Well…it looks like this is it. One more day, and then I am off. I can’t believe it has finally come to leave for California. Gosh… it feels like I just got back from the last trip and now I am leaving again to go back. I really don’t wanna go back already, but I know that I have to go back. I know that it is the best place for me because all the top doctors in the country are awaiting for me to come there.
I am heading to California because I am headed to Stanford University Medical Center because all the top doctors are supposed to be at that hospital. All the top doctors throughout the country in all different specialties have supposedly transferred to this hospital and joined a “team” to help me in my illness. This is one of my last chances because I am rapidly deteriorating and without their help, I will surely die. I have been to countless number of doctors and traveled throughout the country. I have been to the Cleveland Clinic, Vanderbilt Medical Center, John Hopkins Medical Center, all the hospitals in New York (Mount Sinai, NYU, Columbia, etc.), Temple University Medical Center, etc., but no hospital has been able to help me so far. Even Temple, which is supposed to be the #1 hospital in digestive diseases, hasn’t been able to help me. I am really running out of time and something needs to be done quick if I am going to be able to live. I am really running out of time, as my body is shutting down.
I am really deteriorating. I am dwindling down to nothing as I barely weigh out of the 60s. My organs are shutting down. Besides my underlying neurological disease, which is extremely painful and affects everything on the nervous system, I suffer from severe Gastroparesis and a brain tumor. Therefore, my entire digestive system is paralyzed. My esophagus, stomach, small and large intestines, etc. all don’t work. They are all paralyzed. I can’t even swallow, as my esophagus gives me additional problems. Therefore, it is extremely difficult to eat. They have tried numerous medications and they even tried parental nutrition such as TPN and NG tubes and everything else, but they all have been unsuccessful.
I am literally dying. After all, there isn’t so much more that I can take because I am so emaciated looking, as I only weigh like in the 60s. I am so fragile and look like a walking skeleton. I can’t absorb my nutrients and even when I take medication for my illnesses, we don’t even know what I am absorbing. The medication isn’t even dissolving where it is supposed to dissolve, which is in the stomach. It usually dissolves in my esophagus because it is “paralyzed,” and therefore, it leads to further problems. There are so many problems that it has ulcerated my esophagus because it dissolves there instead of where it is supposed to dissolve, which is in the stomach. I have had to have endoscopies just to remove the pills because they because dislodged and stuck in my esophagus. In addition, there are times when I take the pills in the morning and when I vomit after dinner (which is like over 12 hours later), I can take all my pills to my dad in a cup because I vomit up my pills that I took earlier. You can literally see that they are all “whole” still and not dissolved, which is really weird because you would think that they would be dissolved and absorbed already, especially since so much time has passed. So… we really don’t know how much medicine is absorbing and really working on me despite the amount of medications that I take. I take over 50 pills daily, not including the daily injections that I have to give myself as well.
In addition, I suffer from a severe pituitary tumor. I have been diagnosed with this on top of everything else. Who says that when it doesn’t rain that it doesn’t pour, right? So… this has given me additional problems. It has really caused me problems because due to my severe gastroparesis, I am on medication that actually “feed” the brain tumor. As a result, it has been growing. I can’t come off these meds even though we have tried because of the gastroparesis. The pituitary tumor has really caused a lot of problems because it has caused my bones to severely deteriorate and I am now so fragile that the doctors are scared that I am going to get a life-threatening fracture. Despite getting one infusions every year that is supposed to build bone, I have lost so much bone. In the past year, I lost 16% in my hip and 6% in my spine and that is only this past year. I lost so much other years. The doctors said that without the infusion that I would probably have lost more. So… I am still scheduled to have the bone infusion when I get back from California. I hate the infusion because I get so sick from them. But… you gotta do what you gotta do… right? I am also having severe vision difficulties because of the brain tumor as well. It is really causing a lot of problems.
So… Dad and I are heading to California because there really isn’t much other choice. Like I said… I have been to so many other doctors and they haven’t been able to help me. Doctors are even surprised that I am still “alive.” They have said though that I need desperate help because they don’t think that I have much longer to live. They have said that I am really sick. A lot of doctors are hesitant to touch me because of all my medical conditions. I am really complex as I have the severe gastroparesis and brain tumor. I also have the severe underlying neurological disease that makes me really hypersensitive. It affects everything on the sympathetic nervous system, which is basically everything in your body. I also have severe autonomic dysfunction. I am hypersensitive and extremely in agony, as I suffer from pain 24/7. I never get a break and even though I am on so many medications including morphine and methadone and take more medicine that would really kill a horse, it really has little to no effect on me. I am really suffering and I really need help.
My underlying neurological condition is extremely rare and there is currently no known cure. I am undergoing rare, radical, and expensive treatments such as Ketamine comas that are supposed to be my “only chance” in helping me. However, the amount of ketamine that I require is way too great than is FDA approved and therefore, I need to go out of country in order to receive the necessary “help” that I require. In the meantime, I am going to be undergoing a ketamine coma in Florida because even though I am undergoing ketamine comas in New York, the ketamine coma in Florida will be more intensive than the comas I am receiving in New York. However, it is also very expensive and unless I receive donations, I don’t know if I will be able to afford it. However, it is imperative that I receive the coma in Florida because it is the root of the underlying problem, which is essentially the root and cause of the severe gastroparesis that I am going to California for.
Reflex sympathetic dystrophy syndrome (RSDS) is an uncommon condition that usually affects arms or legs. RSDS symptoms include intense localized burning or aching pain, swelling, skin discoloration, and altered temperatures, among others. I have severe hypersensitivity. This means that even the smallest touch or breeze can cause a pain so excruciating that it’s difficult even to comprehend let alone describe it. A simple needle stick is like someone stabbing a knife in me. Even a simple touch of a feather is like someone putting a blowtorch on me. Hypersensitivity is one of the symptoms that make RSD both difficult to treat and difficult to bear. The hypersensitivity also makes it dangerous because it laves me at very high risk for infection. Due to my illness, my skin may begin to appear stretched or shiny. It can also harden and become immensely dry till it cracks and the first few layers die and become flaky dead skin for on the first few layers of the affected limb that cannot be removed. It is also dangerous because RSD can cause sores to appear in any given area of the body and is not restricted to the affected limb or limbs. They can range in their appearance from big round stains (usually a reddish color), to something that looks similar to acne.
RSD can cause other problems in conjunction with my brain tumor. So between the brain tumor and the RSD, I am not in good shape. RSD can cause your vision to blur and lose focus. So, it is really difficult to see. I also suffer from memory problems, as RSD patient tend to lose short-term memory. For example, they easily forget things they have been asked or are supposed to do, conversation they have had, and people they have had conversation with already. Some RSD patients tend to forget the topic of a conversation in the middle of having one.
I have just come back from California and now I am headed back there. I am really nervous. I am supposed to be meeting all the top doctors when I go there. There is a whole team awaiting me when I go there and they are even counting down til I get there. It is so nice to know that they are counting down til I get there because it shows that they care, but it really makes me nervous. We don’t know if they are counting down because I am a case that they rarely see or because it takes so much planning that is going into treating me. Either way though, I never had a doctor that was counting down til I saw them. It was really weird when I was speaking to them and they told me exactly how many days there were til I came down and saw them. It really freaked me out.
My GI system is really bad. It is causing me not to absorb and therefore, I am having malabsorption and I am probably severely malnourished as a result. I have really been really thirsty lately too. No matter how much I drink, I can’t quench my thirst. We think that it is because I am not “absorbing” due to my GI system no functioning right. My nails are really taking a toll too because of this. They are literally falling off because I am so dehydrated. It is horrible. Between the bleeding and vomiting that I am having, I am probably really dehydrated. Then, since I can’t absorb…. It is no wonder why I can’t quench my thirst. I try so hard to drink as much as I can so that I can stay “hydrated,” but it is so hard because the more I drink, the worse I feel. I also suffer from aspirating and the more that I drink, the worse I am aspirating. I have a lot of fluid in my lungs and the more that I drink… the worse it gets. Whenever I breathe, you can literally hear fluid in my lungs. It is horrible. It is also really dangerous because not only am I drowning in my own fluids, but I can get severe life-threatening pneumonia. I can also get an acute airway obstruction, which may rapidly lead to death. I am really in bad shape.
It is really imperative that I be helped with my GI system in California because it is causing so many problems. Not only is it causing the aspirations, but it is shutting down my organs as well. It is causing me to fill up with gas as well, which is putting extreme pressure on my organs and causing them to shut down. The doctors are really impressed with my x-rays and can’t believe how much “gas” is in me. It is really compressing all my organs and even causing my colon to twist. Once my colon completely twists, it really becomes a life-threatening emergency, and therefore… it is imperative that something be done and done quickly because we can’t afford for that to happen. It is so much worse for me too because I am so little. There isn’t much room in me as it is and for me to be so filled up with gas, it isn’t good.
I am really nervous to go to California because I don’t know what to expect. They are talking about having me go for a transplant, and I am really nervous. They are 99.9% sure that I am going to need the small bowel transplant, but they aren’t 100% sure. After this visit, they will know for certain. This transplant is very rare and risky. It runs the highest rate of rejection of all transplants. In fact, only 8 hospitals in the country do this transplant, with Stanford being one of them. It has only been done like about 200 times. I will be undergoing a transplant that is extremely risky because I need to have a donor that will give me all the organs. I will need a new esophagus, stomach, small intestine, and large intestine. It is really risky and important that I get a good match because 80% of your immune cells come from these organs.
I am heading to California to meet with a whole team of doctors. I am seeing an endocrinologist, neurologist, autonomic dysfunction doctor, anesthesiologist (because I am having surgery), Gastroenterologist, transplant team, and of course going for surgery. I am going for surgery on Monday, which is a “test” to see if a transplant is definitely needed. It is a 10-hour surgery. The first 3-4 hours is used to put probes into my intestines. The remaining 6 hours are used to do exercises on them and investigate them. I guess in the end they will know for certain the results and whether or not if a transplant is definitely needed. Even though I will be sleeping during the first part of the surgery, which is when they put the probes in, I will be semi awake during the second part. I am really nervous for the second part because I am going to be semi-awake. The doctor told me to bring an iPod or something to listen to so it will keep me busy. I wish my dad would be allowed into the room during this time, but of course he can’t.
In addition to the surgery, I am also meeting the doctors to try to deal with the pituitary tumor. The last time I was down there, the doctors put me on another injection to add to the injection that I take already for my peristalsis. Gosh… I am like a human pincushion. Anyway… I ended up having a huge reaction to the injection. I got welts all over me and got all swollen. My throat felt like it was closing up and it was difficult to breathe. I was also very itchy. When I called the doctor the doctor told me not to take the injection again. The doctor told me that when I came for the surgery, the doctor would administer the injection again under “watch” and therefore, she would see exactly what happens. At least it would be under a controlled environment and if something should happen… it could be stopped and helped. The doctors wanted to see how I responded to the injection and therefore, I was to wait for the surgery, which was when they will administer the injection.
I am really nervous about the brain tumor too because I might need chemo, radiation, or even surgery on the tumor. Of course I don’t know what the actual game plan is as of now because I didn’t meet with the doctor for the brain tumor yet, but all I know is that they have to get it under control because it is causing a lot of problems in my body. I am really afraid because I really don’t want to undergo chemo or radiation or even surgery. My dad tried to make it better by saying that if I went for chemo and lost my hair, he would shave his hair too. But either way… I really don’t want chemo. With everything that I have already… this is the last thing that I need. I told my parents that if it came down to it… I really don’t know if I would proceed with further treatment or if I would just let nature take its course because when is “enough enough?” I just can’t take it anymore. I just want to live whatever time I have left already. I am tired of suffering. You know?
I am really nervous about going to California because I am in no shape to travel. Traveling takes a lot out of me because I am so weak and fragile, especially traveling to California because it is on the other side of the country. It literally takes an entire day to get there. I hope it doesn’t go as bad as it does last time because the traveling the last time to California was horrendous. We left at 6 AM New York time and didn’t get to California til 8PM California time. We ended up getting on our transfer in Chicago, and we then had to get off the plane and be delayed 5 hours because of mechanical failure. It was horrible. Then when we came home, we were delayed again. It didn’t get much better traveling home because we literally were supposed to leave at 11AM and we didn’t get home til 1 AM the following day. The only bad part this time was that we were delayed the first leg of the trip from California to Chicago, which forced us to miss our connection. By the time we got to Chicago, there was only one flight left to New York. Luckily, we made that flight because otherwise we would have been stuck in Chicago.
My parents are really worried about me. I have been really sick lately, especially since I never recovered from the last trip to California. My bloods are really bad and the doctors think that I should be in the hospital due to my levels. My heart levels are really bad and I can easily have cardiac arrest and an arrhythmia. However, the doctors didn’t want to hospitalize me (even though I really should be hospitalized) because if they did hospitalize me, I wouldn’t make it to California, which is probably the best place for me. The doctors wanted me to get to California because the best doctors are supposed to be there. So, they are just hoping that I make it there. My mom is really afraid that I am not going to come home from California because she is afraid that they are going to hospitalize me there because of everything that is happening with me. My dad is really afraid that I am not going to even get there because of everything that is happening with me. Not only are my bloods really bad that I can literally have a heart attack or something, but I am also bleeding internally. I am extremely weak and I am bleeding internally and we don’t know from where. All we know is that I am bleeding from below. So… we really have a lot going on.
I am really worried about having the transplant as well because I was just told that if I did need the transplant, then it looks like we might be moving to California. I feel really bad about this because I don’t want to uproot my entire family and move them to California. They do so much for me already and I don’t want to ruin their lives and have them move. However, if I have to live by the hospital, they said that I will have no other choice. They said that they will have to give up the house and my dad’s business. I really would hate for that to happen. In the meantime though, the head doctor in California set me up with her mentor at John Hopkins Hospital in case there is an emergency. Therefore, if there is an emergency I would go there because it is easier to get to Hopkins in an emergency than to California. It is easier to be heliported there than to California.
I am really afraid for my dad. I want to get better and I am afraid of hearing bad news in California, but I am more afraid because of my dad. My dad is not only my “dad,” but he is my best friend and my hero. There is nothing that he wouldn’t do for me. It hurts him so much that he can’t do anything for me. He wants to help me so badly and it hurts him so much that no matter what he does, he can’t do it because his hands are tied. He is really counting on California to help me. I am really scared that he is putting all his eggs in this one basket. We have been to so many other places and they haven’t been able to help me in the past. What makes this place any different? My dad is hoping that they can help me because this hospital is supposed to be the TOP hospital and have the top doctors. I really don’t want my dad to be disappointed because I don’t want to see my dad hurt. I really want to get better, not just for me because I want to “live” and become a doctor and such, but I want to get better for my dad. It would mean the world to me if I got better for my dad. I know that if something ever happened to me, my dad would never be able to handle it.
I am fortunate that despite the fact that dad has to work so much to better the family and bring the money into the family so that we can “survive,” he travels to all my appointments with me. He really scares me because he works so very hard. My dad works 7 days a week and he doesn’t rest. He is no youngster and I am so worried that something is going to happen to him. He works from like 3 AM til 7 PM and it isn’t like he sits behind a desk either. He is constantly on his feet and even in other homes, which he works in no a/c and in the very hot weather and everything. There is only so much a body can take and I can see that his body can’t do it all anymore. I really don’t’ know what I would do if something happened to him. I would definitely never forgive myself.
But, he does this all so that he could take me to appointments, which making money for the family as well because not only does he want nothing to happen to me, but if he doesn’t make “money” and have the work go out… we can’t survive and I can’t go for further treatment. However, even despite him working so hard… it is literally impossible without further donations to continue treatment. We have a growing stack of bills because of medication, doctors, procedures, traveling expenses, etc. It is just nonstop. We have made so many “cuts,” but it is not nearly enough. We really need a lot of help. We definitely don’t know how we are going to manage going to California or to Florida to get treatment because those places are definitely not treat. I definitely need to go to California, as that is the only place to get treatment for my GI system and that is the only place where I am going to be getting the transplant. That is the best place for me to be for my digestive system. I definitely need to get to Florida for the ketamine coma because the doctor in Florida is supposed to be the leading researcher in my disease. Plus, that coma is supposed to help me in fighting my disease the most. Even though there is no “cure” for my underlying neurological disease, this is the best chance that I have so far. I really need the ketamine coma and it isn’t even covered by insurance. So… without further help from donations, I honestly don’t know how I am going to afford it because it is easily over $20,000. Just with co-payments (and that is with insurance), we have medical costs of $25,000 annually. Then we have the expenses not covered by insurance such as the medication not covered by insurance because we get it out of the country and such. It’s like the saying goes… “If you have your health… you have everything.”
I have tried so many ways to raise money. However, I have been so unsuccessful. I have tried contacting the media, newspapers, making websites, writing to famous people, but nothing has really worked. It kills me how I tried writing to television shows for help and I have gotten no responses. However, I see other stories on the television and I can’t get attention for my story. I have been so desperate that even though I knew it would be unsuccessful, I still tried and wrote to the President and even the Queen of England. I figured that it couldn’t hurt. My website was successful in the beginning, but it died out quickly.
If you have any suggestions on how to fundraise or raise money, please let me know because it is imperative that I get donations because my life depends on it. I can’t survive or continue treatments without it. You can leave a comment on this page or contact me at Spunkyfal@aol.com. Any feedback or suggestions would be much appreciated.
Well… I gotta start getting ready. One more day and I am off. There is so much to do. I wanna download some movies for my iPad because at least that will keep my dad and me busy on the plane. It really helped the last time. Thank goodness that I purchased the extended battery. I also wanna show my mom how to Face-time because since she can’t be with us in California, I still wanna be able to see her, especially since I am having surgery. My mom never travels with us because someone has to stay behind and watch the business and house. Plus, it is too expensive for all of us to travel. So, it is usually my dad and me who travel to appointments. I miss my mom though so very much when I go. So…. At least with Face-time I will be able to see her. Thank goodness for that, right?
I will be in San Francisco for at least a week. Hopefully it will be successful. I will try to keep in touch. It is going to be so hectic though. So many doctors to see. I told my parents that it is so weird that everyone is counting down to going to California and being excited about going except me, which is the one person who should be excited about going. My dad is even counting down going. He keeps telling me to “hang in there. We are going to be in California soon!” I think he is doing this because he is trying to keep my hopes alive and trying to keep me going since I am so sick and deteriorating. I think he is just hoping that I make it to California. I am sick and just hope that I am going to make it there.
Well… until next time… I guess I will say good-bye. Gotta keep on fighting though because I don’t have the nicknames WAR HORSE and the ENERGIZER BATTERY for nothing, right? They call me WAR HORSE because just like WAR HORSE, I am one who has been through many battles, struggles, or fights. I may lose a battle, but hopefully I won’t lose the overall war. They call me the ENERGIZER BATTERY because just like the ENERGIZER BUNNY, “I keep going and going and going.” Even though it has been really difficult and hard, I haven’t thrown in the towel as of yet. I am still hanging in there despite all the difficulties. I am a fighter and don’t plan on giving up yet.