I am just having one of those weird nights, so I figured that I would write and explain a little what has been happening. I have received some bad news today and I will be heading in the morning to a vascular surgeon. So I thought maybe also it might clear my head a bit and let me sought a few things out because so many things are happening and I am so mixed with so many emotions. I am not doing well and things are continuing to get worse and worse. I can’t actually remember being pain free; I mean I can remember a date, but not the feeling. Pain has become the norm; it’s a constant companion.
I am having one of those nights where I want to get better so badly that it hurts. I want to get better so badly that all I can think of is all the things that I am going to do when I get better. I just hope that I am able to get that chance. I have been feeling really down lately to be honest with you… thinking about all the things that this illness has robbed from me. I don’t even know where to begin with what this illness has done to me.
I never thought my life would be like this. I can’t believe that once led an active life, as I figure skated, rode horses, and even played soccer. Yet, now I am totally incapacitated. The disease has taken over my entire body and even involves my inner organs, which is extremely rare, and doctors have confirmed that I am the worst case to ever exist. I used to have big plans. I wanted to get married, have a family, travel, become a doctor so I could help others, etc. But all this now is put on hold because of this horrendous disease.
I’m having trouble finding the words to even describe how horrible the pain is! If you name a type of pain, I guarantee I experience it. I get crushing, burning, tearing, stabbing, slicing, heavy, aching, pulsing, throbbing, shooting, boring, sharp, gnawing, stinging, splitting, exhausting, sickening, suffocating, terrifying, vicious, blinding, intense, unbearable, radiating, piercing, penetrating, tight, cramping, horrible pain. It’s all those things and more. Imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. That is how my entire body feels all throughout. RSD is ranked on the McGill Pain Index as the MOST PAINFUL form of pain that exists. To put it in perspective… Arthritis pain is ranked about a 18, Cancer pain a 24, Chronic Back Pain a 26, and then RSD is ranked a whopping 42 a pain that is worst than amputation, childbirth, etc. The only thing close to the pain I experience on a daily basis is the amputation of a finger and that is quick; my disease is 24 hours a day, 7 days a week. It is a pain like no other.
Right now every single muscle in my body is aching. My left leg is cramped up and curled into an awkward position. My skin is very sensitive and every time something touches my skin it’s agony. Deep in my arms it feels like there’s something shooting through them, tearing everything it passes, along with hot pokers being shoved into my elbows. Then there are my joints, they pop or crack with almost every movement, they swell, they’re stiff, I get too cold they stop moving, I get too hot they stop moving it’s a delicate balance.
I also have severe allodynia, which is extreme sensitivity. Now, because of the allodynia, any normal touch causes my pain; clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by me in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. I am totally sensitive to touch especially on my left leg and foot, and I have spasms throughout my body. I get spasms not only in my body but in my inner organs as well such as my bladder. It feels like all of the muscles are being torn off the bone. My left foot is so swollen that I can’t wear a sock or shoe. If I hit it on something, the thin skin will split open.
Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain. In addition to the enormous pain you are already experiencing from RSD itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer.
Besides being in pain all the time, there is so much else that has been robbed from me. I’ve been on crutches for the longest time and it is only a matter of time until I am forced into a wheelchair, which I have been fighting. I’m unable to weight bear at all on my left leg and I can stand on my right leg for a very limited time but only with a stick and physical support from another person. My left leg is currently in constant spasm. I can’t eat or drink! I can’t shower! I can’t be touched! I can’t sleep! It constantly feels like I am being stabbed with a hot poker. If the weather is humid, my skin turns bright red and is hot to the touch. I constantly get strange glares because of the changes that occur in my skin color. My feet also get extremely cold really quickly, but this isn’t just normal cold, as I am cold right down to your bones. It’s like you’ve been out in the rain in the middle of winter for hours the only thing that will warm you is hot water, which of course I can’t tolerate.
I am just so exhausted, as energy is severely limited, even on a good day. If I do anything for a long time, say an hour or so, and it wears me out even if it’s just sitting on the couch. Every movement draws from my supply of energy, every time I try to concentrate on something it drains some more, I can’t do anything without it affecting my energy levels for the rest of the day and often even for the next couple of days. If I do too much I end up not even being able to sit myself up, I become reliant on my family for everything, it can sometimes take weeks to recover. I live a life that is alone, watching others flourish while I stay behind in the dust, and a life that is filled with tormenting agony 24/7 because I constantly feel like I am in Hell by being struck with the most horrible pain you can imagine!
Even though I very rarely do get “good days” and living my life seems a bit grim, I am still continuing to push on because I don’t want the “poor me” syndrome. I desperately want to get better. I desperately want to regain all the stuff that I lost out on. I want to be able to have that life that was taken from me and have a family, become a doctor, and do everything else that I dreamed of doing. Therefore, I am really hoping to be able to undergo that radical ketamine Coma in Mexico.
The radical Ketamine Coma in Mexico is my only chance of living. There really isn’t much else that I can do to combat this illness, as I have tried every other treatment modality. I desperately need that radical ketamine coma in Mexico as soon as possible because it will actually “reset” my entire nervous system and hopefully cure me. It is like my only hope! However, we cannot afford it alone, as it will cost over $100,000. That is why I am so desperate for the help of others. I know that without this coma, I am not going to make it much longer and I really don’t want to die. I have too much to live for and I really want to get better so badly. I really want to get better so that I can make a difference in society and get back all that I have been robbed of by having this illness.
But I know I need this help as soon as possible because I am really deteriorating and deteriorating fast. My body is shutting down and I desperately need this lifesaving treatment. I also need help in paying for my medical expenses, as we can’t afford even the current treatment and medications and appointments that I am receiving in the United States. I desperately need this treatment to help keep me alive, to keep my as comfortable as possible, as well as to “buy” time until I am able to get to Mexico. I am supposed to be undergoing the Ketamine Coma May 1st, but if I don’t have the funds, I won’t be able to do it. Therefore, I am praying that all will work out. If you have any fundraiser ideas, please don’t hesitate to email me at Femirsky@gmail.com and let me know. If you can please spread the word about donations needed to save my life, I would appreciate it.
In the meantime, I am progressively getting worse. I am going in the morning to a vascular surgeon because my left leg is completely black. We are not sure why it is remaining so black, and we are scared because black means that no oxygen is getting to the tissues and it is dying. I recently went for Hyperbaric Oxygen treatment in hopes that oxygen can be restored and blood flow could be resumed, but nothing was accomplished. In fact, I took a before and after picture and there was absolutely no change. When I actually showed my dad the picture after the treatment, my dad didn’t even realize that it was the “after” picture because there was absolutely no change. Usually the coloration gets better because the chamber causes more oxygenation into my tissues. So when I still saw the blackness and that there was absolutely “no change”, I was really scared.
We really need to have it checked out because I don’t want to lose my foot. Turning black could also mean that it is going “gangrene” and it needs amputation. This would not be good because you can’t just cut off my leg or anything because this disease is a disease of the central nervous system and therefore, it encompasses the brain, spinal column, and entire nervous system. So typically if you even amputate the limb or anything… it will continue to spread and even spread even worse.
In addition, I am also scared that the blackness means that there is something wrong with my heart. I already know that my heart does have problems and is weak. I did receive my bloods back today and it came back abnormal. My bloods have gotten worse and one value that worsened as well was the carbon dioxide level, which means that I am not getting enough oxygenation. So I am scared that this blackness could mean something more seriously wrong with my heart is occurring.
So I guess I will find out in a few hours hopefully what is going on because I have an appointment with the vascular surgeon. I am really nervous because I really don’t know what to make of the blackness. I am used to changing colors and for my body to even go to black at times, but this is remaining black at all times. It never has done this before.
I have also been getting sicker in other ways as well and I don’t know if it could mean anything. I have been extremely weak lately and barely able to even stand up. I don’t know if it is because of my illness or because maybe because I have lost weight, which is a major problem because any weight being lost when you only weigh in the 60s is a major problem. It is really a matter of life and death when you lose even an ounce. I definitely can’t afford for that to happen. I just can’t keep my weight on. I also am having a hard time going to the bathroom, as I think my kidneys might also be failing me. They have had problems in the past and I was on medications for them, but it has gotten a lot worse. I am going to have to make an appointment with the kidney doctor now because of all that is occurring.
Gosh… so much is happening… between going to see the vascular surgeon, having to now see the kidney doctor, and I still have to find out what to do about my intestines because I am bleeding and can’t go to the bathroom either. I am just so tired already. I am holding on and pushing forth, but I am weakening. I really need to remain as strong as possible for the Coma, but it is getting harder and harder. That is why I also need to have it ASAP. I can’t afford to put the coma off longer than May 1st. My body won’t make it much longer. So as I said before, any help that you can give in helping me get the necessary funds for the treatment, I would really appreciate.
At least tomorrow, Wednesday, I will be out of pain for the most part. I have a ketamine infusion/coma for the day. Even though it definitely doesn’t last, at least it takes me out of pain for the time that I am “under”. I will take any relief that I can get. We are also hoping that even though it doesn’t last long with the pain relief, we are still hoping that it slows down the progression of the illness. I need a dose that is so much higher and that is not FDA approved. That is why I need to go to Mexico to get that amount! Sometimes I only wish that I could live in a ketamine coma because at least I won’t be in pain! I can’t take the pain anymore.
Well… I am going to get some rest. I will let you know what happens with the vascular surgeon and the other appointments when I know more info. Thanks again for all your help and support. Remember… “Help Fallon Fight” Bracelets are still continuing to be sold. They are $5 and come in pink or blue. Contact me through Facebook or by emailing Femirsky@gmail.com, if interested. All money goes towards my medical expenses!