Well… another day has passed in California and of course more has happened. So… I am writing another update to let you know all that is happening. There has been so much happening today and it really has been a bad day. I do wanna talk… don’t get me wrong, but so much has been happening today and didn’t get such a great report today. I am also not feeling well at all today either. I am annoyed with how I am feeling, annoyed with what is going on, annoyed with life, etc. I am just really tired with all that has been happening. I think it is all starting to settle in what is actually going on. Before… It didn’t feel “real!” I thought that it wouldn’t settle in til I got back to NY. However, I think all that is happening… it is starting to take hold now. So please… like I said… bear with me. ok? I wasn’t even going to write tonight, but I decided to do so because I thought it would might make me feel better, it might sort some stuff out, and plus I promised I would keep you all updated on all that has been happening. So… had to keep my promise!!
So much has happened today… it really has been unbelievable. When has something not happened? I had the MRI today, which was a real disaster. I thought I wasn’t going to make it through it. I had gotten the “ok” from the doctor to proceed with it even though they weren’t 100% sure that it wasn’t metal. They were pretty sure it wasn’t, but they said that if it “heated up to let them know about it.” I made my dad come into the MRI with me because I was so nervous and I didn’t want to be alone. Since I am on crutches and I can’t bring metal into the room, my dad was going to carry me into the room to put me into the machine.
What a “hero” my dad is. He has always and always will be my “hero.” I don’t know what I would do without him. He always tries to help me out in whatever way possible. He kept asking me “are you sure you want me in the room?” and of course I said “yes.” They made him sign a release of course and they made him “strip” down of course because he couldn’t wear or have anything metal on him including money, jewelry, belt, etc. I thought he was going to kill me for what I was putting him through. Then… with all the banging that was going on in the machine… I thought that he really was going to kill me because it was so incredibly noisy despite the fact that they gave him ear plugs to wear. My dad still blames me for the fact that we went to a concert when I was little to see NEW KIDS ON THE BLOCK and he insists that his hearing has never been the same since. He insists that he has gone “deaf” since and blames me for it. But… he has really been good about it. I am sure though when we say that he can’t hear something later on though… he will say it is “my fault” because I took him into the MRI machine.
Anyway…. I had a really bad time with that. I am really hypersensitive… due to my wonderful Autonomic Dysfunction. I also have something in my back, which they don’t know what it is. Despite the x-rays, they weren’t 100% sure it wasn’t metal but with my hypersensitivity being so much… I literally feel EVERYTHING because I am so sensitive. So… I was ok on the quicker scans, but when they did the longer scans, I really started to heat up. It triggered whatever was in my spine (I have also vascular clips in my spine that in a normal person shouldn’t be a problem but in me… it could cause problems because of my extreme hypersensitivity. Anything… even the most minute thing… it can cause a problem. It is literally UNBELIEVABLE.
Anyway… when they were doing the longer scans and also the scans that were kinda with greater intensity, I kinda heated up because it triggered off some effect on the clips and/or from the piece in my spine that they left in. It spread from my spine all the way up. They had given me a ball to hold onto and if I felt anything, they told me to squeeze it and they would “pull” me out immediately. I took it as long as I could, but I just couldn’t last anymore. I thought it was going to “stop,” but with the longer scans, it just didn’t stop. There was only so much I could take and with my autonomic dysfunction, once you trigger it off… there is really honestly no way of shutting it off. So… when they triggered it off, it just got worse and worse. I finally couldn’t take it any longer and when I squeezed the ball, they told me that I had like 1 minute left of this one scan and asked if I could last for another 60 seconds. I knew how important these scans were and how much I came along already and therefore, I was like “whatever.” I tried to last the remaining 60 seconds, which felt like an eternity. They pulled me out and I just couldn’t cool down. I had to literally pull off the “catcher’s mask” that they put on you and pull off all the padding/towels that they put around my head so that my head wouldn’t move in the MRI machine in order to cool myself down. I was really having a hard time breathing too because once you start off the autonomic dysfunction, it makes it really difficult to breathe too.
Finally though, after I pulled off everything… I cooled down and broke into the chills. Thank goodness. I went back into the machine to finish up because I knew how important it was to do, but I wouldn’t let them put all those towels and padding around my head. They told me that I needed to “keep my head completely still” and I told them that I would. Anything was better than having all that padding because I didn’t want to heat up all over again! U know? My dad was in the room with me too because he went into the MRI with me. He got so nervous with everything happening, but unfortunately he couldn’t do anything to help me.
I did get some news though back from the brain surgeon and the MRI. I found out that it is laying on some of the nerves that really cause a lot of problems. The doctor doesn’t know if it can be operated on though. I am speaking more to him tomorrow though. In the meantime, he is having me see a neuro-opthamalogist to see if he could possibly do something. I will also be speaking more to the brain surgeon tomorrow.
I saw the Gastric Pacemaker surgeon today. Everything that I was worried about… I kinda didn’t have to even be bothered about. I was so very worried about what my dad was going to say and how he was going to “make” me go through with it despite the fact that it hasn’t been proven to work…. all because my dad wants me to get better so badly. The only reason that we were really going through with the gastric pacemaker was because the doctors said that since I am so “bad” and out of really all options and such… they said to try it because even though it hasn’t really “worked” and they didn’t think that it would “work” in my case, they said it was still an option and therefore if I wanted, I could still go through with it so I could “try” it. After all… anything is possible. Right?
However… guess what? When the doctor walked into the room, the first thing he said was “I don’t know why you are even talking to me about this. There is no way in the world that this pacemaker is going to work. Your GI system is totally ‘dead.’ There is no viable part really and there makes no sense to even try it.” So… all that thinking about it really didn’t matter because the doctor wasn’t going to do it after all. However, it wasn’t a worthless appointment because this doctor was also going to be the doctor who would be putting in the tubes if and when it did happen when I came back in 3 weeks. So… I got to talk to him and discuss that with him as well.
When I come back in 3 weeks, the doctor wants to put me in the hospital and put a tube in me to see if possibly they can “buy” time. They want to see if they can get any type of nourishment into me despite the fact that my entire GI system is completely dead. Therefore, they will have me admitted into the hospital and they will put a tube in me.
The tube will go into my nose, down my esophagus and through my stomach and into my intestines. It will not actually go “into” my stomach, but it will go through my stomach so that it “bypasses” it. They want to put the tube in so that it reaches so low into the intestines that possibly even though all the intestine is “dead”… they are hoping that if they put the tube low enough into the intestine and bypass the stomach and most of the intestine that they might find a little viable part that could possibly “buy” me time. However, they don’t think it is likely, but at this point… there is really no other choice and we have to do something because we are literally running out of time.
I am really going to die and die soon. If I was a male, they said that I would be dead already because at the level that I am at, with a BMI that I am, there is no way that a male could live. Males can no way live below a 13. Females on the other hand are able to live a little longer because they can live with a little less fat. So… they can live until they reach 12. However, once they reach 12, it is impossible to live past that. I am so borderline with that number that the doctors are really fearful for my life. They said that I don’t have long to live.
So… they are hoping that these tubes would “buy” them time. However, they are unsure if they would work. It could really cause a lot of problems as well and that is why they are trialing it out like this instead of doing surgery and implanting them immediately. They can very easily trigger off my disease and make it worse, trigger off the autonomic dysfunction, make a “bag” there and start a collection because the stuff can’t pass through, etc. It is really bad with what I am going through, but we have to try something. So… they are trying this out. If I am able to tolerate this and it does somewhat work… I won’t be able to eat ever again. They will surgically implant the tubes so that they come out of my abdomen and therefore, I won’t ever happen to eat or drink again. It won’t be so great because eating and feeling “Full” isn’t just about receiving food. You feel “full” because you taste the food and it goes into your stomach. However, since I will never taste the food or have food in my stomach, I will never feel “full” again. I will always be hungry and therefore, my stomach will always be rumbling, which will be really uncomfortable. U know? Plus… I don’t know what it would be like to go out and watch people eat all the time while I just sit there. You know? They told me that there are ways to avoid smelling the food so that I don’t get per se “hungry” but it still isn’t the same. U know? However, this is my only chance to “buy” time.
What stinks though is that I don’t know what is happening with the transplant. I desperately need the transplant, as that is the ONLY thing that will save my life. Despite how radical and how risky it really is… that is the only thing that will SAVE my life. All the doctors even say that this is the one thing that I really need. However, I have a big problem because I don’t know if I will be accepted into the transplant program. Even though I need the transplant desperately in order to save my life, I don’t know if they are going to give it to me. Due to my underlying neurological disease, which is extremely painful, I am on a lot of drugs, which can eliminate me from the transplant.
This really stinks because I desperately need this transplant to live and because of my other condition… I can die because I need to take other meds to save my life from that condition. I kinda can’t blame them in a way because they don’t want to give me organs that could be given to someone else when I might “ruin” them again. But still… I don’t want to die either. U know? I am on all this medicine that I can’t do without for my underlying neurological disease especially since my underlying neurological disease is known as being one of the most painful diseases that you can possibly have. Doctors have said that “If Hell is a Medical Condition, it would be known as my disease.” Experts liken the pain response to that of “an engine revving out of control.” On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation! So… I don’t know what is going to happen because medicine that is best for my neurological disease is worst for my GI system.
I am so very scared that I won’t get the transplant because without the transplant, I am surely going to die. I desperately need it despite how risky it is. I asked the doctor what would happen if I failed the tubes that they put in me when I go into the hospital in 3 weeks and then they don’t give me the transplant either. The doctor told me that “I will end up remaining the way that I am.” So I said to him, “So you are saying that I am going to die?” The doctor didn’t know what to say except “Let’s not think that way and hope that the transplant team doesn’t turn you away and hope that the tubes work so that they buy you time.”
I am so very scared because nothing in the past has worked and the doctors know deep down too that the entire GI system is dead, as there is no viable part. However, they are doing it in “hope” that I will be able to live and buy some more time. The doctors I think know deep down too that I will be rejected from the transplant team too, but they are still continuing to send me through the process.
I will know for sure what will be happening on Thursday with the transplant. I guess Thursday will be the BIG DAY!! It will determine whether I will basically live or die. I will be seeing the whole entire transplant team and they will be making the decision as to whether or not I will be a transplant candidate. I just pray and hope that I will be because this is my only chance of living. I am so close to death that if they don’t accept me, I am surely going to die. I am so close to that magical 12 number that I don’t have long to go. I know that if I don’t get the transplant that i won’t be long before I will die because of how close I am. The doctors know this too and so does my dad. I am so very scared. It isn’t fair that they are just going to let me die because if they give me organs it might happen again. Even if it does happen again, at least I have more time to live. U know? You never know during that time what can come out in medical technology. Maybe they could find a cure to my underlying neurological condition during that time and they would be able to stop those meds. You never know… anything is possible. So… I at least want a chance to live. You know? I just hope that I get that chance, but I won’t know if I will be granted that chance until Thursday morning.
When I was at the hospital today, we saw a helicopter come and land on the hospital roof. It was a helicopter delivering organs for another person for a transplant. I was like “I can’t wait for that helicopter to be my helicopter with organs for me.” I thought maybe that was a sign that things will be ok and that things will work out, but in my life… things never work out. I am trying to be positive, but it is really hard. I am really scared.
O guess what? When I went to the pacemaker doctor, I told him my fears about the going and getting the tubes. I told him that I was scared that I was going to get the tube and then it was going to start off the autonomic dysfunction or cause some other problem and I wouldn’t be able to tolerate it. I am so used to the doctors in New York and how you have to wait forever for them to call you back or if you have a problem in the hospital, they kinda make you “suffer” and make you stay like that for awhile because first of all it takes them forever to get to you and second of all… they only do what they want to do. They barely every listen to the patient because they think that they “know” best and know it all. U know?
So you know what he said? He said that “this is why you are here at Stanford and this is why they call it Stanford Hospital. They don’t call it Stanford for no reason.” He told me “What other hospital has doctors meet with you when they don’t usually see patients (this doctor came out of surgery just to see me)?” He also explained to me how thorough he went through me records, as he spoke to my entire “team” of doctors before he came into the room to speak with me because he didn’t want to come into the room and not know what to say. He said to me, “What other place does that?” The doctor assured me that if I ever needed something, they would come and talk to me immediately and how they are always reachable.
I must say that Stanford doctors are definitely one of a kind. They really bend over backwards for you. The doctors are really amazing and there are no other doctors like them. I really love the doctors here and feel extremely comfortable with them. I wouldn’t want any other doctors except them. The only thing that stinks is that they are located across the country and they are such a hardship to get to. You know what? Even their office is open during hours unheard of. They open at 7 AM everyday and don’t close til 7 PM. I never heard of doctors starting so early or closing so late every day just so they can help patients and get back to them. They really are amazing.
People are wondering why they don’t do the “tube operation” now. First of all, you can’t do everything on the drop of a hat. Everything takes time. There is planning and waiting in no matter what you do. After all, you aren’t the ONLY sick person in the world. In addition, my doctor wants to be the doctor in “charge” and such when I go into the hospital and my doctor is only on the inpatient service for a week every 3 weeks. So… I have to wait for him to be on the “inpatient service” in order to be hospitalized and have this done. I wouldn’t want any other doctor also to do it because my doctor is familiar with my case and is supposed to be the BEST. Second of all, even though it will cost additional money to travel back and forth to California, we can’t stay here forever. We do have to come home because my dad has a business. We don’t have enough money that will enable us to stay here longer than our planned trip’s length, as we are scheduled to come home this weekend. My dad has to go back to work because by him not working, it is really taking a HUGE toll on our entire family. By my dad not working, no income is being made and bills are not being paid either. Therefore, since we are having financial problems as it is… we really can’t afford to have more. We can’t afford the treatments that I am having as it is… we really have to be careful and save enough money so that we can have more treatments… even if it means waiting and risking my life. After all… there isn’t a money tree in the backyard giving us an unlimited supply of money. If my dad doesn’t work, then his customers go someplace else and my dad’s business will crumble. It will only then hurt my family further because we will not have money at all… money to pay our bills… or even that little money to pay for the little treatment that it can do so now. So… my dad really has to go back to work so that he can catch up on his work and so that we can make some more money so that we can come back and so that I can receive more treatment. Even though this money is not nearly enough money that we need… it is better than nothing. After all… no one is going to do anything for “free” and I can’t stay in California and have treatment if there is no money.
So… we have no choice but to return home. That is also why it is so urgent and so imperative that I raise some funds and get help. I desperately need help from others to help me raise money because we can no longer afford treatment and travel to California, which can potentially save my life. We are literally scraping the bottom of the barrel already. So despite everyone thinking that it would be cheaper and easier if we stayed in California and had everything done now, it is literally impossible.
Tomorrow is another doctor appointment. I have the ketamine doctor. They are trying to set me up with doctors who manage ketamine and such here so that they can better manage me. Plus… no matter what they do, it is really important to get ketamine because that is one drug that could really stop my disease from spreading. In a high enough dose, it has been proven to put the neurological disease (at the very least… it could very well also put the GI problem too) in remission.
However, the amount of ketamine that I require is not FDA approved, as I am really sick and it is way too much. The only hope for that is to go out of the country to Santo Domingo and get put into a really high intensive ketamine coma there. It is really risky and extremely radical. It is also extremely expensive too, as it will cost nearly $100,000. It is something I definitely need, but I also have to wait for the approval from the IRB board. They were doing it in Germany and Mexico, but they had to stop it due to complications and deaths. My doctor has been working on getting the approval to send patients to Santo Domingo, as he is trying to set up his “Study” there. He is almost done, but he is still waiting for the “approval.” So… we need to wait for that in order for anything to happen. Then… we also have the financial issue too.
In the meantime, I have been undergoing ketamine comas in New York. It is not nearly as intensive and really doesn’t do that much. It does get me out of pain for the day though and when I am suffering 24/7 and never get a moments rest… I will take any “break” I can get. The pain is relentless. It is so much suffering. You can’t imagine how much it hurts. I don’t wish this on my worst enemy. However, the coma is also hopefully stopping the disease from spreading to a point since I am getting some sought of ketamine dose. I am also supposed to be going to Florida to get a even higher ketamine dose, even though it isn’t as high as the dose I will be receiving out of the country. It is higher than the one I get in New York though. So… it might help a bit more. I desperately need this ketamine because it is causing my entire body to go haywire and literally killing me because it is killing and affecting everything that is on the nervous system… which is essentially everything. Yet, even the coma in Florida is expensive and not covered by insurance. It will easily cost me at least $20,000 and that doesn’t include the boosters that will be needed afterwards.
So… at least when I go to these doctors, they will be able to take care of me as well. Thursday like I said before though is the day I meet with the transplant team. Please say a prayer, cross your fingers, do whatever… I just hope that I won’t be turned away because this is my only hope and I don’t want to die. I am so very scared. I will also have an appointment with the GI doctor afterwards. I am so scared to find out the end results… but it is something I need to know. Only one more day til I find out my life sentence… whether I live or whether I die. I am so scared.
My dad hasn’t been handling it very well. Even though he has been trying not to “show” it… he really is showing it. He is really jumpy and agitated. I can’t blame him because he doesn’t want anything happening to me. I am so scared not only for me because I don’t want to die and because I am too young to die, but I am so afraid for my dad too because I know that if something happens to me, my dad would never recover. My dad would literally do anything and everything to make me better. He keeps saying how he would “take away this disease and have it himself.” However, I tell him that if it was him… he wouldn’t be able to handle it. I see the pain in his eyes and I see how much he wants me to get well. I know it must kill him to know that whatever he does… his hands are kinda tied. I know that it must kill him to know that he might be forced to “bury” me before he goes. After all, a parent is supposed to die before their kids… Not the other way around.
My dad even has it planned that he is going to “freeze” me. He really doesn’t want anything to happen to me and it is affecting him badly. He tries not to show it and tries to make me laugh and smile despite all that is happening still. My dad can be really annoying because he is constantly “bothering” me, but I know he is just “playing around” and trying to make me laugh and smile. My dad is the best. He is not only my dad, but my BEST friend. He makes the sun come out and things look bright even on the most gloomiest day. I don’t know what I would do without him. That is why I tell him that I am basically doing this for him.
Even though I want to live… don’t get me wrong… I am tired. I am tired of suffering, I am tired of being in pain, etc. I just honestly don’t know how much longer I can continue on. However, I am continuing to push because I don’t want to leave my dad. He is way too important to me and I know how much I mean to him. I know that if something happens to me… I know he would never take care of himself. I really don’t want anything to happen to my family… especially my dad… and that is partially why I am scared about the money issue too. I know how badly we can’t afford this. Even though we have made “cuts” in everything, even my treatments, we can not afford my treatment much longer.
The cost of the doctors, medications, procedures/treatments, traveling expenses, etc. are way too great. Even if the insurance does pay for the stuff, which they don’t pay for all the stuff, we still have copayments and deductibles that add up. We easily pay over $25,000 a year just in that, which doesn’t include all the medications, doctors, treatments, etc. that are not covered at all by the insurance companies, which are a lot too because I do take quite a lot of meds that are gotten out of the country as well as some of my treatments being considered “experimental.” I also see top specialists that don’t always take my insurance, but it is important to see them because there are really no other doctors that can help me. I have been to countless doctors before, but I am way too complicated and such. I have to travel all over the place such as to California and to Florida to see top specialists because not all doctors know about my condition. All this all costs money… money that I don’t have.
I don’t know what we are going to do because the “well” has run dry and we basically don’t have any money to continue me receiving treatment. Without treatment and traveling to California and Florida so that I can receive the necessary treatment, I am surely going to die. I desperately need help from other people because otherwise I am definitely going to die.
It just stinks how my life rests in the hands of other people. It would kill me if my parents lost the house or the business because of me. They have done so much for me and given up their lives enough for me. They have paid out all that they can afford and are heavily in debt. We are so much in debt that getting a loan is basically impossible.
Therefore, it is imperative that I get help from other people. I just don’t know what it is going to take or how to go about doing it. I wish I knew the magic secret because despite all the times I have tried to get this “help,” it never works out. If anything, it is good for a day, but it quickly dies out. I really need media attention such as on the news on TV or something. I see other people get their stories on TV and such, but I can’t get mine addressed. I just don’t know how all these other people raise so much funds to allow them to survive when they need to. I have tried countless ways to get help such as make websites, write to the media, write to famous people, have flyers, etc. However, nothing has really come about.
It has gotten to the point though that I am really weak and I really need someone to “take over” for me. I really have done all that I can do and really need to hand over the “reins” to someone else because I am too weak and too sick to continue “fighting” to get attention to my cause. I desperately need this attention and desperately need this money…. yet I can’t find the strength anymore to “fight” for it. If anyone can help me… I would really appreciate it. If you can possibly do anything, I would really appreciate it.
I am really thankful to the hotel staff that is here. They really have been wonderful. With everything that has been going on, they have really made a big difference. It really is great how they have made my dad and me feel so “welcome” here. We have stayed here in the past a lot and they all know us. So… it is so nice that wherever we go, ether it is just walking downstairs, going for breakfast, going to get the car, etc. people are talking to us. They are always asking us “how we are doing,” “how things went,” or even saying that they are “praying” for us. It really makes a world of difference to know that they care and to have them express their concern, especially after the types of days we have at the hospital. It really makes having those “bad” days turnaround a bit.
One good thing about where the hospital is located is that the weather is PERFECT. I don’t get to go outside a lot because of my illness and how hypersensitive I am. The slightest temperature difference, wind, humidity, etc. really HURTS me. Even the sunshine has the potential of “burning” me because I am so hypersensitive. This disease that I have is just horrible. Everything that people take for granted… I can’t do. I can’t even sleep with a blanket or take a shower because of how hypersensitive I am. Anyway… where the hospital is, I finally get to stay outside because the weather is PERFECT for my illness. The temperature is at a perfect degree that I can withstand, there is no wind, and there is no humidity. It really is gorgeous. Therefore, I love to spend some time sitting outside with my dad, whether it is after my appointments or in between appointments. It really is something too because where the hotel is located, which is San Francisco, it is totally different weather than in Palo Alto, which is where the hospital is located. So… not only do they have the BEST doctors, but they have the best weather too. I wonder if it ever rains because it hasn’t rained yet. Plus, in order to get from each wing in the hospital, you literally have to walk outside even though there are overhangs and such. It really is beautiful at the hospital. No wonder they let the patients out during the day. It really makes a difference and makes you feel so much better.
Well… going to get going. It has been a long day and really not feeling well. Thanks again for all your encouragement and support. Please say a prayer that I will be able to get the transplant.