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.
But the bottom line is that I desperately need treatment and since my treatment is not free… we desperately need help from others in order for me to get the lifesaving treatment that I desperately need. Right now things have gone from really bad to even worse. I am barely hanging on, but I am still trying to hold on because I still have that hope that I will be able to get that treatment that I desperately need and it will save my life. I still have that glimmer of hope that I will be able to regain my life and all this madness will be able to disappear and I will be able to become my dream of becoming a doctor so that I can help others. I keep closing my eyes and dreaming that I am going to become that doctor and that “normal” person again. I dream about the day when I will be able to have a social life and a family. I dream of the day that I will have a LIFE to enjoy.
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!!
I was going every Friday for my intestines to be cleaned out, but with the holidays and everything, it is not able to occur anymore. The doctors are very fearful of what is going to happen now because I can’t move anything through and these surgeries on Friday are the only things that “help.” Not only does it help move things along so that it doesn’t remain in my GI tract and it helps prevent the sepsis from occurring and my intestines from rupturing, but it also makes me feel better. I used to really look forward to this day because of how much better I felt after the procedure but now since it is the holidays nad everything… the doctor has no time to do it. So I have really been suffering and there is nothing the doctor really can do about it. He is trying his best though to fit me into the schedule or to have one of his partners do the procedures on me. Hopefully something will be able to work out because I won’t make it without it.
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.