I just wanted to write tonight because I wanted to ask if you would be so kind to spread word of my website because I desperately need to receive treatment, as I am really deteriorating and not going to make it much longer. My body is giving up on me and shutting down. Yet, my family can’t afford the lifesaving treatment that I need without your help. I desperately need your help because I don’t want to die. Not only do I need your help to continue to receive the treatment that I am receiving in the United States, but also I need your help so that I can receive a radical Ketamine Coma in Mexico, which is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. Only about 80 patients worldwide have undergone this Coma. Even though I am extremely fragile, there are significant risks; it continues to be my only hope because there are really no other options available. Unless something is done soon, I will die, which is something I really don’t want to happen because I have so much to live for and so much I still want to do in life.
Going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!! I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.” I think that everyone in this world should know about my disease in the same way that they know what cancer or AIDS are.
I spent today watching figure skating on television and it really hit home how sick I really am and how much I really want to get better. I would do anything to be able to be free from this disease and be able to skate again! All I kept saying when I was watching the skating on TV was that I would do anything to turn back the clock and go back in time. After all, I had such a great life before I got sick. Never did I think that my life was ever going to turn out the way it did. Me… just like everyone else… never appreciate what we really do have until it is too late and we don’t have it. I guess I always kinda took it for granted that I would be able to walk and eat and be “healthy!”
I watched the ladies compete on TV and I remembered my days as a skater and how good it felt to be able to soar over the ice and jump into the air. I felt free as a bird! It was the best feeling in the world. I was an avid figure skater growing up, as I competed and performed in shows. I even was fortunate to perform at Rockefeller Centre. My whole life was skating. I would skate basically almost every day, and I would even skate before and after school. Even though I would have to wake up very early to skate before school, there was nothing like smelling the ice first thing in the morning and being able to feel free as a bird! I felt untouchable when I skated. Skating was one of my happiest times. I only wish I could go back to it.
My dad sat beside me as we watched together the competition. I asked my dad, “Do you ever think I will be able to skate again?” My dad looked at me and said he “hopes”, but in reality we both new deep down that those great years that I had skating were years that are gone forever. Although my dad wouldn’t say so, I knew deep down that even if I did get better, I would never be able to skate again. My body has suffered way too much because of this illness and even if I did survive this illness, there would be no way my body would be able to survive a fall or anything because not only could a fall also restart my illness up (because this illness never officially goes away… all I can hope for is that it goes into complete remission), but my bones would never survive a fall either because they are so weak and osteoporotic that the slightest impact or fall could cause devastating effects (my bones are so weak that the doctors are so fearful of me even getting a life-threatening fracture).
I just wish I could turn back the hands of time. I had such a wonderful life growing up. When you are young and growing up, you never really appreciate your childhood and you are always looking forward to growing up. Yet, if I knew what was ahead of me, I would have never wanted to push ahead and grow up so fast. It is amazing how little kids always want to be older than they are. Yet, they don’t realize that growing up means also having to deal with the world and huge problems. Kids don’t realize how good they have it. My dad used to tell me when I was younger that “you don’t know how good you have it and don’t be in such a hurry to get older.” I only wish I would have listened. But I guess all kids don’t because they think that the “adult” world is so much better.
Not only was life better years ago when I was younger because I skated, but also life was better because we didn’t have to worry about financial issues. We were the typical middle class family who were self-sufficient. We definitely had more than others, but certainly less than others too. I can honestly say that we were living “comfortably” and we were able to pay all our bills. We were also the type of family that always gave to the less fortunate and to people in need. In fact, every holiday season we would help the homeless and play “Santa” to kids that were less fortunate than us. Never did I think that we would ever be in a position where we would be on the other side of the coin. Never did I think that we wouldn’t be able to afford to pay our mortgage and was at risk of losing our house. Never did I think that the weeks we are able to pay for food shopping that I would consider ourselves “lucky”. Never did I think we would be selling everything that we owned just to get by. That light that was so bright at the end of the tunnel at one time quickly disappeared.
Not only do I wish I could change back the hands of time because physically I have changed, but I have changed mentally as well. Sometimes I wonder if the word “FUN” will ever exist in my life again. The only thing that the 3-letter word and I have in common right now is the first letter. All things that used to give me pleasure has been taken away from me. Even the littlest and simplest thing such as reading was taken away… another thing many take for granted. I used to read books like crazy. Yet now, I can barely even focus and concentrate. I can barely retain what I read. By the time I reach the end of the page, I can’t even remember what I read at the top. Even though I continue to try to read, I can’t remember the last time I was able to finish a book. Nothing is worse than watching my brain deteriorate. I used to be so keep on everything. I was sharp as a whip. I had photographic memory. Yet, now between the drugs and illness, something that I thought I would always have, which was my brain, has been taken away from me as well.
Family life for me also changed dramatically. The years when I was younger that were filled with fun times, happiness, laughter, and smiles as we ate out and went on vacations, and did fun activities such as go to amusement parks, the beach, the movies, shows, apple picking, etc. are now a big blur. Not only did my life change as I got older, but so did the lives of the rest of my family. As I grew sicker and sicker, it really took a huge toll on my entire family. We no longer were able to go out and have “fun.” Even going out to eat stopped. Everything stopped! At first it all stopped because my parents gave up their lives to care for me because I became too sick to do anything. But then we couldn’t even do anything even if we wanted because my medical illness had taken a toll on the family as it was extremely expensive and put us financially in debt. There was no way that we could afford the treatment that I needed and do other things as well. My family literally gave up their lives for me. They worked harder than ever, as their 5 day work week became 7 days and they even worked longer hours as well. Yet, even with them working more hours… the bills and debt continued to build. Everything seemed to snowball out of control.
I really only wish I could turn back time so not only I can have my happiness back, but so that my family can have theirs back too. They have given up so much for me, and I am so grateful for them. I would have never made it this far without them and I am so thankful that they are my parents. Not only is my dad my “father”, but also he is also my knight and shining armor, my superman, and my best friend. There is nothing that he wouldn’t do for me. He always tries to bring whatever happiness he can to me and tries to make all my worries go away even though it’s literally impossible. My dad is the one who carries me from place to place when I can’t make it and he is the one who takes me all over the country in search of help. I can’t thank him for all that he has done and continues to do for me. My mom is also amazing. She stays home and tries to run the business and house when my dad and I are not around. She isn’t well herself, as she suffers from Multiple Sclerosis. Yet, she continues to do all that she can so that my dad can continue to take me to whatever appointments that I need to go. I only wish that she could come with us when we travel, but I know that is literally impossible. Not only can we not afford for her to come, but also someone has to watch the business and the house. One day we will be able to go on vacation as a family again and have a good time. One day we will be like every other family and be able to be enjoy life so that we can be “all smiles” again. I know it hurts my mom immensely to hear when other people go on vacation because we haven’t been away on vacation in close to 10 years. But one day I will hopefully be better and we will be able to afford to go. One day all this will be a memory and this will be all in the past. I only hope that I will get well so that I will be able to live out my life and dreams, and my family can get their lives back. It isn’t fair what I did to them. I only wish I could make it up to them.
Thank goodness I have my animals. My cat Missy, my turtle George, and my dog Max are not only my pets, but they are also my companions. I don’t know what I would do without them. As I spend a lot of time alone and isolated in my house, my pets have been such a source of comfort. They really have kept me going and have provided me so much comfort. My cat Missy spends all night long with me and we call her my “babysitter!” As I spend countless nights awake because this disease makes you not able to sleep at all, she stays right by my side and makes sure that I make it through the night. She loves to watch me on the computer and loves to watch TV with me as well. If an emergency ever arises during the night, my parents always can tell because Missy alerts them. She is such a smart cat. Max is my buddy during the day. He spends the day laying on the couch with me. He knows just where to lay and is especially careful not to hurt me. When I come home from treatment, he is always there to come over and check me out to me make sure I am ok and to give me a kiss. My dad likes to call my dog “Fallon’s Service Dog!” Finally, I have my turtle, who is really something. Not only does he have such an unbeatable personality but he also watches me all throughout the night. He stays in the corner of his cage watching me and he loves to also watch TV. My dad likes to say that George is learning “English!” I really owe it to the three of them to keeping me going because at times they are my only companions and friends I can lean on besides my parents!
Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes. This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.
This illness has caused severe Gastroparesis and therefore, my entire GI system is no longer functioning. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition. I can barely eat anything because of the Gastroparesis. I literally am surviving on ice pops and egg whites. I try to get down ice cream because that is my favorite, but it isn’t so easy. In addition, I have trouble drinking. I can’t even drink because of the Gastroparesis. Not only does it cause me to “bloat,” but also it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia. If I drink anything, it has to be frozen and made into a “slushy.” I guess it has to be like this because it slows down the speed it goes into your body and the different texture makes a difference as well. I also need a multivisceral transplant (stomach, small and large intestine, pancreas, liver), but it is very radical and risky, and we are hoping it can be avoided by having this Ketamine coma performed in Mexico.
I have tried various and numerous treatments, which have put a great financial strain on us since they all aren’t covered by insurance and aren’t even in the local area since not many doctors are familiar with this condition. I have tried many (if not all) opioids, anti-depressants, etc. but nothing has worked. I take literally over 50 pills daily and the medications that I do take are enough probably to kill a horse. I am currently on Nucynta, Methadone, Senokot, Colasce, Ducolax, Avinza, Topamax, Singular, Domperidone, Bethanechol, Colchicine, Vancocin HCl, Misoprostol, Ketamine, and Relistor. Since I have the extreme gastroparesis, taking all these medications is even very difficult, as I have to take them with a carbonated beverage made into a slushy in order to help get them down. Even taking it like this though has been getting increasingly more difficult. In addition, the medications aren’t always absorbed either. I can literally take medicine in the morning and when I throw up 12 hours later, I can throw up the pills and they aren’t even dissolved. So we never know what pills are going to be dissolved and how much will be dissolved on a given day.
In addition, I have had countless procedures/surgeries such as implanting a spinal column stimulator, sympathectomy, epidurals, sympathetic nerve blocks, Botox, aquatherapy, physical & occupational therapy, biofeedback, TENS unit, acupuncture, ketamine infusions, and hyperbaric therapy.
Unfortunately all these treatments haven’t been really too good in treating my disease. Therefore, I really need to get to Mexico to have a radical Ketamine Coma that is made only for the patients with the most severe, intractable cases. There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top-notch care. Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries
My doctor in Mexico is absolutely amazing. I have never met such a wonderful and caring doctor. His name is Dr. Cantu and even though I will be going to Mexico to have this treatment because the amount of Ketamine that is needed in this Coma is so high that it is not FDA approved, the doctor was actually a graduate of the medical school at the University of Texas. He is like no physician I have ever met because not only is he the most knowledgeable physician I have ever met about my illness, but he is the most caring as well. He just doesn’t treat me as a “patient.” Instead, he treats not only me but also my dad as well as family. He doesn’t even wear a doctor’s jacket, but just a plain shirt because he knows the negative stigmas that patients associate doctors with.
Only 80 patients worldwide have gone through the treatment. Since this Ketamine Coma in Mexico is made only for the severest cases, it means that Dr. Cantu has actually seen the worst cases in the world. In fact, he actually stated that I am actually the “worst” case in the world that he has seen and only 2 other cases have ever been similar to mine. Luckily, I have been fortunate though to be able to speak one of the patients of those cases. I am including two links to her story so that you can see exactly what he went through and you can get a better idea what I am going through and what I will be undergoing with the Ketamine Coma in Mexico. The links are: http://www.youtube.com/watch?v=rh35hyDklP4&feature=share&list=ULrh35hyDklP4&index=1 and http://youtu.be/0W98atXl1XM
I really wish and hope that all this will disappear. I really hope that I will be able to get the lifesaving treatment that I need in order to survive. But, I know that this is definitely not possible without money because no one in this world does anything for “free!” Sometimes I wonder what this world would be like if money didn’t exist.
Unfortunately my family has spent all their lifesavings on my illness already and the well has run officially dry. We sold all that we could and we made whatever cuts we could. Yet, there is still no way that we can afford the treatment that I need. I have tried to post flyers, post on Facebook, make a website, contact the media, contact celebrities, etc. I have even been so desperate that I wrote to President Obama and Queen Elizabeth to ask for help. You wouldn’t believe it but I actually received a letter back from Queen Elizabeth expressing how “sorry” she was and how she would love to help me but I am not in her country. I really thought it was really ‘cool’ to get a letter from the Queen. However, no matter what I have tried to do, I really haven’t been too successful in getting the needed funds. After all, you know how the saying goes, “It isn’t what you know, it’s whom you know”… and unfortunately I don’t know anyone that really has connections. I know the real secret in this is “word of mouth” and therefore, I am asking you if you can please help me out and please spread word of my website so that I can receive the funds to receive the lifesaving treatment that I desperately need.
I am also going to be selling bracelets. The bracelets are very similar to the LIVESTRONG bracelets, but they are custom-made to raise awareness to my cause. They come in two different colors, which are blue and pink. The bracelets say “Help Fallon Fight” and also have my website on them. They are going for about $5 each, so if you are interested, please email me at Femirsky@gmail.com and put “Bracelet” on the subject line. Also, if interested in selling them as well, it would be much appreciated and please email me as well to let me know.
Please help me raise awareness and funds so that I can hopefully go to Mexico to have this coma. Time is of the essence, so I am in desperate and in urgent need of your help. Sometimes I wonder what my life would have been like if I never was afflicted with this illness. But then I say to myself that “everything happens for a reason” and this has helped me become the person that I am. My goal is to one day become a doctor and I can only think that this experience will only help me in that. I will be a great doctor because when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”
Thank you so much for all your continued support and encouragement. I really hope that I will be able to get my life back. But I know that it will take the help of others to get me there… both through donations and prayers. Yet, I am not “giving up” yet. I really hope that I will get to see that “light at the end of the tunnel that looked so good when I was growing up!” One day I will be able to get to enjoy all the joys of life again even if it is just going to the beach, have the breeze on my face, to eat, to walk, to be touched, to have the sun on my face, etc. … All the things that others take for granted and that I have learned that you can’t and won’t ever again! Remember… please spread the word that donations are much needed and greatly appreciated at www.youcaring.com/HelpFallonFight and if you are interested in purchasing or selling a bracelet, please contact Femirsky@gmail.com and put “bracelet” in the subject line!