I just wanted to write and let everyone understand what I am going through because I realized that maybe not everyone is familiar about my story.
I was once an A+ student who loved school, was involved in many extracurricular activities, was a competitive figure skater, and violinist. I had friends, loved to go out, was able to have fun, was able to eat, etc. However, all that has changed in the last few years. I have spent the last 8 years incapacitated, paralyzed, and unable to sit or walk and eat. I spend most of my days confined at home and alone. Any normal touch will cause pain; my clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by me in a crowded hallway, etc. I can’t even tolerate wearing clothing especially a sock and shoes or even sleeping with a blanket because anything that touches my skin sends my up the wall. 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 have to take appropriate actions when in bright lights and sun such as always wearing sunglasses. Finally, the temperature has to be a perfect 74 degrees without any humidity or wind because any deviation of that number can easily be felt.
The pain I feel is indescribable, as I suffer all the time… 24 hours a day 7 days a week; I never get relief. All attempted treatments have not even come close to relieving any of my suffering. I have seen many, many doctors, undergone numerous painful tests and procedures (i.e. stimulators, sympathectomies, blocks, surgeries, radiofrequency, etc.), has been prescribed over 50 medications and there really isn’t a medication that I haven’t tried, and has been hospitalized frequently including being intubated and on a ventilator. I am severely debilitated and currently weigh only in the 60s. This is certainly no life for a 31-year-old young woman! Yet, despite all that I am going through, I am still continuing to push onward, hoping for a day that I will be able to be pain free and able to resume my dreams of becoming that “doctor” that I have dreamt about.
I suffer from a rare and life threatening illness known as Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder, as well as autonomic dysfunction, severe gastroparesis, osteonecrosis, and a pituitary brain tumor. On a daily basis, I suffer from constant sharp, stabbing, tingling and burning pain throughout my entire body; paralysis; intense muscle spasms; gastroparesis; severe headaches; redness and discoloration of the limbs; tremors; twisting of my limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; and painful skin ulcers. It is the most painful illness you can experience and it hurts constantly. In comparison to other diseases it is ranked higher than cancer, childbirth, and even amputation of a digit. I constantly feel doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week. I constantly get prickly and blister because I can’t sweat due to the autonomic dysfunction. Then it feels like I have no skin left on me because it is all burned off and all that is left is raw skin with salt put onto it that is rubbed with sandpaper. I also have allodynia, which is extreme sensitivity to touch, sound, and/or vibration. The pain is constant and unrelenting, but despite my suffering, I still hope that I can get better and therefore, my family and I have been searching for a treatment that can help me despite all the letdowns that we have had.
My journey with this disease can really be traced back to 2001 when I just finished up my freshman year at NYU, when I was 19 years old because that was when I was officially diagnosed. However, even though that was the time I was officially diagnosed, we think that I have had this illness much longer than that, but due to how mysterious and unknown this illness is… we just didn’t know it. When I was a competitive figure skater and used to injure myself and break bones, I used to fall, break bones, turn different colors, have an overly excruciating and out of proportion amount of pain, and had to wear a cast longer than a normal person. However, even though it took me longer to heal and such, I was still able to overcome all of these injuries and never looked further into it because we never had any reason to or even knew that there could be any underlying problem such as this that could be causing it; we didn’t even know this illness could exist. Then, right before graduating high school I became bed bound for about 2 months and it was discovered that I had a mass that exploded in my abdomen. The mass had tangled up all my organs and as a result, when the doctor operated to remove it, they also untangled all my organs and they also took out my appendix because you didn’t need it anyway. However, after having this surgery, I had a very hard time eating, as it was very difficult and painful. But we never really understood why this was occurring. Even though I was suffering from the pain and trouble eating, I still returned to going to school and enjoying my life. However, 2 years later things changed because I started having difficulty walking and I was told that I needed surgery on my foot because I was “walking” on the bones and getting masses and calluses inside
After completing my first year of college at NYU, my life changed forever. I took my last
Final on one day and the very next day I went in for reconstructive surgery for my foot because of the extreme difficulty walking, as I was getting these masses and calluses inside. However, now that we know that I have this illness, it is unknown whether it was the disease actually causing this pain that I was exhibiting and making it difficult to walk OR if it was actually because I was “walking” on the bones and getting masses and calluses inside. Yet, in any way, I literally went to sleep for surgery one way and woke up another way.
When I woke up from surgery, I was in excruciating pain. The pain was the most intense pain that you could imagine. The doctor blamed it on the surgery and said that the pain would ease up. However, it never did and only worsened. When I was unable to walk on the foot because of the pain, the doctor said to my parents that they needed to “take away my crutches because I was having psychological issues from seeing the pins coming out of my leg.” Even though I knew that this wasn’t the case, we had nothing else to go on, so what other reason could there be? It wasn’t until later that night when I was at my computer and my whole entire body went blue that we knew that something was definitely wrong and it was definitely NOT in my head; it was definitely more than just a fear of walking on the foot!
Most people (and doctors!) have no idea how serious Reflex Sympathetic Dystrophy is and no clue how to properly diagnose it, and that is why it had went so long without being diagnosed and even now it wasn’t being diagnosed. If it weren’t for the first doctor that we saw happening to know about this complex and mysterious disease, we probably wouldn’t be here today, still fighting because not many doctors know about it. Even when doctors do know about it, they often misdiagnose it on a person too.
We instantly started our journey in trying to seek the necessary treatments to try to get better. Yet, despite whatever treatment I have endured, the pain has becoming more intense and unbearable and the disease was continuing to spread. We started out with doctors in the local area and extended out network to incorporate doctors all over Long Island and then all over New York. You would think that you would definitely be able to get help in New York considering how advanced in medicine New York is by having so many top name hospitals. However, never did we imagine that we were going to have to seek treatment and the knowledge of specialists across the nation. This disease was not just painful, unbearable, unrelenting, but also extremely expensive. As it turned out most of the treatments were not covered by health insurance and the amount of treatments and appointments that we had to see were astronomical. Even the ones that were covered had copayments and therefore, they quickly added up as well. We even had to consider the traveling expenses. We went from being able to live comfortably and pay our bills to having bills just pile up.
Despite all the pain, my weight continued to plummet. I went from weighing a healthy weight to weighing only in the 60s and having a BMI of 10.8. My GI tract was shutting down and it got to the point where I had difficulty swallow anything including my medications. In addition, I vomited constantly. Every time I put anything in my mouth, even ice, I would throw it up. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body was just shutting down.
I have had so many treatments and despite all the treatments that I have had, I am still continuing to suffer. I have been treated with multiple pain medications, at the highest possible doses, that many doctors have told us that the amount of medications I am taking is enough to “kill a horse.” Yet, they had little or no effect on me. That being said, I also underwent, stimulators and also sympathectomies not only to help with the pain, but also to help save my limbs because my limbs would discolor so much and literally turn black from lack of circulation. Thankfully though it was discovered that there was one treatment that would work called a Ketamine coma that could potentially relieve my symptoms and help save my life.
The drug Ketamine holds great promise for patients with RSD. Ketamine is considered a NMDA receptor and could potentially “cure” me. However, due to my RSD being full body and so severe, doctors have said that the best treatment for me and that can possibly put me in remission and afford me some semblance of a “normal” life is out-of-the-country because it is not FDA approved in the United States. Even though I was getting ketamine infusions/comas every other week in New York, the amount of ketamine that I was receiving was nowhere compared to the amount I needed to be put into remission and hopefully reverse the illness. During out-of-the-country coma, the hope would be that my brain will “reset” itself so that my nervous system will be able to send the correct signals to my brain. Even though it cannot be accomplished in these one day infusions/comas in New York that I undergo because the amount of ketamine that I get is way too low, it is still a great relief to get because it is the ONLY time I am out of pain. It is also thought that hopefully it is stopping the spread or at least slowing the spread of the illness, which has been shown to spread like a wildflower because anything traumatic (a needle stick, a punch, stubbing your toe, surgery, a shove, etc.) can easily spread it.
However, it is extremely expensive to have this coma out-of-the country and will cost easily over $100,000. So in the meantime we are looking to getting a more intensive ketamine coma that I am getting in New York that will take place in North Carolina. Although not as intensive as the one not in the United States, it is the next best option. It is also a bit more affordable, as it is only half as much. So we are hoping to at least be able to accomplish that.
In addition, as my body is shutting down and my GI system is completely dead, I will need multiple surgeries on that as well. It is hoped that possibly the ketamine in a high enough dose could possibly help this as well, but it isn’t guaranteed. We have recently just came back from John Hopkins Medical Center and will be returning within the next two weeks for multiple surgeries. I will need tubes placed in me to try to give me nutrition, they will possibly be putting in a ‘vent’ to try to get the gas to escape me since I get so distended and it won’t move or pass on its own, a ileostomy, and they will even be giving me certain medications that will stop my heart that will have to be restarted again with the paddles. It is hoped that when the heart stops and through the medications administered during this time that it will ‘help’ my GI tract. These treatments are not ‘cures’ but to try to help me ‘buy’ time so that I can possibly live longer. The only cure for my GI tract besides that huge ketamine coma out-of-the country is to get a very rare and radical multivisceral transplant (stomach, small and large intestine, pancreas, liver), which only 6 hospitals in the country perform. It is extremely dangerous and expensive. Therefore we are hoping that I will be able to have that transplant as well, but it will mean that we will need plenty of help affording it and it will be extremely dangerous because I am also in no condition for surgery. I am so fragile that there is such a high risk associated with this procedure. I am so underweight and don’t really have the reserves to heal or to recover.
Some might think that the above procedures such as the ketamine comas/infusions and the all the surgeries including the transplants are extremely radical and scary treatments. However, what scares me more is to think that I could spend the rest of my life in this condition… unable to walk, eat, or take care of myself. Since all reasonable treatments have failed to help me, I am willing to try everything and anything to help regain my life back.
This illness has not only affected me, but has taken a great toll on my entire family. Plenty of friends and family have walked out on me, and you really learn whom your true friends and family are when you are in need. The only ones that I have really behind me have been my family. Yet, this disease has taken a huge toll on my entire family both financially and emotionally. It kills my parents for what is happening to me and that they can’t do anything to help me. Despite all the ‘trying’ that they do and wanting to ‘help,’ they can’t get rid of this illness. I can see the pain in their eyes all the time as they watch me suffer. I know that if they could take this illness away from me for even a minute that they would.
They are the ones that give me the strength to keep on living and holding on. I just wish that I can be held and hugged by them, but even that is impossible because even the gentlest touch is painful to me. My dad is not only my dad, but my hero, best friend and knight and shining armor. He takes me to all my doctor appointments and carries me out of treatments and when I cannot use my crutches. He spends countless nights awake when I am having a worse night than usual. People definitely say that if something happens to me, he would definitely never recover.
It pains them so much that they can’t afford the necessary treatment that I need to hopefully be able to live. Despite all the cuts that we have made, we are really having a hard time paying the bills. My dad’s business isn’t doing too well, especially since he is always away with me. We have tried countless ways to raise funds such as through websites, Facebook, writing to the media, making posters, etc. but nothing has been successful really. I know the ticket is to bring as much attention to my illness as possible and how the media would be the ticket for success. However, I know that it isn’t “what” you know in this world and it is “who” you know, but unfortunately we don’t know anyone to give us the necessary connections to be able to get my story across on television or any of the other types of media. It hurts me so much when I see other stories heard and no matter how hard we try, I just can’t get my story heard. If nothing else, I want to get my story heard so others can become knowledgeable about this mysterious disease and show others how much they should appreciate life and not take anything for granted. People don’t realize how fast something that they easily take for granted such as eating or even walking can be taken away. People don’t realize that when they have their ‘’health’ that they have everything in the world.
My goal is to one day become a doctor. My goal is that with all these treatments, especially the surgeries at John Hopkins and the ketamine comas/infusions that I will be able to get that chance. Therefore, if you can please bring attention to my website and please say a prayer, I would really appreciate it. It is a constantly battle that I am going through, but knowing that I have your support and encouragement really means a lot and gives me the strength to keep going. Thank you for standing behind me through this fight. Even if the worst should happen and I don’t happen to win this war, at least no one can’t say I didn’t put up a good fight!!
Thanks for everything. Until Next time.