana is really messing around with me and even though they literally denied me and told me to “go home to die,” they won’t put that on paper because they don’t want another hospital doing the operation and getting credit for it.  Lets face it… whoever does the operation and cures me… they will become famous!  They don’t want to be the ones that lose out. 

Indiana had me go all the way there for them to deny me.  They didn’t even touch me, but they said that I am so complicated and the worst case they have ever seen.  They literally freaked out when they saw me.  They didn’t do absolutely anything.  They didn’t even weigh me or take my blood pressure.  All they did do was sit around a table and say to me that I was “too sick” and I should “go home to die.” 

However, I needed a letter stating that they denied me so that the California could do the surgery instead.  However, when I asked Indiana for the letter, they gave me a letter stating that I was not a candidate for transplant at this time and if I “resolved” the issue, they would operate.  Therefore, they didn’t officially DENY me according to this letter.  However, the issue that they want me to ‘resolve’ is an impossible issue and an issue that if I could resolve, I wouldn’t need the transplant.  They want me to gain up to 95 lbs. before I have the surgery.  My team of doctors literally think that is hysterical because if I could gain weight and if I could weigh 95 lbs., I wouldn’t’ need the transplant in the first place.  So what Indiana is asking for is basically an impossible task because it definitely won’t happen without a transplant.  However, because they won’t officially DENY me, I can’t receive the transplant somewhere else.  My doctors in California are LIVID!!

Anyway… I am going to California and we are going to discuss our options.  I definitely need to be put into an intensive ketamine coma to try to buy time.  They are going to put tubes in me during this time because they are going to try to ‘feed me’ and strengthen me. Hopefully since I will be in a ‘coma’ and my body will be kinda ‘dead’ in a way… my body won’t be able to reject anything. It is extremely risky and it will take at least about 2 weeks to undergo.  If nothing else, I will get some rest. 

During this high intensive ketamine coma that they will put me under to try to buy time, they are going to try to give me enough ketamine to try to reverse some of the neurological disease and autonomic dysfunction.  Ideally, I need to go out of the country because the amount of ketamine that I need is way too much than is FDA approved.  However, it is very costly and it is extremely dangerous too.  It is another procedure that will cost me $100,000 and will not be covered by the insurance.  I can’t even afford the transplant; there is no way I can afford this.  So, they are hoping that the more intensive ketamine coma will help at the very least because ketamine is an NMDA receptor and in a high enough dose it can literally “cure” me of the autonomic dysfunction and neurological disease.  Like I said though, that won’t happen in California, but hopefully it will stop or slow the disease progression and possibly even reverse it a bit.  If nothing else, at least I will get 2 weeks at least of rest and not feeling pain.  I would do anything for that.

Finally, I am meeting with the transplant team.  Like I said before though, they want to do the transplant… they just have their hands tied.  They know how desperately I need it, but what can they do.  They are hoping to figure something out so I can get the transplant.

They also want to get me as strong as possible because this operation for transplant is the most dangerous transplant you can have.  It runs the most rejection rate out of all the transplants there are.  Even in the best of cases, the outcome isn’t so good.  The 5 year survival rate is only like 40% or so, but I say at least that is 5 years that I might have. Yet, even in people better than me, they have had plenty of complications.  Not one has been done without a complication and they all have been in better shape than me.  Out of the last 3 transplants, they lost the last 2.  So, they really want to see if they can make me in the BEST shape possible because it is going to be a real battle and struggle through the transplant.

The trip shouldn’t be too long and hopefully I will be home for my birthday.  Even though they want to do the ketamine coma and tubes and I need the transplant, everything takes time.  They have to work on getting the clearance and organizing everything.  So… instead of me staying there and wasting money… they are going to have me go home and bring me back 2 weeks later at the end of February.  The doctors also are not on the inpatient unit at this time and when I go in… I need them to have their plate empty so that they can basically handle just me since I take up so much of their time. So, that takes some time to organize and such.  So, we are looking at everything taking place at the end of February. The doctors just hope I can make it that long even though they know that I am desperately running out of time.  Yet, they know that Rome wasn’t built in a day and everything takes time.  So we have no other choice but to wait and get everything done like it is supposed to even though it does take time.  Hopefully I will make it.

Well… I am going to get going.  Not feeling well at all and I can’t stand to write anymore.  I will write again when I know more, which will probably be from Cali.  I can’t wait to get there because at least the weather will be nicer.  I can’t stand the cold weather and I heard the weather is like in the high 60s there. 

I am trying to get things organized for California because I know it is going to be a big trip.  My parents are still blaming Indiana for me worsening so much because traveling takes so much out of me.  I really hope I will be ok when I go to Cali because I always worsen because of traveling. 

I have been looking for some good movies to put on my iPad so that dad and I can watch some stuff on the plane, but I can’t find anything out that is good.  I have also been looking for some good books.

I also have been trying to apply for a SERVICE DOG.  I really think that would help me in multiple ways.  It would help me because I am physically disabled… so it would help me get things and open doors and such, as well as it would alert my parents and help me in case of an emergency.  Finally, it would also be a companion as well because I don’t really have a lot of friends around.  You really learn who your true friends and family are when you have an illness.  However, there are such long waits for a Service Dog.  That is one wish that I really do have… it is to get a service dog.  But I doubt that will ever happen because the lists are so very long.  I do think that it would solve a lot of problems though because not only will it be a dear friend, but it would help me since I can’t really move around and get things.  It could help me with my balance since I can’t really stand very well and on crutches, it can turn on and off the light switch since I can’t get up and down easily, it can get me items that I need or drop, it can open doors instead of people not helping me with them and I am locked out or even getting slammed by them, etc.  It would definitely give me a piece of mind and a sense of easiness because I am always worried about something happening and not getting HELP in enough time.  At least with the dog, he would be able to get help to me or bring me the phone or something.  If you know a way of getting a service dog, please let me know.  I am extremely desperate for one and would really love one.  That is one wish that I would love to have granted and it would be an awesome birthday gift too.  It would be soooo helpful… physically, psychologically and emotionally. 

Like I said, my birthday is Thursday, so I have that to look forward to.  It will be a special birthday because it probably will be my last birthday we celebrate unless there is a turnaround.  The doctors already said, “Unless there is a cure or a turnaround, I don’t have long to go.”  I just want to be out of my suffering.  I am not looking for any gift or anything (I already know I am not getting anything because we can’t afford anything), but I am just looking for getting better and seeing my next birthday. I just wish there was a way I could celebrate my birthday because my birthday will come and go just like every other day.  I will spend the day at home… being in excruciating pain…crying and screaming.  There will be nothing done to even make it a SPECIAL day or anything because anything that can possibly make it a HAPPY or ‘out of the ordinary’ day can’t be done because of this illness.  Between not having money and not being able to eat and go out… it is just going to an average day.  I can’t even have birthday cake, but I am still wanting a cake so I can make a wish and blow out the candles.  So I will just watch my family enjoy a birthday cake for my birthday that I can’t eat.  Maybe one day I will be able to, but in the meantime… I guess I will just have to watch from the sidelines. 

Well… take care and I will write soon!




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