Just wanted to briefly update you on all that is happening since so much has been occurring. I haven’t been feeling well and therefore, I feel like I haven’t been able to keep you as current as I would have liked, but I am hoping to bring you up-to-date as of now. Sorry about that. I just haven’t been doing well and I haven’t really been well enough to write a whole big update and such. I am still not doing well tonight, but I wanted to gather some strength and update you as much as possible tonight before more things occurred.
Unfortunately I have not been doing too well. I am at the point where I am going downhill really fast. I am trying to keep as positive as possible and trying to keep hope alive that I am going to get ‘better’, but the truth is that I am really rapidly deteriorating and unless something is done fast, I don’t know if I am going to make it much longer. I know the end the holidays are approaching and the end New Year is just around the corner, but the way that I am going… I am afraid that I won’t even make it. I never felt so horrible, and it is honestly really scaring me.
I have always been understanding and hopeful that no matter what, I still had ‘time!’ I was always appreciative on whatever treatment I may have had even though I definitely needed much more treatment that we couldn’t afford. However, due to how costly my treatment is, we cannot afford it by ourselves and therefore, I have not been able to receive the very necessary treatment that I need to save my life because of insufficient funds. Even though I have been receiving treatment, we have had to make drastic cuts because unfortunately the funds are just not there. Despite all my efforts of fundraising and bringing in donations, we are really coming up short for affording the lifesaving treatment that I need. I need very expensive medications, ketamine infusions/comas, surgeries/procedures, and appointments with doctors, etc. Money only goes so far and since we have been paying for my treatments for so long, the money has run out and the bills are just way too high that we just can’t afford them anymore. That is why I have been so desperate and have been pleading and trying to raise as much funds and help as I can. Without ‘help’, there is no way I can receive the very lifesaving treatment that I need.
I never put my parents back against the wall, but I told them for the very first time that something has to be done now or I am going to die. I never said this before, and for me to say this… it meant things has to be bad. I told them that I need treatment now more than ever. I desperately need to get out of the country to get that ketamine coma that can reverse my entire disease. Even though I do get ketamine in the United States every week/every other week, it is not nearly enough to get me ‘cured’ or to reverse the entire disease because the amount that I really need is not FDA approved. The amount of ketamine that could do this is so much that they literally have to ‘kill’ my body. The amount that I will receive of ketamine will be so much. They have to shut down my entire body, as my entire body will depend on machines to keep it alive for quite a while. Hopefully by having this large infusion of ketamine, it will ‘reboot’ my entire body like a computer is rebooted and put this whole entire illness into remission.
However, the cost of this procedure is extremely expensive, as it will cost nearly $100,000. Yet, it is my only chances of really getting well. Yes… it is very scary, but I am more afraid of being in the state that I am in currently. The only places that do this procedure are Mexico and Germany, and it really only has been done 73 times previously. I am really hoping that I will be able to get it done, but of course it all depends on being able to ‘afford’ it. But this really would be my best chance of living.
In the meantime, there are places in the United States where I can get larger doses of ketamine than I am receiving currently. Even though it is not nearly the amount that will put the disease in remission or be the amount that can be given out of the country, it will definitely be a larger amount and a longer amount in duration (amount of days that I am given the ketamine coma/infusion). However, it is definitely more expensive than the ketamine procedures that I am currently going for and I still definitely can’t afford it. They will cost me about $40,000-$50,000. Even though they might not be as high as needed as the ones out of the country, they would definitely benefit me and at least help me in a major way. Yet, like I said before, I will no way be able to get this treatment unless I get help from others and my life is literally hanging in the balance.
In the meantime, I also require procedures and operations that could at least ‘buy’ me time. The disease is spreading and shutting down my entire body and therefore, it is affecting everything including my GI system. As a result, I am unable to eat or drink anymore. Even the few things that I used to be able to get down such as eggs and ice cream are getting to be extremely impossible to swallow. It is even worse when it comes to medications because I rely on the medications to at least get me through the day and I am having so many problems with not only swallowing it, but with absorbing it as well because of the GI problems.
I take more medicine that can kill a horse, as I take over 50 pills daily and they can range from everything from morphine, dilaudid, nucynta, methadone, ketamine, etc. They are so potent and it isn’t like they do any ‘miracles.’ They are just taken in hopes that they will help me get through the day! Without them, I definitely wouldn’t be able to manage because I have tried to cut down on the medications in hope to save money on them because they are extremely costly and I also can’t get all my medications covered by insurance because they are ordered overseas since they are not FDA approved, but every time I try to cut down, it results in only severe withdrawal and exacerbation of my illness. I really need the medications in order to survive. Yet, it is getting harder and harder to take the medications because I can’t swallow. I used to be able to get them down with carbonation, but now even my old ‘tricks’ don’t even work.
With everything occurring in my GI track, I desperately need a GI transplant. I need a very rare and dangerous transplant that not many hospitals in the country perform, as there are only about 6 hospitals that do the transplant and there are very few cases done. I need a radical transplant where I will receive a new stomach, small and large intestine, pancreas and liver. However, this operation and the immunosuppressant drugs that I will need to take following the surgery are extremely expensive and there is no way that I will be able to afford it without help.
Since very few hospitals perform this very radical transplant and we have had problems affording it, I have become even sicker waiting for it. Therefore, the doctors have said that I am basically too sick now to withstand the transplant and therefore, I need to have another emergency procedure performed if I am going to survive. The doctors are claiming that I am at the end of the rope, and I can either hang on or let go. I only weigh in the 60s and they have never seen someone with a weight or BMI as low as mine. I am severely weakening and deteriorating and they said that I desperately need to go to the hospital to have TPN or something to get me stronger immediately because without it, I will die
I am at the point that I am really too weak and my organs are shutting down way too much for me to live much longer. My heart is really suffering and everything that is going to keeping me alive is going to my heart because we all know that once that goes, that is going to be it! However, there is only so much a heart can take and we are hoping that something can be done before that occurs. The doctors don’t want me eating or drinking anymore, as they think it is only making things worse and exacerbating my illness. However, since a body needs to eat and drink to live unless they have another way of getting ‘fed’ such as with TPN, I really have no other choice. The doctors have stated how urgently I need some intervention such as TPN to get stronger or at least some nourishment because my body is literally starving to death and shutting down.
My bloods are worse than ever, as they are dropping like crazy and I am so at risk for an arrhythmia and cardiac arrest. I am also now having an elevated level with my clotting and as a result, I am having an extremely hard time clotting. Things just continue to worsen and get worse. My organs and entire body are just shutting down and since my bowels don’t move, the toxins of all the drugs and everything that are in my body are affecting and creating very dangerous levels for my body because they cannot be eliminated.
I really need to get to a hospital and get TPN so that I can get a source of nourishment and to stabilize my bloods, as well as help to remove some of the toxins. We also know that I have a twist/obstruction in my bowel that needs to be taken care of. Fortunately my intestines are so dilated that I have been able to live with that obstruction/twist this long. Yet, it isn’t as simple as just going to any hospital. Very few hospitals are able to deal with my complicated illness and the ones that can are not located in the New York area.
I desperately need to get to the Mayo Clinic, Stanford hospital or even John Hopkins. Even though the Mayo Clinic is really the preferred hospital, the other hospitals can do, but the top two hospitals that I really should be going to and that the doctors are best able to handle me at are the Mayo Clinic and Stanford (with the Mayo being priority). However, even though they both take my insurance to some point, the cost of not only the traveling expenses to these hospitals will be enormous, but so will the actual cost of the hospitals. We aren’t completely covered at the Mayo Clinic and even if we were, the amount that we have to pay towards copayments and deductibles is completely unbelievable. Just in a regular hospital, it costs us $150 per day as an inpatient, $100 per procedure/x-ray/blood test, $50 for emergency room visit, etc. So as you can see it will clearly add up because I won’t be in the hospital for just one day and I won’t be just having one procedure or one x-ray or blood test. The amount I will receive will be far too numerous than I can afford. We just don’t honestly know what to do.
It surely stinks because we pay so much for health insurance and when it comes down to it, it really doesn’t help that much. Even the new “Obamacare” won’t even help me. It is like no matter how much they say that insurance companies are ‘there’ for the patient and there to help them out, they are really out for themselves and in it to make money. I was already told to apply for financial aid for Mayo Clinic because we have previous bills from previous visits. However, they told me that if I need surgeries and procedures there, I should just wait until after I have them done and apply then so that I am covered for everything. I told them that I can’t do that because if I am denied the financial ‘help,’ there is no way that I can be stuck with any more bills, and if I am denied the ‘help’ then I will then be also stuck with this new surgery bill that could have been avoided. They just don’t understand. I just wish there was some way of paying for all this. I just wish there was an answer to all this. I keep wondering what would be if money didn’t exist.
To make matters worse, my osteonecrosis is also really worsening and my teeth are really getting worse too. I need severe root canals because the osteonecrosis and my illness are causing the teeth to die and the roots of the teeth are all exposed. The doctors have tried numerous procedures, but the truth is that they are limited because I can’t tolerate much and because of my complicated nature. I can’t even be given novocaine really because it doesn’t do much for me. Even with 4 injections, it barely numbs me and will never give them a significant window for the doctors to do what is needed. I am in tremendous pain not only with my body in general, but my mouth is killing me as well. My jaw is giving me excruciating pain, as it is protruding into my mouth because of the osteonecrosis, and my teeth are constantly giving me electrocutory pain as it constantly feels like I am getting ‘brain freeze’ every time something touches the tooth whether it is when I eat or even drink anything whatsoever. I am just in so much pain that I am literally climbing the walls.
Due to all the osteonecrosis and the nerves being exposed and the teeth dying and such, I desperately need surgery done. However, the specialists that perform these kinds of operations are of course not on my insurance plan and to have it then done in the hospital, it will even more expensive. Yet, I desperately need it done as soon as possible. Thankfully, my current doctor is amazingly nice and although he can’t do the surgery himself because he isn’t a specialist, he has been going way beyond the call of duty and helping me out in any way possible. Not only has he been talking to other doctors in the hospital about me so that the entire hospital is basically familiar and knowledgeable about my case, but he has sought out and tried to find the best surgeon and doctors for me to do this surgery on me because this type of procedure compiled with my difficult and complicated illness is no walk in the park. I am also so fortunate because he has also went beyond the call of duty and tried to help me out as much as he can financially, as he knows how limited my funds are. He has done whatever he can do to help, which includes taking the necessary x-rays and such so that I will not have the other doctors charge me. He is simply one of the most understanding and best doctors in the world.
That being said, I am scheduled to meet with the surgeon on Monday to finalize everything and to know when the surgery will be done, as well as all the specifics. I really can’t wait because I am in so much pain. I will keep you all posted as to what happens.
So that appears to be all. Nothing really else seems to be happening. I am just trying to hang in there as much as I can in the meantime. I am just getting so weak though. I am collapsing all over the place and I go to ‘bed’ earlier than ever because I just can’t move. Even though I can’t really ‘sleep’ per se because of the pain, I am literally just passing out because of how weak I am. I keep breaking into night sweats and I can’t regulate my body temperature. I keep going from hot to cold in a matter of seconds. My autonomic dysfunction (and not just the part that regulates temperature) is so out of control. I keep freaking my parents out because I can literally collapse into bed and not be stirred for like 24 hours. I keep having out of body experiences and I keep going into these really deep sleeps. Something just doesn’t feel right. I am scared because I know something is definitely happening.
Sometimes I wonder if I am going to make it through the night or even the day. My heart has been feeling so weak and shaky. It feels like someone is literally pulling it down from being hung on a shelf. I have been so weak lately that I have basically been stuck laying on the couch and bed. Even getting up to just go to the bathroom and to get something is too much to bear because of how weak I feel and how much pain I am in. I still perhaps get a few hours (like 2-3 good hours in the morning… if I am lucky), where I can still do more than just ‘lay’ around, but I quickly get exhausted and weaken. But no matter what I do… no matter what time of day… the pain just never leaves and it is getting worse than ever.
I have been trying anything to keep myself busy and to try to avoid feeling the pain and agony that I am in… even though that is basically an impossible feat. I am basically maxing out on all my medications and even on Tylenol (even though that is like a baby medication for me) and sometimes I just wish I can just take more medication just to ‘knock’ me out because of all the pain that I am in. Sometimes I just wish I can just close my eyes forever. I love going for ketamine comas/infusions because if nothing else… at least I escape the pain for a bit. But like always… good things always come to an end.
It is at the point that I can’t do anything without crying because of how much pain I am in. I can’t sit on the couch, I can’t drive in a car, I can’t go outside, etc. I can’t even wear pants because the slightest touch of the material is sending me up the walls and the autonomic dysfunction into severe problems. I am just suffering so much. Since I really can’t do anything ‘out’ of the house and I am limited… thank goodness for the iPhone. I have learned to play some really cool games on the phone to keep me busy. It surely gets addicted. In fact, I just got my dad into the IPhone from a flip phone about a month or so ago and he can’t put it down. Even he said that these things should come with ‘warnings’ like “these things are addicting… BEWARE!” I can’t believe though how far he has come in learning how to use it. He really has joined the technology age finally and is catching up with the world.
If you know any cool apps, please let me know because I only know a few. I am game for anything… whether it is a photo app, game, etc. I have found some really cool things to do on the phone with pictures such as make really cool collages and such since I love taking pictures, as well as some really cool games. The only thing that really stinks though is that even though the new iOS 7 version is terrific and such, it really is draining my battery like crazy. I don’t know why all of APPLE’s upgrades in their desktops for the laptops and phones end up killing batteries, but they do. It really stinks because the batteries on the iPhones didn’t last very long before, but at least I was able to get through an entire day without charging it. Now…I can’t even make it through a day without charging it more than once. The battery really goes in this new version and especially if you are in a program or text messaging. I see it go down like 1% every minute and when you live on it and depend on it because it is your only lifeline since doctors always call it… you can’t afford for the battery to go so fast. That is why I am thinking about getting an extended battery case charger for it. I really didn’t want to do it because I love my gold sparkly case and the extended battery chargers are uglier, bulkier, and heavier. But… I don’t know what other choice I am going to have. I wonder if APPLE is going to fix this problem or even if there is a way of fixing it.
In the meantime, I have a defibrillator right by my bed just in case. Dad is really nervous that something is going to happen to me and a good friend gave us a defibrillator because the cost of one is just too enormous for us to come up with. I told dad that if I ever needed it, it would only lead to be a disaster because with all the commotion, my dad will not know what to do and be flustered. So while he is trying to figure out what to do even though the machine literally tells you what to do, my mom will be touching me and when my dad goes to put the paddles on me, he will end up electrocuting my mom too because she will be touching me. I just hope that we never have to really find out about that defibrillator and what will happen if dad needed to use it.
I can tell things are worse than ever because Halloween was always one of my favorite holidays. I used to love decorating the house and such and couldn’t wait for to do it. I used to deck it out with corn stalks, decorations, pumpkins, etc. I really went overboard, but I must say that I really had one of the nicest houses when it was all decorated. It was something that my brother and I did together. We would even get this really big pumpkin that was close to 100 pounds and put it right on our lawn that we would keep until thanksgiving. I also looked and searched for the perfect pumpkins that I could carve and make the perfect Jack O’ Lanterns, as I couldn’t wait to carve open the pumpkin and would love making different faces on each pumpkin. Even when the actual holiday came, I also loved to dress up and give out all the candy to all the trick-or-treaters.
However, all that has now changed. Gone are the days where I wanted to decorate the house. I couldn’t care what the house looked like or if the house was decorated for Halloween at all. When you pass my house now, people would never think this was the same house. Gone are the days when I wanted to carve the pumpkins. I don’t even care to get that big pumpkin or to even get the perfect carving pumpkin at all. The only reason I will cut open the pumpkins now are to get the seeds out because there is nothing like eating pumpkin seeds. Nothing tastes the same as home cooked pumpkin seeds and that only happens once a year… so I don’t want to give that up. Plus… my entire family looks forward to eating those seeds and they actually fight over them… so I don’t want to disappoint them either by not making it for them. Gone are also the days where I would dress up and couldn’t wait for the trick-or-treaters to come. In fact, I would be much happier to tell you the truth if the doorbell didn’t ring at all because this way I wouldn’t be disturbed. Just having to get up and down and hearing the bell is torment and causes me in more severe pain. This is definitely not the same me that I once was. I miss the old me.
I also miss the old me that was able to eat anything and everything. I have such trouble eating anything and it is so unfortunate because this is the time of year when ‘pumpkin’ stuff is made and I love anything with pumpkin. I love pumpkin pies, pumpkin donuts, etc. Nothing beats a good pumpkin muffin from Dunkin Donuts… that is my absolute favorite. To think… if I get the tubes, I will never be able to enjoy these items again because I won’t be able to eat or drink. That is why I desperately need to get better and have the transplant. I desperately want to be able to eat and drink so that I can enjoy these yummy and delicious foods.
Well… gonna get going. Just wanted to give you a heads up on what is occurring. I received the nicest gift today. I am so thankful for all the help and support everyone has given me. I only wish that I could get the media’s attention so that I can possibly get more donations because I desperately need these treatments because my life literally is hanging in the balance. I also want to personally thank two people that I have met and who have become my friends and great supporters because of the wonderful lovely gifts that I recently received. I truly loved the basket that one of them sent me, and I was really touched and moved by the picture that was taken of her nephew’s football team cheering me on as well as dedicating their win (and every touchdown) to me. I never expected any of this too occur. You can’t imagine the smile that was put on my face especially when I have been going through all this pain and troubles lately. I will cherish these gifts forever and ever. I am so lucky to have people that care about me.
In the meantime, I also had my hair done and they tried to transform me. I wanted to try to change my entire appearance and thought maybe a ‘new’ me would bring about a whole different person. So I was fortunate to have wonderful people work on my hair and they really made me feel pretty… even though it was only for the day. All good things I guess have to come to an end. But at least I was able to feel ‘pretty’ and ‘normal’ for awhile.
Well… going to get going. Until next time!