I bet you weren’t expecting another update so soon. Well to tell you the honest truth, I wasn’t honestly expecting to write one either so soon but a big thing has happened and I figured I would let you know about it. It is also a huge thing to ‘swallow’ so I figured that if I wrote about it, maybe it would make some more sense to me and maybe I can get a better grip on all that is going on. I am just in total bewilderment with everything that is happening, especially with the news I was given tonight.
I guess I will start with the biggest news that I was given tonight. It is amazing that every time I think I have everything figured out or that the doctors have officially finished diagnosing me with everything that could possibly be wrong with me, they always find something else. It is amazing how I am sick with so many illnesses and yet, they always seem to find something else wrong. I feel like I am from “Ripley’s Believe It or Not” because how much can a person have wrong with him or her? I mean this is ludicrous!
I am so young too and I am suffering so much. I am diagnosed with such rare and life-threatening diseases that unfortunately have no known cures. I have been diagnosed with a neurological disease called Reflex Sympathetic Dystrophy, Autonomic Dysfunction, severe gastroparesis (actually acute intestinal pseudo obstruction), a pituitary brain tumor, osteonecrosis, and severe bradycardia. I also have a lot of other issues going on with my body, but they are all related to these other major conditions, as they are results of my body being affected with these illnesses and ‘shutting’ down. However, never would I think that I could be diagnosed with something else in addition to all that.
After speaking to the doctor tonight, he said he reviewed all my records and he honestly thinks that in addition to all that I have going on with me, he thinks that I also have a connective tissue disorder going on called Ehlers-Danlos Syndrome. It is also a rare disease that currently has no known cure. After reading more and more about this illness and being told about it from the doctor, I am thinking more and more that it describes me. So could this be in the boiling cauldron of things that are wrong with me as well? I just don’t know. I guess the only way that we will know definitively is to go to a geneticist and to have me tested to see if I am.
Ehlers-Danlos syndrome is a group of inherited disorders that affects your connective tissues — primarily your skin, joints and blood vessel walls. When you have this syndrome, it results in overly flexible joints ad stretchy, fragile skin. This syndrome is very dangerous because it can cause the fatal rupture of blood vessels including the walls of my blood vessels, intestines, or uterus to rupture. This illness also causes severe dislocations because the joints pop in and out because of extreme flexibility and loose joints, as well as abnormal scar formation and wound healing. It also results in soft and stretchy skin that bruises easily. This is just one horrible disease to have especially when you have Reflex Sympathetic Dystrophy because they are nemesis of each other. They work hand-in-hand to worsen each other and to make me in even worse condition. It is like a never ending cycle because the Ehler-Danlos syndrome causes all this bruising and trouble with wound healing and such, which spreads and exacerbates the Reflex Sympathetic Dystrophy. However, it is not 100% confirmed that I have this illness on top of everything else, so I am not going to jump to any conclusions. They are thinking about sending me to a geneticist to investigate as well because genetic tests on a sample of your blood can confirm the diagnosis in some cases and help rule out other problems.
There are a variety of genetic causes that can cause this illness and some of these causes are inherited and passed on from parent to child. The more we have been learning about this illness, the more we tend to think my mom possibly could have this illness to and could have passed it to me even though she definitely didn’t have it in this severe form. We just found some symptoms that this disease has that my mom has had, so we are thinking that possibly she has had this disease all this time and could have passed it to me even though she wasn’t as sick with this disease as I am. After all, there’s a 50 percent chance that a parent will pass the gene on to each of their children.
Of course this disease doesn’t come with pain too. So in addition to all the other severe pain that I am already in because of the Reflex Sympathetic Dystrophy, Autonomic Dysfunction, Osteonecrosis, etc. I now have to deal with all this pain too. So it is just so much more pain that I have to deal with and even though one form of pain control such as ketamine might work with one form of my illnesses such as the Reflex Sympathetic Dystrophy, it doesn’t mean it is going to help with the other illnesses. Therefore, just because I get helped with one mode of treatment to eliminate the pain from one illness, it doesn’t mean I will be out of pain because I will still have to worry about the pain that is occurring from my other illnesses. After all, Ehler-Danlos syndrome is known to give severe joint and muscle pain on top of everything else it does.
So never a dull moment, right? In the meantime, I have been getting things organized for North Carolina because I leave in exactly one week. I am going to North Carolina to get a more intensive ketamine infusion than I am getting currently in New York even though I undergo ketamine every other week. In 2001, it was hoped that a Ketamine induced coma would cure CRPS because it blocks the MNDA receptors. However, even though it did prove to bring many a reduction in their symptoms, the symptoms returned in most people. That is why patients have to undergo ketamine ‘boosters’, which is also ketamine infusions but not as intensive as the original dose.
I also figured that I would take this time and let you know a few things about what my day consists of already so that you can better become familiar with all that I am dealing with.
First of all, I am in pain all the time. I never get a moment that I basically free from pain except when I am knocked out from the ketamine. Other symptoms I have are a change in color and temperature of the affected area (usually cooler than other parts), burning pain (like the worst sunburn ever or that someone poured lighter fluid on me and then lit it), and changes in the nails, bones and muscles. My muscles atrophy, my bones become more brittle, and I experience dystonia as well. Dystonia is defined as a neurological movement disorder, in which sustained muscle contractions cause twisting, repetitive movements or abnormal postures. Pain causes lack of motion and lack of motion leads to atrophy.
I am extremely hypersensitive that I suffer from pain form the most innocuous thing you can imagine. Even the lightest touches or lowest sounds cause me pain. What may seem harmless to an average person actually causes me intense pain such as someone touching me, my foot being kicked, being accidentally bumped into, being outside and having a breeze go by me, etc.
There is just no pain like RSD. It is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY! To put that in perspective the only thing close to this type of pain is amputation, but RSD is still even higher than that and also amputation is quick whereas my pain exists 24 hours a day 7 days a week. Whereas RSD is ranked a whopping 42, Arthritis pain is ranked about an 18, Cancer pain a 24, and Chronic Back Pain a 26.
With all this pain and suffering, it is no wonder why I can’t sleep. Since I don’t get normal sleep, I don’t get the type of sleep that is needed to heal a body. I have severe insomnia because not only does the pain keep me awake, but the Reflex Sympathetic Dystrophy causes changes to the Limbic System of the brain, which is the part that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more. Yet, when I am awake, it is often too physically painful to actually get up and out of bed.
I start my day with taking medications and that is how I spend most of my day as well. In order to look somewhat ‘normal,’ I have to take over 50 pills a day. Of course they don’t come either without paying a price, as there are the unpleasant side effects to deal with; upset stomach, drowsiness, diarrhea, constipation, headaches, and many others. These pills do not take all of the pain away, but rather they just enable me to get up, move around, and have some semblance of a “normal” life; they simply allow me to function.
Besides taking medications all throughout the day, I spend most of my day in the bathroom if not on the couch. I have become too weak lately to do anything because this disease has been shutting down my body and I am rapidly deteriorating and as a result, I just lay on the couch hoping and praying that I will see another day. Sometimes I do wonder though if the other side wouldn’t be a better option because I just can’t take the suffering anymore. Yet, I then remember all the ‘hope’ I have in getting better and all the stuff I have to give to the world and all the stuff I have yet to do and still want to do… and I keep pushing onward… hoping for a day when I am cured and able to reach my dreams and don’t have to suffer anymore.
In addition, I spend most of the day in the bathroom when I am not on the couch. As I have severe gastroparesis, my entire GI system is ‘dead’ and is shut down. I cannot pass nourishment through and through extensive testing, it has been determined that the disease has affected my swallowing as well in addition to not allowing my stomach and intestines to push things through them and empty. As a result, I have trouble eating or drinking anything and whenever I consume anything (even ice), I end up vomiting. I only weigh in the 60s and have a BMI of 10.2. At this level, it is a true wonder that I am still alive and able to function. Even the doctors are amazed that I am still alive.
I do try to do as much as I can during the day because I don’t want to ‘give in’ to my illness. I know that if I give it an inch, it will take a foot. I do this knowing I will pay a pain-toll later because the alternative is to sit and do nothing… letting my body worsen and mind waste away. That is why people don’t quite understand how bad my illness actually is or how much I am really suffering. When I do see people, I try to always look my best or do as much as I can so the ‘front’ I put up hides what exactly is going on. Yet beyond that false façade is a person being pushed to the limits. What they can’t see is the pain, mental and physical, I am pushing down just to be there as well as the price we will be paying later that day and night.
People don’t really realize the true suffering that I am undergoing to can completely understand my illness unless they spend an entire day with me. When I am in front of people, I try to put up a ‘front’ and look my best. Unfortunately some people who see me during these “good times” believe that is how I am all the time. What they don‘t see is the pain I have that night and/or the next day because of what I did. Nor do they take into account all the medications that I took before or afterwards just to be able to do this stuff or that I will have to probably spend a great deal of time resting afterwards.
I have had to change my whole life to revolve around this illness. Because of this disease, I had to change my whole way of thinking to include doing things in moderation. Since I am my strongest in the morning and my pain is at its lowest, I usually have to schedule everything for that time. By early afternoon, I am usually done for the day. My life totally revolves around doctor appointments and instead of having an agenda book filled with fun social activities with friends, it is filled with medical appointments. Having this illness is a full-time job… ne with no vacations, terrible benefits, and no way to quit.
That is why it is important to have a support system of friends and family. However, I have to say that when you are ‘sick’ you really learn who your true friends and family really are. They are the ones who stick it out with you. It is not just the medications or the therapies that gets me through the days, but it is the friends too. They are all so important… not just for the physiological changes that they bring to my body but for the psychological ones as well.
Thank goodness I have my cat, dog, and of course turtle. They are really what gets me through the day and night. They have come to be my best of friends. They notonly give me comfort during the day, but they stay with me awake during the night when the whole house is sleeping and I am all alone left by myself. They have learned to be there to cuddle with and to be here when I am upset. It is amazing how they know when I am upset or even know when I am sicker than usual. My parents constantly call my cat “my babysitter” because she watches me and takes care of me so well… especially when I am sick. She never leaves my side. I must say that I have the smartest animals in the world. I definitely wouldn’t be here today if it wasn’t for them. In fact, that is one of the major downfalls of traveling to get treatment. When I travel, I can’t bring them with me, as I go with my dad alone. We can’t even afford for the whole family to go when I have to go out-of-state for treatment or for an appointment and as a result, my mom stays behind with my pets. I miss them all so much when I go.
Perhaps though no one is more important than my family. They have given so much up for me and I could never thank them enough. Not only has my life drastically changed, but so has theirs. They can’t do many things that they would love to do such as go on vacations, go out to dinner, etc. because of me. In fact, we haven’t been on a family vacation in like over 8 years and is definitely something we miss and wish we could do. It is something we definitely could use as family, but unfortunately under the given circumstances, it just isn’t possible. My parents should be at the point in their lives where they are enjoying themselves. However, they are too busy taking care of me. Even when I am down in the dumps, they always make me smile and laugh. They make the sun come out even on the ‘gloomiest’ of days.
I have the best dad in the world, as he is not only my dad, but my hero and very best friend. He has given up so much for me and he would do anything and everything to get me well. He takes me to all my appointments and takes me across the country. He is like my knight and shining armor because he always comes to the rescue. When I am unable to walk, especially after a treatment, he is the one who is always there to carry me and to make sure that I am ‘ok.’ He spends countless nights awake just to check on me to make sure that I am ‘alive.’ He even wakes up during the night to give me medicine or my snack since I need to eat during the night too. My dad is one of the best and amazing people I know. He is like superman. He will do whatever he can to try to help me out. He knows how much I need help and he tries to do whatever he can to make sure I get it including not only taking me to the places, but he works like a horse so that we can try to afford it. He is up at 3 AM, out of the house at 4 AM and not home from work til 7 PM. He does this 7 days a week… just so we can try to make ends meet. My mom always says, “If something happens to me, my dad will never recover.”
My mom is also amazing. Even though she doesn’t go with me to appointments, she is always around to take care of the house and try to run the business as much as she can when we are gone. She is the one that ‘holds down the fort’ when we are gone. Even though she might not physically be with me all the time because she doesn’t travel with us, my mom is the first one to make sure that I eat when we are away so that I don’t lose any weight whatsoever.
Sometimes I think that it stinks to be me because I have this illness that has robbed me of so much. Not only has it taken all the stuff I have taken for granted such as the ability to walk and eat, to have fun in the world because I spend my days isolated in my house, but I also have lost many friends along the way. My illness is a major part of my life, as it has to be factored into every decision I make! if it isn’t … I will pay for it later, as will our loved ones. I often worry that my friends will get tired of hearing about my illness and will walk out on me. Sometimes I wonder why people stick around more when people have MS or Cancer, but then I realize that people are probably more willing to hear about cancer or MS because they are used to hearing those words more. Sometimes I think it really sucks to be me because no one understands because they can’t really relate and as a result, they just walk out on me when I could use a friend to lean on.
Even though this disease has really knocked me down… I am certainly not out!! Even though this disease loves torturing me each and ever day till the bitter end, loves to give me excruciating pain by giving me shooting pains and taking its flames and burning me in the worse possible way, and loves to make me wish at times that I was dead… I am still pushing onward. Sometimes I think that this is a real nightmare that I am going to wake up from soon, but then I realize that the only way this is going to end is if there is a ‘cure’ found and I get the lifesaving treatment that I desperately need. However, since I have been sick for so many years and have undergone so many modes of treatment such as blocks, medications, sympathectomies, etc. I have only radical and expensive treatments left to do. My family can no longer afford the necessary treatment to get me out of this nightmare and that is why I plead with you to help me because I want to get out of this ‘Hell!’ It was once stated that if ‘Hell’ were a clinical medical condition, it would be known as my disease.
I have tried various ways to raise funds because of how costly this disease has become and how much I desperately need treatments. If I don’t get help soon, I will die because my body is shutting down. The doctors even have stated that I don’t have much longer to go. After all, I only weigh in the 60s and have a BMI of 10.2… how much longer can a person survive like this? Yet, to get the necessary treatment that I require, I really need your help. If you can please spread word of my site or bring attention to the fact that I desperately need donations in order to receive this very lifesaving treatment, I would really appreciate it. Even if you can think of any way of fundraising, I would appreciate it. I have tried various attempts in the past to raise money, but they haven’t really been successful. After all, I have realized that it isn’t ‘what’ you know in this world, it is ‘who’ you know and unfortunately I don’t know anyone that has connections to the media, which would be the best place to reach out to get help with. I have tried websites, posters, writing to the media, etc. but nothing has worked. Any help that you can do would be much appreciated.
Even $1 raised is one less than I have to come up with. After all, the cost of treatment is just so expensive, as even when the treatment and medication is covered by insurance, we still have to worry about paying a copayment, which has added up to over $30,000 a year. We also have to worry about the traveling expenses since we have to constantly travel across the country, as well as the cost of the treatments, doctors, and medications too that aren’t covered by insurance. Just the Ketamine alone will cost between $20,000-30,000 and it is not covered by insurance. Everything is just so costly and we just can’t do it anymore. We have been doing it for so long and the well has basically ‘run dry!’ I hate to be a crier, but unless we get some help, I fear I won’t be able to get the much-needed lifesaving treatment. After all, we are even having difficulty paying our mortgage and even putting food on our table. You really don’t realize that when you have your ‘health’ you really have everything. As the saying goes, ‘health is wealth!’
Well… thanks for listening. I will write again when more info is known.