Guess it is that time to update since I haven’t written in awhile and more news. Definitely have a lot to say, but of course… not a lot of energy to do so. Hasn’t been a good week, and that’s why you haven’t heard from me. It is getting more and more difficult to write these updates because it takes so much energy from me to do this… energy that I don’t have anymore. However, I really still wanna keep doing this as much as possible because not only does it give me the ability to let others know exactly what I am going through, but it gives me a channel to be able to express how I am feeling. I definitely need that because so much is happening and I can’t keep it all bottled up. Plus… I really want my story to be known and let others know exactly what I am going through.
Well… as you already know… I am rapidly deteriorating. You don’t have to be a rocket scientist to know that. Each day is getting harder to hang in there and harder to make it through… but I am still trying my best to get through it. It is just getting harder. I really need to get HELP ASAP because I am running out of time. However, it is a shame that there is really nothing that can be done in my local area and it is a shame that my life rests in the hands of others because my family and I can no longer afford my treatment.
My family and I have been paying for my treatment for years and as a result, the money has officially ran out. As a result, there really isn’t any more money to continue treatment. I am really fearful of what that means because despite all the “cuts” we have made in treatments to minimize costs, it isn’t enough. We are really having trouble continuing treatment and therefore, my life is even more at stake than ever because I cannot receive the necessary treatment that I require. It is such a shame how everything rests on the “money” issue. I sometimes wonder what would happen if the “dollar” didn’t exist. What would happen if money didn’t exist in the world? I sometimes think it is so unfair that money determines whether I will live or die because I can’t afford the treatment that is necessary to keep me alive.
My disease is just so expensive, especially since my disease entails traveling to other states to receive treatment. We have exhausted all our options in New York and therefore, we are forced to seek the advice of top specialists in other areas. As a result, my parents have to take me to the other side of the country to receive treatment, which entails taking time away from work. This only further contributes to the financial burden because without my parents being able to work, the business cannot function and work since they do “own” the business and have to be there and be available in order for it to work. By them not being there to “run” the business, the business isn’t really able to function like it is and the “work” isn’t really going out. As a result, money isn’t really being made as it is and my family isn’t making an income. With no money being made in the business and my family not being able to or work because they are busy taking me for treatment, we have no money being made to pay the necessary bills that are needed to be paid for the house such as the medical bills, mortgage, etc. These bills quickly add up and they need to be paid.
I know that I am very sick and I don’t want anything to happen to my family because of me. I don’t want my family to lose the business or the house because of the financial burden of my disease or anything. If anything like that would happen because of me, I would never forgive myself. Therefore, even though I know that I would love to have them continue to spend on me and get me well, I quite understand that there isn’t anymore money to just spend on me and I understand how much of a “financial burden” this disease just is. I mean… medications, copayments, health insurance, doctor appointments, traveling expenses, deductibles, etc. all add up. With copayments alone (and that is with the insurance paying), we pay over $25,000 alone. That isn’t including all the other stuff that we spend on such as the traveling expenses, the cost of the medications not covered by the insurance (which I take a lot of), doctors that I see that aren’t covered, cost of the health insurance, etc. So… I realize how expensive this all gets and we can’t afford it. Yet, I really don’t wanna die and it really stinks to know that I am rapidly deteriorating and there is possibly a treatment out there that can save my life… yet I can’t afford to keep myself alive anymore.
I suffer from a rare and life-threatening disease. Not only do I suffer from a rare and life threatening neurological disease, autonomic dysfunction, gastroparesis, and brain tumor, I am still wanting to survive. Although the future does look grim, I really want to continue to try everything to survive. There are some treatments still available from top specialists that could possibly continue to keep me alive, but of course that means more money being spent… money that I don’t have. The doctors never expected me to last and live this long, but I showed them up!! They don’t know how I managed to do it, but I have despised all odds and am still surviving. Yet, it is getting to the point that my luck is running out and without further treatment, I am going to die VERY soon. I can only hang in there so long… especially if I don’t have any treatment.
I have tried every which way to try to raise funds… made a website, tried to contact people through letters and Facebook, tried to contact the media, made flyers, etc. but they have not been successful. If anything, they might have worked for a few days, but it quickly died out. I really need help, as time is really of the essence. I hate to be a CRIER because I never really was, but desperate time comes to desperate measures. Without the help of others, I fear that I am certainly going to die, as I can no longer afford this on my own. I look on TV and such and see others being publicized. I don’t know how they get their stories across and I can’t get mine across. I just wonder how they do it because there are even some stories that I know are definitely not as bad as mine and my story should definitely be one over theirs that should be told. Sometimes I wonder why stories that aren’t as “serious” as mine are brought to the media and shown and they are given “help” and “awareness” when I deserve it so much more because my story is really in so much more “need.” I don’t mean to sound arrogant or selfish or anything, but I just wanna live my life and have my story known and brought to the public so possibly I can raise enough money to continue treatment. After all, my life depends on it.
I really appreciate everything that everyone has done for me so far… especially my father. They really have done everything that they can do. I know that my dad has done everything he could, and I definitely don’t blame him. I just hope that something turns around because like I said, we desperately need help. I am so afraid of dying because not only do I not want to die for myself because I have so much to live for, but I don’t want to die for my dad. I know that if I die, my dad would never recover. If you have any ideas to fundraise or if you can spread the word of my website or that I am in desperate need of “help,” I would really appreciate it. Anything that you can possibly do, I would definitely appreciate because even the littlest amount… even $1… would make a huge difference and would help me “live!” I never thought it would come down to the time where I would be “begging” to live, but it has come down to it finally. I really don’t want to die.
The call has finally come in from Nebraska. I have to go to Nebraska because I am really deteriorating and I am in need of a life-threatening intestinal transplant. I need a multi-organ visceral transplant, which entails getting a new stomach, small and large intestine, and pancreas. However, this transplant is extremely rare and dangerous and runs the highest rejection rate of all transplants. Only 8 hospitals in the United States do this transplant, and my insurance company will only cover me in Nebraska and Indiana. Although I really need to have it done in Stanford, California, I am not covered there. The insurance company did say that they would cover me there, if I am denied in the other two places. However, even though they will cover me in Nebraska, it is still really “nothing” because it doesn’t take care of the traveling expenses, the expenses that I incur there because I will have to spend months there (which entails also my parents not working), deductibles, copayments, deductibles, etc. It is really going to be costly even though they said they will “cover” me in Nebraska. Even after the transplant, I will have to worry about medication coverage, as the insurance company will not cover my anti-rejection medication and I won’t be able to live without them. These medications alone will cost me $1000 per month.
Nebraska is known as being the largest hospital to do intestinal transplants in the country. I am seeing the world renown surgeon known as Dr. David Mercer. I really need a transplant because my entire GI system is paralyzed. When the small intestine fails because of a lack of proper length or the inability to absorb nutrients, a patient is unable to take in adequate calories to survive. This condition requires the use of intravenous nutrition known as Total Parenteral Nutrition (TPN). Long-term use of TPN can cause serious problems, including liver dysfunction or failure. We have tried various treatments, but nothing has worked. The only thing left is a GI transplant.
At The Nebraska Medical Center, they offer a comprehensive Intestinal Failure Program featuring medical and surgical treatment options. It is supposed to be the best program in the country. When I spoke to them, they asked me “What my goals were?” I told them not to laugh, but I told them that my goals were to “go out to eat with my parents and not have people stare at me because I am not eating.” I also told them that my major goal and dream was to “carry a cup around in the outside filled with a drink such a coffee, ice-coffee, etc. and walk around with it like everyone else.” I know it sounds really weird to have that as a major goal and dream, but that is something that I really want to achieve. I know that this is something that people take for granted… drinking… but it is something that I definitely can’t do. I would love to be able to walk around and able to bring around with me a cup of Frappuccino, a cup of coffee, a cup of ice coffee, etc. People don’t know how lucky they have it when they can do this.
When I told the staff at the hospital this, they were like “Those are very reasonable and understandable goals.” They told me that the biggest thing that I will need to do is to “trust” them because I have been misled and misguided so many times before. They explained to me how so many other doctors have not known what to do with me and have misguided me because they really haven’t seen cases like me before. They said that doctors really only deal with one case of me a year at the very most. However, at this center, they see like 10 cases a month of me a month. So, they understand my condition a lot. They understand that the cases may not be as severe as mine, but they know what is going on and know that each person needs to be treated “separately” and “uniquely.” They don’t treat a person like “all you have to do is eat!” At The Nebraska Medical Center, they offer a comprehensive Intestinal Failure Program featuring medical and surgical treatment options. These include a “rehab” program, nutritional support, and even transplantation, including isolated intestinal transplant and liver/intestine/pancreas (multivisceral) transplantation, when medical or surgical treatment interventions fail. They have a goal to have each patient be able to take in their calories by eating and not by tubes or anything. They don’t want patients to depend on any enteral or parenteral nutrition, which is something I definitely like because I don’t want to have to rely on tubes or not eating. I want to be as NORMAL as possible!!
The Nebraska Medical Center formally developed the Intestinal Failure Program in 2000 to help with intestinal failure. Today, the program treats patients from all over the world and has gained global recognition for its innovative and multidisciplinary approach to the care of these individuals. The program provides a multidisciplinary team approach to intestinal failure, as they have specialists on the team with expertise in hepatology, gastroenterology, psychology, child life and surgery for both adult and pediatric patients. Continuity of care is accentuated with specially trained transplant nurse coordinators, social workers, nutritionists, pharmacologists and patient financial counselors, as well as volunteer services. What makes it better is that their “survival rates” exceed national averages. They don’t just treat you and let you leave and forget you. Instead, the team provides extensive support and education to not only the patient, but to the entire family throughout the transplant journey and even after they return home.
As I have intestinal failure, which is the inability of the small bowel to ingest, digest and absorb nutrients, water and electrolytes required to maintain the nutritional status, I desperately need help ASAP because I am rapidly deteriorating. I barely weigh 70 pounds and if I was a male, I would surely be dead by now because males can’t exist at the level that I am at. Luckily, females can exist as a lower level and therefore, even though I am at a BMI of 12.2, females can exist til about 12. So, as you can see, I am barely hanging in there and time is of the essence.
So, I was awaiting the call from Nebraska to go to their center because they are supposed to be one of the best and because my insurance wants me to go there for the transplant. The doctor I am seeing, Dr. Mercer, is supposed to be one of the very best. His clinical interests center around all elements of solid organ transplantation, with additional focus on intestinal rehabilitation and management of patients with complex intestinal problems such as fistulas and extreme short bowel.
I never heard of a center that is as thorough as this hospital. I can’t believe all the testing that they want to do. Even though they made me send over all my records, which cost me $150, they want to still do their own testing. I can’t believe that they made me spend all this money for records and yet… they are only going to end up repeating the testing because they want their “own” testing. They say that they want to make sure it is as “accurate” as possible and they really only know for sure if the results are accurate if they do it themselves. It just stinks because like I said… I had to spend all that money to send them the results.
I am quite surprised though that they want so many tests to be done. I guess they want a COMPLETE picture of me, as well as what they are dealing with. You would think they would only want testing that was dealing with their field, but in fact… they want testing in other areas as well. Besides all the many GI tests that they want such as the EGD tests, gastric emptying studies, small bowel series, etc., they want bone scans to see how strong my bones are, pap smears, etc. I can’t believe how thorough they are. They even want dental exam results. I never really met such thorough people before. I can just imagine how much this trip is going to cost me because each time I go for a test, I have to pay for a copayment, which is not cheap.
I finally got the phone call that they reviewed my records and they want to see me ASAP. Ideally, they want to see me next week, but of course that is way too soon. I mean… I can’t just pick up and go, especially when they are located across the country. Plus, my dad has to set up the work for his business and try to catch up on some of the work as well because he will be missing out on so much too. We also don’t even have the money to just “go” right now, so there are many problems that are prohibiting us to going right this minute.
Yet, we know that time is of the essence and we know how much we really have to get there ASAP. There are two dates that we are playing around with. I am looking at going November 5th or November 19th. It all depends on the money issue and how much money we can gather up. I kinda don’t wanna go November 19th because that would mean that I would miss Thanksgiving. I really don’t want to miss this holiday because I have a HUGE feeling that it is going to be my very last thanksgiving and I really want to celebrate it with my family. Unfortunately, my family will be all separated for the holiday if we go at this time because like always, my dad will be going with me to Nebraska, and my mother and brother will be remaining at home. My mom did say that we would “celebrate Thanksgiving another day,” but I really want to celebrate it on the actual day. My parents are trying to downplay the day saying that the holiday is really “no big deal,” but it is a big deal to me and I really don’t want to miss it. I really want to spend the holiday with my family.
Thank goodness for FACETIME though, at least I get to see my family when I go away. I am so thankful for technology because even though I can’t really be with my mom during my trips, at least I get to see her still. You can’t imagine how hard it is for me not to be with her, especially when I am going through procedures and surgeries. So… at least even though she can’t physically be there with me… at last I still get to “see” her instead of just hearing her voice. It makes such a huge difference. I never have been so thankful for technology!!
In addition, I am really fearful about going the week of November 19th because I know how very crowded the airport is going to be during that time. After all… Thanksgiving is the busiest time to travel. I really can’t be jostled or anything and with all the people rushing and such… I will probably be bumped into very easily. Not only can’t I be bumped into because of my extreme hypersensitivity and the extreme pain that will accompany it, but my disease also spreads through “trauma.” My disease spreads like a wildflower and even the most innocuous “trauma” such as a simple hug can have the potential of spreading the disease. Being jostled or bumped into will certainly come with a price tag of having the risk of spreading the disease. In addition, I suffer from no immune system and if I get sick, I will be in bad shape since everything is magnified to me. A simple cold to me is like the “flu” and therefore, a simple cold can easily put me in the hospital. With all the people in the airport and the planes being so “full,” I will really risk getting a “bug” or something, which can really be detrimental to me. So, I would like to avoid all those risks as much as possible. Traveling really takes a HUGE toll on me as it is and I would like to make it as “easy” as possible. We all know that security will be all heightened at this time as well, which will only contribute to further problems.
So… I will let you know what is going on. As soon as I know if I am leaving on November 5th or November 19th, I will let you know. I also hope that I am leaving November 5th in a way because we have plans to go back to California on December 9th. I really need time in between to recover, as well as time to regroup on funds. If we go November 19th, I don’t know if I will have enough time to do this because by the time we come home, it will be time to turnaround and leave for California again. It will also be hard on my father because he can’t be missing so much work because like I said before, the business can’t function with out him and without him working, there is no income being brought in to my family and we need to pay our bills. Everything is just chaotic!!
I never have been to Nebraska before. I can’t believe I am going to Nebraska out of all places. I have become a “traveler” because of this disease. Unfortunately it has been under these bad circumstances, but I am really exploring the United States. I am seeing places that I would probably never see if I wasn’t sick. I mean… who would think I would end up in Nebraska of all places??
It is going to be so cold in Nebraska. I hate cold and it is freezing there. When I spoke to them today, the highs were only like 40 degrees. Gosh… it is only October and the high was only 40. When I said that was “freezing,” they said it wasn’t “too bad.” Gosh… to think it will only get colder and it isn’t even considered “winter,” I am really going to freeze to death. I also joke around saying that I am going to “hibernate” for the winter… but that is here in New York where it is warmer. I don’t know how on earth I am going to manage in Nebraska. I guess when we go I will be packing winter wear… winter jacket, gloves, scarf, etc. That is definitely one aspect of Nebraska that I am not going to like!!
When I was looking around in Nebraska to see what was in OMAHA, I saw that there was a zoo there that looked really interesting. You are able to walk across a swinging rope bridge suspended over a tropical rainforest at Omaha’s Henry Doorly Zoo, which looks really awesome. I also saw that they have a place that you can hop aboard historic train cars at The Durham Museum. It really brought back memories because I remember going to Pennsylvania and going to the train museum because my brother was infatuated with “Thomas!” This museum houses an extraordinary array of permanent exhibits including restored train cars, 1940’s store fronts, numerous artifacts showing the history of the region, and the Byron Reed collection which includes some of the world’s rarest coins and documents. Nebraska is just a city filled with history, culture and adventure. I would love to go to these places to check them out, but of course we won’t have time. Maybe when I get better dad can take me there.
I didn’t realize it but my dad will be in heaven with eating. When I questioned the hotel on their food, they of course said that they had the famous “Omaha Steaks!” I totally forgot that this place was famous for their steaks. When I told my dad about how the restaurant had these steaks featured on the menu and such, my dad was like “I am sure going to eat good when we go.” Unfortunately I can’t say the same because I really don’t eat red meat. I have trouble eating anything at all at this time, but even before all this, I don’t eat any red meat. I just hope that I am going to be able to eat because I don’t know what I am going to be able to get down. As of now, things have gotten so bad that I can’t eat basically anything. The only thing that I can swallow is ices (which are medicated) and egg whites. It appears that anything that has carbs is very difficult to swallow. I don’t know why.
So, that takes care of that. Nothing else is really new. I went to visit my grandma the other day. I really wanted to see her even though I knew that I shouldn’t be at the cemetery. I kinda got into some huge trouble in going, but it was definitely something that I had to do. I kinda yelled at her too for leaving me because we were supposed to “stick together” like peanut butter and jelly. But I understand that she couldn’t hold out any longer. At least I know that when I go, she will be there waiting with open arms for me.
Well… I guess I will be going. I really don’t feel too well. I have the doctor in the morning. My bloods aren’t doing too well. They are falling and my heart isn’t doing too well either. Sometimes I wonder how much more I can take. My heart has been through so much and I wonder how much it can take before it will give out. It is in such a “high risk” level that I can easily have cardiac arrest. It can easily have an arrhythmia as well. But what will be will be.
I also have something wrong with my elbow that we don’t know what it is. It looks like a rug burn or something, but it really isn’t. We don’t have any idea what it is. I have been putting lotion on it and such, but it is really “raw” and really HOT too. I showed it to my parents and they sent me to the doctor. The doctor didn’t really know what it was and was worried about it as well. As a result, he sent me immediately to the dermatologist. Even the dermatologist didn’t know what it was. She had given me some steroids to take and if it doesn’t clear up in a couple of days, she is going to give me some more steroids to take. Never a dull moment.
I finally got my flu shot. It was about time. The doctors were hesitant to give it to me with my health and everything. They were afraid with my poor bloods and how I was feeling that something bad was going to happen. But, we couldn’t wait anymore and they all decided that if I got the flu, it would really be a disaster, as it would definitely “kill” me. That would definitely do it for me. So, this was the better of the two evils… so they gave it to me. After all… flu season is just around the corner.
Well… been trying to read a bit. I have been reading this book called RED RAIN by R.L. Stine. He used to be my favorite author when I was younger. I used to read all his books. When he came out with an “adult” book, I couldn’t resist but to pick it up and read it. I haven’t read one of his books in ages (of course because he only wrote kids books before and hasn’t written them in awhile). I also can’t wait to see the new movie called ALEX CROSS. I am such a James Patterson fan and I love his books. Even the movies that came out on his books have been amazing. So… I am awaiting to see that movie. Of course it will be when it comes out on DVD because I can’t go to the movies to see it.
Halloween is next week. You can tell I am getting sicker and weaker because I used to be so into Halloween. My brother and I used to decorate the house like crazy and I couldn’t wait til Halloween. We used to go all out with corn stalks, huge pumpkins, decorations, etc. We used to get this huge pumpkin that weighed so much and would last til Thanksgiving.
Now it is at the point that I couldn’t honestly care less. I still haven’t carved my pumpkins and I haven’t hung any decorations. If it wasn’t for my mom hanging the minimal decorations and putting the three pumpkins outside, we probably wouldn’t have anything. I just don’t have the energy to anything anymore. I do wanna cut open the pumpkins though… not so much to make the faces, but I want to make the seeds. My family loves pumpkin seeds and nothing is as good as FRESH pumpkin seeds that are directly from the pumpkins you get. It definitely tastes way different than the ones that you buy in a store. My brother and father can literally go through the entire amount of seeds in one sitting. I only wish I could eat because I used to love them so very much. But, I also of course will make a face on my pumpkin as well. If I am carving them to get the seeds, I might as well make some faces on them too. I will probably do it Sunday morning before breakfast because Halloween is Wednesday and they become moldy so fast. This way it will last for Halloween when the kids come trick or treating.
Well… like I said before… I just gotta hang in there and pray that something is going to turnaround. Hoping and praying that maybe my family will win the lotto or something because even though that is like picking a needle out of a haystack, it might have better odds at this time than actually “raising” funds because no matter how hard I try… it hasn’t seemed to work. It might work initially, but it quickly dies out and only works minimally. Like I said before, if you can please help in any way, I would really appreciate it. Anything you can do… whether it is by spreading the word, saying a prayer, raising funds, etc. I would definitely appreciate it. As for now… I just gotta keep my batteries charged because I am the ENERGIZER BUNNY and I keep going and going.
Until Next Time!