I know… it has been a long time since I last written. But… I am still here and I haven’t forgotten about you. LOL. It just that I have been really not feeling well lately and it has been really difficult to do anything. However, since a lot has happened and is happening, I figured I really must write and let you know what is going on. I figured that even if I didn’t get to write and get to say about ‘everything’, at least you will know more than zilch. So… I guess I will just see where this leads.
Living lately is like going down a ski slope with a double black diamond rating because I am going downhill so fast and constantly being challenged by obstacles that keep standing in my way (this slope is the steepest, narrowest, most difficult hill that is filled with more hazards than any other hill). Not only am I having so many troubles with my health, but I am also having so many problems with my finances that are standing in my way of receiving the lifesaving treatment that I desperately need.
I desperately need help. I desperately need help raising funds because I can officially say that my family is “broke!” I don’t say this lightly because for me to admit to this… especially to other people… it really takes a lot. Despite making the ‘cuts’ in my treatment so that I could receive other essential treatment, it has gotten to the point that I can’t even get any treatment whatsoever because even going for a simple blood test is really a BIG ordeal. I never thought that I would have to cancel going for bloods because we didn’t have money, but it has gotten to the point that money is so tight that we didn’t even have money to send me for my weekly bloods.
Money is so tight lately and it really scares me. The bills are so great and we are having so many problems making ‘ends’ meet. We are even having problems paying the mortgage and even putting food on the table at this point. I hate to think that all these problems were because of my medical bills. I know that they were probably not ALL my fault because the economy is not the best, but I am sure that having this very costly medical illness for so long didn’t help the situation at all. I am sure that my illness really caused my family a great financial strain and I feel extremely horrible for all that I have caused my family to go through. Not only have I caused them to give up so much of their life so that they can become ‘caregivers’ to me and they had to give up so much because I couldn’t do things like go out to eat and such, but they had to give up other FUN things that other people take for granted and enjoy like vacations. We haven’t been on a family vacation in like 8 years. My family has gone without fixing up the house and I am sure that my mom would definitely would have loved to have new stuff brought into the house or the kitchen redone or new furniture and stuff… stuff that other people take pleasure in redoing and getting so that their house can look nice. However, to know now that my family can’t even afford the mortgage or to bring food into the house, it really bothers me because I would hate for them to lose the house or suffer so much because of me. My father has never walked around with so little cash and just making it throughout the week on food alone is becoming a BIG problem.
I really need to find a way of raising funds because I need essential treatment that I am unable to receive. Due to this severe financial strain, I haven’t really been able to receive even the most essential treatment. Even to go to my internist or to go and have simple blood work that would cost me only a $15 copayment is too expensive at this point. To think… the treatment that I need costs far more than that too. By the time you factor in the cost of treatment, the specialists, the traveling expenses, the parking, etc. it really becomes quite expensive to see a doctor or go for a treatment. Plus… even getting medication is really impossible because the copayments for medication are really adding up to be quite costly. I take over 50 pills daily and they are quite expensive. Even so… not all my drugs are covered by insurance, so it is quite possible it would cost me more than a simple $60 copayment.
I was supposed to be leaving this coming week, March 3rd, for California. I am really going downhill and it was essential for me to go to California for treatment. However, since there is no money at this time, we were forced to cancel the trip.
However, things have gotten progressively worse and it is at the point that I really need not only lifesaving treatment, but I desperately need to go back to California since the specialists in California are the only doctors that can help me. It stinks that the only doctors that can help me are on the other side of the country. I am so complex and complicated and no one except the doctors in California can help me. I have tried basically every single hospital in New York and even traveled to many hospitals in the country that were closer than California such as Cleveland Clinic, Vanderbilt University Medical Center, John Hopkins Medical Center, Duke Medical Center, Boston Medical Center, Temple University Medical Center, Indiana Health, etc. but the only place and the best place for me is California. So, we really have no choice but to go across country.
I spoke to my GI doctor in California tonight and it has been determined that need to get to California ASAP. So, we are planning on going to California March 25th. So much has happened lately and my life is literally in jeopardy. I need to not only see him, but I need to see the neurologist ASAP. The doctors normally don’t have appointments until August, but they are fitting me in as an “emergency” because it is essential that I be seen immediately. When I asked the doctor if I can do any of the ‘workup’ or ‘tests’ here, the doctors said that it is at the point that it is way too dangerous. I need to be under their care ASAP.
It turns out that it looks like my pancreas has failed me. They are basically 99.9% sure about this. I have had so many warning signs, but we never really picked up on it. However, now that everything has been occurring the way that they have been with everything else… it has been determined that my pancreas has now been failing me on top of everything else. I can’t believe this. After all that I have been going through… I now have to worry about my pancreas failing me. My life is like a ‘soap opera’ because there is never a dull moment; there is something always going on.
I am really nervous because I desperately need to acquire funds in order to get to California. We can’t afford to go on our own, and I desperately NEED to go. My life literally depends on this because not only do I need to go because of my illness and such, but also I have to see what exactly is going on with my pancreas, as my doctor thinks that my pancreas has failed. I am so nervous because I can just see how much this trip is already going to cost me. Besides the traveling expenses and hotel and such, it is going to be very expensive with just the medical expenses alone. I am sure they will need to run plenty of tests and each test they run has a copayment in itself of $150. This includes blood work and radiology exams. The doctor was already telling me how I am going to need blood work and CT scans and such, so I can just imagine the cost of all this. Plus… if I am hospitalized, I will have a copayment of also $150 per day. So… as you can see besides having the fee to see the specialist and the traveling expenses, my medical expenses are also going to be a lot. I definitely cannot afford this on my own and I am only hoping that there will be a way to raise some funds for this. Otherwise I fear that I won’t be able to go and my life will suffer for it. There has to be something that can be done. Even though I contacted the media so many times and I haven’t been successful because it isn’t “what you know it is who you know”… there has to be something that can be done like a way to get it publicized so more attention can be brought that I need ‘help’ or something. There has to be a way to get it in the media… especially the newspapers or something. If you have any suggestions or can be of any assistance, please let me know because I am freaking out and I am so desperate. If I can’t even afford to go to doctors around here and pay for a simple blood test, how am I going to afford all this in California? I only fear that my life is going to suffer for this. It is so unfair how much the green dollar is in control of my health, life, and destiny. I can only wonder what the world would be like if money didn’t exist. You know?
I have been complaining lately about my stomach really killing me. My stomach has been really distended and I have been feeling ‘pregnant.’ Not only have I felt ‘pregnant’ but I looked it as well. I can officially say that even though I don’t have kids, I can definitely say I know what it feels to be ‘pregnant’ because of the way that I am feeling. It isn’t’ just me saying this either. When other people look at me as well, they say the same thing because my stomach is so distended. So, it isn’t just me being bias. My stomach hurts so much and it feels so inelastic. It feels like it can’t expand… even a little bit. It feels like there are thumbtacks just sticking out of me 24/7. Even though I am sooooo incredibly thirsty, I really can’t drink because not only do I have swallowing difficulties, but I can’t also drink because the liquid will make my stomach expand even more and it can’t because it feels so ‘inelastic.’ It is like it is maxed out and swallowing anything cannot make it expand anymore. So when I swallow anything because I am thirsty, it causes even more pain. I am in so much pain as it is… I can’t afford to have more pain. You know? I am so filled up with air that I am so surprised that I haven’t floated to outer space or something. I really need someone to pop me!
Not only am I so bloated and distended that it is causing me severe pain and discomfort, but it is also causing so much pressure on my organs. I am so tiny too, so it causes additional problems because it doesn’t give much room to allow the ‘bloat’ to go other places. As a result, it is putting severe pressure on my organs and causing them to fail. Even my heart is having problems. So, my body is basically shutting down and such because of the pressure of the ‘air.’ The doctors are also worried about the pressure causing my intestines to twist because it can really kill me instantly if that happens
I also am having so much trouble keeping weight on me. I am already down to so little weight and I can’t afford to lose any weight whatsoever. I barely weigh in the 60s and any weight can really be extremely life threatening. No matter what I do, I just can’t keep my weight on. I just don’t know how long I can hang on with constantly losing weight.
In addition, my bloods have shown a very high level of amylase. It is like 3 times the normal limit. No one really knew the cause of why it was raised so much. But we just knew that it was raised. However, now that it is raised and taken with all my other symptoms that are occurring, we know that it is most likely because of my pancreas failing.
I am also having lesions in my mouth. The roof of my mouth is very swollen and there are lesions in there as well. I went to the dentist, but he wasn’t quite sure what to make of it. The doctor put me on Lidocaine to help with the pain, but if the lesions didn’t get better or if it worsened before Monday… I would have to go to an oral surgeon to see what is going on. Even though they are pretty sure that this could be because of the pancreas, the doctor still wants the surgeon to look at it if on Monday it is still there or worsens.
I am so very weak. I can barely stand without collapsing. My legs just feel so weak and they feel like weak twigs ready to snap in half. I barely can walk (with my crutches)… let alone go up and down the steps. I used to be a pro with the crutches go up and down the stairs with the crutches, but that isn’t the problem. I can still go up and down the stairs with the crutches, but the problem is that my legs just can’t support me anymore and they little crumble underneath me when I come down onto them. I then don’t have the energy to go up the stairs or the strength of my legs to get me up the stairs anymore. I never thought that I would end up like this.
My heart is also giving me problems. Not only am I aspirating and having trouble breathing, but my heart is also suffering. We don’t know why, but every time I eat anything, my heart gets palpitations and goes out of rhythm and such. We think it is because I am so undernourished. It only confirms that something needs to be done because my body is just suffering so much and when I finally get ‘nourishment’ my organs and body are going into shock. In fact, when I do get better, the doctors told me that they will have to ‘feed me ever so slowly’ because of the ‘Refeeding Syndrome.’ Refeeding syndrome is a syndrome consisting of metabolic disturbances that occur as a result of reinstitution of nutrition to patients who are starved or severely malnourished. Any individual who has had negligible nutrient intake for 5 consecutive days is at risk of ‘Refeeding Syndrome,’ so you can just imagine how much at risk I am. During refeeding, insulin secretion resumes in response to increased blood sugar; resulting in increased glycogen, fat and protein synthesis. This process requires phosphates, magnesium and potassium (which are already depleted). Cardiac arrhythmias are the most common cause of death from refeeding syndrome, with other significant risks including confusion, coma and convulsions and cardiac failure.
It is imperative that I get to California to because I have to seek the expertise of my neurologist because he is the only doctor who can help me. Even though I have seen other neurologists, he is the only neurologist knowledgeable about my complex situation. I have something new going on as well with my nerves, so it really needs to be looked into. My face keeps going numb and it feels like there is electrostatic energy too on my face at times. I never had this feeling before, so it is definitely something we need to look into. In addition, my legs are becoming ‘blacker’ than ever and they are not resuming normal coloration. It is extremely dangerous because it means no blood flow is occurring. We are pretty sure it has to do with my neurological disease/autonomic dysfunction and therefore, it is essential that my neurologist do something immediately because time is of the essence. If something isn’t done quickly, I can easily lose my legs because of the deprivation of oxygen. I also feel like someone is constantly hammering my toenails. It is extremely painful. So hopefully the neurologist can help me with that aspect as well because the suffering is horrible.
I am really scared because I watched my grandma die last year. I am so afraid that this is just like last year repeating itself. My grandma and I had a deal that we were going to stick together like ‘peanut butter and jelly’ and be with each other to the very end because she had cancer and neither of us was going to give in. However, she started to really deteriorate starting last January 2012 and ended up dying 2 months later in March 2012. I am so afraid that I am going to suffer the same exact fate because I watched her deteriorate and suffer the exact same symptoms that I am exhibited and in the same time frame basically. I watched her go from having trouble walking, to not being able to really move her legs, to not being able to walk, to not being able to swallow, to not be able to eat, to losing so much weight that she was a bag of bones and her glasses looked so huge on her, to not be able to talk, to not be able to communicate really, to just sitting in wheelchair and having people do everything for her (even transfer her back and forth), to drooling, etc. I watched her basically go from a human being to being trapped in her body because I truly believe that she knew exactly what was going on and understood everything, but she just couldn’t talk to people. Even though she really didn’t ‘communicate’ or ‘talk’ to people she made sure she found a way to ‘talk’ or ‘communicate’ to me even if it was through murmurs or something. She knew exactly who I was and always made sure that I knew that she ‘loved’ me. So I truly believe that even though she couldn’t really do anything…. She knew exactly what was going on. Her body might not have been hers anymore, but she still had her mind.
I am so very scared I am going to end up like my grandma. I was with her throughout her illness until the day she died. I was even there when she died, as she died in my arms. She actually waited until I got up to the nursing home to see me until she passed away in my arms. I don’t want to suffer the same fate. I don’t mind dying because I am suffering so much, but I just don’t want to be like she was right before… with the drooling, the inability to communicate, having everyone do everything for me, etc. That is my biggest fear. My dad promised me that he would never let that happen, but I know that he is not in control. He knows it too that he is ‘not in control’, but he always tries to be my hero and knight and shining armor. That is why it hurts him so much that I am sick because even though he wants to help me so badly, he knows that no matter what he does… nothing he does can make me better. He feels bad because even the simplest thing like take me for treatment or give me treatment to help me is something he can no longer do because of the financial strain. It hurts him so badly.
Dad is one incredible person though. There isn’t anything that he wouldn’t do for me if it was in his power. He would literally go to the ends of the earth if he knew that it would get me well. Since my bloods are so bad and such, I need to have these medicated ice-pops. Not only does my dad spend endless nights awake with me because I don’t feel well, but he gets me at least 2 ice pops throughout the night because we have to try to keep my bloods up as much as possible. So in order to do so, not only do I eat and have ice pops throughout the day, but I also have to wake up during the night (actually dad has to wake up because I don’t sleep) to a ‘snack’ and 2 ice pops. I try to have a little cereal, but it is extremely difficult. Anything that has carbs is so hard to get down. I have been living basically on egg whites, but I try to get down some corn flakes during the night. Even swallowing pills, the ice pops, and even just liquids is getting to be impossible. To not to be able to swallow the ice pops or just liquids… you can tell it is bad.
Finally, the doctors have to also look into why I am getting so much pain when I take my injections. I usually give my injections into my stomach since that is the most ‘padding’ that I have. Anyway… when I inject the needle, it feels that the liquid hits an obstruction and deviates to other places. As a result, it causes tremendous pain instead of going just directly ‘inside’ me. It is really weird that the medication goes the way it does when it is being injected instead of going directly into the abdomen. So it is just one other thing that the doctors have to figure out what is going on with it.
So… I guess I just have to pray that something comes about with the funds by the end of the month because I desperately need to get to California. My California doctors are sending me to my GI doctor in Manhattan to keep an eye on my failed pancreas in the meantime, but ideally… the only people that can help me are the doctors in California.
So… if you can please help me raise some funds or spread the word that HELP is desperately needed, I would really appreciate it. In the meantime, if you can please PRAY for me, I would really appreciate it too. I really need all the help I can get because time is definitely running out for me.
I had a conversation with my dad the other day and I told him that I compared myself to a ‘stegosaurus.’ A stegosaurus and I both have the same coloration, both have spikes (especially down our backs…. from the neck down to butt), both have cheeks (only dinosaur with this advanced feature), we both don’t eat meat, and like the stegosaurus… I will soon be extinct unless something is done quickly!!
I really hope that I get better. It is so unfair that I am suffering. I have absolutely no FUN in my life whatsoever. There is so much that this illness robbed from me and so much that I still want to do. It stinks that there is no MAKE A WISH FOUNDATION for adults. I really wish that I would be given a chance to have a ‘wish’ but unfortunately I am not under 18. By being over 18, you really lose out on a lot of things… including staying at the RONALD MCDONALD house, which would really help a lot. I told my dad that the only thing the three-letter word FUN and I have in common are the ‘first’ and the ‘last’ letters. I really wish I would be able to get better so that I can do stuff that normal people do. This is definitely not a way to live a life.
In the meantime, I have been trying my best to keep myself as ‘normal’ as possible. I am reading a great book called SUSPECT by Robert Crais. I strongly recommend this book, especially if you love mysteries and suspense and/or love dogs. I also can’t wait for the new movie OZ THE GREAT AND POWERFUL to come out. I really want to see that movie so badly. Of course though I will have to wait until it comes to DVD to see it since I can’t go to the theater. It looks like it is going to be a great movie and I am such a WIZARD OF OZ fan. THE WIZARD OF OZ used to be my favorite movie when I was a kid. In fact, whenever it was on, I used to watch it ALL the time.
I can’t believe it is March 1st already. Looks like springtime is just around the corner. YIPPEE. I hate the winter because I hate the snow and cold. It looks like we got away with not having too much snow this year. Hopefully we are all done with the snow, but I am not counting it out just yet! I just can’t wait for the beautiful spring weather. Springtime is just so pretty.
Well… I guess I will be going. I will keep you posted with any updates like always. Talk to you soon!