Please help SAVE MY LIFE!

March 30, 2013


I know that I just recently wrote the other day, but I just wanted to write a brief update because I got news that I want to share. 

I went to a new doctor today and although the doctor is unsure if he can help me or not, he did give me some pertinent information that was worthwhile.  Before I tell you about the worthwhile info, please let me tell you that I really liked this doctor.  He was a very good doctor even though he doesn’t know if he can really ‘help’ me any more than any other doctor in this area.  When he saw all my records though and especially my x-rays, he literally freaked out.  He couldn’t believe all that was happening to me and he couldn’t believe that I was so filled up with ‘air.’ 

The doctor was astonished that my abdomen could be so filled up with air and there is no wonder according to him why my organs are shutting down.  The pressure being exerting by the air is tremendous, especially since I am so small.  He was shocked that not only was my ‘stomach’ filled with air, but the air also continued to blow up my colon and throughout the remaining parts of my body.  It was a major problem… a problem he would never expect was possible.  He said I needed help desperately and quick.  He also said I needed to see the top doctors in the field. 

Well, guess what?  I am going to a new hospital in the meantime.  It appears I will be heading to the MAYO CLINIC in Rochester, Minnesota.  For all that are unfamiliar with the MAYO CLINIC, this hospital is one of the best in the country and this hospital only accepts patients who are suffering from the rarest diseases and patients who cannot receive treatment at other places.  If they feel that a patient can be helped in another location, they will not see you.  So, in essence, they only accept the ‘sickest of the sick.’  The waiting list o get into this hospital is also really long.  However, I was able to get an appointment for May and for that to happen, things really have to be really bad.

Like I said, I have an appointment in May.  Although I was supposed to be going to California at that time to have the surgery and tubes placed in me, I am going to have to postpone that trip so that I can go to the MAYO CLINIC instead.  I am going to have to postpone the California trip to the end of June (we will be leaving June 30th), but hopefully we won’t even need to go because hopefully I will get the answers and help that I need at the MAYO CLINIC when I go there in May.  We are scheduled to be going on May 27th.

I am really excited to be going to the MAYO CLINIC because I am really hopeful that they might have something that can help me. They treat the most difficult cases in the world and people all over the world come to them when they can’t get anywhere at other places.  In addition, even though I have failed all other treatments, I found out that they are doing a study at the clinic that perhaps can benefit me.  The study deals with Clinical trial to test efficacy of IV hemin for gastroparesis.

I am really hoping that the doctors in the MAYO CLINIC will be able to help me because I am basically really deteriorating fast and I am really running out of time quickly.  I don’t really have a lot of options to get me well besides the very highly dangerous and radical multiorgan visceral transplant, which the doctors are very hesitant to do and which hasn’t really proven to be successful in the long run.  It is really risky in fact, as it runs the highest risk of death and rejection of all transplants… especially in the state that I am (how I am so weak, I probably would never survive the transplant).  Yet, I really don’t have any other options.

Yet, doctors at the MAYO CLINIC have started this clinical trial that I am really hoping can benefit me. It is the only place that is actually working on something that can ‘help’ save my life.  But gastroenterologist Gianrico Farrugia, M.D., stresses that in the last few years, scientists at Mayo Clinic and elsewhere have made marked progress in understanding the pathological mechanisms underlying the disorder. He acknowledges that the treatments that there are for the disorder are not ‘ideal’ and therefore, he has started this trial as a way of finding a way to overcome this disease.  Much of the current research focuses on the interstitial cells of Cajal (ICC), which are needed for normal stomach emptying.  According to him, “The ICC acts as intestinal pacemakers for smooth muscle function.  They also amplify neuronal signals, act as mechanosensors and set the smooth muscle membrane potential gradient. Both human and animal models demonstrate loss of these cells gastroparesis.” 

In order for the gastrointestinal system to function correctly, there must be a balance between processes that injure ICC and processes that generate and maintain them.  Yet, in people like me, there is atrophy in the smooth muscle.  Dr. Farrugia says a critical factor is oxidative stress resulting from low levels of heme oxygenase-1 (HO-1), an important protector against oxidative injury.  “When the mechanisms that normally counteract oxidative stress are impaired, especially upregulation of heme oxygenase-1, ICC are lost and gastric emptying is delayed. In mouse models, restoring HO-1 prevents and even reverses these cellular changes and restores normal gastric function.”

In addition, the HO-1 expression that occurs in a particular subset of macrophages — CD206-positive M2 macrophages — whose cytoprotective effect on ICC appears related to the production of small amounts of carbon monoxide occurs in the stomach wall. Dr. Farrugia says, “When the upregulation of HO-1 is lost, M2 macrophages are replaced by proinflammatory M1 macrophages. These cells, which do not produce carbon monoxide, are associated with ICC damage and the development of delayed stomach emptying. Thus, the upregulation of HO-1 in M2 macrophages seems critical to the prevention of gastroparesis.”

As a result, Dr. Farrugia is doing a study to determine whether intravenous hemin therapy is equally beneficial for people with gastroparesis.  In mouse studies, hemin, a biological product of red blood cells, has been shown to boost the production of HO-1, thereby reducing oxidative stress, allowing repair of the ICC network and normalizing gastric function.  If this should work, there can be an effective medication discovered that doesn’t just manage symptoms as prokinetics do, but that actually targets the cause of the disease.”

So I am really hoping that something GOOD will come out of all this. I am really glad that I am going to this hospital because the doctors are supposed to be like doctors not found elsewhere.  First, they take a take a “team” approach.  Second,  I am really hoping that they will be able to help me because Mayo Clinic doctors cover virtually every specialty and subspecialty. Third, Mayo Clinic doctors take the time to listen and thoroughly understand your health issues and concerns and provide you with an unhurried consultation. Appointment times at Mayo Clinic are generally longer than industry standards in order to promote good consultations.  With my illness, I need a long appointment because I am so very complicated that it is hard to fit everything into those short appointments that you are normally given.  Usually I am always being rushed out the door that I end up forgetting things to tell the doctor.  Hopefully this will allow me to get everything out and this way the doctors will be able to help me better.  

One of the best things I love about going to this hospital is that you just don’t work with “one” doctor.  Instead, you work with an entire department and then that department works with every other department in the hospital.  In this way you aren’t just one person left alone in a whole big hospital, and you are in a whole web of a great support team that can help you. Mayo Clinic doctors ask one another for advice. They collaborate as team members. At Mayo Clinic, you don’t get just one opinion, but you get multiple opinions — from doctors in multiple specialties if necessary. This results in better care and better answers for you. As the Mayo Clinic doctors are engaged in research, it is very likely that someone on my team will be involved in research related to my condition.

So… dad and I are headed to the Midwest to Minnesota to check this hospital out.  Two things possibly can stop us from going to Minnesota though: money and the fact that they want me to stop all narcotics that I am on.

The doctors want me to stop all my narcotics that I am on for 2 weeks prior.  I can understand the reason for them wanting this because it plays a role on the GI system and they want to see as accurate a picture of my GI system as possible without any medications that ‘slow’ the GI system even more, but it is literally impossible to stop my medications for even a day.  I have been on my medications for such a long amount of time (like 10 years) and the amount of meds that I am on are very high.  If I stop them abruptly, not only would I be in tremendous pain and definitely not be able to function, but I probably would die.  I would die because the pain would be so very intense.  I am barely surviving with the pain now and I am on the pain meds now. I am in pain 24/7 and need very high and radical pain relief methods to help me out as much as possible.  I am on so many medications such as Morphine, Methadone, Nucynta ER, etc. that it will literally be impossible to come off of everything and be able to live with the pain that I have since I can barely live with it nowadays.  I even now have to undergo ketamine comas to help deal with the pain.

In addition, I cannot come off the medications because since I have been on such a high amount for so long, I probably will go into seizures or even have death because my body has been so used these meds for so long.  I cannot just stop these meds abruptly, especially when my body is so hypersensitive and ‘messed up’ the way it is.  I would need to be tapered off so carefully that it would take over a year to do… time that I don’t have.  We will be talking to doctors to see what can be done to overcome this situation behind the MAYO has a strict policy of being on NO narcotics, but I really don’t know what is going to happen in order to achieve this.

Secondly, of course we will also need funds.  Nothing comes free in the world, so I am hoping that I will be able to receive some more donations from people so that I will be able to go to Minnesota.  I am rapidly deteriorating and this can be one of my last hopes.  I am hoping that people will understand and donate anything that they can because even a simple dollar ($1) makes a difference because it does add up.  If it is left up to just my family, I fear that I won’t be able to receive this treatment because we cannot afford it anymore.  The bills from this disease have amounted too much from being sick and it just has taken its toll on my family too much.  It is beyond the point that we can do anything anymore as much as we would like to.  So, as I said, if you can do anything to help me… whether it is to spread the word, think of a way to fundraise, or even say a prayer… it would be much appreciated. Any way you can help would be great and much appreciative.

So that is next on the list.  I have been showing my dad the hospital on the website and this hospital is really state-of-the-art.  The hospital is simply amazing.  I am really fascinated that the whole town is basically built around the hospital.  Since it is really cold in Minnesota, there are tunnels that connect the hospital to everything including the hotels, malls, etc.  It really is awesome.

In addition, there is even a concierge service.  I never went to a hospital that as one of those.  But this isn’t just ANY hospital.  This hospital is for the ‘sickest’ and therefore, when you go there, people really need to feel like home and they are there for a VERY LONG TIME.  The MAYO CLINIC “Concierge” services can assist you with questions related to lodging, transportation, local businesses and attractions.  They like to do EVERYTHING for you so that you don’t have to worry about anything.  They also understand that you don’t want to be in a hospital setting all the time and therefore, they will bring you to whatever you want to do whether it is to go shopping or anything else.  They know you want to do things in your ‘free’ time so they try to make you ‘happy’ by bringing you to things that will suit your interests whether it is recreation, tours, restaurants, casinos, shopping, etc.  They even get you hotel arrangements too so you don’t have to do your own research or even can change your itinerary plans like for flight info if there needs to be.  This way you don’t have to be burdened with all the little unnecessary things and you can just focus on the ‘important’ things.  Whatever the need is, they are willing to do anything for you.  They are simply amazing.  It is something that I would never expect… especially something at the hospital. 

So… this is the next adventure.  I really hope that it all works out and I get to go because I need help quickly.  I have been in worse pain than ever lately.  My toes and feet have been killing me as it feels like constant nonstop hammering are being done to them.  You know when you are hammering nails and you accidently miss and end up hitting you finger instead?  You know how you get that shrill pain right through your finger and it goes right through your entire body?  Well… that is what is happening to me.  Even though I don’t have a hammer actually hitting me, it feels like I have one each and every one of my toes on both feet and it is sending the most wretched pain throughout my entire body besides the other pains that I am feeling.  It is the most horrendous pain you can imagine.  In fact, it is literally sending me through the wall that I am basically begging my dad to “please do something.” 

I am in so much pain lately that I am willing to go to the hospital if they would only do something to help alleviate it.  However, I don’t even know if it would even do anything, especially since this most horrendous pain is in my toes and sending it through my entire body.  For me to actually be contemplating going to the hospital, it has to be bad.  In fact, the pain is so horrendous that I even told my dad that I wish I could amputate my toes because I can’t take that hammering feeling and that shrill that is starting there and going throughout my body.  It is killing me.  I don’t know if that is playing a role, but I have been weaker than usual.  My dad has to literally carry me throughout the house because I have been so incredibly weak.

Hopefully the ketamine coma will make a difference.  However, the next one that I have is not until this coming Friday, April 5th.  It seems so far away, I just hope I can last that long. 

ImageIn the meantime, I have been helping my dad to hopefully bring in more customers to his business.  After all, more customers not only mean more business for him, but it also means more money to help pay the bills.  It also makes me feel productive.  Therefore, I have 

made him up new business cards and magnets to give out to customers, as well as I customized folders for him to handout to new and potential clients filled with literature of all the different pest problems that we take care of.  I am trying to get as much business and customers as possible and therefore, I have been telling everyone about my dad’s company and giving everyone magnets and folders so that they will always know where to come when they have a pest, rodent, or termite problem. 
ImageAfter all, out of sight… out of mind and with this magnet and business card, they will always have my dad at hand to remind them of his company so that they can call him.  I have been so into it that not only have I created all this stuff (magnets, business cards, literature, website, etc.), but I even handed it out to everyone including doctors.  Hey… every person is a potential client because pests don’t discriminate.  Many people think that pests, rodents, and termites are only attracted to lower class, unsanitary or messy homes. However, this is simply not the case. In fact, they do not discriminate and will infest any home from the most expensive mansion to a run down shack.  Anyone can get bugs, rodents, and termites.  They do not care what race you are, your age, or your economic status.  So they need a top pest control company with great reputation like my dad’s company (Inter County Pest Control, Inc.) to treat the problem. 

Well… I guess I will be going.  I just wanted to let you know the updated news.  Please keep your fingers crossed that I will make it, help will be in the near future, and I will receive the necessary funds that are needed to receive the lifesaving treatment that I require as well as for the trip to Minnesota.  Like I said before, if you can please spread the word that I need support and funds, I would really appreciate it because like I said, my treatment and trip to MAYO are dependent on it. People can donate at www.FallonMirsky.wordpress.com.





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March 29, 2013


 Happy Passover and Happy Easter for those celebrating either holiday.  I know I haven’t written in awhile, but it just has been because I have been so very ill and things are getting really bad. It is getting harder and harder to write due to how much I am deteriorating and that is why the updates are getting less and less.  I really want to keep you as updated as possible, but it just is so very hard with everything that I am feeling.  That is also why even though I am updating you with this blog, I really don’t know how much or how long it is going to end up being because of how horrible I am feeling.  Like I said before, I am feeling really badly, but I wanted to really tell you what has been doing.  So I figured that even if this blog is ‘brief’ or not complete, at least you will know ‘something’ and know at least that I continue to EXIST!  At least I am continue to hang in there despite all the horrible things that are happening.

 As you might be aware, I should have been in California this week. However, due to unfortunate circumstances because we didn’t have enough money, we weren’t able to go.  It was really important for me to go too because I have gotten so much worse and have developed so many new symptoms that needed the doctors to look at.  I am rapidly deteriorating and if I thought I was ‘bad’ before, it was nothing compared to how I am now. 

 Lately I have been doing so horrible.  I have developed so many new symptoms that really need my specialists to see.  First of all, the discoloration in my body has worsen so much.  I always had discoloration throughout my body, but nothing compared to what is going on. It has never been so dark and especially in my left leg and foot, it basically has gone from being purple and blue to being black.  It almost looks like my leg is necrotic and ready to fall off.  Before the discoloration used to go back to a somewhat normal coloration when raised, it remains totally discolored even when raised.  I’ve also developed discoloration in parts of my body that has never discolored before.  I now even have my face turning weird colors among all the other parts that have turned in the past.  It is really freaky.  I am like a ‘chameleon’ because I can change colors in a second.

 Another way I have worsened is that the pain and sensitivity has gotten so much worse as well.  Not only has it worsened and gotten worse throughout my body, it has also spread to the few remaining parts that were not affected before like parts of my face and scalp.  I can barely touch my face and scalp without feeling intense pain.

 I have also developed severe pancreatitis and my pancreas has failed in addition to all my other organs that are failing.  My amylase is extremely high and I have also developed lesions in my mouth and throat.  The doctors believe that it is attributed to my poor immune system because my immune system is literally failing as well.  I am just a complete mess.

 I am also producing so much mucous.  Even though I have been producing mucous and blood for a while, it is nothing compared to what has been happening.  I am producing mucous and water from my toosh all the time and not to sound disgusting, but it is like I am urinating out of my toosh all the time.  I am so entirely thirsty, but we think it is the result of all this mucous ad water coming out of me and me dehydrating. 

I am also losing so much weight… weight that I can’t afford to lose.  I am already weighing in the 60s and there really isn’t much weight to lose.  Any pound I lose is extremely dangerous and in the past few days I already lost about 3-4 pounds, which is extremely a lot considering how little I already weigh.  But we think it is all ‘water’ weight and not true weight but even so… it is still extremely dangerous.  It is something that definitely needs urgent help because a person can’t live at the weight that I am at currently…  there is no way that I can lose more weight. 

 So like I said before, I had appointments with my top specialists in California this past week and should have been in California as we speak.  But, I now had to reschedule due to the lack of funds. I am hoping to be able to go back to California the end of May, but we honestly don’t know if I am going to make it that long… especially with all the weight that I am losing so fast.  However, that is the soonest that we will be able to get to California.  We are hoping though to be able to go to California the end of April instead, but of course this all depends on the amount of funds we have and the doctors schedules (the longer we wait, the less chance we have of coming in at that time because they are booking up).  Therefore, we are listed in coming to California in May because it will give us more time to raise money because it would be a shame to make arrangements to only have to cancel them and postpone them again.  It not only really messes up our schedule, but it really causes problems with the doctors and hospital in California because they are expecting us and make arrangements In their schedules for us too, whereas they could have other patients instead.  After all… they too need money and if I am not coming to California, they need other patients to make up the money that they are not making on me.  You know?

 During this time in California, I will be going for surgery to be getting tubes and a ketamine coma… in addition to finding out more what is going on with me.  It is to buy time until something comes along, as well as to try to strengthen me as well because I am deteriorating.  I need the coma because they are hoping that it will help me ‘accept’ the tubes.  However, we have a major problem because since we canceled this previous trip to California, we won’t be able to see my neurologist, which we really need to see because even though there are many neurologists throughout the USA, he is the only doc that understands my disease and is knowledgeable in it to a point.  However, because he is such a good neurologist, he has no appointments available until September.  He was already making special arrangements to see me this past week, but he is unable to do so in May.  As a result, I will only be able to see his Nurse Practitioner.  Even though she is smart, it is not the same as seeing him because they don’t see everyday cases of me.  I am very complicated and complex and even he has a difficult time with me.  It really was important for me to see him, but now I have no other choice but to see the nurse practitioner.  In addition, I need to go for the surgery and have the tubes for at least 2 full weeks starting on that Monday.  Yet, the Nurse Practitioner can only see me on that Tuesday, which means that the soonest I would be able to come into the hospital for the surgery would be the Wednesday (day after), which would only give the doctor 1 ½ weeks with the tubes.  The doctors are very top specialists and have set schedules where they are only in the hospital 2 weeks on and 2 weeks off so it is important to start the inpatient surgery at the very start of their service so we can have the full 2 weeks.  I have asked if the neurologist can see me as an ‘inpatient’ but they said that cannot happen since his office is at a different location.  Never a dull moment and I am always hitting obstacles.  If only this past trip had worked out.

 So, since I haven’t gone to California, I just have to hang in there longer, which I am trying.  But honestly… I don’t know how long it can happen.  I am rapidly deteriorating and my heart and body has been feeling extremely weak lately.  I am in so much pain and agony and I am also so very weak.  The amount of ‘good’ times that I have been having are getting to be so very few and it has gotten to the point that my dad has to literally carry me places because of how ‘weak’ I am. 

 In the meantime, I have been trying to see if any doctor around here can help me because help is of the essence. Yet, even seeing doctors around here are very limited due to lack of funds.  I can’t even go for blood tests because I don’t have the funds.  We have never had so many ‘money’ problems before and it honestly scares me.  That is why I am really so desperate for others to help me.  In order to see doctors and receive the lifesaving treatment I need, I desperately need the help of others.  If anyone can please help me or have any ideas how to raise funds, I would really appreciate it.

 I have managed to see a few doctors.  One of the doctors that I have seen was for my leg because it is severely discolored.  It really looks like it might be amputated.  So I went to the doctor to see what he had to say.  It turns out that a pulse can’t be felt in the foot.  However, in order to confirm that there is really a serious problem and no blood flow to the area, they would have to do a test on my leg that involves putting cuffs on it and inflating them.  I would never be able to tolerate it, so it is kind of out of the question.  It really doesn’t matter anyway because even if the test did in fact confirm that there was no blood flow whatsoever, they couldn’t do surgery to open up the blood flow such as bypass or anything. There is a point in the leg that that can’t do surgery and bypass below a certain spot because the veins and arteries are just too small and therefore all that they would be able to do would be able to ‘amputate’, which they don’t want to do.  They don’t want to amputate because even if they do, it wouldn’t probably do anything but make things worse.  It would probably spread my disease and I would probably get my neurological disease especially bad in the stump, as well have phantom limb pain on top of everything else.  It would be one disaster on top of another. Never a dull moment.  You know?

 Of course though they would have no choice but to amputate if it goes gangrene.  The doctor said I need to be especially careful because I have to ‘baby’ the leg. I have to take extremely SPECIAL care of it because I can’t afford to have any bacteria get in it or have any cuts happen to whatsoever.  Even a simple ingrown toenail or bumping my toe or having a toenail cut my other toe can be a huge problem because I cannot heal.  I can easily get an infection in my leg and that would easily cause gangrene and if that would happen… they would have no choice but to then amputate.  I also have to be extremely careful because I can get frostbitten very easily in that leg too because it is so cold and such.  I don’t have the normal sensations in that leg and therefore I need to take extra precautions to make sure my skin doesn’t crack or get cuts or get bruised or get cold or anything else that would cause an infection or gangrene.

 But I have discovered something lately.  Even though you cannot touch me because of my extreme hypersensitivity, there is a spot on my leg that actually if you grab and squeeze ends up releasing the spasms and contractions in my entire leg.  It is the weirdest thing.  However, of course when you release the spot the leg spasms more and contracts more, but it is amazing that when you squeeze that one spot that the leg actually relaxes and the spasms and contracts relax as well.  It actually kinda makes the leg feel better to a point.  But no one can explain why.  The doctor thought it could possibly be similar to when you cut the circulation off in a limb and it feels ‘good’ right before it goes numb with pins and needles.  But he honestly can’t really explain it though.

 I also asked the doctor about the sympathectomy.  I had a sympathectomy years ago to try to save my leg from my illness.  However, the doctor ended up saying that to do this now for my illness, it is really unheard of.  Even when I had it done back then, it was really rare.  But at least I had it done because if I didn’t… I would have lost my leg way back when. 

 I also asked the doctor about hyperbaric oxygen because I am so desperate for anything and that is one thing I haven’t tried.  Yet, it is expensive and I was wondering if he thought it was worth it because as you already know… I don’t have money to waste.  He told me straightforward that he didn’t think that it would work and that I have to be careful of people selling me stuff because I have such a complicated disease and they know how DESPERATE I am to get well.  He told me how people take advantage of people like me and will try to sell me anything like the Brooklyn Bridge because they know that people in my state will do whatever just to get better.  He is definitely right that I would do whatever just to get better, but I really need to be careful because I don’t have money to waste.  He said he looked at the literature and in reality there isn’t any literature to back up that the hyperbaric would help in my condition.

 However, I have recently seen another doctor and even though this other doctor said the hyperbaric oxygen would not work, this doctor is trying to get the insurance company to approve paying for the hyperbaric oxygen chamber.  Everyone thinks it is never going to happen, but the doctor said that they can either pay for this oxygen chamber and see if it works or they can pay for me to have a whole big operation to have my leg amputated.  I guess if this other doc gets the insurance company to cover the hyperbaric, I will try it because I definitely don’t have anything to lose as long as I don’t have to pay for it.  I just don’t have money to waste.  I am desperate for anything… I just have to be careful where I put my money.

 I also have developed lesions in my mouth as I have told you in the previous blogs.  They are getting so much worse and I cannot wait to see the surgeon/pathologist at the hospital because they are worsening and getting so painful.  Not only are they just in my mouth (where they started), but they are now also going down my throat and as a result, it makes it so very difficult to swallow.  On top of all my other swallowing problems because of the autonomic dysfunction, I now can’t swallow because of the lesions.  I have an appointment on April 11th, but it just feels so far away.  I was hoping that they would be able to get me in sooner, but apparently they aren’t able to.  I just hope that after I wait all this time that they will be able to help me.

 ImageI have been having so much trouble swallowing.  As a result, the amount of things I am able to eat and drink is extremely dwindling.  I have discovered thanks to my best friend a new food called PUFFS.  It is a baby food, but it seems to be one of the ‘better’ things to have.  It is so weird that I am back to eating baby food.  But it is good because this food dissolves in your mouth so there really isn’t much to ‘swallow.’  In addition, it sits better in my stomach better than most things because of how light it is and how much it ‘dissolves’ in my mouth.  Even though I vomit up everything including this, it does sit better in my stomach better than other things. Too bad though that these puffs really aren’t fattening or have calories.  They are kinda of ‘empty’ things to have, but at least they are something and at least they have nutrients.  I am really shocked though that I am eating baby food because never would I think that I would be eating that again.  At least it tastes good though.

 Talking about having something to eat, I can’t really eat anything because I end up vomiting everything up.  However, I did have something a few days ago that actually made getting ‘sick’ kinda worth it.  Whenever I eat, I am always like “why did I end up eating” because I have to vomit afterwards and I absolutely HATE doing that.  I was never a person to vomit… even when I was a kid.  I would get so very nervous when I was little and I would always have to have someone with me when I threw up because of how nervous and scared I would get from it.  Anyway, I haven’t had a calzone in the longest time.  Even though I only ate about ¼ of the calzone and ended up throwing it up, it was absolutely delicious.  I never had something so good.  Like I said before, it kinda made eating and vomiting worth it.

 ImageI am really getting worse.  I think my cat knows it too.  It is so weird because whenever I am feeling worse than usual, my cat never leaves me.  My parents call her my ‘babysitter’ because they can always tell when I am doing ‘worse’ because Missy won’t leave my side.  Well, lately she has been staying by my side more than ever.  In fact, she is so clingy that she probably can tell how bad things have gotten.  All throughout the day she wants me to constantly hold her, as she follows me around.  Then throughout the night she stays in my bed with me meowing and wanting me to kiss and pet her.  Perhaps her meowing is her way of making she I am awake and to make sure that I am still breathing and alive.  Even when I am on the computer, she constantly goes and stands on it so that I can’t type and so that I am with her only.  But all and all, I wouldn’t trade Missy in for the world.  Even though she has been getting really annoying lately, she is definitely worth the trouble.  She is definitely like my best friend and if I didn’t have her, I don’t know what I would do.  I love her so very much and she has been there for me from day one. 

 The amount of good days that I am having are becoming less and less.  However, I have had a best friend that has been determined to make me have as good as a time as I could have.  She is always willing to do whatever she can in order to make sure I have FUN and such.  She is also willing to go beyond the call of friendship and take me to doctors and research further into my medical illness.  She is always looking into new ways that could possibly help me.  Even when she found a doctor, she was willing to come all the way to pick me up to take me to that doctor, which was not around the corner.  She definitely it one great friend.  I wouldn’t know what I would do without her.  She certainly makes a huge difference in my life because she is always there for me… there to help me, there to advise me, there to have a shoulder to lean on, there to talk to, there to have fun with, etc. 

 She is certainly the best.  She does so much for me that I only wish I could repay her in some way.  One of the best features of her is that she treats me more than just a DISEASE!!  She not only helps me with my disease, but she looks at me beyond just being a disease and treats me like a NORMAL person.  When I am with her, I actually feel NORMAL because we talk about normal things like books, movies, etc. and we do normal things… like she comes over and takes me out… things that I haven’t done in the longest time.  Whereas my world without her was consumed as being a ‘disease,’ she really has opened up my world for the better.  If it wasn’t for her, I definitely wouldn’t be smiling as much as I am now.  Even though she has her own life (as she works, has her own family, etc.), she is always willing to take care of me and be there for me.  She is like a best friend and second mother all put into one.  She only wants the best for me.  In fact, even on the few occasions that I do fall asleep in her car, she will literally drive around until I wake up because she doesn’t want to wake me up.  She goes far beyond the call of duty as a friend and for that… I will be forever grateful.  Even though I know she has her own life and I know she is extremely busy… I look forward to seeing her.  I feel just like Cinderella with her because when I am with her, I feel like I am like Cinderella when everything is transformed and when she goes to the ball.  Yet, like Cinderella… all things have to end at a certain time and just like when the clock strikes 12 for Cinderella everything goes back to her old world, the same goes for me when the time of 2 o’clock rolls around because I have to take meds and eat and such.  Once that time comes, it is back to having my life revolve around my disease because not only do I worsen and deteriorate as the day goes on, but starting at 2 o’clock, I have to eat, take meds, take injections, vomit, etc.  When one ends… the next starts and when everything is done, the cycle starts again.  I can never wait until 9 at night because then I only take my night meds and I am done for the night. 

I also love being with her son.  Her son is the absolute cutest.  He is such a happy kid and you can’t be miserable or show that you are in pain or sick when you are around him.  Therefore, her son also ‘helps’ me in more ways than you can imagine.  Not only does he put a great big smile on my face because I love to play with him and such, but he helps me smile and not show all that I am going through because I don’t want to scare or be a ‘downer’ for him.  After all, when it comes to kids… you always have to put them first… especially when they are as young as her son.  They are so helpless and they depend on you. They are so innocent as well and they don’t need me to scare them with me being a grouch or being or showing how much I am really am sick.  I also have to thank him for introducing the puffs to me because if it wasn’t for him, I would never have tried them. 

Image Well… I guess I should be going.  I really can’t really write anymore.  I am in too much pain and I need to rest.  Like I said, I just wanted to write an update really quickly because I haven’t written in awhile and wanted to let you know what has been going on.  I am counting down the days until my favorite author if all times releases her book.  Sophie Kinsella releases THE WEDDING this month and even though she releases only like one book a year… it is worth the read.  She is simply amazing. I also have been playing around with my iPhone and photos and experimenting. 

–       Fallon

 P.S. Things are getting so bad that we are even thinking about going down to Florida to see the doctor for my neurological/ autonomic dysfunction disease doctor.  We are seriously contemplating going out of the country for the huge ketamine coma because it has the potential of reversing the neurological and autonomic dysfunction, but it is extremely risky and expensive.  I really need a ketamine coma in a high enough dose, but unfortunately it isn’t FDA approved and as a result, I will have to travel abroad to get it.  The cost is really expensive and of course it won’t be possible without the help of others because it will cost $100,000.  But, this can be the only answer to my problems because no matter what, I need help with the neurological/autonomic dysfunction because that is what is in CONTROL!! I am also hoping that perhaps if it reverses the neurological disease and autonomic dysfunction, perhaps it will reverse and help my GI issues and the rest of my body issues as well.  After all, they said that Ketamine is extremely powerful because it is a NMDA receptor and has the potential of reversing everything because it reboots my system like a computer would reboot itself.  But first thing first is to get the funds because without that… it definitely won’t be possible.  To think… it would definitely take away the pain and suffering that I deal with on a everyday basis 24/7.  What a relief that would be!

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March 21, 2013


 What is going on?  Just wanted to write a really quick update and let you know what has been happening.  Things aren’t going too weall and before it snowballs out of control with pages and pages of so much that you get so bored and don’t want to read everything, I figured that I would write what I know as of now.  This way it would not only be easier to write because I don’t have the patience to write long updates anymore, but I am sure you don’t have the patience to sit there and read long updates either.  Plus… with all that has been happening lately… who knows what is going to happen.  So since all bets are off as to what can and will happen, I want to let you know the latest just in case.

I am not doing well at all.  It seems even though I have been sick for a while, I am like on a BIG downfall lately.  Usually I bounce back and I feel better after I have a ‘down’ period, but lately all I keep doing is ‘falling.’  I keep deteriorating and it is getting faster and faster.  I keep looking for a bounce back, but it just doesn’t seem to be in the cards.  Things just keep getting worse and worse. 

 Even though I have been suffering for many years, at least I was kind of used to that suffering.  I was used to all the symptoms that I was having and even though I was worried about all that I was exhibiting and such, at least I knew what it was like, what to expect, and kind of what was happening and what it was due to.  However, nowadays I am having all these new symptoms that I have never had before and it is really making me scared…. More fearful than anything. Even the symptoms that I always typically had are so much worse.  I really have no idea what is going on with my body, but I do know one thing.  I know that I am rapidly deteriorating and unless something is done quick, something bad is really going to happen.  I really need help more than ever now and if I don’t get it, I really fear for the worst because I know something terrible is happening and it continues to get worse and worse. I really don’t know how much more I can take. 

 Want to hear something though?  You would think that I would be able to get the care that I need in New York because it is such a huge and bustling state.  It has all the top hospitals in the state such as New York Presbyterian, Mount Sinai, New York Medical Center etc.  However, I have come to the conclusion that if I am going to get better, I really need to get out of New York.  There really is nothing left in this state that can help me.  I have been to every hospital and I have seen so many doctors that I am basically ‘out of docs.’  You know things are bad when you go to a top hospital like New York Presbyterian Hospital and the doctor even gives you back your money after he sees you because he is unable to help you.  I mean… who would have thought that would ever happen especially in a top hospital like that. 

 But the thing is that in order to get out of New York and get the help that I need, I really need the finances to back me up, which is something I really am lacking.  I am desperately needing help from others in receiving treatment because we can no longer afford the lifesaving treatment that I need in order to LIVE.  I really hope that something would come about like the media picking up my story or something, but it just isn’t happening.  I know… it isn’t what you know, it is who you know… but I really am running out of options and without treatment, I am only getting worse, severely deteriorating, and I am going to die and die soon.  Things are getting so bad that I can’t even afford to get a simple blood test.  I have tried so many ways to raise money, but they just have been unsuccessful.  If anything, they work in the beginning, but they quickly stop working and the amount of support I need is a lot because the treatment I require is extremely costly.  I need a very intensive ketamine coma to help treat the neurological disease/autonomic disease that will cost me over $100,000.  This coma is given out of the country and as a result, it will not be covered under insurance whatsoever.  In the meantime though, I still need to go for other coma treatments that need to be covered.  They are not nearly as expensive and not nearly as intensive, but I still need help in receiving that treatment.  I also need help in achieving the necessary surgeries I require, medication, etc.  I also need to get to see my specialists in California and Florida, as there is no one here in New York to see that can help me. 

 It is amazing how quickly things add up.  Even the medications that I take are impossible for us to afford.  Although the insurance does pay for some, I take over 50 pills daily and not all medication is covered.  Plus even with the insurance covering whatever they do cover (appointments, medication, etc.) I still have to worry about the copayments, which also surely quickly add up.  Just in copayments alone, we spend over $30,000 per year.

Image I haven’t given up hope in receiving the help from others. Even though I have tried various techniques to raise funds so I can receive the necessary treatment that I need such as writing to the media, posting flyers, posting on Facebook, making a website, writing to famous people, etc. I am still trying other things to try to bring in additional funds.  After all, my life is on the line and hanging in the balance. I am only 31 years old and not ready to give my life up yet.  I have too much to live for and I just haven’t seen or done enough on earth before I go.  So to try to raise further funds, I have made new posters to hang up and I even made business cards to give to people so that they can always have my site and donation info on hand so that they can’t forget where to give the necessary donations.  This way they just don’t see or hear about the website and forget about it.  You know?

 ImageI am reaching out for support because I desperately need it.  Thank goodness I have a great friend who is now helping me find a way of raising funds so I am not in this ‘alone’ anymore.  After all…. You know what they say…. Power in numbers!! So I am hoping that it will certainly make a difference because the more people that support me and help, perhaps not only will I be able to get the necessary treatment that I need, but perhaps I will be able to receive attention to all that I am going through so that I can alert the world to this horrific condition.  After all, not many people know about this condition and to be honest… if I didn’t go through this illness, I would never know it existed.  To be honest… I wouldn’t even think this disease was possible if I heard about it because it is such a horrific disease that it has so many terrible things.  This disease contains so many things that it seems impossible that it all can happen to a person. 

 I really need help though because time is of the essence. As it is… I was supposed to be going to California this upcoming week to see the neurologist and gastroenterologist. I really needed to go on this trip, but due to financial reasons, I had to cancel the trip.  It was a real shame that I had to cancel it because I am suffering so much and exhibiting all these new symptoms. These doctors are the only doctors that could tell me what is going on.  I have been to many doctors and these doctors are by far the most knowledgeable.  If there is anyone who could tell me what is happening and give me an explanation or give me help… it is the doctors there.  However, due to financial reasons… I had to cancel.  I am now scheduled to got o California the end of April/beginning of May (as long as I am alive) because I need to have surgery and be ‘tubed.’ They are trying to buy time because I am not going to make it much longer without it.  They will place me into a coma and ‘tube’ me tat that time to try to ‘feed’ me and such. 

 In the meantime though, I am severely worsening.  First, I am having lesions appear in my mouth. The doctor was unsure of what they were and wants me to see a special surgeon at Long Island Jewish who is also a pathologist.  One of my specialists believes that it is because of my failed immune system.  Since my body is deteriorating and failing, my immune system is doing the same.  As a result, I am breaking out with all these lesions.  They started in my mouth and are so incredibly painful.  However, lately they have spread to go down my throat.  I can barely swallow anything, as it is extremely painful now since they are down there.  The doctor has tried to get me in sooner with the surgeon/pathologist at LIJ, but the doctor does not have the time.  We are hoping that he will fit me in on Wednesday, March 27th, but we are not counting on it.  I am not going to count on it and then be disappointed.  I have an appointment for April 11th, but I can’t wait that long.  I can’t swallow anything in the meantime because of the lesions and they are so incredibly painful.  I am on medication to try to kill the pain and steroids to try to help it, but nothing is working in the meantime.  It just continues to worsen.

 I have also been having bleeding not only from my rectum anymore.  Instead, I am now suffering from nosebleeds as well.  I never suffered from nosebleeds in my life, so for me now to have them as well, something has to be happening. 

 I am also having a extremely hard time going to the bathroom.  I cannot go, if at all.  If I do go, it is all mucous, and it also has blood in it.  I am severely bloated and it looks like I am ‘pregnant.’  I joke around saying that I am ‘full term,’ but in reality, I am extremely uncomfortable.  I really need someone to pop me or something because of how distended my stomach is.  I am not the only one who can see my stomach and abdomen really distended, as it is really apparent to everyone.  Having this bloating not only makes me uncomfortable, but it also further triggers off the autonomic dysfunction.

 I also feel like I have a blockage in my abdomen.  Perhaps that is why I am bloating as well and can’t go to the bathroom.  Whenever I go to the bathroom and ‘push,’ the force doesn’t just go downward.  Instead, whenever I push and the force goes down, it only ends up backfiring and I get air coming back up through my mouth like in the form of a belch.  I know… it doesn’t quite make sense what I am saying, but I am trying to explain it the best I can.  In short it feels like the force is backfiring and coming back up my mouth instead of flowing downward and coming out from below. 

 I have also been suffering from blackouts.  Every time I go to the bathroom, I get blackouts.  The doctors think it is my autonomic dysfunction and such causing it because of the pressure changes.  But it is really freaky.  There are even times hen I just can’t see because things go ‘black.’  Thank goodness though that it is only temporary and short-lived. 

 I also have been in a lot more pain than usual.  My toes are killing me and it feels like there are hammers hitting each of my toes.  You know when you are hammering nails and you accidentally miss and end up hitting a finger?  Well that is how I am feeling nonstop with my toes.  It is incredibly painful.

 In addition to the pain of feeling like I am getting hammered, the toes in my left foot also feel like they are going numb and someone is putting a tourniquet around them.  I never had this feeling before and it scares me.  It scares me not just because this feeling is ‘new’ but because I am discoloring so much and I am so fearful that I am going to lose a body part or something.  After all, even though my body has been discoloring for awhile because of my illness, it is worse than ever.  It has never been this dark and usually in the past when I elevated the affected limb, the discoloration kind of went back to normal.  However, now the affected limb remains horribly discolored even when it is raised.  What makes matters worse is that even though my entire body is discolored, my left leg is the worse and it really shouldn’t be because I had a sympathectomy in it.  It really makes me wonder why it is happening because I did have that surgical procedure. 

 I never know when I am going to discolor, as it can strike any minute.  It is really scary.  Not only am I discoloring in my legs and arms and my usual places, but my face is now discoloring, which is new.  At least I was able to conceal the discoloration so that no one could really see it.  People rarely noticed it because I knew how to ‘hide’ it even though occasionally people saw it because it happened in my hands and such.  However, now that it is happening in my face, I have no idea how to ‘hide’ it.  My dad is also getting very scared because we never had this before.  I mean to have your face discolor… it is quite something to worry about.  Not only is it something that I am really worried about, but I am really embarrassed about the discoloration too.  It isn’t normal to discolor and people stare.  Even when I was in the hospital and you would think that people would be more understanding there because that is where ‘sick’ people go… people were always staring.  I know people are not used to seeing someone discolor, but they really don’t have to stare.  You know?  I am like a chameleon!

 In the meantime, I have an appointment scheduled to see a vascular surgeon on Thursday.  I really hope that this surgeon will have the answers, but I am fearful he won’t be able to help me further because he doesn’t do sympathectomies and I am fearful that another sympathectomy might be needed.  After all, I had a sympathectomy the first time because if I didn’t have it, I definitely would have lost a body part.  But this doctor was the first one that could see me, so we went with him because this is urgent.  So fingers crossed that he will be able to help.

 I have been suffering from severe spasms and cramps throughout my body, especially in my legs and feet.  You know when you are in bed sleeping and you get those spasms that you can feel the muscle literally twisting and then you see like your limb or toe or finger twisting involuntarily?  Well that is what my whole body feels like.  I don’t know what is causing that but it is worse than ever.  Perhaps it is because my bloods are so bad because they are falling so much.

 Speaking of my bloods falling, not only are my heart doing so bad that I can easily go into cardiac arrest and have an arrhythmia, but I found out also that I am not able to clot lately.  My clotting factors are off.  In addition, my blood work has come back and it has shown that my pancreas is getting worse because my amylase is getting higher and higher, as well as my brain tumor is also worsening and growing.  As a result, my pituitary gland is secreting more hormones than ever because the tumor is right on the pituitary gland.  It just continues to worsen.

 I am also having trouble seeing.  My left eye is giving me so many problems seeing. Not only is it blurry, but it feels like there is extreme pressure in that eye.  I really don’t know what is up with that eye either.  I have been putting steroids in that eye, but nothing has been helping.  I wonder if it is the autonomic dysfunction worsening it because it causes my eyes to be extremely dry since I can’t produce tears.  As a result, my cornea is all scarred up and like sand paper.  I hope that I didn’t rip the cornea like I have done in the past because the doctor said that with all that I am going through and the scarring, it is very possible.  I guess I will have to wait and see and if it doesn’t clear up I will have to go back to the doctor.

 I am getting worse and worse.  I am really getting weak.  I am having the worst case of jerks ever.  You know how you have those dreams that you are falling and then you wake up because you jerk?  Well, I have those jerks every so often without the dream. The jerks are getting more frequent and they are getting so huge that I can literally fall flat on my face or if I am on the couch, I can easily fly off and land on the floor. 

 So that appears to be all that is happening with me.  To make matters worse, my mom isn’t doing too well.  The stress of what is happening with me isn’t easy on the rest of the family.  Therefore, my mom is now suffering and she really can’t afford to have this stress.  She is so worried about me and I can’t have her stressed out since she isn’t ‘well’ to begin with.  She suffers from MS (Multiple Sclerosis) and I don’t need her to get herself sick on top of all this that is happening.  She is always putting me first and making sure that I am taken care of before herself that I think it is finally taking its toll on her.  With everything that is happening now with me and such… medically and financially… she is now living on Rolaids because she is getting the worst stomach pains that she is literally doubled over.  She is also bleeding from her rectum and such.  She is going to a GI doc next week, but I really hope that nothing is seriously wrong with her. 

 Well… that appears all that is going on.  I am still trying to keep a positive attitude despite all that is happening. I have a best friend that is trying to keep me going as long as possible.  I am certainly lucky to have her.  She is not only determined to help me find someone to help me and find a way of getting the treatment that I need, but she is determined to make me enjoy whatever time I have left.  She makes me actually feel normal and not sick.

 ImageThis friend is such a lifesaver.  Not only is she trying to find all different ways to try to find help (whether it is financial or medical), but she is always there to have a shoulder to lean on.  She is one amazing person because even though she has her own life, a son and a husband, as well as a career, she always finds time for me.  She always finds time in the morning to make sure I am ok and made it through the night, as well as find time to check in on me throughout the day.  She even takes the time out of her busy day at night to talk to me and discuss whatever needs to be discussed… whether it is a shoulder to lean on or just to have a typical conversation like a ‘normal’ person would have who doesn’t have an illness.  In addition, she even has volunteered to take me places like to doctors when my dad can’t.  In fact, there have been times when she was willing to even leave work to take me to a doctor or even to the hospital because I needed to go.  Who could ask for someone better? 

 This friend really makes me feel normal!!  I really feel like CINDERELLA when I am with her because when I am with her, I am like in a dream world. My whole life transforms and I go from disease to a ‘normal’ person enjoying life with not a worry in the world.  We really have so much fun together and for the time we are together, I don’t have to worry about or think that I have an illness.  I get to finally have fun and get to be “normal.”  I get to “escape” being a disease.  However, all good things have to come to an end and therefore, I always have to be back in time for meds and injections.  Therefore, just as Cinderella transformed back to her usual life at midnight, the same goes for me at 2 o’clock because that is when I have to be back to take my meds.  But at least when I am with her, I get to forget my worries. 

ImageThis disease has robbed me of life in so many aspects and I literally became a slave to it.  I lost so many things that people take for granted such as eating, walking, having friends, going out, having fun, taking showers, going to the beach, getting married, etc.  There is so much that I want to do, but I cannot do it because of my illness.    I can’t believe all that this friend does for me.  She has taken me out and did things with me that I never imagined would ever happen.  I have been dying to go to the beach for the longest time.  I used to love the beach.  So, she made it happen. She took me to the beach and even when we couldn’t see the water because of the dunes that were set up, she did whatever it took to make sure that I got to see the water… even if it took going on her back and having her carry me.  In addition, she knew how much being a princess and getting married mattered to me.  After all, doesn’t every girl have a dream since they are little of being a bride and wearing a wedding dress and such?  So, she made it happen.  She took me to this gorgeous boutique and had me try on all these gorgeous dresses.  Even though I am not the prettiest because I am so very thin and emaciated looking, she really made me feel “gorgeous.”  She really touched me when she even gave me her engagement ring to wear prior to trying the dresses on. I couldn’t believe she did something like that.  This way it ‘completed’ the package.  I only wish I could repay her for all that I she did.

 My parents are so grateful for her as well.  My parents can only do so much and they know how much a ‘friend’ is needed.  They see how happy I am with her and how much happiness she has brought me.  My parents have said they never have seen me smile so much as when I am with her.  I smile because I don’t feel like a disease when I am with her.  We do NORMAL things and talk about NORMAL things like books, movies, etc. After all, I am more than a disease and she sees it.  She isn’t someone that just bypasses me because I am ill. 

 ImageIn fact, she has done the complete opposite.  When most people have walked out in my life, this person has walked in on my life.  She has researched my illness and continues to research it and has learned so much about it.  Even she couldn’t believe how horrible of a life I was living with this illness until she saw it firsthand and read up on it.  But to have someone in my corner and to take the time to actually learn about my illness instead of just making insinuations and such, it really means a lot.    I really appreciate all that she has done and continues to do for me, and I really hope that she knows it.   I treasure every moment that I am with her and have been capturing many of it on pictures so I can look back on it.  In terms of the wedding dresses, I made a special album for my parents and me so that we will always have a momentum of me looking like a beautiful princess bride since I probably won’t ever see that day in reality. 

Well… I guess that appears to be everything.   I guess I will be going.  I think I wrote enough.  When I find out any new info or anything, I will definitely let you know.  As of right now, I just hope that I bounce back and make a turnaround because things are just deteriorating so rapidly.  I really hope that we find a way of receiving donations and support because I desperately need treatment, which is something that we can’t afford.  I am keeping my fingers crossed!! 

Thanks again for all your help.  If you can help me out in any way… whether it is by spreading word that I need help and attention to my website, or even saying a prayer, I would really appreciate it!!!



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March 13, 2013


 No time no speak.  I know… it definitely has been awhile.  But… I couldn’t help it because things are just getting horrendous and I really haven’t been feeling well.  But, I am still plugging away and still hanging on.  Still hoping and praying that there will be some advancement and some turnaround… hoping and praying that I will make it through this horrible disease.  After all… positivity is everything.  Happiness and destiny are things we create, not positions of circumstance. 

Image Feeling good about yourself or the aim to achieve anything is positivity. You cannot progress in life if you continue to have a negative attitude.  It has taken me awhile to realize this because like a lot of people, I have not always been the most ‘positive’ person.  However, through the help of my parents and a great friend, I have learned that you cannot achieve anything when being ‘negative’ because being ‘negative’ in life gets you absolutely nowhere.  As Helen Keller once said, “Although the world is full of suffering, it is also full of the overcoming of it.” 

 I am trying so hard to overcome my illness, but it is getting so hard.  It is basically impossible, and even harder when you don’t have the friends and support of family and friends. Luckily though I have had a friend re-enter my life lately and she has been helping me deal with my illness and helping me to strive to overcome my illness.  She has been helping me so very much, as she has been trying to help me medically and mentally.  She has been helping me try to look for advancements that can possibly help, as well as look for ways of getting financial help for my treatments because it has gotten to the point that we really can’t afford anything for this costly disease. 

 I really need to find a way to raise funds because I am rapidly deteriorating faster than ever.  I can’t keep my weight on and I am losing weight at a very fast pace.  This is not good because it isn’t like I have room to lose because I already weigh in the 60s.  Knowing that I am approaching the 50s is very scary.  How long can a body last that weighs so little?

 In addition, the discoloration in my body is getting really bad.  Discoloration is normal for my neurological disease, as it is a symptom of it.  However, it is at the point that it is very dangerous and can be very life threatening because not only am I discoloring throughout my body, but my left leg is literally BLACK.  Having any part of your body being BLACK is not a good sign because it means that no oxygen is getting to that area.  In the past, even if my left leg was black, it kind of disappeared when elevated.  However, this is not the case anymore; it remains black as night and really discolored no matter what.  It really concerns me because it shouldn’t be turning black or discolored because I had a sympathectomy in that leg years ago. Sympathectomy is really a surgical treatment that damages nerves within the sympathetic central nervous system. The process is carried out to improve blood circulation and reduce long-term pain in a few diseases that create narrowed arteries. This surgical treatment cuts or damages the sympathetic ganglia that are collections of nerve cell bodies in clusters across the thoracic or lumbar spinal cord.  Sympathectomy is conducted to alleviate intermittent constricting of arteries, which would increase circulation and thus, it would prevent discoloration.

 I always knew that it could be a possibility to lose a body part because of my illness. The doctors have even stated that even if I got well, I might still lose a limb, especially my left leg, because my tissue has been deprived of oxygen for so long already and tissue has already died.  Yet, I am petrified because I don’t want to lose my limb and especially now since the discoloration is so bad and it won’t go away.

 In addition, I can’t cut my toenails because of the extreme pain.  I am always being told that I need to cut them because they are so overgrown, but any touch of the foot is really unbearable because of the excruciating pain.  Therefore, I haven’t allowed anyone to really touch my toenails, especially on the left foot in years.  The toenails are so long on the left foot that since they haven’t been cut for so long, they actually have grown skin underneath the nails.  As a result, even if I wanted to cut them now, it would be nearly impossible because I would have to actually cut the skin since the skin has grown underneath the nail that protrudes from the toe.

 I ended up cracking one of the toenails on the foot that is worse.  It is causing me more pain and we are unsure what to do because the nail is cracked in half on the actual toe and we really can’t continue to cut it because of the overgrown skin. I also have sores on that foot from the cracked toenail and I have a very difficult time healing.  Due to my poor circulation especially in my left leg, I don’t get enough blood flow as well. So between the difficulty in healing and the decrease in circulation, I am petrified I am going to get an infection or something that will lead to having to lose my leg. So, we are really confused at the current moment as to what to do.  In the meantime though, it is very painful and also adding to the discoloration.

 I have also been told lately that my pancreas has failed.  Never a dull moment, right?  However, there really isn’t much that can be done in New York and it is imperative that I get to California so that something can be done.  My organs are just shutting down. 

 When I went to my GI doctor though to talk about my pancreas, we also talked about the much-needed transplant since I am rapidly deteriorating and we don’t know how much longer I can honestly hang on.  He suggested to possibly doing just an intestinal transplant instead of a multivisceral organ transplant.  In this way, I would just get a small intestine instead of a whole new GI system (stomach, small and large intestine, pancreas, and liver).  Even though it wouldn’t be as risky and radical as the multivisceral transplant, the intestinal transplant is extremely dangerous as well.  In addition, if I got the intestinal transplant, I would still never be able to eat and therefore, I would be on ‘tubes’ the rest of my life.

 Never eating ever again and being on ‘tubes’ the rest of my life is something that I definitely don’t want to do especially if I am undergoing a very dangerous transplant like the intestinal transplant.  If I am going to go through something dangerous like that, I am going to have a payback that is worth it.  What would I be gaining by just having a transplant of my intestines and then being tubed anyway?  I still wouldn’t be able to eat and I still wouldn’t be able to be technically ‘normal,’ which is something I desperately want.  Who would want to go out with me to have me sit with them and watch them eat all the time? They would feel funny and so would I.  Plus, I would also be suffering all the time as well because I would be so hungry.  Even though I technically would be ‘full’ because I would be getting sufficient amount of nutrition through the tubes, I still would be hungry because it wouldn’t register as to being ‘full’ since I am not putting the food in my mouth and chewing and swallowing it, as well as it not going into my stomach.  Feeling ‘full’ is not just about having food into you. Your brain has to register it as well and unless you chew and swallow it, as well as it goes into your stomach, your brain is never going to feel satisfied.  As a result, my stomach would always be hungry and growling for food.  This would never be a way to live.

 The doctor wanted me to go for this because he knew how much and how fast I am deteriorating, as well as how time is not on our side.  He figured that it would also be easier to get a intestinal transplant than a multivisceral transplant because only 6 hospitals really do the multivisceral transplant and there are no hospitals in the New York area that do it.  I would really need to have it done in California, but the insurance wouldn’t cover it.  However, if I went with the route of just having the transplant of the intestines, more places do that transplant and I probably could have it done in the New York area.  However, there was one problem though.  I probably wouldn’t be able to have it done here because the hospitals that are geared for the intestinal transplant wouldn’t be able to put me into a ketamine coma for days like they would in California.  I would definitely need ketamine and therefore, that eliminates having it done here.  After all, we know my disease will act up because anything traumatic sets my disease off and makes it worsen.  Last time I had surgery to put the tubes in, I couldn’t even stand afterwards. It wasn’t until I had the ketamine that I was able to resume standing and walking with my crutches.  Ketamine is my ‘miracle’ drug and unless the hospital has it, I really can’t have anything done there because having anything done to my body aggravates my condition and I need the ketamine to ‘fix’ it. 

 However, my dad was pushing me to have the intestinal transplant because more hospitals are willing to do it.  So he figured that even though this hospital couldn’t do it because they didn’t have the ketamine, there would be another one closer than California that would be able to do it and that the insurance would cover.  However, like I said before… I don’t want to live on tubes the rest of my life and never be able to eat ever again… especially if I am going to risk my life and undergo a very dangerous transplant like that.  My dad would do anything to keep me around, and therefore, he doesn’t care what condition I am in as long as I am here.  Therefore, he even said, “It doesn’t matter if you are being fed by tubes!” In order to show him my point of view, I told him that he can’t eat anything on Sunday and I am going to cook up a storm in the house.  I told him that I am going to fill up the house with the scent of sweets, as I am going to make cookies, cakes, etc. I told him that I am going to let him see what it is like to see and smell all this delicious food and not be able to eat it.  He insisted he could do it as long as he had his egg in the morning, but I told him that he couldn’t have ANYTHING whatsoever.  Even though he hated to admit it, he knew that it was not a life to live.

 I know it is more dangerous, but the outcome is so much more worth it. Both transplants are extremely radical and dangerous.  However, if I am going to undergo a dangerous transplant like this, I want it to payoff in the end.  I wouldn’t want the intestinal transplant to only suffer more.  Taking the risk of the multivisceral transplant would be so much more worth it because just the thought of being normal is such a better idea.  I have so many plans for when I have that transplant such as having a party where I can gorge and eat anything I want.  I even have a menu of all the things I am going to eat once I get the transplant and are able to eat like a normal person. I also want to be able to have an alcoholic drink because I really never had one.  Between being a competitive figure skater when I was younger and then coming down with this illness, I never really got a chance to ‘drink.’  However, if I went and had the intestinal transplant, I could forget about that dream. 

 Speaking of organs shutting down, my heart is giving me additional problems nowadays.  Not only have my bloods been extremely low, which can easily cause me to go into cardiac arrest and have an arrhythmia, but I also have extreme pressure being exerted on my heart because of the air buildup in my abdomen.  There is so much air buildup because of my failed GI tract and therefore, the air is causing my organs to shut down because of the compression on them.  One organ that is being affected like I said before is the heart.

 I have also discovered that I am having even more heart problems when I eat because I am getting even more chest pains when I eat.  It turns out that when you eat the heart begins to pump blood back to the stomach and other areas to help the digestion process, which increases your heart beat and activates the autonomic dysfunction.  In addition, since my body can’t really absorb food and can’t really take in nutrition, my body is essentially being starved because of the failed GI tract.  As a result, eating leads to over secretion of insulin, which causes heart arrhythmia. It is like my body kind of goes into ‘shock.’  So, when this occurs, I can easily have a heart attack, especially when my bloods are so critically low and already gives me a significant risk of having an arrhythmia and cardiac arrest.

 In addition, I have been suffering with lesions in my mouth and we are not sure where they are coming from.  I went to the doctor and he didn’t like the way that they appeared.  He sent me immediately to see a surgeon, but due to the complexity of my condition and all my medical history, they felt that it was better that I saw a top surgeon who was also a pathologist at Long Island Jewish hospital.  However, when I called to make the appointment, the earliest they have is April 11th.  I desperately need the appointment now because the lesions are worsening and they are also painful. I am really getting petrified what they can be because I never really had something like this and instead of them getting ‘better’ and disappearing, they are changing and worsening. 

 I also wanted to let you know that I am going in for a ketamine coma tomorrow (Thursday).  I am really counting down the minutes until I have the coma because I am suffering so much.  I have never been so desperate for a coma before because not only am I suffering from pain so much and the ketamine coma gives me a day of relief from all my suffering that I never get a second of relief from, I am hoping that it will help with the discoloration that my body is exhibiting since it is really getting significantly worse. 

 I am deathly afraid of losing a body part and something really needs to be done quickly to allow that not to happen.  I am also hoping that the ketamine will heal the cracked toenail and skin ulcers that I have because ketamine in a high enough dose has been proven to cause ‘healing.’ In studies, it has been shown that approximately 2 to 3 days into the ketamine-midazolam anesthesia, there was objective evidence that the ulcers were healing.  Even though I am not being given the coma for that length of time or that high of a dose, hopefully it will still make a difference. 

 I might be going in for surgery as well during the coma, but I am not quite sure if that is going to happen.  I am still getting severe pain from my thigh to my knee and we are not sure where it is coming from.  Originally we thought it was from my broken hip that I broke in the past, but it was proven otherwise. They have been looking into my spine, so I don’t know if they are going to be working in the spine again when I go on Thursday.  I can’t even extend my leg or anything because of the extreme pain.  I am pretty sure though that they will be doing the surgery too, but I am not 100% sure.

 When I first started going into comas, I used to always bring my iPod into the room so that I could listen to music.  In this way, it kind of kept the bad dreams away since ketamine notoriously known for causing them.  However, ever since my dad has been allowed into the room, I have stopped bringing them because I like to hear my dad.  However, music really did make me relax. With everything that has been happening lately and all the stress, I was thinking that I should possibly listen to music again and it would help.  I can’t sleep or anything because of the pain and I was thinking about maybe the music would help that as well.  However, I used to have earbuds, but they aren’t really good anymore. I have had the same pair for over 15 years. I guess nothing lasts forever. Anyway… I have wanted these headphones for a while by Sony (X headphones), but unfortunately they cost money… money I don’t have.  They are currently on sale, but that doesn’t help because I don’t have the money right now.  Also… they are coming out with a cheaper version of the X headphones (MDR-X05/BR), and they are being released on the 25th of March. So I have been putting a little money aside each week so that I will be able to get them.  However, it will take forever at this rate. We are only putting on the side like $10 and they cost much more than that.  I know there are definitely other headphones I can buy, but I really have liked these and I know if you buy good, you will enjoy it.  Plus… I never really treat myself to anything; I really want to buy myself something nice for a change.   

 Although I have had some horrible times lately, I have also had an amazing experience since the last time I written my last blog.  I don’t have many friends or family left because of this illness, but lately a very dear friend has re-entered into my life and has been standing by my side.  Even though she wasn’t here in the beginning, I don’t care because she is here now and that is all that matters.  She is one of the most amazing friends that I have because she is always there for me. Even though she has her own family and also works, she still takes time out of busy day to make sure that I am OK and also to offer compassion and care to me.  She always extends herself to me so that she can give me a shoulder to lean on and is someone to talk to, someone to guide me, someone to even help me look for advances in treatment so I can possibly live.  She is someone that is by my side no matter what, and I can’t tell you how much that means to me.  As Herbert Humphrey once said, “The greatest healing therapy is friendship and love.”

 She has been extremely helpful in so many aspects.  Since I have gone through so many treatments and I have exhausted basically all treatment options, she is constantly looking for medical advances that can possibly help me, as well as and even willing to take me to appointments when my dad is unable to.   She is even aware of the lack of money that we have and how my treatments are suffering and as a result, she is doing whatever she can to try to raise money.  I only wish I can repay her for all that she has done because she has gone way beyond the call of duty. I can’t ever thank her the best. 

  In addition, she has even visited me multiple times and has made me feel not just like a “disease!”  She has actually made me feel more like a ‘person’ and has even taken me out to let me have some FUN and enjoyment in my life.  We all know that I may not have a lot of time to live because of all that I am going through, as I am rapidly deteriorating, but this friend is determined to give me the most fun I can have in my remaining days.  It is honestly like a dream come true and she is like my ‘angel’ because I am no longer ALONE. I am not locked up or cooped up in a house and just overwhelmed with this illness 24/7.  Instead, I actually someone enjoy myself and enjoy my life and I can forget about being sick for a bit.  

ImageThis friend is simply amazing and like I said before… when I am with her, I can kind of forget that I am sick for a bit. This past weekend I had one of the most amazing days of my life.  It was simply the best!! She took me out and we went to the food store and then we went to the beach.  I love the beach and haven’t seen the beach in the longest time.  It really was a dream come true.  In fact, even though there were dunes all along the beach because of HURRICANE SANDY and you couldn’t see the water unless you climbed over it, my friend was determined to have me see the water.  As a result, she did whatever she could to get me on top of the dune so that I could see the water.  I never thought I would get to the beach let alone on top of that dune. Yet, she managed to do it, even if it ended up her carrying me.  She really made my day, but unfortunately I felt like “Cinderella” because just like Cinderella had to be out of the ball by midnight because the magic would end and everything would turn back into their original form and she would transform back to her original life, the same happened to me.  Once 2 O’clock arrived, it was back to my “disease” life because I had to return home and become locked and succumbed to this disease.  I had to go back to living around the clock of taking meds, vomiting, etc. But, it was amazing while it lasted.  It was certainly a day I would never forget.

 ImageIn the meantime, I have also been trying to help my dad out and try to bring him in new business.  We really could use the money and I want to also feel like I am doing something ‘productive’ and contributing something. Even though I can’t be the ‘doctor’ that I always dreamed that I wanted to be since I was a little girl, at least I can still kind of make a difference by hopefully making a difference in his company.  Therefore, I have designed him new business cards, magnets so that people can put them on their refrigerator and know who to call for the best pest control and termite control company, pamphlets that tell about the company and bugs to give to customers, etc.  I also redesigned his website, and hopefully it will be better than ever.  When it is all done, I will share the website address with you so you can take a look.

 I know we don’t have money, but my dad has been paying me slightly for all the work I have been doing for him.  Even though it is minimal, I am putting it on the side for headphones.  When I first started going into comas, I used to always bring my iPod into the room so that I could listen to music.  In this way, it kind of kept the bad dreams away since ketamine notoriously known for causing them.  However, ever since my dad has been allowed into the room, I have stopped bringing them because I like to hear my dad.  However, music really did make me relax. With everything that has been happening to me lately and all the stress, I was thinking that I should possibly listen to music again and it would help.  I can’t sleep or anything because of the pain and I was thinking about maybe the music would help that as well.  However, I used to have earbuds, but they aren’t really good anymore. I have had the same pair for over 15 years. I guess nothing lasts forever. Anyway… I have wanted these headphones for a while by Sony or dr. Beats but unfortunately they cost money… money I don’t have. However, the minimal money  ($10) my dad has been giving me each week for payment has been going towards this.  However, it will take forever at this rate. I know there are definitely other headphones I can buy, but I really have liked these and I know if you buy good, you will enjoy it.  Plus… I never really treat myself to anything; I really want to buy myself something nice for a change.   

I really can’t wait to see the movie called “OZ the Great and Powerful.”  I loved the movie “The Wizard of Oz” since I was a little girl and watch it every single time it is on.  However, since I can’t go to the theater to see it, I guess I will just have to wait until it comes out on DVD.

I am also supposed to be leaving for California on March 25th. However, due to the lack of funds, we are not sure if we are going to be able to go.  We are supposed to be going to California to see the neurologist since he is one of the very few neurologists that really has knowledge as to what is going on.  I have been experiencing a lot of new symptoms such as my face going numb and feeling like I have hair stuck to my face because of electrostaticity, as well as how much worse things are getting (discoloration), so we wanted to see what was going on. He originally didn’t have appointments until August, but he was making an exception and fitting me in then.   However, with the lack of funds, we don’t think we are going to manage to be able to go.  It stinks that we have to fly across the country for just an appointment, but we really have no other choice since there really aren’t doctors that are really knowledgeable about my complex condition around here.  It is all part of this horrible disease.

I am also supposed to be scheduled to go back the end of April to California to undergo another coma and surgery, as well as to be tubed because they are trying to buy time.  I will be there for at least two weeks, but of course that depends on the fact if we have money as well.  We have thought about canceling the March trip and postponing the neurologist until this end of April trip, but we don’t know if it is such a good idea.  Besides the fact that we don’t even know if the neurologist can see me then because he was ‘fitting’ me in his schedule for March, there are plenty of new stuff going on and a lot of things worsening that we really need to find out what is going on.  We all know how easily things get out of hand and therefore, it is imperative to get a grasp on things as soon as possible because things easily worsen in me and can easily be a life or death difference.  I am rapidly deteriorating as well and we don’t even know if at this rate I will make it to the end of April. So… we don’t even know what to do.  Perhaps he can also do something to help me because maybe I am deteriorating so rapidly because of something he can help?  We just don’t know what to do because the funds are not there (not to mention the toll it takes on my body physically).  

I know I have asked in the past and must sound like a broken record by now, but I really need help… more now than ever.  It is really getting impossible to pay for treatment.  Even with cuts in treatment, it is getting impossible to even receive the essential treatments that I need.  Even getting a simple blood test is getting too expensive.  The cost of this disease is just getting to great.  If you can please do anything at all… whether it is to donate or spread the word and bring attention to my site, I would really really really appreciate it.  Please help me because I need all the help I can get, I really honestly don’t know how much longer I have even though I am trying to hold on as long as possible. 

So… that appears to be all.  Like I said before, I am undergoing the coma tomorrow (Thursday), so hopefully all will go well.  I have 2 upcoming trips to California planned.  Well…  I will keep you posted on everything that is happening.



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March 1, 2013


I know… it has been a long time since I last written.  But… I am still here and I haven’t forgotten about you.  LOL.  It just that I have been really not feeling well lately and it has been really difficult to do anything.  However, since a lot has happened and is happening, I figured I really must write and let you know what is going on.   I figured that even if I didn’t get to write and get to say about ‘everything’, at least you will know more than zilch.  So… I guess I will just see where this leads.

Living lately is like going down a ski slope with a double black diamond rating because I am going downhill so fast and constantly being challenged by obstacles that keep standing in my way (this slope is the steepest, narrowest, most difficult hill that is filled with more hazards than any other hill).  Not only am I having so many troubles with my health, but I am also having so many problems with my finances that are standing in my way of receiving the lifesaving treatment that I desperately need.

I desperately need help.  I desperately need help raising funds because I can officially say that my family is “broke!” I don’t say this lightly because for me to admit to this… especially to other people… it really takes a lot.  Despite making the ‘cuts’ in my treatment so that I could receive other essential treatment, it has gotten to the point that I can’t even get any treatment whatsoever because even going for a simple blood test is really a BIG ordeal.  I never thought that I would have to cancel going for bloods because we didn’t have money, but it has gotten to the point that money is so tight that we didn’t even have money to send me for my weekly bloods.

Money is so tight lately and it really scares me.  The bills are so great and we are having so many problems making ‘ends’ meet.  We are even having problems paying the mortgage and even putting food on the table at this point.  I hate to think that all these problems were because of my medical bills.  I know that they were probably not ALL my fault because the economy is not the best, but I am sure that having this very costly medical illness for so long didn’t help the situation at all.  I am sure that my illness really caused my family a great financial strain and I feel extremely horrible for all that I have caused my family to go through.  Not only have I caused them to give up so much of their life so that they can become ‘caregivers’ to me and they had to give up so much because I couldn’t do things like go out to eat and such, but they had to give up other FUN things that other people take for granted and enjoy like vacations.  We haven’t been on a family vacation in like 8 years.  My family has gone without fixing up the house and I am sure that my mom would definitely would have loved to have new stuff brought into the house or the kitchen redone or new furniture and stuff… stuff that other people take pleasure in redoing and getting so that their house can look nice.  However, to know now that my family can’t even afford the mortgage or to bring food into the house, it really bothers me because I would hate for them to lose the house or suffer so much because of me.  My father has never walked around with so little cash and just making it throughout the week on food alone is becoming a BIG problem.

I really need to find a way of raising funds because I need essential treatment that I am unable to receive.  Due to this severe financial strain, I haven’t really been able to receive even the most essential treatment.  Even to go to my internist or to go and have simple blood work that would cost me only a $15 copayment is too expensive at this point.  To think… the treatment that I need costs far more than that too.  By the time you factor in the cost of treatment, the specialists, the traveling expenses, the parking, etc. it really becomes quite expensive to see a doctor or go for a treatment.  Plus… even getting medication is really impossible because the copayments for medication are really adding up to be quite costly.  I take over 50 pills daily and they are quite expensive.  Even so… not all my drugs are covered by insurance, so it is quite possible it would cost me more than a simple $60 copayment.

I was supposed to be leaving this coming week, March 3rd, for California. I am really going downhill and it was essential for me to go to California for treatment.  However, since there is no money at this time, we were forced to cancel the trip.

However, things have gotten progressively worse and it is at the point that I really need not only lifesaving treatment, but I desperately need to go back to California since the specialists in California are the only doctors that can help me.  It stinks that the only doctors that can help me are on the other side of the country.  I am so complex and complicated and no one except the doctors in California can help me.  I have tried basically every single hospital in New York and even traveled to many hospitals in the country that were closer than California such as Cleveland Clinic, Vanderbilt University Medical Center, John Hopkins Medical Center, Duke Medical Center, Boston Medical Center, Temple University Medical Center, Indiana Health, etc. but the only place and the best place for me is California.  So, we really have no choice but to go across country.

I spoke to my GI doctor in California tonight and it has been determined that need to get to California ASAP.  So, we are planning on going to California March 25th.  So much has happened lately and my life is literally in jeopardy.  I need to not only see him, but I need to see the neurologist ASAP.  The doctors normally don’t have appointments until August, but they are fitting me in as an “emergency” because it is essential that I be seen immediately. When I asked the doctor if I can do any of the ‘workup’ or ‘tests’ here, the doctors said that it is at the point that it is way too dangerous.  I need to be under their care ASAP.

It turns out that it looks like my pancreas has failed me. They are basically 99.9% sure about this.  I have had so many warning signs, but we never really picked up on it.  However, now that everything has been occurring the way that they have been with everything else… it has been determined that my pancreas has now been failing me on top of everything else.  I can’t believe this.  After all that I have been going through… I now have to worry about my pancreas failing me. My life is like a ‘soap opera’ because there is never a dull moment; there is something always going on.

I am really nervous because I desperately need to acquire funds in order to get to California. We can’t afford to go on our own, and I desperately NEED to go.  My life literally depends on this because not only do I need to go because of my illness and such, but also I have to see what exactly is going on with my pancreas, as my doctor thinks that my pancreas has failed.  I am so nervous because I can just see how much this trip is already going to cost me.  Besides the traveling expenses and hotel and such, it is going to be very expensive with just the medical expenses alone.  I am sure they will need to run plenty of tests and each test they run has a copayment in itself of $150.  This includes blood work and radiology exams.  The doctor was already telling me how I am going to need blood work and CT scans and such, so I can just imagine the cost of all this.  Plus… if I am hospitalized, I will have a copayment of also $150 per day.  So… as you can see besides having the fee to see the specialist and the traveling expenses, my medical expenses are also going to be a lot.  I definitely cannot afford this on my own and I am only hoping that there will be a way to raise some funds for this.  Otherwise I fear that I won’t be able to go and my life will suffer for it.  There has to be something that can be done.  Even though I contacted the media so many times and I haven’t been successful because it isn’t “what you know it is who you know”… there has to be something that can be done like a way to get it publicized so more attention can be brought that I need ‘help’ or something.  There has to be a way to get it in the media… especially the newspapers or something.  If you have any suggestions or can be of any assistance, please let me know because I am freaking out and I am so desperate.  If I can’t even afford to go to doctors around here and pay for a simple blood test, how am I going to afford all this in California? I only fear that my life is going to suffer for this.  It is so unfair how much the green dollar is in control of my health, life, and destiny.  I can only wonder what the world would be like if money didn’t exist.  You know?

I have been complaining lately about my stomach really killing me.  My stomach has been really distended and I have been feeling ‘pregnant.’  Not only have I felt ‘pregnant’ but I looked it as well.  I can officially say that even though I don’t have kids, I can definitely say I know what it feels to be ‘pregnant’ because of the way that I am feeling. It isn’t’ just me saying this either.  When other people look at me as well, they say the same thing because my stomach is so distended.  So, it isn’t just me being bias.  My stomach hurts so much and it feels so inelastic.  It feels like it can’t expand… even a little bit.  It feels like there are thumbtacks just sticking out of me 24/7.  Even though I am sooooo incredibly thirsty, I really can’t drink because not only do I have swallowing difficulties, but I can’t also drink because the liquid will make my stomach expand even more and it can’t because it feels so ‘inelastic.’  It is like it is maxed out and swallowing anything cannot make it expand anymore.  So when I swallow anything because I am thirsty, it causes even more pain.  I am in so much pain as it is… I can’t afford to have more pain.  You know?  I am so filled up with air that I am so surprised that I haven’t floated to outer space or something.  I really need someone to pop me!

Not only am I so bloated and distended that it is causing me severe pain and discomfort, but it is also causing so much pressure on my organs.  I am so tiny too, so it causes additional problems because it doesn’t give much room to allow the ‘bloat’ to go other places.  As a result, it is putting severe pressure on my organs and causing them to fail.  Even my heart is having problems.  So, my body is basically shutting down and such because of the pressure of the ‘air.’  The doctors are also worried about the pressure causing my intestines to twist because it can really kill me instantly if that happens

I also am having so much trouble keeping weight on me. I am already down to so little weight and I can’t afford to lose any weight whatsoever.  I barely weigh in the 60s and any weight can really be extremely life threatening.  No matter what I do, I just can’t keep my weight on.  I just don’t know how long I can hang on with constantly losing weight.

In addition, my bloods have shown a very high level of amylase.  It is like 3 times the normal limit.  No one really knew the cause of why it was raised so much.  But we just knew that it was raised.  However, now that it is raised and taken with all my other symptoms that are occurring, we know that it is most likely because of my pancreas failing.

I am also having lesions in my mouth.  The roof of my mouth is very swollen and there are lesions in there as well.  I went to the dentist, but he wasn’t quite sure what to make of it.  The doctor put me on Lidocaine to help with the pain, but if the lesions didn’t get better or if it worsened before Monday… I would have to go to an oral surgeon to see what is going on.  Even though they are pretty sure that this could be because of the pancreas, the doctor still wants the surgeon to look at it if on Monday it is still there or worsens.

I am so very weak.  I can barely stand without collapsing.  My legs just feel so weak and they feel like weak twigs ready to snap in half.  I barely can walk (with my crutches)… let alone go up and down the steps.  I used to be a pro with the crutches go up and down the stairs with the crutches, but that isn’t the problem. I can still go up and down the stairs with the crutches, but the problem is that my legs just can’t support me anymore and they little crumble underneath me when I come down onto them.  I then don’t have the energy to go up the stairs or the strength of my legs to get me up the stairs anymore.  I never thought that I would end up like this.

My heart is also giving me problems.  Not only am I aspirating and having trouble breathing, but my heart is also suffering.  We don’t know why, but every time I eat anything, my heart gets palpitations and goes out of rhythm and such.  We think it is because I am so undernourished. It only confirms that something needs to be done because my body is just suffering so much and when I finally get ‘nourishment’ my organs and body are going into shock.  In fact, when I do get better, the doctors told me that they will have to ‘feed me ever so slowly’ because of the ‘Refeeding Syndrome.’  Refeeding syndrome is a syndrome consisting of metabolic disturbances that occur as a result of reinstitution of nutrition to patients who are starved or severely malnourished.  Any individual who has had negligible nutrient intake for 5 consecutive days is at risk of ‘Refeeding Syndrome,’ so you can just imagine how much at risk I am.  During refeeding, insulin secretion resumes in response to increased blood sugar; resulting in increased glycogen, fat and protein synthesis. This process requires phosphates, magnesium and potassium (which are already depleted).  Cardiac arrhythmias are the most common cause of death from refeeding syndrome, with other significant risks including confusion, coma and convulsions and cardiac failure.

It is imperative that I get to California to because I have to seek the expertise of my neurologist because he is the only doctor who can help me. Even though I have seen other neurologists, he is the only neurologist knowledgeable about my complex situation.  I have something new going on as well with my nerves, so it really needs to be looked into.  My face keeps going numb and it feels like there is electrostatic energy too on my face at times.  I never had this feeling before, so it is definitely something we need to look into.  In addition, my legs are becoming ‘blacker’ than ever and they are not resuming normal coloration.  It is extremely dangerous because it means no blood flow is occurring.  We are pretty sure it has to do with my neurological disease/autonomic dysfunction and therefore, it is essential that my neurologist do something immediately because time is of the essence.  If something isn’t done quickly, I can easily lose my legs because of the deprivation of oxygen.  I also feel like someone is constantly hammering my toenails. It is extremely painful.  So hopefully the neurologist can help me with that aspect as well because the suffering is horrible.

I am really scared because I watched my grandma die last year.  I am so afraid that this is just like last year repeating itself.  My grandma and I had a deal that we were going to stick together like ‘peanut butter and jelly’ and be with each other to the very end because she had cancer and neither of us was going to give in.  However, she started to really deteriorate starting last January 2012 and ended up dying 2 months later in March 2012.  I am so afraid that I am going to suffer the same exact fate because I watched her deteriorate and suffer the exact same symptoms that I am exhibited and in the same time frame basically.  I watched her go from having trouble walking, to not being able to really move her legs, to not being able to walk, to not being able to swallow, to not be able to eat, to losing so much weight that she was a bag of bones and her glasses looked so huge on her, to not be able to talk, to not be able to communicate really, to just sitting in wheelchair and having people do everything for her (even transfer her back and forth), to drooling, etc.  I watched her basically go from a human being to being trapped in her body because I truly believe that she knew exactly what was going on and understood everything, but she just couldn’t talk to people.  Even though she really didn’t ‘communicate’ or ‘talk’ to people she made sure she found a way to ‘talk’ or ‘communicate’ to me even if it was through murmurs or something.  She knew exactly who I was and always made sure that I knew that she ‘loved’ me.  So I truly believe that even though she couldn’t really do anything…. She knew exactly what was going on.  Her body might not have been hers anymore, but she still had her mind.

I am so very scared I am going to end up like my grandma.  I was with her throughout her illness until the day she died.  I was even there when she died, as she died in my arms.  She actually waited until I got up to the nursing home to see me until she passed away in my arms.  I don’t want to suffer the same fate.  I don’t mind dying because I am suffering so much, but I just don’t want to be like she was right before… with the drooling, the inability to communicate, having everyone do everything for me, etc.  That is my biggest fear.  My dad promised me that he would never let that happen, but I know that he is not in control.  He knows it too that he is ‘not in control’, but he always tries to be my hero and knight and shining armor. That is why it hurts him so much that I am sick because even though he wants to help me so badly, he knows that no matter what he does… nothing he does can make me better.  He feels bad because even the simplest thing like take me for treatment or give me treatment to help me is something he can no longer do because of the financial strain.  It hurts him so badly.

Dad is one incredible person though.  There isn’t anything that he wouldn’t do for me if it was in his power.  He would literally go to the ends of the earth if he knew that it would get me well.  Since my bloods are so bad and such, I need to have these medicated ice-pops.  Not only does my dad spend endless nights awake with me because I don’t feel well, but he gets me at least 2 ice pops throughout the night because we have to try to keep my bloods up as much as possible.  So in order to do so, not only do I eat and have ice pops throughout the day, but I also have to wake up during the night (actually dad has to wake up because I don’t sleep) to a ‘snack’ and 2 ice pops.  I try to have a little cereal, but it is extremely difficult.  Anything that has carbs is so hard to get down.  I have been living basically on egg whites, but I try to get down some corn flakes during the night.  Even swallowing pills, the ice pops, and even just liquids is getting to be impossible. To not to be able to swallow the ice pops or just liquids… you can tell it is bad.

Finally, the doctors have to also look into why I am getting so much pain when I take my injections.  I usually give my injections into my stomach since that is the most ‘padding’ that I have.  Anyway… when I inject the needle, it feels that the liquid hits an obstruction and deviates to other places. As a result, it causes tremendous pain instead of going just directly ‘inside’ me.  It is really weird that the medication goes the way it does when it is being injected instead of going directly into the abdomen.  So it is just one other thing that the doctors have to figure out what is going on with it.

So… I guess I just have to pray that something comes about with the funds by the end of the month because I desperately need to get to California.  My California doctors are sending me to my GI doctor in Manhattan to keep an eye on my failed pancreas in the meantime, but ideally… the only people that can help me are the doctors in California.

So… if you can please help me raise some funds or spread the word that HELP is desperately needed, I would really appreciate it.  In the meantime, if you can please PRAY for me, I would really appreciate it too.  I really need all the help I can get because time is definitely running out for me.

I had a conversation with my dad the other day and I told him that I compared myself to a ‘stegosaurus.’  A stegosaurus and I both have the same coloration, both have spikes (especially down our backs…. from the neck down to butt), both have cheeks (only dinosaur with this advanced feature), we both don’t eat meat, and like the stegosaurus… I will soon be extinct unless something is done quickly!!

I really hope that I get better.  It is so unfair that I am suffering.  I have absolutely no FUN in my life whatsoever.  There is so much that this illness robbed from me and so much that I still want to do.  It stinks that there is no MAKE A WISH FOUNDATION for adults.  I really wish that I would be given a chance to have a ‘wish’ but unfortunately I am not under 18.  By being over 18, you really lose out on a lot of things… including staying at the RONALD MCDONALD house, which would really help a lot.  I told my dad that the only thing the three-letter word FUN and I have in common are the ‘first’ and the ‘last’ letters.  I really wish I would be able to get better so that I can do stuff that normal people do.  This is definitely not a way to live a life.

In the meantime, I have been trying my best to keep myself as ‘normal’ as possible.  I am reading a great book called SUSPECT by Robert Crais.  I strongly recommend this book, especially if you love mysteries and suspense and/or love dogs.  I also can’t wait for the new movie OZ THE GREAT AND POWERFUL to come out.  I really want to see that movie so badly.  Of course though I will have to wait until it comes to DVD to see it since I can’t go to the theater. It looks like it is going to be a great movie and I am such a WIZARD OF OZ fan.  THE WIZARD OF OZ used to be my favorite movie when I was a kid.  In fact, whenever it was on, I used to watch it ALL the time.

I can’t believe it is March 1st already.  Looks like springtime is just around the corner.  YIPPEE.  I hate the winter because I hate the snow and cold.  It looks like we got away with not having too much snow this year.  Hopefully we are all done with the snow, but I am not counting it out just yet! I just can’t wait for the beautiful spring weather. Springtime is just so pretty.

Well… I guess I will be going.  I will keep you posted with any updates like always. Talk to you soon!

– Fallon

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