Well we are off!! Just figured that I would update you on the plans that are happening this weekend and what is doing with going to HOPKINS.
Well… it looks like we are heading to HOPKINS on Monday in Baltimore, Maryland. Unfortunately we are forced to be leaving at like midnight because we cannot fly like we were expecting to and planning to. Due to the expenses and such, we had to make cuts in every which way possible and therefore, one of the ways that we had to make a cut was in the way of getting to HOPKINS. I desperately need to go because I am deteriorating really badly. The truth is that if I don’t get there… who knows what is going to end up happening because I am really getting bad. Not only am I in severe pain, but also I am really weakening and deteriorating. I am only weighing in the 60s, my BMI is nonexistent, I am bleeding in my GI tract, I can’t eat, I cannot go to the bathroom, I am literally fermenting and rotting because I can’t move things through me like whatever little food I do take in and all those huge powerful meds I take, and so many other problems are happening due to my failed GI system such as it is causing my other organs to fail because of the extreme pressure that it is putting on my other organs (even my heart) and causing my bloods to be bad and everything. It is also causing me to aspirate a lot and therefore, I am literally drowning in my own fluids. It is really horrible. Dad keeps saying to hanging in there because we are almost there at HOPKINS, but the truth is that even though HOPKINS is only a day or so away… it still seems like it is forever away.
So we are headed to HOPKINS in hopes that they can help me. I am going in search that they can because we have numerous appointments. I have appointments for my neurological disease and for my Gastroparesis as well. Supposedly the doctors that I am seeing for my Gastroparesis are the best in the country, so hopefully they will be able to help me. The other doctors in the country actually call the doctor that I am seeing “the guru!” So… my fingers are crossed so much that something can be done because unless something is done and done soon… we really fear the worst.
I desperately need the multivisceral transplant, which means that I need the transplant of the stomach, small and large intestine, pancreas, and spleen, but the transplant is very radical and risky… and extremely dangerous. We really hope that we can avoid that as much as possible because we don’t even know if I will be able to survive it to be honest with you. It is very dangerous and risky for a ‘normal’ person… let alone someone as sick as me. Some of my doctors are saying that I am “too sick right now to even undergo it and if I do undergo it… I will immediately die.” Yet, if I don’t have it immediately, I will die as well. So we are really against the wall. Hopefully this doctor that we will see at HOPKINS will have some further option or will have some way of helping. You know?
So… we desperately need to get to HOPKINS ASAP. There really isn’t any other way because we can’t put it off any longer. Even though we really don’t have the funds to go… we really can’t stall it out because if we do… I probably won’t make it. So… we have tried to make cuts in any which way possible just to get me there. Therefore, one way we tried making a cut is by how we are getting there. Even though I ideally need to fly there because sitting in a car for that length of time for me is really impossible and really causes me severe pain and exacerbates my condition, we really have no other choice. In addition, whereas it would really be better if we arrived in Baltimore on Sunday because the appointments begin Monday morning, we are first leaving Monday morning very early so that we don’t have to pay for an additional night at the hotel. So… not only is it going to take a lot out of me with the traveling because I am traveling in the car for that many hours, it is going to be even harder for me because shortly right after we arrive, I have to go straight to my appointment instead of being able to rest for the remainder of the day (or at least for awhile) until I have my first appointment. I know it doesn’t seem like I would really be ‘tired’ or have to rest much after sitting in a car for that length of time because you really don’t do anything, but for me I do have to rest because it really takes a lot out of me to travel. It really causes me even more severe pain (if that is possible) and really works on my entire body.
I just hope that I will be able to make it there! I know it doesn’t seem like such a huge dilemma or problem to get there because you can just drive, but for me… it is really horrible and a HUGE problem. It is really going to take a toll on my body. We are really going to load me up on medication before we leave and hopefully between loading me up on medication and it being like midnight, I will be able to maybe “sleep” through the trip. I just feel bad for my dad because he will have to literally drive throughout the entire night just to get us there because Baltimore isn’t exactly around the corner. So… you know dad will be resting today in preparation of the trip. I just feel bad also because his back isn’t the greatest and he also can’t sit in the car for great lengths of time. But, he said that he would do whatever he can to get me there because he knows how desperately we need to get there.
We did have an offer of someone to fly us on a private plane to HOPKINS. However, we couldn’t take the offer because of the weather. As the plane was a Cessna, it wouldn’t fly if it was snowing or freezing rain, and with the weather we have been having lately… we really couldn’t take the chance of it not flying and getting us there. The pilot told us that we really wouldn’t know for certain if we were able to go or not until that day that we were supposed to leave, which was Sunday afternoon, and we really couldn’t afford to wait until the last minute to know because we desperately needed to get there. We really had to get there no matter what and since we didn’t know definitely that we would be able to get there, we really couldn’t chance it. You know? Plus… even though we might have had a flight to get to Baltimore, we really didn’t have a flight back. We would have to wait and see if someone would be willing to take us back to New York and therefore, between the weather being the way it is and then not even knowing when and if someone could take us back later on in the week when we need to come back… we thought it was not the greatest idea. You know? Plus… we also figured that we could cut costs as well by eliminating staying a night by driving because we would be leaving Monday morning at midnight instead of leaving Sunday, which ideally should have been when we left.
I am kind of wishing that we could have taken the plane though because it would have been a lot easier on my body. The trip would be a lot shorter for me and the pain that I will probably be enduring during this trip would be a lot better. I know that by driving to HOPKINS, I will not only be suffering physically more in the car, but my body will be ‘paying’ me back more afterwards for what I am putting it through. So… I am really not excited about what I will have in store for myself even after I get there. But I understand how it probably is the best option considering the fact that we didn’t have a return flight set up and we really didn’t know how the weather would be either (so it wouldn’t even be guaranteed that the plane would fly). Plus… those planes aren’t really the safest anyway. After all, a piper just landed on the Major Deegan Expressway today in an emergency landing. Out of all the times it had to happen… it had to happen the day before I was supposed to leave. Why is it that things always occur when you are about to need it? So I guess considering the circumstances and everything… driving is the best option.
Even though we are cutting costs by driving, there are just so many more costs to endure though. Not only do we have the medical costs that are astronomical when we get there because of all the tests and appointments and such, but we still have to worry about the cost of gas (which is like $50-60 a tank and it will easily cost us 2 tanks… 1 each way), hotel, parking, etc. The hotel is nice enough to work with us regarding the price of the room, but the cost of parking there is astronomical. I can’t believe how much parking for the car is per night, as they want nearly $40 per night. Can you believe it? Gosh… not only do hotels make a killing when you stay there because the amount they charge for the room is a lot, but the price for parking in their own garage is ludicrous! I think that if you are parking in their garage… everything should be included. Don’t you agree? In addition, we also have to worry about food and such. So… it just adds up and adds up.
We have tried to make whatever cuts that we can and we did whatever we could to try to get me to HOPKINS. I feel really bad because my family is really suffering because of me. In order to get me to HOPKINS, we didn’t even pay the mortgage. I am really scared because we have been having such a hard time paying our bills because my medical bills are astronomical. Even putting food on the table has been a difficult task. I never thought that I would be saying that the weeks that we are able to go food shopping and have food on the table that I feel extremely lucky. To think that I always took that one thing for granted before all this happened. It just shows that you can never take nothing for granted because even the simplest thing and the very littlest thing that you always think that you will have ALWAYS can be taken away from you in a heartbeat. There are no guarantees in life and I definitely have learned that through this illness.
We have really made cuts even in my treatment, but even with those cuts… the cost of my treatment is so high. I desperately need so much treatment and I can’t even get it because of how much it costs. I really need the help of others because we definitely can’t afford it on our own. Yet, we are hoping and praying that the media picks up my story or something so that others know about it and others can possibly donate, but nothing has really come about as of yet. But I am still not giving up hope as of yet. So… whatever you can do to facilitate that everyone else is aware of my condition and how desperately funds are needed, I would extremely appreciate it. The website that people can donate at is at http://www.Gofundme.com/FallonMirsky or there is donation information at http://www.FallonMirsky.wordpress.com.
So… I will let you know how Hopkins goes as soon as I have more information regarding that. I just hope that we make it there because I am really doing so horrible. Dad keeps telling me to “hang in there because we are leaving in a day” but that one day seems so far away and so long. Anything can happen during this time. After all, when I had surgery the last time, my jaw literally collapsed and things went from bad to worse in the last four hours before I went to the hospital. I only fear that the same thing is going to happen this time. I just gotta make it to Monday.
I have also been busy with getting things situated and finalizing with Mexico, as I am in desperate need of getting there and having that ketamine coma there. With the holidays and such, it has been a little difficult talking to him and getting in touch with him. I have been trying to call him tonight, but I haven’t gotten through. Perhaps I will speak to him tomorrow or Monday at the very latest.
I desperately need to get to Mexico. That is the trip that I really am holding out for because that trip holds the chance for me to be “cured!” It is the only chance where I can receive that special ketamine coma that can potentially put my entire disease into remission. Whereas going to all these doctors in the United States are helping the individual problems such as the Gastroparesis and neurological diseases, the ketamine coma that I will undergo in Mexico will hopefully take care of everything all at once. It will reset my entire body such that it will hopefully put the entire neurological disease, autonomic dysfunction, Gastroparesis, etc. into remission and it will hopefully give me back my life. It will also hopefully allow me to eat again and not make me have to undergo that rare, radical, and dangerous transplant. But unfortunately, not only is the coma very radical and risky and only can be done in Mexico, but it is extremely expensive, as it will cost me over $50,000 and I will definitely not be able to afford it without help from others. So… it is really important that I receive that attention from the media because I need my story to be known so I can get as many funds donated as possible.
I am really hoping that the trip to Mexico will work out. My birthday is coming up, as it is February 7th and that would be the best birthday present I can ever get. It would be great to be able to be able to have the coma and wake up for my birthday with a new body. It is hoped that I will be able to have the coma a the end of January or beginning of February because I am doing so horrible and need it as soon as possible because I am deteriorating so much. However, it is also contingent on the fact that I can afford it and that our passports arrive. Our passports should be arriving hopefully soon and I am hoping and praying that I will also have the funds soon. So… I am hoping that I will be able to undergo the coma in the latter part of January or the beginning of February. But of course I need the help of others in order to make that happen. So again… if you can do whatever you can to facilitate this and spread the word… it would be much appreciated. Of course prayers are extremely helpful as well and extremely appreciated.
Well… I guess that takes care of the medical treatment talk. I can’t wait for this winter season to be over. But I honestly think that this “winter” has actually just begun. It has been so brutally cold lately and therefore, I can’t even go outside. Not only does the cold affect my illness because it causes me severe pain because it constricts everything and I am so hypersensitive, but I have to be extra careful because I have no immune system and I literally can catch “everything.” The chance of me catching even a simple cold is so high and I have to be extremely careful because the littlest thing is magnified for me because of my condition. Therefore, the littlest cold is like catching the flu to me and can easily cause me to be hospitalized. I have no body fat on me and with the illness also being autoimmune and such… it doesn’t really help.
To make matters worse, I hate the snow. Even though the snow is gorgeous to look at, I shriek when I hear that snow is on the way. I hate when it snows because it means that I am stranded basically even if I have to go out. I can’t walk, as I am on crutches and therefore it isn’t so easy to walk in the snow with crutches. They have yet to invent snow boots for crutches. In addition, when it snows, it means it is really cold outside and everything usually freezes. This also causes me a lot of problems because I have to be extra careful. Not only can a normal person easily fall on the ice, but also being on crutches causes me the added problems of falling. I must say that I am pretty good at maneuvering with the crutches and I do impress a lot of people with how good I am with them, but it is still a HUGE risk to go out with them when it is snowy and especially icy outside. So I am kind of really stuck in the house when it snows or rains and it is extremely cold.
I can’t wait for the time when I am better because I can’t wait to be able to play in the snow again. I can’t wait to be able to go out and help my dad shovel and such. You think that I would be happy because I get out of “shoveling” and helping to clean up the outside. However, the truth is that I would do anything to be able to help. I kind of miss it. I miss the old days when I used to go out and help shovel and such because not only would we be cleaning up, but also my dad and I would have snowball fights in the meantime. My brother and I would also have our own fun as we would go sledding and make snowmen and snow angels and have our own fun in the snow. When we were little, we used to use our little hill that was maybe 3 ft. high on the side of our house as a hill to go sledding down. Even though it was so little and it ended up with smashing into the house, it was a HUGE hill to us and we had a great fun time too. So when we couldn’t get to the park to go down that HUGE mountain of snow, we would use our own hill and it was just as fun and just as good! Gosh… I guess when you are small, you can make anything work and can make anything fun.
We would also make the best snowmen. A snow day would not be the same if a snowman wasn’t made. Every time it snowed, we would make a snowman no matter how small it was. We would then use carrots, licorice, and bones and whatever else we could find for the face. It was so much fun.
I miss the days when we would bundle up and go out to have all this fun, and then we would come in to have hot soup and hot chocolate. I would do anything to be able to relive these days again. But unfortunately we can’t move time backwards. I can only hope that I will someday be cured and I will be able to have this opportunity to do this stuff again.
In the meantime though, Max loved the snow. He couldn’t stop wanting to go out. He would keep begging at the door to be let out and he went on more walks that day with my dad than I could count. My dad surely got a lot of exercising that day because of him.
I also have a turtle named GEORGE and he was even interested in the snow. Of course he couldn’t go out, but he loved to walk around and look out the window at it. I guess everyone seems to love snow!!
Because of the snow, my family got to stay home together. My dad didn’t go to work and either did my mom. My dad is so funny because ever since we got him the iPhone and got him to join the “technology age”… there is no stopping him. He is literally addicted to his phone. He swore he would never leave his “flip phone!” In fact, he was really upset when we got him the iPhone because it wasn’t the “flip phone” and he had absolutely no idea how to use it. But he surely has come a LONG way because is so good on it now. He is so funny too because he loves to check his email and his LINKED IN account. He loves to see how many “contacts” he has and how “popular” he is. He really gets a “high” on that. In fact, he is so addicted to his phone that all we ever see him do is check it. He even checks it as soon as he wakes up in the morning and the last thing before he goes to bed. I told him, “In order to talk to him, I literally have to ‘facetime’ him or text him!”
Well… I guess I better get going. There is so much to do and I am not really feeling well. I have less than 24 hours until we leave and there is so much to do. I will keep you postedwhen I get down there and let you know what happens. Hopefully I will have good news. Keep your fingers crossed. I only wish that it was springtime or summertime because at least when it was that time we would be able to sit in the harbor and watch the boats pass. Now that it is cold outside and wintertime, I don’t think we will be doing anything but sitting in the hotel room this time. Even though I really can’t do anything because of my condition, I must say that when we went to Baltimore in the warmer months, I did enjoy sitting by the harbor and watching the boats since the hotel is right on the Baltimore harbor. However, I guess I will just have to watch the Harbor now through the view of my hotel room, but I doubt that will do any good because I doubt anyone will be outside especially in this weather. I am sure it is going to be totally night/day from when we were there in the warmer months. But like my dad says “we aren’t there for a vacation!” But the difference is that it really relaxes me to watch the boats and such… especially since I used to love to go to the beach when I was younger and so wish I could go back there now. I haven’t been to the beach in the longest time and miss it.
So… I guess I will be watching movies and reading to pass the time since we really can’t do much else. If you have any suggestions on any good books or movies to see, please let me know.
I just wanted to share also a picture of me. With everything happening, I haven’t been doing really well. However, I was fortunate enough to have someone try to make me feel better today by doing my hair because after all… if you look good, you feel good. So they did my hair all with curls and everything. It looked so pretty. I never felt so pretty before. I only wish it would have lasted forever. But at least it made my day! Thanks for bringing some happiness into my life!! I don’t get to feel “pretty” very often!!
Well… talk to you soon! Wish me luck.