Just figured that I would write because I had a little emergency today. O my goodness… things are getting so very bad. I am supposed to be leaving Monday for Nebraska. Yet, I am only 2 days away and I don’t even know if I am going to make it there. Plus… we don’t even know if that is the “smartest” thing to even do anymore. So much has happened… especially within the past 24 hours.
I am writing because we never know what is going to happen anymore or where I will be. Things are touch and go now with me and to be quite frank with you… I really don’t think I am going to see the New Year. I am hoping to even make it to Christmas. Dad keeps saying that I will make it and that they are not going to let me “die.” To be quite frank with you… I am like living a tight rope right now and it is ready to snap any minute. We even thought it was going to actually snap this morning. We came so very close to going to the hospital this very morning.
I really haven’t been feeling well. I have been getting the weirdest pains. However, we never know what to make of these pains because I am constantly in pain. I am in pain 24 hours a day 7 days a week. In fact, I never get a minutes rest. I am on so many painkillers including methadone, morphine, nucynta, dilaudid, etc. because of how much pain I am in. They say that if “hell was a clinical medical condition… it would be considered my disease.” I suffer from one of the most painful diseases out there, as I suffer from a rare and life-threatening neurological disease, autonomic dysfunction, and severe gastroparesis. I also have other severe problems, but they probably aren’t as painful as these major problems. For example, the brain tumor isn’t as painful… it is just there and causes major problems in my head and such because it is on the pituitary gland, which is the “master” gland in the body, which regulates everything.
Anyway… as I was saying… I am used to having pain everywhere and there isn’t a day that goes by that I am not afflicted with pain. That is why I go for ketamine comas as well, as I have had numerous other treatments, but they have all failed. I really need an amount of ketamine that is not FDA approved in order to deal with the pain, but since it isn’t FDA approved and can only be done outside the country, I have to deal with getting an amount that isn’t really “sufficient” or enough to hold or maintain me. Theoretically… if I would get this high dose of ketamine outside the country… I can be “cured” of this pain because it is an NMDA receptor and it would essentially be like “rebooting” a computer. I would be wiped free of pain. However, the procedure is very expensive and will cost me close to $100,000. I am hoping to be able to have that procedure because not only will it cure me of this disabling and crippling pain, but it will also “cure” me of my life-threatening neurological condition as well.
But in the meantime, I will just have to deal with receiving the amount of ketamine that is permitted within the United States, which is only helpful or beneficial while I am “under” the ketamine. Once I come out of the coma, I am kinda back to square one because it is so very painful. However, I still undergo this risky coma procedure because I will do anything to get a little “break” from this agonizing pain. You have no idea how bad this pain is and it is definitely worth undergoing this risky procedure to escape it… if only for a couple of hours. Even though I undergo weekly ketamine comas, I am also hoping to undergo a more intensive coma in Florida (even though it isn’t as intensive as the coma out of the country, but more intensive than the one I receive in New York), but it will cost me over $20,000. I desperately need help because I am one sick person.
I get the weirdest pains because of my illness. My illness causes the weirdest problems that you would never expect because I suffer not only from a rare and life threatening neurological disease, but also because of autonomic dysfunction and severe gastroparesis. I can have one pain one minute and another type of excruciating pain another minute. It is like this disease has a “mind” of its own and if you “start” with it… you better watch out because it will pay you back twofold. One minute I can be suffering from electrocuting pain. Another minute it can be throbbing. Yet another minute it can be spasms. I receive every symptom of pain you can imagine including freezing, burning, stabbing, prickly pain, aching, pressure pains, sharp pains, throbbing pains, sharp pains, etc. I get symptoms from these diseases that include basically everything under the sun, which include pain (often “burning” type), tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, flushing, discoloration, and shiny skin. I also have extreme hypersensitivity, which means that the slightest touch or breeze can cause a pain so excruciating that it’s difficult even to comprehend let alone describe it.
My disease is the weirdest because not only does it give me this pain, but it also gives me so many other problems. I get sores, vision problems, memory problems because I problems with short term memory (easily forget things they have been asked or are supposed to do. I also tend to forget the topic of a conversation in the middle of having one), constipation, weakness, dizziness because nervous system that is controlled by the brain can influence everything in the body including your equilibrium (an unbalanced equilibrium can cause minor to severe dizziness which many times is escalated as a result of the meds), itchiness, joint stiffness, muscle atrophy, black-outs, and have twitching or spasms. I also have differences in nail growth, hair growth, sweating and temperature. The list goes on and on, but since I have severe autonomic dysfunction, it adds to these problems because it even makes it harder for my body to regulate these problems.
So… when I have a something occurring to me such as a pain, I never know if it is something to worry about or if it is just attributed to my disease. I never know when to “worry” and go to the hospital or when to just sit back and just “wait it out.” I suffer all the time and if I was to complain and go to the hospital over every pain I got, I would be living at the hospital. I also hate going to the hospital when I get a pain because I don’t want to be known as the “boy who cries wolf” because when there is something to really worry about, then they won’t really treat me because they will astronomically think that it is “nothing” like it always has been. So usually since I don’t want to be known as this “boy who cries wolf”… I stay at home and suffer. That is what really scares me. I get so many pains from my illness that I never know when it really is something to really worry about.
Anyway, I have really been feeling bad lately. I have been getting pains down my arms, my heart has been feeling funny, and so has my stomach. I always have heart and stomach problems, but these have been out-of-the norm. My heart has felt more fluttery than usual and when I breathe, it feels like there is fluid in my lungs… especially when I lay down. It almost feels like when you have bronchitis or a bronchial cough. You know that feeling when you breathe and you can hear all that mucous in your chest? That is how I feel. I have a problem with aspirating, so I just attributed it to that.
As for my stomach, my stomach hasn’t been doing well either. My stomach is completely dead and so is my GI system. That is why I need to go to Nebraska and Indiana. I need to have a transplant of the stomach, small and large intestine, and pancreas. I only weigh in the 60s. However, my stomach has felt lately very hard and it won’t expand anymore constrict. I can’t really explain it, but it just didn’t feel ‘right.’
I have also recently been to the doctor and was told that I need to have a certain IV treatment about twice a week in the hospital due to my severe gastroparesis, malabsorption, and illnesses. My organs are shutting down and as a result, they are very inflamed. The doctor said that I need to have this IV treatment since I am suffering from malabsorption because without it, my organs are getting further inflamed and shutting down even more. So I was already aware of this matter.
Well… enough with the history and I guess I should tell you what happened already!!! I wasn’t feeling well during the night because my stomach was really hurting me. I was getting the worst stomach pains… worse than ever. I get these pains every so often. Even though my stomach hurts all the time, there are times when I get “flare-ups” worse than others. During this time, I get this crippling pain in my stomach that all I can do is curl up in a ball and not move or talk. It radiates from my stomach all the way up to my jaw and everything. It can even mimic a heart attack. I was getting this pain all night. I was also feeling a little weird, as I felt like I was coming out of my body.
I had the doctor this morning, so my dad was picking me up to go to Manhattan. As I proceeded to get ready, I was getting spasms in my abdomen and prickly feeling. Even though I didn’t feel quite “right,” I didn’t really think that anything was really quite wrong or anything horrible was going to happen. So… I just ignored the pains. Even in the car when we were going to the doctor and I was getting cramps and spasms then in my back by my right kidney, I still proceeded to ignore them. I did tell my dad about it, but I still “ignored” it because I thought it would just “pass” and it was just the usual “pain” that I get from my illness. However, deep down I had a feeling it was my kidneys and that they were shutting down or failing me.
However, everything really culminated when we were at the doctor’s office. I really thought that I was in the best place when all this was happening. I got so very sick that I honestly thought that I was going to “die.” I never felt so horrible. I got such an attack… one of the worst I ever had gotten. Yet, when I got the attack and I was at the doctor’s office, I was like what better place can I be at because if something was to happen, at least I am at a doctor’s office. At least a doctor can help save my life because I felt like I was going to die!
I also thought I was in the best place because not was I just at ANY doctor, but I was at my pain doctor. So… I thought for sure that he would be able to give me something for the pain, especially since he does procedures in his office. However, apparently I was wrong. All the doctor wanted to do was call an ambulance when I was so very sick and bring me to the hospital. You would think he would be able to help me or give me something for the pain at the very least, but instead… all he said was “What do you think this is… a hospital?”
I couldn’t believe it. He had absolutely nothing and he couldn’t really do anything to help me. The doctor and my dad brought me to lay down because I was suffering so much. I was also breaking into cold sweats and therefore, they took off basically all my clothing because my autonomic dysfunction was also getting triggered off. The pain was off the scale. All I could do was moan and groan. Nothing was helping.
I never saw my dad or the doctor freak out so much. I was even freaked out. Usually I am the “calm” one. Yet… I never had pain like I had like this. I saw it in my dad though… he was more nervous than ever because he never saw me like this! I was trying anything and everything to try to deal with the pain and to try to “simmer” it down. When I asked the doctor for anything, he had nothing. Like I said before… I would expect him to have at least SOMETHING because he was a pain doctor and he did procedures, but he had absolutely nothing. The only thing he said he had was Senokot, which was something that I definitely didn’t need.
When I asked for something to eat such as crackers to see if possibly I maybe had too much “acid” in my stomach, he didn’t even have that. But you know what he gave me instead? He was like “we have pretzels!” He told me that they were from Halloween, but that he had them yesterday and that they were still good. At the state that I was in… did he think I cared if they were stale or not… or where they were from?
The doctor really wanted to call an ambulance to bring me to the hospital. However, we all knew that the hospital wasn’t really probably the BEST place for me because it would be a NEW YORK hospital and the best places for me in this condition is out-of-state like in California, Nebraska, or even Indiana that specialize in my condition. Also, we knew that if I would go to the hospital today… there would be no way that I would be going to Nebraska on Monday, and we knew how important that was too. We knew that the specialists were in Nebraska and how important it was to get there… especially since we had the transplant there. So… we really wanted to avoid the hospital at all costs. But the doctor thought possibly that I needed to be “decompressed” because my GI system is so “dead.”
I was in so much pain that even when the doctor was going through my medications to prescribe me, I didn’t even care what he was doing. I really needed him to increase the medications because they were no longer holding me. I have been maxing out on all my medications and I have been climbing the walls. Therefore, I really wanted to talk to him today about giving me something else so that I can try to live with the pain because the pain has become unimaginable. However, when he was trying to do this… I just couldn’t even focus. I was in too much pain. I was like just give me “whatever!” So… since I have been on everything already and there really wasn’t much else to give me… he ended up doubling up and raising my morphine dose. Hopefully that will do the trick because I am literally climbing the walls.
I really thought I wasn’t going to make it. Nothing was squelching the pain. I couldn’t move. But, of course I couldn’t stay at the doctor’s office forever. I had a choice to either leave to go home or we were going to have to head to the hospital. I was so hot from what was going on that I didn’t even want to put on my jacket and such. I was also in so much pain that I didn’t have the patience or anything to “wait” around. I wanted to get out of there and into the car so that we could either get home or to the hospital. So as my dad was trying to get everything together such as my gloves and glasses and such because we kinda threw them everywhere when they undressed me because I was suffering so much, I was like “just throw them anywhere and lets go.”
Dad was so scared that something was going to happen to me. He kept asking me every two seconds as we were walking to the car if I was “ok.” It was hard enough to walk to the car… I barely could speak. Once in the car, I curled up on the seat and prayed that I would make it home. My dad also stopped down the block to pick up tums and make me a cup of tea to see if possibly that would help. Of course nothing was helping though. All the way home from Manhattan, dad kept poking me to make sure I was still “alive.”
When we arrived home, I was too weak to get out of the car. Dad carried me into the house and placed me on the couch. I curled up on the couch and prayed that I would be ok. I never felt as bad as I did today.
For me to even contemplate going to the hospital today, it had to be really bad. I really didn’t know what to do. Yet, I knew that if I went to the hospital, I wouldn’t make it to Nebraska, so I really wanted to try to hold out as long as possible.
I did speak to the doctors though later on and it was confirmed that my organs are failing and shutting down. It is getting really bad that if something isn’t done and done soon… it is going to result in disaster. We can’t wait any longer or “hope” that something is going to turnaround or come about. My time is basically all ran out. The sand in the hourglass is done. We have known that I am sick, that I was dying and that time was of the essence, but we were hoping that we would be able to hold out and wait to raise money because we couldn’t afford the necessary treatment to save my life based on our own efforts. However, we now found out that we can’t wait any longer. If treatment isn’t sought now… I am basically “done.”
I am really scared because I know that we don’t have the money to get me the treatment that I need. I know how hard my family has tried to afford me treatment and how much they wish that they could do more for me. But I know that it just isn’t possible. I just wish that I could get the support and donations that I desperately need. I am totally grateful and appreciative of the donation and support that I have already received, but they are far from what is needed. I am so very scared because I know how desperately I need this treatment and I know that it just isn’t’ possible because we can’t afford it. I know how I pleaded in the past with people by posting things on Facebook, making the website, making posters, contacting the media, etc. but nothing has been effective. I am so scared because I don’t have the time to wait around anymore to see if anything will come about or to plead anymore for help. I have come to realize that no matter what I do… I don’t think there is going to be any further support or donations. I desperately needed the media to cover me because that would have been the “secret” to all this. This way it would be known to the public and so many people would hear of my story. However, I guess it is like the saying goes… “It isn’t what you know… it is who you know.” It just bugs me because I see all this coverage for other people on TV and stuff and when I try to get help for my illness and so that I can live to see my birthday or to have a “life,” it just isn’t possible.
So… hopefully I will be able to make it to Nebraska on Monday. Hopefully I will not end up in the hospital or something worse won’t occur. However, we have been thinking that maybe going to Nebraska isn’t the “right” answer.
We did speak to Indiana today and we are scheduled to go to Indiana on January 20th. That is a very long time away, but with the holidays… we really don’t have a choice. Since I am going to Indiana for the transplant, there are so many tests and evaluations to be done. I basically need to have every test and every evaluation you can imagine, so I basically need to see every single department. So the earliest that it can be arranged altogether so I don’t have to travel back and forth (I am too weak and can’t afford it), would be that time.
Even though we are supposed to be going to Nebraska on Monday for the transplant evaluation and to “list,” I am not sure that is the BEST place for me. They are known for intestinal transplants, but I need more than that. I need a multi-organ visceral transplant, which includes a stomach, small and large intestine, and pancreas. The transplant that I need is extremely rare and risky. It runs the highest rejection rate of all transplants and I want to be in the best hands. Plus… I have so many other problems that I don’t know if Nebraska can handle me. I think possibly Indiana might be better able to handle me and might be a better hospital since they might have better depts. In the other areas other than the intestinal areas. Plus… they have been doing multi-organ transplants since 2003 and have done about 50 of them since.
So we don’t know if we should possibly put all out eggs in that basket of Indiana and wait for them and use the money that we were going to spend on Nebraska and go to California instead. Hands down… California is the best place for me to have treatment and the transplant. They have the best teams there, as their doctors are the absolute best. We never received as good as care as we did there. But, unfortunately, the insurance company won’t pay for me to have the transplant there. However, they will pay for me to have “treatment” there to hopefully buy time. But that is only a penny in the bigger multi million-dollar picture.
We were thinking of using the money that we were going to put towards Nebraska and go to California to try to “buy” time until Indiana. We were in California before and had to leave because we ran out of money. However, we were supposed to return because they wanted to put me into a coma and try giving me the tubes again. Even though my body did reject the treatments and surgeries that they did when I was there the last time… they wanted to try putting me into a coma this time so essentially my body would be “comatose” and unable to “reject” anything.
However, that would mean that we would have to cancel Nebraska and putting all our eggs in Indiana. It also means that we would have to wait to the end of January for the appointment and who knows if I have that time to wait. Also, if things don’t work out with Indiana, then what do I do because I won’t have a backup since Nebraska won’t be in the picture and that is the ONLY other place the insurance company will pay for the transplant. After all, Indiana does also want us to live near them prior to the transplant, which will be a hardship. There are a lot of factors and we don’t know if the transplant in Indiana will be possible 100%. So is it worth risking it and putting all our eggs in that basket and going to California to try to “buy” time instead?
In addition, when it rains it pours. My dad’s technician isn’t working now too. So… when we go away, no one in the business will be working. This isn’t good news because at least when we went away before, at least SOME work was going out even though it was minimal. Now… no work will be going out, which means no income coming in. I don’t know what we are going to do. I am so very scared because I know how desperately my dad needs to work and bring in the work because without it… there is no money to pay the bills. If something was to happen to the business because of me, I would never forgive myself.
Well… I guess I have a lot to decide on. I am really hoping still that I get that “miracle” of getting well, or I am hoping to at least get some further support and donations from people for the holidays. I really desperately don’t want to die. I have so much to live for and my time on earth is not done yet. I was robbed of so much in life, and there is so much that I want to still do. I really want to be able to be able to have a get married, have a family, become a doctor so that I can help others, etc.
One thing that really stinks about this disease is that this disease really took away my memory. I don’t really remember my life a lot before this illness. My mom and I were watching the 12-12-12 concert for the SANDY storm and we were talking about how she misses me playing the violin. She told me that out of everything… she really misses me playing it the most. She told me how beautifully I used to play and how it was the only thing that used to relax my dad and such. She said that I was extremely outstanding on it and such. I really have no memory of really playing. But I must have been good because I was concert Mistress and received a perfect score on the highest level at NYSSMA. She told me how she wishes I would play it again, but that is just another thing that this disease really has taken from me. My fingers among other things won’t work due to this stupid illness.
There is so much I still want to do, but I know how it isn’t going to be possible without getting either a “miracle” or further treatment. The cost of my treatment is so astronomical. My parents have paid for it for so long, but it has been so costly that my parents can no longer pay for it anymore. We have made so many “cuts,” but even with those cuts, we can no longer pay for it. It stinks that I can’t receive the treatment that I need to try to save my life. Not only do I need this transplant, but I need so many other types of treatment that requires money. I need very costly surgeries, medications, visits to doctors, traveling expenses, etc. As it is, the cost of copayments alone (and that is with the insurance paying) is over $25,000 a year. I still then have to worry about paying for the appointments, medications, traveling expenses, surgeries, etc. that are not covered by the insurances. I can’t just have a “cheap” health plan either. Most of the top specialists either don’t take insurance or I need a very expensive health insurance plan that would be able to cover my needs. So… I get hit under the belt all the time with bills. The bills have piled up so much that we can’t even afford to pay them anymore. It definitely doesn’t help when my dad has to take so much time away from working because he has to take me to appointments and such. Multiple trips to and from the doctors (Especially since they aren’t local) are taxing on us, so much so we have been forced to not seek all the needed or receive all the necessary treatments due to lack of funds. When my dad doesn’t work, no money is made and the business also suffers. It is very scary when you don’t have sufficient funds to rely on.
Even with the insurance paying for the transplant, I would still need plenty of support from others in order to actually go for it. But, I would definitely need the insurance company to at the very least pay for the transplant because we are talking about over a million dollar operation. However, I still need so much help to continue treatment and to receive the transplant because I still have to worry about the copayments, insurance cost, medications, doctor appointments, traveling expenses, relocation expenses, etc. The transplant is only one part of the bigger picture, but it is definitely something that has to be taken care of by the insurance company in order for it to happen.
Well… I better get going. I am not feeling well. I just wanted to update you on what is going on. I guess when everything is decided upon, I will let you know what is going on. In the meantime, I have been trying to keep myself busy by taking pictures of my animals. They have been my best friends and only companions through this entire illness. In fact, my dog’s birthday was the other day. I bought him a stack of money stuff animal because my dog just loves money. He always goes into pocketbooks and steals money out of it. I don’t know why he is attracted to money so much, but now he has his own stash. So I have been working on “photoshopping” my pictures and learning different techniques that can be used. I learned how to make my pictures look like illustrations, cartoons, etc. It has been keeping me busy at the very least.
For the holidays, my mom did buy me a shirt, but unfortunately it doesn’t fit. It stinks that I am so very small. It was gorgeous though.
I also bought my mom a friendship bracelet. It wasn’t anything major because it was made out of “string.” However, it is just a little something to show how “special” she is to me. It has a heart on it and everything. This way she and I both can have one. Even though she may not always be with me… especially when I travel because she can never come with me… at least she can always have me with her and I can have her with me as well. We both can have each other’s heart on our wrists. I thought it was just a little something that would be nice to have. Even though it was made out of string, I thought it was “special.” You know?
As of right now… we are headed to Nebraska on Monday. So… I just gotta hang on until then. It is only a few days away. I made it this long… I can make it a few more. Hopefully the double morphine will do something. I just hope that I see the New Year, which I am really scared that I won’t… especially if I don’t receive help from other people because I really need treatment… treatment that I can’t afford.
Well… have a Happy Holiday. Talk to you soon!!