No time no speak. I know… it definitely has been awhile. But… I couldn’t help it because things are just getting horrendous and I really haven’t been feeling well. But, I am still plugging away and still hanging on. Still hoping and praying that there will be some advancement and some turnaround… hoping and praying that I will make it through this horrible disease. After all… positivity is everything. Happiness and destiny are things we create, not positions of circumstance.
Feeling good about yourself or the aim to achieve anything is positivity. You cannot progress in life if you continue to have a negative attitude. It has taken me awhile to realize this because like a lot of people, I have not always been the most ‘positive’ person. However, through the help of my parents and a great friend, I have learned that you cannot achieve anything when being ‘negative’ because being ‘negative’ in life gets you absolutely nowhere. As Helen Keller once said, “Although the world is full of suffering, it is also full of the overcoming of it.”
I am trying so hard to overcome my illness, but it is getting so hard. It is basically impossible, and even harder when you don’t have the friends and support of family and friends. Luckily though I have had a friend re-enter my life lately and she has been helping me deal with my illness and helping me to strive to overcome my illness. She has been helping me so very much, as she has been trying to help me medically and mentally. She has been helping me try to look for advancements that can possibly help, as well as look for ways of getting financial help for my treatments because it has gotten to the point that we really can’t afford anything for this costly disease.
I really need to find a way to raise funds because I am rapidly deteriorating faster than ever. I can’t keep my weight on and I am losing weight at a very fast pace. This is not good because it isn’t like I have room to lose because I already weigh in the 60s. Knowing that I am approaching the 50s is very scary. How long can a body last that weighs so little?
In addition, the discoloration in my body is getting really bad. Discoloration is normal for my neurological disease, as it is a symptom of it. However, it is at the point that it is very dangerous and can be very life threatening because not only am I discoloring throughout my body, but my left leg is literally BLACK. Having any part of your body being BLACK is not a good sign because it means that no oxygen is getting to that area. In the past, even if my left leg was black, it kind of disappeared when elevated. However, this is not the case anymore; it remains black as night and really discolored no matter what. It really concerns me because it shouldn’t be turning black or discolored because I had a sympathectomy in that leg years ago. Sympathectomy is really a surgical treatment that damages nerves within the sympathetic central nervous system. The process is carried out to improve blood circulation and reduce long-term pain in a few diseases that create narrowed arteries. This surgical treatment cuts or damages the sympathetic ganglia that are collections of nerve cell bodies in clusters across the thoracic or lumbar spinal cord. Sympathectomy is conducted to alleviate intermittent constricting of arteries, which would increase circulation and thus, it would prevent discoloration.
I always knew that it could be a possibility to lose a body part because of my illness. The doctors have even stated that even if I got well, I might still lose a limb, especially my left leg, because my tissue has been deprived of oxygen for so long already and tissue has already died. Yet, I am petrified because I don’t want to lose my limb and especially now since the discoloration is so bad and it won’t go away.
In addition, I can’t cut my toenails because of the extreme pain. I am always being told that I need to cut them because they are so overgrown, but any touch of the foot is really unbearable because of the excruciating pain. Therefore, I haven’t allowed anyone to really touch my toenails, especially on the left foot in years. The toenails are so long on the left foot that since they haven’t been cut for so long, they actually have grown skin underneath the nails. As a result, even if I wanted to cut them now, it would be nearly impossible because I would have to actually cut the skin since the skin has grown underneath the nail that protrudes from the toe.
I ended up cracking one of the toenails on the foot that is worse. It is causing me more pain and we are unsure what to do because the nail is cracked in half on the actual toe and we really can’t continue to cut it because of the overgrown skin. I also have sores on that foot from the cracked toenail and I have a very difficult time healing. Due to my poor circulation especially in my left leg, I don’t get enough blood flow as well. So between the difficulty in healing and the decrease in circulation, I am petrified I am going to get an infection or something that will lead to having to lose my leg. So, we are really confused at the current moment as to what to do. In the meantime though, it is very painful and also adding to the discoloration.
I have also been told lately that my pancreas has failed. Never a dull moment, right? However, there really isn’t much that can be done in New York and it is imperative that I get to California so that something can be done. My organs are just shutting down.
When I went to my GI doctor though to talk about my pancreas, we also talked about the much-needed transplant since I am rapidly deteriorating and we don’t know how much longer I can honestly hang on. He suggested to possibly doing just an intestinal transplant instead of a multivisceral organ transplant. In this way, I would just get a small intestine instead of a whole new GI system (stomach, small and large intestine, pancreas, and liver). Even though it wouldn’t be as risky and radical as the multivisceral transplant, the intestinal transplant is extremely dangerous as well. In addition, if I got the intestinal transplant, I would still never be able to eat and therefore, I would be on ‘tubes’ the rest of my life.
Never eating ever again and being on ‘tubes’ the rest of my life is something that I definitely don’t want to do especially if I am undergoing a very dangerous transplant like the intestinal transplant. If I am going to go through something dangerous like that, I am going to have a payback that is worth it. What would I be gaining by just having a transplant of my intestines and then being tubed anyway? I still wouldn’t be able to eat and I still wouldn’t be able to be technically ‘normal,’ which is something I desperately want. Who would want to go out with me to have me sit with them and watch them eat all the time? They would feel funny and so would I. Plus, I would also be suffering all the time as well because I would be so hungry. Even though I technically would be ‘full’ because I would be getting sufficient amount of nutrition through the tubes, I still would be hungry because it wouldn’t register as to being ‘full’ since I am not putting the food in my mouth and chewing and swallowing it, as well as it not going into my stomach. Feeling ‘full’ is not just about having food into you. Your brain has to register it as well and unless you chew and swallow it, as well as it goes into your stomach, your brain is never going to feel satisfied. As a result, my stomach would always be hungry and growling for food. This would never be a way to live.
The doctor wanted me to go for this because he knew how much and how fast I am deteriorating, as well as how time is not on our side. He figured that it would also be easier to get a intestinal transplant than a multivisceral transplant because only 6 hospitals really do the multivisceral transplant and there are no hospitals in the New York area that do it. I would really need to have it done in California, but the insurance wouldn’t cover it. However, if I went with the route of just having the transplant of the intestines, more places do that transplant and I probably could have it done in the New York area. However, there was one problem though. I probably wouldn’t be able to have it done here because the hospitals that are geared for the intestinal transplant wouldn’t be able to put me into a ketamine coma for days like they would in California. I would definitely need ketamine and therefore, that eliminates having it done here. After all, we know my disease will act up because anything traumatic sets my disease off and makes it worsen. Last time I had surgery to put the tubes in, I couldn’t even stand afterwards. It wasn’t until I had the ketamine that I was able to resume standing and walking with my crutches. Ketamine is my ‘miracle’ drug and unless the hospital has it, I really can’t have anything done there because having anything done to my body aggravates my condition and I need the ketamine to ‘fix’ it.
However, my dad was pushing me to have the intestinal transplant because more hospitals are willing to do it. So he figured that even though this hospital couldn’t do it because they didn’t have the ketamine, there would be another one closer than California that would be able to do it and that the insurance would cover. However, like I said before… I don’t want to live on tubes the rest of my life and never be able to eat ever again… especially if I am going to risk my life and undergo a very dangerous transplant like that. My dad would do anything to keep me around, and therefore, he doesn’t care what condition I am in as long as I am here. Therefore, he even said, “It doesn’t matter if you are being fed by tubes!” In order to show him my point of view, I told him that he can’t eat anything on Sunday and I am going to cook up a storm in the house. I told him that I am going to fill up the house with the scent of sweets, as I am going to make cookies, cakes, etc. I told him that I am going to let him see what it is like to see and smell all this delicious food and not be able to eat it. He insisted he could do it as long as he had his egg in the morning, but I told him that he couldn’t have ANYTHING whatsoever. Even though he hated to admit it, he knew that it was not a life to live.
I know it is more dangerous, but the outcome is so much more worth it. Both transplants are extremely radical and dangerous. However, if I am going to undergo a dangerous transplant like this, I want it to payoff in the end. I wouldn’t want the intestinal transplant to only suffer more. Taking the risk of the multivisceral transplant would be so much more worth it because just the thought of being normal is such a better idea. I have so many plans for when I have that transplant such as having a party where I can gorge and eat anything I want. I even have a menu of all the things I am going to eat once I get the transplant and are able to eat like a normal person. I also want to be able to have an alcoholic drink because I really never had one. Between being a competitive figure skater when I was younger and then coming down with this illness, I never really got a chance to ‘drink.’ However, if I went and had the intestinal transplant, I could forget about that dream.
Speaking of organs shutting down, my heart is giving me additional problems nowadays. Not only have my bloods been extremely low, which can easily cause me to go into cardiac arrest and have an arrhythmia, but I also have extreme pressure being exerted on my heart because of the air buildup in my abdomen. There is so much air buildup because of my failed GI tract and therefore, the air is causing my organs to shut down because of the compression on them. One organ that is being affected like I said before is the heart.
I have also discovered that I am having even more heart problems when I eat because I am getting even more chest pains when I eat. It turns out that when you eat the heart begins to pump blood back to the stomach and other areas to help the digestion process, which increases your heart beat and activates the autonomic dysfunction. In addition, since my body can’t really absorb food and can’t really take in nutrition, my body is essentially being starved because of the failed GI tract. As a result, eating leads to over secretion of insulin, which causes heart arrhythmia. It is like my body kind of goes into ‘shock.’ So, when this occurs, I can easily have a heart attack, especially when my bloods are so critically low and already gives me a significant risk of having an arrhythmia and cardiac arrest.
In addition, I have been suffering with lesions in my mouth and we are not sure where they are coming from. I went to the doctor and he didn’t like the way that they appeared. He sent me immediately to see a surgeon, but due to the complexity of my condition and all my medical history, they felt that it was better that I saw a top surgeon who was also a pathologist at Long Island Jewish hospital. However, when I called to make the appointment, the earliest they have is April 11th. I desperately need the appointment now because the lesions are worsening and they are also painful. I am really getting petrified what they can be because I never really had something like this and instead of them getting ‘better’ and disappearing, they are changing and worsening.
I also wanted to let you know that I am going in for a ketamine coma tomorrow (Thursday). I am really counting down the minutes until I have the coma because I am suffering so much. I have never been so desperate for a coma before because not only am I suffering from pain so much and the ketamine coma gives me a day of relief from all my suffering that I never get a second of relief from, I am hoping that it will help with the discoloration that my body is exhibiting since it is really getting significantly worse.
I am deathly afraid of losing a body part and something really needs to be done quickly to allow that not to happen. I am also hoping that the ketamine will heal the cracked toenail and skin ulcers that I have because ketamine in a high enough dose has been proven to cause ‘healing.’ In studies, it has been shown that approximately 2 to 3 days into the ketamine-midazolam anesthesia, there was objective evidence that the ulcers were healing. Even though I am not being given the coma for that length of time or that high of a dose, hopefully it will still make a difference.
I might be going in for surgery as well during the coma, but I am not quite sure if that is going to happen. I am still getting severe pain from my thigh to my knee and we are not sure where it is coming from. Originally we thought it was from my broken hip that I broke in the past, but it was proven otherwise. They have been looking into my spine, so I don’t know if they are going to be working in the spine again when I go on Thursday. I can’t even extend my leg or anything because of the extreme pain. I am pretty sure though that they will be doing the surgery too, but I am not 100% sure.
When I first started going into comas, I used to always bring my iPod into the room so that I could listen to music. In this way, it kind of kept the bad dreams away since ketamine notoriously known for causing them. However, ever since my dad has been allowed into the room, I have stopped bringing them because I like to hear my dad. However, music really did make me relax. With everything that has been happening lately and all the stress, I was thinking that I should possibly listen to music again and it would help. I can’t sleep or anything because of the pain and I was thinking about maybe the music would help that as well. However, I used to have earbuds, but they aren’t really good anymore. I have had the same pair for over 15 years. I guess nothing lasts forever. Anyway… I have wanted these headphones for a while by Sony (X headphones), but unfortunately they cost money… money I don’t have. They are currently on sale, but that doesn’t help because I don’t have the money right now. Also… they are coming out with a cheaper version of the X headphones (MDR-X05/BR), and they are being released on the 25th of March. So I have been putting a little money aside each week so that I will be able to get them. However, it will take forever at this rate. We are only putting on the side like $10 and they cost much more than that. I know there are definitely other headphones I can buy, but I really have liked these and I know if you buy good, you will enjoy it. Plus… I never really treat myself to anything; I really want to buy myself something nice for a change.
Although I have had some horrible times lately, I have also had an amazing experience since the last time I written my last blog. I don’t have many friends or family left because of this illness, but lately a very dear friend has re-entered into my life and has been standing by my side. Even though she wasn’t here in the beginning, I don’t care because she is here now and that is all that matters. She is one of the most amazing friends that I have because she is always there for me. Even though she has her own family and also works, she still takes time out of busy day to make sure that I am OK and also to offer compassion and care to me. She always extends herself to me so that she can give me a shoulder to lean on and is someone to talk to, someone to guide me, someone to even help me look for advances in treatment so I can possibly live. She is someone that is by my side no matter what, and I can’t tell you how much that means to me. As Herbert Humphrey once said, “The greatest healing therapy is friendship and love.”
She has been extremely helpful in so many aspects. Since I have gone through so many treatments and I have exhausted basically all treatment options, she is constantly looking for medical advances that can possibly help me, as well as and even willing to take me to appointments when my dad is unable to. She is even aware of the lack of money that we have and how my treatments are suffering and as a result, she is doing whatever she can to try to raise money. I only wish I can repay her for all that she has done because she has gone way beyond the call of duty. I can’t ever thank her the best.
In addition, she has even visited me multiple times and has made me feel not just like a “disease!” She has actually made me feel more like a ‘person’ and has even taken me out to let me have some FUN and enjoyment in my life. We all know that I may not have a lot of time to live because of all that I am going through, as I am rapidly deteriorating, but this friend is determined to give me the most fun I can have in my remaining days. It is honestly like a dream come true and she is like my ‘angel’ because I am no longer ALONE. I am not locked up or cooped up in a house and just overwhelmed with this illness 24/7. Instead, I actually someone enjoy myself and enjoy my life and I can forget about being sick for a bit.
This friend is simply amazing and like I said before… when I am with her, I can kind of forget that I am sick for a bit. This past weekend I had one of the most amazing days of my life. It was simply the best!! She took me out and we went to the food store and then we went to the beach. I love the beach and haven’t seen the beach in the longest time. It really was a dream come true. In fact, even though there were dunes all along the beach because of HURRICANE SANDY and you couldn’t see the water unless you climbed over it, my friend was determined to have me see the water. As a result, she did whatever she could to get me on top of the dune so that I could see the water. I never thought I would get to the beach let alone on top of that dune. Yet, she managed to do it, even if it ended up her carrying me. She really made my day, but unfortunately I felt like “Cinderella” because just like Cinderella had to be out of the ball by midnight because the magic would end and everything would turn back into their original form and she would transform back to her original life, the same happened to me. Once 2 O’clock arrived, it was back to my “disease” life because I had to return home and become locked and succumbed to this disease. I had to go back to living around the clock of taking meds, vomiting, etc. But, it was amazing while it lasted. It was certainly a day I would never forget.
In the meantime, I have also been trying to help my dad out and try to bring him in new business. We really could use the money and I want to also feel like I am doing something ‘productive’ and contributing something. Even though I can’t be the ‘doctor’ that I always dreamed that I wanted to be since I was a little girl, at least I can still kind of make a difference by hopefully making a difference in his company. Therefore, I have designed him new business cards, magnets so that people can put them on their refrigerator and know who to call for the best pest control and termite control company, pamphlets that tell about the company and bugs to give to customers, etc. I also redesigned his website, and hopefully it will be better than ever. When it is all done, I will share the website address with you so you can take a look.
I know we don’t have money, but my dad has been paying me slightly for all the work I have been doing for him. Even though it is minimal, I am putting it on the side for headphones. When I first started going into comas, I used to always bring my iPod into the room so that I could listen to music. In this way, it kind of kept the bad dreams away since ketamine notoriously known for causing them. However, ever since my dad has been allowed into the room, I have stopped bringing them because I like to hear my dad. However, music really did make me relax. With everything that has been happening to me lately and all the stress, I was thinking that I should possibly listen to music again and it would help. I can’t sleep or anything because of the pain and I was thinking about maybe the music would help that as well. However, I used to have earbuds, but they aren’t really good anymore. I have had the same pair for over 15 years. I guess nothing lasts forever. Anyway… I have wanted these headphones for a while by Sony or dr. Beats but unfortunately they cost money… money I don’t have. However, the minimal money ($10) my dad has been giving me each week for payment has been going towards this. However, it will take forever at this rate. I know there are definitely other headphones I can buy, but I really have liked these and I know if you buy good, you will enjoy it. Plus… I never really treat myself to anything; I really want to buy myself something nice for a change.
I really can’t wait to see the movie called “OZ the Great and Powerful.” I loved the movie “The Wizard of Oz” since I was a little girl and watch it every single time it is on. However, since I can’t go to the theater to see it, I guess I will just have to wait until it comes out on DVD.
I am also supposed to be leaving for California on March 25th. However, due to the lack of funds, we are not sure if we are going to be able to go. We are supposed to be going to California to see the neurologist since he is one of the very few neurologists that really has knowledge as to what is going on. I have been experiencing a lot of new symptoms such as my face going numb and feeling like I have hair stuck to my face because of electrostaticity, as well as how much worse things are getting (discoloration), so we wanted to see what was going on. He originally didn’t have appointments until August, but he was making an exception and fitting me in then. However, with the lack of funds, we don’t think we are going to manage to be able to go. It stinks that we have to fly across the country for just an appointment, but we really have no other choice since there really aren’t doctors that are really knowledgeable about my complex condition around here. It is all part of this horrible disease.
I am also supposed to be scheduled to go back the end of April to California to undergo another coma and surgery, as well as to be tubed because they are trying to buy time. I will be there for at least two weeks, but of course that depends on the fact if we have money as well. We have thought about canceling the March trip and postponing the neurologist until this end of April trip, but we don’t know if it is such a good idea. Besides the fact that we don’t even know if the neurologist can see me then because he was ‘fitting’ me in his schedule for March, there are plenty of new stuff going on and a lot of things worsening that we really need to find out what is going on. We all know how easily things get out of hand and therefore, it is imperative to get a grasp on things as soon as possible because things easily worsen in me and can easily be a life or death difference. I am rapidly deteriorating as well and we don’t even know if at this rate I will make it to the end of April. So… we don’t even know what to do. Perhaps he can also do something to help me because maybe I am deteriorating so rapidly because of something he can help? We just don’t know what to do because the funds are not there (not to mention the toll it takes on my body physically).
I know I have asked in the past and must sound like a broken record by now, but I really need help… more now than ever. It is really getting impossible to pay for treatment. Even with cuts in treatment, it is getting impossible to even receive the essential treatments that I need. Even getting a simple blood test is getting too expensive. The cost of this disease is just getting to great. If you can please do anything at all… whether it is to donate or spread the word and bring attention to my site, I would really really really appreciate it. Please help me because I need all the help I can get, I really honestly don’t know how much longer I have even though I am trying to hold on as long as possible.
So… that appears to be all. Like I said before, I am undergoing the coma tomorrow (Thursday), so hopefully all will go well. I have 2 upcoming trips to California planned. Well… I will keep you posted on everything that is happening.