I know that I just finished writing an update, but of course there is more to say! I hope you don’t mind another update already, but I want to share the newest info that I have.
First if all, I received by bloods back today. I had to have them drawn again today because of how horrendous and critical they were last time, as the values that regulate my heart were not good and were in the critical range. In fact, it was at the point that my heart could literally suffer an arrhythmia or cardiac arrest at any moment. I also needed to have my bloods done so that I can have the CT performed on Monday that I need to further diagnose what is happening with my legs and why and my left leg especially is having severe edema, discoloration, and burning.
Well, I received my bloods back and it so happened that my bloods dropped even more. I can’t believe how low they are. This is really a matter of life and death at this point because to have the values that I have, it is extremely critical. The doctors don’t even know how my heart is continuing to beat without going into an arrhythmia or cardiac arrest. I never had blood readings that read so low.
I should really be in the hospital. I desperately need to be helped and stabilized. However, there is no hospital in the local area that can really help me because my bloods dropping is due to an underlying problem such as my autonomic dysfunction, neurological condition, and severe gastroparesis. Therefore, I really need to get to a hospital in California or someplace that can better know how to handle my condition. The best place of course would be to go to Mexico and to have that Ketamine Coma already so that I can be hopefully “cured,” but as I stated in past blogs, we don’t have the funds right and it isn’t going to happen if we don’t have the money. So in the meantime, I am basically on a “waiting” game and hoping that I will be able to raise enough money and hold out before I expire. I am like a ticking time bomb waiting to detonate and I can’t receive the needed treatment that will save my life and stop the detonation because I don’t have the funds to do so.
So since I obviously can’t get to the ideal place right now, which is Mexico, I have to make do with what I can do, which is go someplace within the United States that at least can help me. However, there isn’t any local hospitals that can really help me and therefore, we really need to get to California so that they can help my Gastroparesis. They are definitely not Mexico, but they are the next best thing and they are definitely better than going to a hospital around here because no one knows anything about my condition around here. However, California of course isn’t around the corner either nor is it cheap. So I still have the problem of having to pay for it and also that I have to travel across the country.
I can’t go to a hospital in the local area even though it is thought that they might be at the very least able to “stabilize” me. Going to a hospital here would not be such a good idea because since they don’t really know how to treat my underlying condition and such, they can easily worsen my overall condition. My disease spreads like a wildflower and easily spreads through trauma. Since I will definitely need special medication through IVs because in order to stabilize me it isn’t a matter of just giving a pill or a simple shot, but I will need a very potent solution to help bring up my bloods that even the normal person would find uncomfortable and painful. The stuff that I need to bring up my blood values will literally burn up my veins like crazy and it will cause me great distress. That is why I would definitely need ketamine while I had this done. Ketamine would not only help me deal with the pain, but it also carries with it a special property that hopefully ‘contains’ the illness and stops it from spreading or slows it down at the very least. Yet, no hospital in the local area really knows how to administer ketamine in this way around the clock. It is reality complicated and goes far more into this than I am going. But to put it shortly… I really can’t go to a hospital here because they are not equipped to handle my condition and they will only make me worse.
So I don’t know what we are going to do. I am deathly scared because I know that my heart can literally “give” at a moments notice. They tried to raise my heart meds, so we are hoping that it will help. Of course it doesn’t help when some of the meds that I take to raise my bloods are in the ice pops that I eat and since I have been having more trouble than ever trying to eat them, I haven’t really been able to take all the necessary medication that I need to keep my bloods up or even bring them up. That is just one more reason why I need to go to California.
I need to get to California or to Mexico so that they can work on my GI tract so that I can eat or something. They really need to work on my severe Gastroparesis because since my entire GI tract is shut down, I cannot eat or drink basically anything. Even the littlest things that I have been living on such as egg whites and ice pops (which have the medications in them for my bloods), and ice-cream are getting impossible to get down. So since I can’t get the ice pops down, I can’t get the medications to bring up my bloods down. In addition, due to the severe Gastroparesis, I can’t even absorb my medications that I take in pill form. So it just isn’t a matter of just that I can’t ‘eat or drink.’
I don’t know what is going to happen now. I am crossing my fingers that there will be an answer to all this. I know that I desperately need to go to Mexico or at the very least to California, but I also know that we need money in order to do that. I am really hoping that we receive donations and help from others because I am literally on the verge of dying. I can literally die at any moment from an arrhythmia or even cardiac arrest.
So I am crossing my fingers that nothing will happen and I will make it at the very least to my scheduled appointment in May to California. We are scheduled to leave on May 13th to go to California and then we are hoping to go to Mexico in July for the radical Ketamine Coma. But like I said previously, it is all dependent upon funds and therefore, I really need help from others.
In the meantime, I have been trying to raise money and awareness for my condition. I have been working with a production team that is working on producing a movie that is supposed to be coming out in the next year or so. I was very fortunate to have them select me to do an interview in their video. It is a Scott Goldberg Film called “Moirai.” In addition, they have been so willing to help me in any way possible in trying to find ways of getting me to Mexico as well. Below are some pictures of the pictures that were taken from day we did the shooting. They are making a video as well, and I will post the video as soon as it becomes available. I am so thankful to all who made that video and pictures possible, and I am so honored that they decided to have me do an interview for movie.
The race has been long and I hope the finish line is coming soon. I don’t know how many hurdles I can keep jumping over and making it through. I really need to get help and help soon. I can’t tell you how much all the support and encouragement that people has given to me means to me. It is this support and encouragement that keeps me going and helps me get over all those hurdles in the road.
Well… I just wanted to update you on the latest. Monday morning I have the CT scan first thing in the morning so perhaps we might have more answers as to what is happening with me. We really are wondering what it could be because it could be related to my neurological condition such as my Reflex Sympathetic Dystrophy and autonomic dysfunction, my heart failure, my proteins spilling out because of my Gastroparesis, a blood clot such as deep vein thrombosis, or a combination of them. So fingers crossed!
Remember… I really need help! To help, donations are accepted at http://www.gofundme.com/FallonMirsky. Please spread the word!
Until Next time. Happy Passover and Happy Easter to all!!