HOPE for FALLON
HOMEPAGE AND BLOG: HTTP://FallonMirsky.wordpress.com
Please help me, as I am rapidly deteriorating and if something isn't done quickly, I will soon die. I desperately need medication and various treatments that we can't afford and since no one does nothing for "free," I am unable to get the very important lifesaving treatment that I desperately need.
In addition, I also need to go to Mexico so that I can become the 38th patient to undergo a radical Ketamine Coma to help me regain my life! 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.
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 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 Methadone, Morphine, Dilaudid, Nucynta, Ketamine to just name a few. Many doctors have told me that the amount of medications that I am taking would be enough to "kill a horse""”yet they have had little to no effect on me. Even the ketamine infusions are not high enough to benefit me, as the amount of ketamine that I require can only be attained in Mexico because it is not FDA approved. Due to the complexity of my illness, we have to seek the help of top specialists across the country and in Mexico because not many doctors are knowledgeable about my disease and able to help me. We travel to Monterrey in Mexico, Stanford Medical Center in California, John Hopkins in Maryland, Mayo Clinic in Minnesota, Drexel Hospital in Pennsylvania, Florida, and have doctors in the New York area as well.
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. Just the Ketamine Coma alone will cost us over $100,000. 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.
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. 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 will be able to be "touched" without pain searing through my body. I pray that I will be able to have a family of my own with a husband and kids. I pray that I beat this and lead a long and happy life.
I love life and I have so much to offer the world! However, I fear that further treatments might have to be curtailed, and even possibly stopped, because the cost is just becoming too great. Please help me because even $1 is one less than I have to worry about.
I also need all the SUPPORT and PRAYERS that can be given. It is a huge struggle to go through each and every day, and there are plenty of 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!
Thank you for all your help and support!
I just wanted to write a quick blog and say HAPPY HOLIDAYS to everyone. I would like to wish each and every one of you all the very best in this holiday season and I only wish you to have a very Happy and Healthy New Year. I hope that 2015 will be a better year for everyone… including me!
Even though it is the holiday season and it is supposed to be a very “happy” time of year, it isn’t so very happy for me. Unfortunately, we aren’t really celebrating the holidays this year because we don’t have the money to do so. I should have been in Cleveland right now getting the lifesaving surgery that I desperately needed, but unfortunately we couldn’t come up with the needed funds and since no one does anything for “free”… we had to delay our plans for February. So we are only hoping and praying that it will all work out that I will be able to receive these lifesaving surgeries then because I really desperately need them and I don’t know honestly how much longer I can last without them. We don’t honestly even know if I will even make it to February, but I am strong-willed and I am going to hold on until then.
I can’t say that these last couple of weeks has been “easy” or even the same as what I have been used to. I am really in a rapid downhill fall. I am rapidly deteriorating and unless I get these surgeries really fast, I am not going to make it much longer. It pains my parents that they can’t get me the treatments that I need to save my life. I see it in their eyes in that they want to help me so badly and their hands are tied. We have done everything that we could do, but unfortunately our finances are strapped and we cannot afford my treatments any longer. The bills have grown like a wildflower all over the place and we can’t even pay our mortgage and can’t even put food on our table. You know it is bad when we are scavenging around trying to think about how we are even going to get money to pay for the food for the week. Gosh… I never thought that this would happen to me. I never thought for once I would ever be at a point in my life where I would be at risk of losing everything. Not only has this disease taken everything personally from me such as eating, walking, friends, family, etc. but also now this disease is even taking over and affecting my family in ways that is beyond belief. It is causing my family to literally have at risk the house being taken away because we can’t afford so many bills that are necessary to be paid in order to live. We can’t afford the mortgage, food, even a down payment for a new car because our old Altima’s lease is up. My dad is working harder then ever and is busy taking care of me and also taking me to all my appointments. He is like superman but I am so afraid that something is going to happen to him because even though he tries to be a superhero, he is getting old and he is working so hard. Between the work and stress... I am so worried that he's going to have a heart attack or something. After all... He is not only my dad but my very best friend and hero. He lasts jokes with me (except he isn't joking) that he is superman and nothing can stop him and will be fine as long as no one gives him kryptonite. (Click NEXT to read on)
If only these dreams will come true. I know it is the holiday season, and the best gift of course that I can be given is that “miracle” of being cured. But lets be realistic because I know that is not going to happen. Miracles like that don’t happen. But I do know that the second best gift that anyone can give me is a donation. It doesn’t matter how small the donation it is, but all donations are definitely appreciated because even that $1 is one less dollar that I have to come up with and it will help pay for my medication, treatments, etc. which I wouldn’t be able to get if I didn’t have it. You know? So as this season is known as the “season for giving” and if you should find maybe a dollar lying around… please think about donating it to my fund because that little amount can go towards saving my life, which could be making such a huge difference in my life!! You can help make something so little become something that can potentially make such a difference because you will essentially be helping me get my life back…. Which is the best and biggest gift that anyone can ever receive. Plus… if you can pray for me and spread word of my website ( www.gofundme.com/FallonMirsky) I would really appreciate it. Like I said before… any help is definitely appreciated!!
Suffering with a rare and life-threatening illness that is extremely debilitating, I am really deteriorating. As I have said before, I suffer a severe neurological disease known as Reflex Sympathetic Dystrophy, severe Autonomic Dysfunction, severe Gastroparesis, Osteonecrosis, and a pituitary brain tumor. I never thought that someone who was an “A” student and a competitive figure skater and a top violinist would suffer from something like this and have my entire body fall and succumb to this illness and fail me like dominos. I desperately need help before it is too late. You never realize how lucky you have it when you have your health. “Health is definitely wealth” and if there is anything that I have learned through this disease is that you should never ever take ANYTHING for granted… even if you think it is trivial and wouldn’t make a difference. For instance, I never thought I wouldn’t be able to eat, walk, shower, and stay out in the sun, etc. especially at the age of 32 years old. I am too young for this.
I need your help so I can get the funds that I need so I can get the funds for the surgeries that are scheduled for February. Until then, I have to hang on, which is getting harder and harder. The doctors are even getting even more fearful that I am not going to make it because I am getting weaker by the day.
I spend most of the time in bed nowadays. Most of my energy is zapped from my body. I guess it is to be expected because I have been fighting so long and I only weigh in the 60s. I am literally in bed by 8:30 at night and I can’t get out of bed until after 12 in the afternoon. It just takes so much energy for me to even lift my head up. I even fret when I have to go to the bathroom, which is right next door to my bedroom because it entails getting up out of bed and walking. I just don’t have the energy to do anything.
Thankfully I have my pets to stay with me. My cat, Missy, has been my very best friend. She stays by my side and stays in bed with me from the moment I go to bed at night until I get out of bed in the morning (well actually afternoon). My parents call her my ‘babysitter’ because there are times when I am not doing well and she alerts my parents about me. It really is something. I am so lucky to have her. I don’t know what I would do without her.
By the time I get up finally out of bed, the day just basically encompasses eating, taking meds, and throwing up. By the time that is all done… it is time to go back to bed. I get so exhausted and I get so much weaker after I eat and throw up. I constantly wonder if I am going to make it through another night. Even my parents are leery about that. I gurgle when I breathe and have extremely difficult time breathing. My dad keeps asking me if I want to go to the hospital and I really do, but the problem is that there really isn’t any place to go.
I would really love to go to the hospital. We all know that I definitely belong in a hospital. But unfortunately no hospital around here can help me. If I went to a hospital around here, it would only hurt me because I can’t be treated like a “normal” person. I need specialized treatment and since my diseases are so rare and everything… I need to go to a hospital that is situated and knows how to deal with my disease. After all, I need a multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver, and there are only 6 hospitals in the country that do this. Thankfully the Cleveland Clinic is one of them.
I desperately need to get to the Cleveland Clinic ASAP because that is where I am supposed to be having the upcoming surgeries and where they are familiar with my illness. However, it isn’t that easy because we don’t have the funds to do this. I will have to be there for at least 2 months, and that also means my dad will have to be with me as well. The doctors have already stated that I can’t be left there alone and therefore, my dad won’t be able to leave and go back home to work. So we don’t know how on earth we are even going to make money to pay the bills especially when we can’t even afford them now. So that is why it is so desperately needed that we get the funds to help us out now.
In the meantime, since we are scheduled to have the surgeries in February, we have to get me to that time. It is getting harder and harder though because I am deteriorating. It is getting harder and harder to even go to the bathroom. Everytime I go to the bathroom, I end up vomiting because I have severe gastroparesis and as a result, my intestines are completely dead. I have even already passed out and my dad has found me unconscious on the bathroom floor because I am unable to go to the bathroom. The toxins are just spreading because things are just sitting in my intestines and colon and I can’t get them out because my entire GI tract is essentially ‘dead.’ So my body is becoming intoxicated and being poisoned!! (Click NEXT to read on)
In addition, I have to make an appointment to see the cardiologist ASAP. My heart is not doing well and I am gurgling like crazy. We know that I am aspirating because of the severe gastroparesis and that my heart is greatly being affected by the autonomic dysfunction, but the doctors want me to see the cardiologist ASAP because things are getting so bad. Even though we are scheduled to have the major surgeries in Cleveland in February, we are supposed to be headed to Cleveland Clinic for about a week in January (January 6th -9th) to finalize everything and to see specific specialists. One particular specialist that we are supposed to see is the cardiologist who is supposed to be very well known. He is listed under the 50 best doctors that Cleveland Clinic ever had and he was also trained under the legendary doctor named Sones. Sones was a great cardiologist that discovered a way to form a road map of the heart for medicine and surgery. He injected dye into the coronary arteries, which allowed the arteries to show up on X-rays and gave cardiologists the opportunity to identify obstructions in blood circulation. Sones’ innovation made possible, for the first time, accurate diagnosis of coronary disease and set the stage for the modern era of cardiology and cardiac surgery. So you can just imagine how great a doctor this doctor I am seeing is. However, I still need a doctor in New York in case something happens in an emergency and with everything happening, my doctor literally told me today that he wants me calling the new cardiologist first thing Monday morning and making an appointment.
I just need help and need help fast. We always knew that I had an intussusception in my colon, which is a twist that is life-threatening if not treated. However, thankfully (if you want to say it like that) my colon was so dilated and floppy that I was able to live with it until now. However, it has gotten so bad now that I have to get it taken out right now. It is now in an emergency state that I have to get it taken out NOW!
The doctors are worried that the longer we wait the worse things are getting. They are worried that more and more organs are being affected and are going to need to have surgery on them and/or be transplanted. So it is really necessary to get this surgery done ASAP.
In the meantime, I have also been getting my usual ketamine treatments. Of course the best thing would be if I could get to Mexico and get the radical ketamine coma that I really desperately need, which would ‘cure’ my entire neurological disease and autonomic dysfunction, but it costs over $100,000, which is something we definitely don’t have. I would do anything to be able to go to Mexico to have that radical ketamine coma. I truly believe that would be the answer to all this. But unfortunately, it costs too much money and we can’t afford it.
So in the meantime, I have been undergoing the ketamine comas here in New York. Of course they are no where in comparison to the one that I would be getting in Mexico because the one in Mexico is one that I would be given so much ketamine that I would literally be on life-support and totally dependent on machines and ventilators. The amount of ketamine to do that is not FDA approved and therefore, it cannot be performed in the United States. During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.
For many of the patients that underwent this treatment, the treatment has been miraculous. I would be the 38th patient to undergo it.
But since I can’t get it currently, I have to rely on my ketamine comas here that is much less than that. I wish I could live in those ketamine treatments because I can’t take this suffering anymore. At least when I am in the ketamine comas… I am not feeling any suffering. It is my “vacation” away from this illness and horrendous life until I wake up. I have been deteriorating and worsening so much lately that medications have not been helping me. Therefore, the doctor has raised the ketamine done another 50 mg.
Well… I guess that takes care of everything for right now. Just gotta hang in there until I get the surgeries. Just gotta pray that I get the necessary funds so that I can get the surgeries. I am hoping also that we have enough money to even go for the week to Cleveland to meet with the doctors that I need to meet with.
We are scheduled to leave February 1st for Cleveland and have heart surgery the 2nd. Then I will have my colon removed on the 18th. Depending on how that goes, it will determine how urgently the multivisceral transplant will have to follow. I will have to be there at least 6 weeks at this time, which also happens to be when my birthday is. What a way to celebrate a birthday! But I don’t care as long as I get better!!
My brother surprised me today with a bear and a big box of chocolate truffles. He works as a social worker and one of the rehab/nursing homes gave him some stuff… so of course he gave it to me. The chocolate truffles look so yummy. Maybe one day I will be able to enjoy them.
Well… have a happy holiday and please remember my website. Please remember to pray for me and pass my website along. Remember… even a $1 can make the hugest difference in my life!! If you have any other ideas how to raise money, please let me know… all ideas are greatly appreciated. Please email me at Femirsky@gmail.com. Donations are very much appreciated at www.gofundme.com/FallonMirsky.
Happy Chanukah, Merry Christmas, Happy Kwanzaa, Happy New Year.
Sorry I haven’t written in quite some time, but I have not been feeling well. To be quite honest, I am really not doing well and really deteriorating. As time is proceeding, I am getting weaker by the day and it is getting even harder to make it through a day or night. It takes me quite a while now to build up the energy to do something so even simple tasks like writing my blog is getting too difficult to do and that is why I haven’t really written as frequently as I once did. I desperately need treatment and need it NOW, but unfortunately we can’t afford it and we are in extreme need of the help of others so that I can get the lifesaving treatment that I need.
I figured that since I haven’t written in a while, I would write and update you on all that has been happening especially since the year is coming to a close and I am only hoping that 2015 will be better. Plus, I am in need of so much help that I am hoping that through this blog, you might realize how much help I really do require to stay alive and therefore, perhaps maybe you might be able to help in someway… whether it is by donating, spreading the word of my website so that others can know about it and be able to donate, say a prayer, give some fundraising ideas, etc. I am really hoping that something can be done because without any help, I am not going to make it much longer.
As it is, we had to cancel the lifesaving surgery that I was scheduled to receive this upcoming week at the Cleveland Clinic. Due to insufficient funds, we had to cancel and it was something that we really couldn’t afford to do because I am literally hanging on by a “thread” and that thread is snapping already. We did reschedule it to a later date, but even the doctors are skeptical about how much longer I can hang on and if I can honestly make it to even another month for when the surgeries are now scheduled. In my state right now… even day counts and makes a difference.
I desperately needed to get to Cleveland Clinic this week because I was supposed to have heart surgery as well as have my colon removed. I was supposed to have heart surgery not only to remove the calcium calcifications in my coronary artery, but also to put lines and catheters into my heart to serve as a port, emergency access, a place I can receive TPN, etc.
This heart surgery was very important because I desperately needed the lines placed in me. Not only did I need it for the massive surgery to remove the colon, which would follow because it would be an “emergency access” port into me since it was a central line and go straight to my heart, but it would also have other purposes as well. With this port, I would be able to give given medication and would be a huge relief because of the amount of medications that I need to take and because I can’t absorb the medications as they need to be either since my either GI system is basically dead and doesn’t function. If given meds through this access, they would be far more potent and would hopefully help me better both in pain and in general. In addition, as I take so many pills daily that according to docs would “kill a horse” and a 300-pound man would never be able to take because it would even kill them, and it is extremely difficult for me to get them down. I have to take literally over 50 pills daily and with this port I would not have to worry about swallowing any of them anymore. Even the injections that I need to keep poking myself for wouldn’t have to happen anymore, as this port would prevent me from receiving injections and being constantly stuck with needles to give me both medication and draw my blood and everything.
Finally, one of the major reasons I need this port is for TPN. As I only weigh in the 60s, I have no ‘reserves’ to help me fight anything should I get sick and for when I undergo surgery. I definitely would need this to help me ‘heal’ especially from major surgeries that I will be undergoing.
So everything is just at a standstill right now because we have no funds to send me. Not only do I need help even paying for my medical treatments at home, and medications and everything, but there is absolutely no way we could pull off this trip. I would need to spend at about 6-7 weeks in Cleveland, which would amount to a lot of money. So we are just praying that help will come and arrive in time for February because that is when the surgeries are rescheduled. We just hope I will make it that long as well.
Whereas it was hoped that I would be going for the surgeries this month and this way I would be starting the New Year as hopefully a brand new person, it is obviously not going to happen. Now I am scheduled to leave February 2nd and I have heart surgery on the 3rd and then my colon is being removed on the 18th. I will literally be going to Cleveland as an extremely SICK 32 year old, but hopefully coming back as a healthy 33-year old because I will be celebrating my 33rd birthday there. What a way of celebrating your birthday, right? But hopefully there will definitely be something to celebrate this year because hopefully we will be celebrating receiving the lifesaving treatment that I need and the start of a brand new healthy life. That would be the best birthday gift of them all.
Technically speaking it is kind of better that I have the surgery in February rather than now in December because there will be more days being able to be dedicated to the TPN than if I went now. Since I suffer from this painful and rare debilitating illness, I can’t tolerate anything ‘foreign’ in me and therefore, we don’t know how my body is going to be able to tolerate these lines going into my heart. I can’t even tolerate IVs. In order for me to get my colon out and have that massive surgery, I need to have at least 10 days of TPN. If I went this month, we would have to use every single day and wouldn’t be able to miss one day acclimating to the tubes. Yet, now that I am going in February, we will have more time to go ‘slowly’ and hopefully get my body to work with us. As it is, they will be having me heavily induced on ketamine during this time so hopefully I won’t be bothered by the central lines. I am so malnourished and deprived according to the doctors that we are going to need those extra days to go slowly. So in a way it is better.
However, even though we will be going to Cleveland for the massive surgeries starting February 2nd, we still are planning on making a trip to Cleveland on January 6th for a few days. It is important that we do so because we have to meet with some doctors and go over a few things. We need to see at this time the heart doctor, endocrine doctor, GI surgeon, neurological doctor, etc. It is extremely important to see the neurological doctor because he is one of the very few doctors in the world that is knowledgeable about my illness and has actually done research on it as well. This way the team will know exactly how to care for me during this operation because I cannot be treated like normal patient and even the slightest surgery, needle stick, tube placement, etc. will stir up my disease, cause havoc on me and my autonomic dysfunction, and cause my illness to spread. (Click NEXT to read on)
I hope you get the help you need!!
I say we bombard Jeff Rosen and the Today Show with tweets. Everyday
Hi Fallon, As I was awaiting my turn for Sympathetic nerve injections for my RSD I saw your flyer. I want you to know although I am walking again and was never as ill as yourself I understand. I also learned who really cared about me and unless your in a situation as yourself most don't understand. Unfortunately I am not in the financial situation to help, I'd like to help by being your friend. If you'd like you can email me at email@example.com
Hi Fallon, I did not know you had a friend like Missy. I have 3 "friends". Papoose, Spanky and Nefertitti. They are my wonderful friends and companions. I don't know if the following would be helpful or a comfort to you, but I thought I would pass it on. I got it from a daily devotional from Joseph Prince Ministries. He is SUPER positive and has LOTS to say about how Jesus heals. You can surely find more about him by googling him. You can ask them their ministry to pray for you if you like. Here is what I received today: "Someone once told me that just because you ask God for something, it does not mean that He will give it to you. Quoting 1 John 5:1415, he said that we first have to ask according to His will before He hears and gives us what we ask of Him. Of course, we do not ask for things that are against Gods will or Word. But what is normally implied in the earlier statement is that we dont always know what Gods will for us is what will be, will be. But didnt Jesus say, He who has seen Me has seen the Father? (John 14:9) This means that if you want to know what the Fathers will, mind, heart or attitude toward you and your family is, just look at Jesus in the Gospel stories. So if your child is sick, is it Gods will to heal him? Well, look at Jesus and see how He ministered to children who were sick the Syro-Phoenicians daughter who was demon-possessed (Mark 7:2430), Jairus daughter who was dead (Mark 5:2224, 3543), and the widow of Nains only son who had died and was about to be buried. (Luke 7:1215) Jesus cast out the demon. He raised the dead. He healed them all! Beloved, dont say, We can never know Gods will. Sometimes He heals, sometimes He doesnt. He may prosper us, but He may also take away our prosperity. The Jesus of the Bible never made anyone sick. He never made anyone poor. He made the little become much with 12 baskets full of leftovers. (Matthew 14:20) He gave a net-breaking, boat-sinking load of fish to fishermen. (Luke 5:67) My friend, the Jesus of the Bible loves to heal, deliver, prosper and save people. This Jesus is the same yesterday, today, and forever. (Hebrews 13:8) And He says to you today, If you had known Me, you would have known My Father also; and from now on you know Him and have seen Him. So you can know Gods will for you. You can see what He will do for you when you know the Jesus of the Bible and what He did. "
I have been sick for too long. I have been officially diagnosed since 2001. But, they think I possibly have had it longer than that!!
how long have you been sick
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