I just wanted to continue where I left off since I have some things to add to yesterday’s message! To begin with, I have another ketamine coma/infusion in the morning. Thank goodness because I really desperately need it. Not only do I need it because it is the only break I get from the most excruciating pain you can ever feel, a pain that never leaves you, and a pain that irks you 24/7, but I am really needing a break from all that has been happening. I have been busy not only suffering and rapidly deteriorating, but I spent the day today planning my emergency trip to Florida. Unfortunately, I will have to make an “emergency” trip to Florida on Monday and therefore, I was busy today getting everything prepared and situated for it. In addition, I had spoken to my doctors even more today and found out additional news that really scares me.
I really need this ketamine coma/infusion to work because I am suffering so much. I can’t believe how bad things have really gotten. I never would have believed in my life that it was even quite possible for things to really to get so bad. I didn’t even think it was humanly possible. My parents keep saying that I am being “tested” for something but I don’t know what on earth that could be because what I am being put through… no one should ever have to experience. It is the worst thing that anyone could ever undergo and it is like living in HELL 24/7. It has gotten so bad lately that at times I sometimes even have asked my parents and doctors to just “let me go” already because I can’t take it anymore.
The pain and suffering is unrelenting and I just honestly don’t know how much more of this I can take. I go through everyday and watch my life just pass me by. Everything that I worked for throughout my years… my dreams and aspirations… are all put on the back burner… as I am stuck being all alone trapped in this horrendous situation that is inescapable. Along with the extreme physical pain that has accompanied my illness, have lost my ability to become a doctor, my social life, my money, and my lovely personality. I had so much going for me and I spent much of my school years working towards my future… a future that I never thought would never be able to happen. I had a “A” average in high school, was attending New York University, and had it planned that I was going to become an excellent doctor so that I could help others. I also had it planned that I would have a husband and a family. I had so much going for me and there was so much for me to experience in the world that I had not yet experienced because I was just starting out on life. Never did I think for once that I was going to be robbed out of everything and basically have my entire life taken away from me. Never did I think that I was going to basically be confined to a jail cell of pain, suffering, and deterioration.
It is the most horrible situation imaginable because it is so incredibly painful. I suffer 24/7 from being in pain, as I feel like battery acid is being poured all over me. I feel so weak and I can barely have enough energy to get off the couch. All I can say is “Don’t touch me” because even the lightest touch sends my pain soaring further. I have to be especially careful because even though bumping against a table or wall that wouldn’t hurt a “normal” person, it can bring tears to my eyes, doubling me over in pain.
I cannot deal with this pain. I constantly feel like my bones are being snapped in half or being crushed, which is not a pleasant feeling at all. My muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out. I even get painful muscle spasms that worsen especially if I push my body past its limits, which is basically by doing anything at all. The spasms are worst in my left leg, but the right leg will jump in on the action if the other one gets going. It can last hours non-stop. Even though I try to put up a strong face and try to hide the pain, the pain wins at times, making me cry an ocean of tears and longing for someone to take it all away.
This disease has blazed a trail through my entire body and has literally taken over. It has touched everyone one of my limbs, my hips, hands, feet and shoulders… even my torso, back, face and internal organs. Not only do I suffer with excruciating pain in that I feel like I am being roasted on a fire, but I also suffer from my feet, legs, hands and arms turning a rainbow of colors. The doctors are so fearful that my limbs might have to be amputated eventually because of the extreme lack of oxygen.
Not only has this disease affected me in those aspects, but also it has left me with severe autonomic dysfunction and severe gastroparesis. Gastroparesis is another condition that involves the stomach not emptying itself of food in a normal fashion. This should not be a surprise since the GI system has high-energy demands and is made up of many muscles, nerves and glands. Since the sympathetic system tells the GI tract to shut down (no time to eat – crisis is here – danger), digestion more or less stops. When the parasympathetic system comes on much later, then blood flow to GI tract increases and digestion is now allowed. Common symptoms include dysmotility – which actually means “bad movement” – so the gut is either moving too fast (resulting in diarrhea) or too slow (resulting in bloating and constipation). Dysmotility could occur at any level of the GI system (i.e. mouth, esophagus, stomach (delayed gastric emptying), small intestine (malabsorption), large intestine (irritable bowel)), but for me, my entire GI system is basically ‘dead.’ So have dwindled down to weighing only in the 60s and to a BMI that is nonexistent.
Even though I have tried not to let my illness rule me, as I rule it, it has been an incredibly tough journey. Not only has it been tough physically, but also it has been tough emotionally. If it weren’t for my loving family, I wouldn’t be here today. I endure whatever I have to, because giving up is not an option. Each day is an adventure, with new worlds to explore. I take it one hour, one minute, one second at a time supported by the people who love me because of who I am… with this illness and all.
Every time I think I see a light at the end of the tunnel, and a possibility of getting well it turns out to be a train… whether it is because it doesn’t work or because I can’t get it because we can’t afford it. However, in the meantime, I have made it my goal in life to share what I have learned and to help people learn about this horrible mysterious illness.
That being said… I guess I should tell you the absolute latest about what has occurred today. As I started to let you know, I was busy making final arrangements for our “emergency” trip to Florida. It is especially hard to do this when you don’t really have the finances or funds behind you. As my disease and treatment is incredibly expensive, we have been having difficulty paying for treatment for me… even despite all the ‘cuts’ that we have made in our lives.
Unfortunately we have no choice but to go to Florida on Monday because it is an “emergency!” We are trying all different ways to find the means of getting there financially, but you really can’t get water from a dried up well. Even though we are making the necessary arrangements because it is a necessity to get to Florida, we are hoping that in the next few days that some donations will come in. Therefore, if you can please send a link to my www.gofundme.com/FallonMirsky page, I would really appreciate it.
I did speak to my doctor in Florida today and he was quite frank and honest with me about how bad things have gotten. He told me quite bluntly how he told me in the past that I was a “ticking time bomb waiting to go off and not it looks like it is that time.” He told me how he doesn’t even know if it is safe for me to even fly to Florida, but unfortunately, there really is no other choice in the matter because there is no hospital here to care for me.
When I spoke to the doctor, he made sure that I knew how sick I really was. He had me constantly acknowledge everything that he said and make it known that I understand everything that he was talking about. I honestly felt like I was being recorded or something just in case something would happen to me so that he was all ‘covered.’ I do know that he is the type of doctor that when you do see him in person that he videotapes everything so that there can be no question of anything that he says or what happens. He makes sure that you understand everything that he says on video so that there can be no “he said… she said.” He makes it so that he doesn’t leave any stone unturned when you see him and crosses every single “t” and dots every “I”. He is one thorough doctor. So, in a way it wouldn’t surprise me if I were being recorded because I think he would do anything to ‘cover’ himself. I guess I can’t blame him though because I wouldn’t want to jeopardize my license or anything either… especially when I am dealing with someone as sick and life threatening as I am.
I just couldn’t believe how blunt he was with me. Even though I tried not to cry and tried not to let it bother me on the outside, it really did bother me on the inside. Whereas I didn’t show it on the outside, I was really crying and dying on the inside with the news he was telling me. He told me, “Even though you are not having blood coming out of your ears, you are in really serious condition and dying. You are in a life threatening crisis and really need serious help immediately.” He also said that his main concern was to stabilize me ‘electrically’ because he said, “something is especially going wrong with your body electrically and I am afraid it is going to go into power failure.”
As much as I wanted to make a joke of things and pass a joke because that is how I deal with things, I knew that if I did something like that, he would go bizerkus because he was really serious about what was going on and was upset with all that was happening. He was really concerned and he literally made me acknowledge that I am taking a huge risk with traveling to him. He also had me acknowledge that even when I see him, the closest hospital is 20 minutes away. Even though I knew all this already, he had to say this and make me aware of the situation and say so too because this was his way of covering all bases. You know?
So… with all that being said, the doctor said that it was imperative that I come to see him on Tuesday morning. Originally my appointment was scheduled for 11 AM, but due to how poor my health is, he wanted to have extra time with me and therefore, he decided to have me come at 10:30 instead. So, dad and I are planning on leaving for Florida on Monday. I am really scared. Scared not only because I don’t know how we are going to afford all this, but also scared for the trip and what news I am going to be given. I recently heard about a kid dying on a plane from an underlying condition and I am so fearful I will suffer the same fate. But… like I said before… we really don’t have a choice in the matter, as I really have to go because there is no one around here that can really help me!
In the meantime though, I am going to have the ketamine coma/infusion tomorrow. Not only am I going to have that and hopefully all will go according to plan, but I also need to have an injection of Torredol because the surgeon that worked on my jaw and such wants to put me on Torredol and it can’t be started unless it is first given intravenously. Even though I am on a lot of other medications, he is hoping that the Torredol will help because it works in a different area of the brain. I know when I was in the hospital, the Torredol definitely helped when it was given in the IV. I am only hoping it will help now too.
I am also going to see the osteonecrosis doctor and pathologist on Thursday. It should be a very interesting appointment because the osteonecrosis in my jaw has been worsening and the surgeon looks like he might have to go back in and operate more. I guess I will know more after the appointment on Thursday. I am not going to jump to any conclusions because even though I am in so much pain, I really would hate to undergo more surgery for that because the surgery isn’t covered under the insurance. So… it would cost even more money, which is something we definitely don’t have.
Gosh… there is so much going on and we are leaving in just a few days. I just wanted to write and let you know the absolute latest. If you can please spread word of my website at www.gofundme.com/fallonmirsky, I would really appreciate it. After all, I desperately need help paying for treatment especially since I am leaving for Florida in a few days.
Please consider helping our family get through this incredibly difficult and emotional time. Even though we desperately need to go, we are of course in need of your help in order for that to happen because we don’t have the finances. The financial toll that the continued treatment costs have taken on my family are astronomical and have led to some very difficult decisions… some that no family should have to deal with. In the meantime, I have a busy next few days ahead of me. Next on the checklist is the ketamine coma/infusion tomorrow morning! Please continue to pray for me!