Although I have been sick for awhile and have posted on various sites, this is the first time I am posting on this new blogging site. I am trying it out. If you want to know what happened to be prior to this, you might want to check my “updates” on another site at http://www.gofundme.com/FallonMirsky. But, as of now, I hope to be using this site, so you can check back and see all that is happening with me, as my life is like a “soap opera!” There is never a dull moment!!
I haven’t really been doing too well lately.You know things have been really bad with me because I haven’t really “updated” my webpage. Usually I update it no matter what. However, due to my circumstances, there has been no way possible to do so. I have been so sick, weak, and in pain that it literally has been impossible to do so. I have literally been collapsing and don’t have the strength to muster in order to write. So… this is the first opportunity that I really have to write. I don’t know how much I am actually going to get to say because I am so weak and sick, but I wanted to try to let you know what has been happening.
Things have gotten really bad. I am really deteriorating. I am only hoping that I “bounce” back. But… although there have been times in the past that I have bounced back, this time it just isn’t happening. Things are worse than ever. I am so weak and sick that I am literally collapsing. I don’t even have the strength to lift up my head. Usually I am up the entire night, but nowadays, I don’t even have the strength to do anything. I can’t tell you how many times my dad keeps checking on me to make sure that I am still alive and that I am still breathing. Something really needs to be done and done quick because I am really deteriorating. Things just keep going downhill.
My bloods have also not been good. They dropped too. However, the doctor luckily didn’t put me in the hospital. However, there is absolutely no more “wiggle” room under no circumstances. The bloods are so bad that the lab literally called my doctor to tell them how bad they really are. The doctor is willing to give me one more “try” out because they really want to get me to California and they know if they hospitalize me, it could only cause more problems and probably would force me to cancel my trip.
Plus… I got the bad news that if I ever ended up in the hospital, I can’t go to the hospital on Long Island because no hospital really is equipped to handle me. I was told that they would “stabilize” me and then they would transport me to a hospital in the city such as Mount Sinai. I am way too complicated for the doctors and specialists here on the island. Even though the hospitals in Manhattan still aren’t probably equipped to handle me, the doctors believe that they are better than the ones on Long Island. It really bothers me about that because it means that I will be further away from home. That means it will make it so much harder for my parents to see me. I am petrified about going to hospitals as it is… now knowing that I am forced to only go to hospitals in Manhattan, it doesn’t make it better. You would think that with all the past hospitalizations that I had that I would be “used” to the hospital already, but it has gone in the other direction. I have become petrified of hospitals. I literally shake when I go in there.
I am supposed to be leaving for California Thursday, July 19th. However, my dad is petrified to take me to California in the condition that I am in right now because even though he knows it is the best thing for me, he is petrified that something is going to happen to me. He doesn’t know if I am “up” to traveling and he doesn’t want to come back to New York alone. I have really been suffering lately with breathing problems. My heart has felt weaker than usual. The pain has been out of this world. The trip that I just had from California really took a lot out of me. It certainly isn’t easy for me to travel, especially when it entails traveling across the country. The trip to California last time wasn’t even “easy,” as it was filled with many complications because of flight delays and everything. We think that the entire trip really took its toll on me.
However, it seems that we just got back from California and we are headed back to California now. We leave on Thursday because I have to meet with my new team of doctors, as well as to have a surgical procedure that will make it definitive whether or not I will need the transplant. The doctors are 99.9% sure that I am going to need the transplant, but without this final surgery, it is not 100%. The transplant team will be there for the surgery, so I am really nervous. They think that I am going to need a transplant where I will be getting a new small and large intestine, stomach, esophagus, etc. It is a very risky transplant that only 8 hospitals in the nation do. It is the transplant that carries the most rejection rate and it is extremely dangerous. I am really scared for it. They have only done about 200 or so transplants in this area so far and there aren’t that many people on the list. However, it is really hard to get a donor in a way because all the parts have to come from the same person. In addition, it is very important to get a very close match because 80% of your immune cells come from these organs. So… it is very important to get a match.
I just found out too that if I have to live close to the hospital for the transplant that we will be moving. I really don’t want to move. I hate to think that I am going to be forcing my family to relocate and close their business. I hate to think that I am going to cause my whole family to literally pick up their entire lives and move to another state across the country because of me. But, if I have to live near the hospital, we will have no other choice. Even though my new team in Cali is setting me up with a doctor at Hopkins in case there is an emergency (it is easier to be transported there or to be heliported there in an emergency), I will probably be having the transplant in Cali. However, it is too expensive to be living at both locations, so something is going to have to give. I can’t believe that all this is happening. I really wish I could make this better for my family because I don’t know what my family is going to do. Without my dad and mom owning the family business in New York, I don’t know how they are going to make a salary in California. Therefore, I don’t even know how we are going to make an income. But, I guess that is for them to worry about even though I am so very worried too.
But, we still have time to think of that because the first thing is to make sure that I need the transplant. I am having surgery on Monday, July 23rd to make sure that it is definitely needed. During this time, I will have numerous people in the surgery to see what is going on. It is an 8-10 hour procedure. I will be sleeping for the first 4 hours while they put the probes into my intestines and everything. Then, for the remaining 6 hours or so, they will be doing exercises on my intestines to further diagnose how paralyzed and “dead” they really are. I asked them if my father could be in the room for the last 6 hours since I will be semi awake, but they said “no.” They did say though that I should bring an iPod or something to listen to so that it can pass the time. I am really nervous because I never had surgery like this. I never had a surgery that was considered a “test” that lasted for this length of time. 10 hours is an extremely LONG time. But, at least we will have answers afterwards… I hope.
My dad tried to be really funny though because he said that he is going to be “touring” when I am going for the surgery. After all, he said that he couldn’t just “sit” around and do nothing for 10 hours. I know he is only joking, but still. I told him that I am going to write down the mileage on the car to make sure that he doesn’t go anywhere. He said that I am in “good hands” so it would be ok if he left. Of course he was only joking, but it wasn’t funny.
It makes me nervous that the doctors in California are counting down to the surgery, but it also makes me glad too. I guess it also means that these doctors really do care a lot if they are paying attention to when the surgery is actually taking place. I had a complication the other day and when I spoke to them on the phone, they told me that I should wait til I see them because they will do the injection (since that is the complication that I had) when I went for the surgery in “twelve” days. I couldn’t believe that they actually gave me the amount of days that I had til I had the surgery. To know the exact number of days til I had the surgery done… it shows that they really care and are paying close attention. You know?
Speaking of complications though, I had a very severe complication yesterday. I have a pituitary brain tumor that is growing. Unfortunately, the medication that I need to take for my severe gastroparesis is “feeding” the brain tumor and therefore, it is making it worse. The doctor had put me on injections to try to stop the growth of the pituitary tumor because it is causing a lot of problems such as eating away at my bones. My bones are so frail and the doctors are very afraid that I am going to get a life-threatening fracture. I am very fragile. In the past year, I already lost 16% of bone in my hip and 6% in my spine. That is only one year too; I have lost more bone other years. I have undergone bone infusions, but even though it was successful in building bone the first year, I have been continuously losing bone after that. However, the doctors insist that without the infusion, it would be a lot worse. They are probably right.
Anyway, they have to do something because the brain tumor is getting worse and really causing problems. Pituitary tumors grow from the pituitary gland, the master gland of the body, located deep in the skull. These tumors can affect the whole body by interfering with normal hormone production. As the tumor grows, it can cause a variety of symptoms including compression of nearby nerves, resulting in vision problems. It is not only causing problems with my bones, but it is causing problems with my eyes too. It is causing vision problems, as it is located right by my optic nerve. I am having really a difficult time seeing. I already have to wear prisms in my glasses that are extremely expensive. When I have to get glasses, the cost of my lenses alone are close to $1000 because the prisms are so very expensive
Since the doctors really need to take care of the tumor, they have a treatment plan for me that consist of giving myself injections on top of the injections that I already take for my peristalsis and gastroparesis. They are also thinking of surgery, chemotherapy, and radiotherapy. Gosh…. With everything else that I am going through… I really don’t want this to happen too. I hope it doesn’t lead to surgery and chemo and radiation. Even though I hate giving myself injections, especially when I already give myself injections for my gastroparesis, I hope that it stops with that. I am like a human pincushion. Plus… since I am so small and there isn’t a lot of fat on me to begin with… it literally makes it impossible to rotate the spots. Therefore, I have to put both injections literally in the same area, which is in my belly, which is not good. It is extremely painful because I am already hypersensitive due to my underlying neurological disease, which makes me hypersensitive to pain and magnifies everything. A simple needle stick is like someone sticking a knife through me.
However, we had a complication with the injection that the doctor gave me for the brain tumor. When I gave myself the injection, I immediately got extremely itchy. I also broke out in welts and had difficulty breathing. It wasn’t like I took a pill and could “throw” it back up either. I had given myself an injection, so once it was in me… I kinda was stuck. I was literally screaming “get it out of me.” I was having an allergic reaction of some kind to it. The parents ransacked the medicine cabinet looking for Benadryl so that they could try to counteract the allergic reaction, but you know that whenever you need something… it is never to be found. However, all that was found was one empty box. We literally tore though all the cabinets in search of the pills. We finally found one pill, but it expired in August 2011, which was a year ago. However, they always say that pills are good past their expiration date, so I prayed and hoped that it would do the trick. Even though it did work to a point, the injection still made me so very sick that besides the affects that it already gave me, I also became very weak that I couldn’t lift up my head and all I could do was get one word answers out. No way was I taking that pill again.
I called the doctor in California right away because this was not something to play around with. The doctor told me to stop the medication right away and that she would try the medication again when I went for the surgery in “twelve” days. It wasn’t like the surgery was so far off, so she said that I should just “wait.” She wanted me to wait so she could administer it in a controlled environment and so that she could see exactly what the reaction was. Therefore, if something should happen, she could see exactly what it was and she could handle it on the spot. Also, she wanted to see exactly how I was responding to the medication too and to make sure it was even a worthwhile medication to try because we were running out of options to stop the growth and the “power” of the brain tumor. She needed to know if this medication was even a possibility or something else needed to be done.
So… it appears that everything is now on hold til I go to California. I am off to California so I can have this surgery to see if I am a candidate for the transplant. I am also going to be meeting with a lot of doctors when I go there also. I have to meet with the Endocrinologist, the anesthesiologist, the GI doctor, the transplant team, the autonomic dysfunction doctor, the neurologist, etc. Gosh… there are just so many doctors to meet. I really got some “team” there. I really think they are great doctors there and if they are as good as the GI doc that I saw there the last time, then I am in really good hands. The only bad part is that they aren’t exactly located around the corner. Too bad they are located across the country.
Wanna hear something really funny? I have been really sick lately and therefore, I have been constantly asking my dad if he “thinks that I will be ok.” My dad is always saying that “he thinks so, but he doesn’t have x-ray vision.” My dad told me that he would have x-ray vision if he had special x-ray glasses. He told me that Bazooka gum used to give you the option of getting those x-ray glasses. So you know what I did? Through a great friend, we got him Bazooka gum to bring a laugh to him because this way he can know for sure if I will be ok or not. After all… no one knows better than dad.
This disease really has taken a toll not only just on me, but my entire family. I really wish I could make it better for them. It is particularly hard on my dad because not only is it killing him to watch me go through all of this, but it is also hard on him because he is the one who is taking me to all the appointments and such. He has to not only manage his work because he owns a business, but he has to take me to the appointments as well. When he doesn’t work, the business doesn’t go out and the money isn’t made. However, I also need him because without him, I can’t see doctors. So… he really has to make himself available in so many different ways. I am so afraid that something his going to happen to him because he is so overworked. He works every day of the week and for 20-hour days. There are only so many hours a person can work without it being dangerous. After all, he is no youngster. I just hope that nothing ever happens to him because I will never forgive myself. However, he doesn’t want anything to happen to me and I know that if something ever does… it would definitely kill him. In fact, even though I really want to get better for myself, I want to get better more for my dad than anyone else because I know how much it means to him. I see the pain in his eyes because he wants to help me out so much, but his hands are tied. I am so scared that I am not going to get well and something is going to happen to me. However, I am more scared that something is going to happen because I am scared that my dad won’t be able to handle it. I am more scared for my dad than for anything. Therefore… I can’t let anything happen to me. I really am my dad’s life.
I have been trying various ways still to raise money and hoping that my website will still bring in money. I am trying to help my family out financially in any way possible because I know how expensive this disease is and how much of a burden it is. However, it isn’t working. I am desperately in need of money because the cost of this disease is HUGE, especially with being forced to travel constantly across country. If you can think of any ways to bring in support or donations, please email me at Spunkyfal@aol.com and put FUNDS in the subject line. I have tried writing to numerous people, but nothing has come about. I have written to the media, magazines, television shows, even to lots of famous people. I even have written to the President and even to Queen Elizabeth even though I knew that it was pretty pointless and probably wouldn’t get anywhere. I just am so desperate, so I was willing to try everything and anything.
Well… going to go and rest. Can’t wait for later today because I am supposed to get my delivery that I ordered in California. I ordered Sourdough bread for my mom and brother in a shape of a crab, as well as sourdough bowls filled with the famous clam chowder that San Francisco is so notoriously known for. They may not have gotten the chance to go with us to San Francisco, but I wanted to bring some back to them so that they can taste it. After all, it is soooooo amazing. I never tasted anything so good. I only wish I could eat it myself because I remember when I went with my grandma many years ago, we literally lived on it. However, due to my gastroparesis and severe difficulty in swallowing (my esophagus is paralyzed), it literally makes it impossible to eat. I definitely couldn’t eat it out in San Francisco because I vomit basically everything I eat, so at least when it is delivered today, I will get to have some because I will be in my own house and won’t be embarrassed so much if and when I do vomit it up. So… in a way, this delivery of the bread and soups is for me too.
I am also making a BUCKET LIST on my phone. I am making a list of all the things that I am wanting to do when I get better. I know it sounds stupid, but this disease has robbed me of so many things that everyone takes for granted. I can’t do a lot of things and I am basically a “prisoner” in my own house. I never get to really go out because there is always a HUGE obstacle that prevents me from doing something enjoyable. I can’t eat; so going out to a restaurant is out of the question. I can’t really go outside unless it is the perfect weather because I am so sensitive to the sun, temperature, wind, humidity, etc. I can’t be in crowded environments because I can’t chance getting sick because I have no immune system and I catch everything. Plus, if I do catch something, it can literally kill me because everything is magnified for me. A simple cold is like the “flu” to me. Also, I can’t be in crowded places because I can’t be risked getting bumped into. I am in excruciating pain 24/7 and even the most innocuous touch sends even more pain throughout my body that will send me through the roof. So… there are just so many limitations that I have due to this wonderful disease and therefore, I have made a BUCKET LIST of all the things that I would love to do when I get better. When we go back to California this time, I would love to see the sea lions. I wanted to see them the last time, but my disease unfortunately prevented me from doing so. We made it halfway down the pier, but the pain from the wind was too much to bear and therefore, we had to turnaround.
I bought my dad new earphones for the plane because my dad and I watched movies the last time we went to California. Thank goodness I bought an external battery, especially with all those delays because that really saved us. Otherwise, we would have been so bored. I bought my dad headphones last time, but they weren’t ear buds. With the noise from the plane, they weren’t really that great. So… I went out and bought him ear buds this time so that he could better enjoy the movies. After all, I want to make it as easy for him to travel to California as possible because the trip is long and torturous.
Anyway…. Gonna get going because not feeling well. Talk to you when more news is known and I feel “up” to writing.