Hi! Welcome to my website! My name is Fallon Mirsky and I am 34 years old. I was an active, healthy teenager, until, without any warning, my life as I knew it was ripped away from me by a rare, painful neurological disorder, that has no cure. I have spent the last couple of years incapacitated, having a GI system paralyzed, unable to go out of my house to socialize or work, and even unable to eat. A body that one functioned “normally” now is on “autopilot,” as I am suffering immensely from severe autonomic dysfunction. Doctors have said that “these diseases are one of the worst a person can have and to make matters worse, I am the one of the WORST cases that they have ever seen.” Everyone who knows me is amazed and inspired by how strong and fearless I have been through this entire painful process even though I am now a timebomb just ticking away and hoping to be able to be helped before I explode. This is my story of my amazing journey through this horrendous disease!
In 2001, I was diagnosed and began suffering from rare and life-threatening diseases known as Reflex Sympathetic Dystrophy, Autonomic Dysfunction, Gastroparesis, Osteonecrosis and a Pituitary brain tumor. I am rapidly deteriorating and unless something is done soon, I will soon die. I have deteriorated so much and the pain has been so profound that I must undergo the most extreme and expensive of therapies—being placed under a Ketamine coma—to hopefully reset the pain connections of the body and fix the nervous system. It is my goal to become the 38th patient to undergo a radical Ketamine Coma in Mexico to help me regain my life! Doctors have said that “these diseases are one of the worst a person can have and to make matters worse, I am the one of the WORST cases that they have ever seen.” The pain is constant and unrelenting, but despite my suffering, I still have hope for a future. Everyone who knows me is amazed and inspired by how strong and fearless I have been through this entire painful process. This is my story of my amazing journey through this horrendous disease!
I suffer from extremely rare, debilitating, painful, life threatening illnesses known as Gastroparesis, Short Bowel Syndrome, Intestinal Pseudo-Obstruction, Dysautonomia, Reflex Sympathetic Dystrophy, and a Pituitary Brain tumor. Unfortunately, due to the complexity of my illness, we have to seek the help of top specialists across the country (i.e. Cleveland Clinic, California, Nebraska, etc.) because not many doctors are familiar and knowledgeable about my condition. Medical treatment for my illness is extremely expensive because I need multiple surgeries/procedures, medications, and traveling expenses to see specialists.
Suffering from a disease that ranks higher on the pain scale than Cancer, childbirth, amputation of a digit, etc. Reflex Sympathetic Dystrophy, a poorly understood nerve disease defined by pain in the limbs that is way out of proportion from what is expected following a particular injury or harmful event, such as a surgery or injury; it is a rare, disabling pain disorder in which ordinary sensations such as touch, warmth, and even coolness are perceived as painful. I suffer daily (24/7) from sharp, stabbing, tingling and burning pain; severe headaches; paralysis; intense muscle spasms; dystonia; sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; inability to sweat; swelling; deterioration of bones; decreased hair growth; discoloration of the limbs; and painful skin ulcers. Due to how hypersensitive I am, my parents at times can’t even kiss me, I can’t wear a sock, I can’t sleep with a blanket.
I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. I cannot keep any food or liquids in me, and I vomit constantly. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8. I also require a rare and risky transplant that only 8 hospitals in the country perform, and it also carries the highest rejection rate of all transplants. I need a multivisceral organ transplant, which will encompass receiving a totally new digestive system (new stomach, small and large intestines, pancreas, and liver). Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am ‘cured’ and able to live my life to the fullest!
I have undergone numerous painful tests, procedures, weekly ketamine infusions, and surgeries. I also currently take over 50 pills to make it through a single day including including Morphine, Dilaudid, Nucynta, Ketamine to just name a few. I even take multiple injections, as well as take Medical Marijuana. In addition, I even go 3 times a week into the hospital and OR to get my intestines/colon emptied because my body will go toxic and septic if I don’t, as well as to get ketamine infusions, blocks, etc. because the pain from these illnesses and in order to control the dysautonomia is too great. The medical bills are way too great and donations are much needed to help pay for these costs just keep me functioning and alive day-to-day.
I am deteriorating so rapidly and time is not on my side. Yet, unfortunately, my illness poses a real financial burden on me and my family and I can no longer pay for my medical expenses without the help of others. I desperately need your HELP in order to receive the lifesaving treatment that I need to overcome this illness. We have a growing stack of bills from very costly insurance premiums, co-pays, procedures, doctors, and traveling expenses. My parents try as much as possible to make ends meet, but they have had to take an indefinite leave of absences from their careers in order to provide the vital at-home care needed to help me get me through this ordeal, as well as to take me to the doctors and to get treatments.
We have exhausted all methods of receiving help and trying to get me the medical treatment that I require. Asking for ‘help’ was very difficult because we were always a family that “gave” and never had to ask for help. However, unfortunately, we have gotten in over our head in medical expenses and in desperate need of financial help to pay for my medical expenses. It is hard to ask for help, but we are in debt over 100,000 and we can no longer give me the necessary treatment that I require without the help of others. We are even having difficulty paying for our health insurance on a monthly basis and it would be a disaster to have to go without it.
I just want to get better so badly. I hate what my life has turned into. My life has really been turned upside down. I am forced to live a life within the 4 walls of my home because I am too ill to go out, my social life is nonexistent, the only thing FUN and I have in common is the “first” letter, and I can’t even become the doctor that I always dreamed to be. My parents keep saying that I am beautiful, but I feel like a hideous beast. Between the colorful changes this illness has given me, contractions, and how emaciated I look, I really don’t consider myself beautiful anymore. People don’t realize how bad I really do look because they don’t realize that behind every single picture is a hideous beast, as I end up “touching up” every single picture before allowing it to be posted. Since I am so thin and have literally no muscle tone left in me, my skin just sags on my bones and all you can see are wrinkles and folds throughout my face; a face that should be filled with such youth and vibrance looks like a feeble old lady’s. People say that “appearances” don’t matter, but I can’t tell you how many stares I get or how many people are “chased away” when I change colors or because I look so emaciated.
I only pray that one day I will get my life back. I pray that all my pain and suffering ends soon. I love life and have so much to offer the world! I pray that I get my dream of becoming a doctor fulfilled so that I can help others who are suffering. I pray that I will not be a burden on anyone… especially my family. I pray that I beat this and lead a long and happy life.
It is a huge struggle to go through each and every day, and there are plenty times that we don’t even know if I am going to make it through the day or night. Please spread word of this website because not only do I want to get better so badly, but I want to get the word out about my condition and start awareness! This is the story of a girl who refuses to give up!
Even if you are unable to donate, please pass on this site, send a few prayers our way, and if you could read my story through my blogs. Thank you for taking the time to read this. I am praying that my life will only get better so I can live a long and happy one. To better understand what I am going through, please watch the movie “Miracles from Heaven.” It is so close to my story.