I just figured that I would write today and let you know a few things that have been bothering me. I figured I would write something after a UK-based charity that provides support for people in chronic pain through a radio show and help-line emailed me to write for them. I can’t believe that they read my blog and were ‘touched by it – the sincerity and candour I am inspiring.’ I am definitely going to be doing this. At least I know someone is reading my blogs and I am so glad that I am making a difference in society. So I just thought that maybe writing this would better help others understand exactly what I am going through.
I suffer from a severe autonomic dysfunction and a neurological disease (Reflex Sympathetic Dystrophy), as well as a severe gastroparesis disease called (Acute Intestinal Pseudo Obstruction). I also have a brain tumor on my pituitary gland. I know, it is hard to believe that someone can be struck with this luck of being so sick, but yes… I was the ‘lucky’ one if you wanna say there is such a thing. The worse part is that there is no cure and since I have this autonomic dysfunction and neurological disease, my entire body is affected and other things are being caused because anything that relies on the nervous system is essentially affected.
As a result, my body is shutting down and I am rapidly deteriorating. In other words, I am dying and the horrible part is that I am not just having a peaceful death, but I am suffering 24/7 in my remaining days. The cost of treatment is so expensive and since I have been sick for so many years, the cost of treatment has weighed heavily on my family and as a result, we can no longer pay for the necessary treatment that I need to save my life. Therefore, I plead for others to help me get the much needed treatment because I don’t want to die and although there is no definite “cure,” I am willing to try anything and everything because I have too much to live for and I don’t want to leave without doing all that I want to do. I also plead for others to help me because I am in constant suffering. I am in constant pain 24/7 and never get a break. I am unable to eat, walk, etc. Things that people take for granted such as eating and walking and taking a shower have all been taken away from me.
RSD stands for Reflex Sympathetic Dystrophy. This disorder is not a disease; you can’t catch it from just being around me. It is a disorder of the autonomic nervous system. Doctor’s don’t know what causes it but the best theory is that the autonomic nervous system malfunctions and causes the nerves to misfire and send constant pain signals to the brain. As a result, I suffer from autonomic dysfunction as well, otherwise known as ‘dysautonomia.’ The autonomic nervous system controls a number of functions in the body, such as heart rate, blood pressure, digestive tract peristalsis and sweating, amongst others. I have also developed severe gastroparesis (acute intestinal pseudo obstruction) and osteonecrosis.
Doctor’s don’t know what causes RSD, but the best theory is that the autonomic nervous system malfunctions and causes the nerves to misfire and send constant pain signals to the brain. It usually starts in a limb and it spreads. It can spread full body, which is dangerous because it can be fatal if it spreads to the heart. Even though this disease is rare and even rarer that it spreads to full body (less than 5% of cases), I have been the unfortunate one that has been struck with this misfortune of having it spread throughout my entire body. Therefore, unless something is done and done quickly, I fear that I am going to die.
My neurological disease known as Reflex Sympathetic Dystrophy is considered the most painful disease that can exist. In fact, it ranks the highest on the McGill Pain index, which used by doctors and hospitals all over the world. It was developed by Melzack and Torgerson in 1971 at McGill University and was created to help evaluate pain and to have a standard by which to measure it. On this scale, it is ranked a whopping 42, which is above labor pain, phantom limb pain, cancer pain, chronic back pain, childbirth, and even amputation of a digit.
This disease is excruciatingly painful all throughout my body. I get pain from the very surface (just the touch of my skin) to the very core of my body. Since this disorder also affects the muscles, bone, and other tissue in the affected area, I also have muscle pain as well as a deep bone crushing pain. Other symptoms include extreme sensitivity to touch, swelling, temperature changes, muscle stiffness, atrophy, osteoporosis, weakness, fatigue, infections, and migraine headaches. The four major symptoms are constant burning pain, inflammation, spasms, and insomnia/emotional disturbance.
When asked to describe what it feels like there is words that can truly express the extreme pain that I feel. I get varied types of pain from throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area. The effected area is usually hot or cold to the touch. The pain I feel is just excruciating and nonstop. At times it like putting my entire body in boiling water until the skin is raw and then rubbed it with the roughest sand paper mixed with salt. It feels as if a red-hot poker were inserted into the affected area. Another way of describing the pain is feeling like I am doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week. In fact, my dad always says the song “Girl on Fire” is my song because that song reminds him of me because I am always complaining that I am ‘burning up’ or ‘on fire.’ It is truly as painful as it sounds.
I also have allodynia. Allodynia is an extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze, temperature, clothing, and even the gentle touch of a loved one. This makes it increasingly difficult on my family as their softest touch can now cause pain instead of comfort. I am extremely hypersensitive and cannot be touched by anything. The autonomic dysfunction also complicates things because I can’t regulate many things such as body temperature and as a result, it only exacerbates the sensitivity.
I can’t even sleep with a blanket. To relate the burning and sensitivity that I feel, I guess I can compare it to people having a sunburn because people with extreme sunburn have extra sensitivity and don’t want to use blankets while they sleep or want others to touch the affected area. Because of the allodynia, simple things like a 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. 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. In my case even direct sunlight can be painful. It keeps me from enjoying many out door activities as well as indoor ones such as going to the movies. It is just horrible because how would you feel going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain in addition to the enormous pain from the RSD itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer.
Inflammation is also present, but it takes so many forms of appearances, and can change in a second. This can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples that I have. My skin may sometimes have red dots or appear red or purplish blue due to the inflammation. The joints in my arm may sometimes appear red or more swollen than the surrounding skin.
My body is also constantly going through spasms and feeling like it is being twisted into knots. There are two kinds of spasms that may happen with RSD. There are spasms of the blood vessels and spasms of the muscles. The spasms of the blood vessels cause my body temperature to vary. I may feel as if I have a fever one minute and have chills the next. That plus the inability to regulate the temperature of my body due to the autonomic dysfunction plus the hypersensitivity makes it extremely impossible to feel comfortable. My parents call me a “weatherman” because I can feel the slightest change of temperature. Even one degree of difference can cause my blood vessels to spasm and make me feel like I am too hot or too cold. Unfortunately, both hot and cold also more pain and discomfort. Whereas the warmth triggers off the autonomic dysfunction more, the cold triggers off the pain more. It is possible for the cold to cause the RSD to spread and so I have to be careful especially in the winter.
However, lately my lower limbs have gotten so bad that they are literally turning black. This is scares the doctor because that means that no oxygen is getting to them. They are very fearful that it might have to lead to amputation or something. They are also fearing that even if I do get better, I might still have to lose my legs in the long run because the tissues have been deprived of oxygen for so long. In the meantime though, they are just hoping that I don’t get an infection or they don’t go gangrene because they don’t want to have to amputate them anytime soon. I have to be really careful because since I have such poor blood supply, I don’t heal like I should in that area and it can easily cause an infection in that area that could essentially lead to amputation.
In addition, I have muscle spasms that cause tremors and jerks. I can literally go flying across the room or off a couch. There are many times I am standing, but I end up falling to the floor because of the muscle jerk. You know how you have those dreams of falling and you wake up because you have that big ‘jerk’? Well that is what happens to me all the time even though I am awake. These spasms not only cause tremors or jerks throughout my body and make me feel totally exhausted and feel as if I have had an extreme workout the day before, but there are times, though, that I have sharp stabbing pain in my throughout my body that feels as if there are knives stabbing me because of these spasms. The muscle spasms can also cause cramps throughout my body that can get so bad that I literally have to overdose on medication to try to get through it.
The fourth symptom I have is insomnia/emotional disturbance, which includes limbic system changes such as short-term memory problems, concentration difficulties, and irritability. The most troubling of these is the short-term memory. It gets frustrating to not be able to remember names of people I just met or what I was just going to say. It is even more frustrating because I used to have the best memory, as my memory used to be photographic. I used to have a dream of becoming a doctor. Yet, nowadays I even question if I can even do such a thing because my brain just feels ‘fried.’ The memory problems surface most in my words. It is common for people with RSD to not remember what word fits best in the sentence that they were just saying. I have found some ways around this, but there are still some times when it is painfully obvious that I have no idea what word to use.
The insomnia is one of my more frustrating symptoms. As much as I want to sleep and I am tired, the pain just keeps me awake. It also causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, a pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep, which makes the pain worse and so the cycle continues. The only time I can sleep is when the medicines that I take knock me out, but that is usually only for ½ an hour. Yet, I am on so much medicine that makes me sleepy, but I can’t actually get to sleep. On average I get 2 hours a day. So when others sleep at night, I spend countless nights awake in agony. Thank goodness I have my laptop because at least I can go online or write or do something to keep me occupied. I usually watch TV or movies during this time… anything to help pass the time. Thank goodness for my cat Missy as well. She is my very best friend. We spend the nights together and she is such a comfort to have. Not only does she make good ‘company,’ but she is also someone to help me share the ‘scariness’, pain, etc. with. She makes it less scary because I know I am not alone.
There are also varied other symptoms that I have in addition to these major ones. I have trouble beginning movement or moving in general, increased tone (Muscle and skin tightness), increased reflexes, general weakness, and bone changes (Softening of the bones, Osteoarthritis, Osteoporosis, joint stiffness/tenderness).
I also only weigh in the 60s due to this illness causing severe gastroparesis. I am a walking skeleton. I am emaciated looking with every bone protrudes out of my body. This illness has caused my entire GI system to shut down and as a result, my stomach and intestines no longer function. Intestinal Pseudo-obstruction is caused by severe impairment in the ability of the intestines to push food through. I have severe abdominal pain, nausea, severe distension, vomiting, dysphagia, diarrhea and constipation. I am unable to eat anything, which even includes the simplest thing. I basically live on egg whites and ices and ice cream because they are the easiest to get down, but even they give me problems.
On top of all this, I also have osteonecrosis. Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The bone starts to die and may break down. As a result, my bones in my mouth are dying and they are protruding into my mouth. In fact, they are actually cutting through the gums and you can see them. Eventually they will break off. It is so painful and added to everything else… it is just more agony to suffer from.
However, with all these problems that I have, I am on a countless amount of medications. I take literally over 50 pills a day and it is like my breakfast, lunch and dinner, as well as snacks, all consist of pills. It is really difficult to even take them because of the severe gastroparesis and autonomic dysfunction and as a result, the only way that I can take them is with carbonation.
You would think that with all the medications that I am on that I would be pain free. After all, I take everything from morphine to methadone to dilaudid in addition to all my stomach medications. I take so many different kinds of medications that I feel like a walking pharmacy. It is very important to understand that while I take these strong medications I am never without pain. These medications only take the edge off so that I don’t have to live at the hospital. Obviously I am on some powerful medications, but I am very careful to not over medicate and to keep a balance between alert and able to focus and having the medication that I need. Since I would still like to do things and enjoy life, I would rather go with a little extra pain than being over medicated and “loopy”.
I also want to add that there is a difference between being dependent on these medications and addicted to them. I am dependent on these medications, which means that my body physically needs them in order to function properly without having withdrawals. I am not addicted to them, which means that I psychologically need them.
In addition, the medications that I am are not just potent in trying to ‘help’ me. They all have side effects and even though they are trying to ‘help’ me in one way, they hurt me in another. For example, the medications that I take for my stomach actually feed the brain tumor on my pituitary gland and are making it larger. The tumor is causing visual problems and headaches. Yet, they don’t want to remove it because it is too risky as of now. Even the medication that I take for my bones because I get an infusion that is supposed to help them since I have severe osteoporosis is hurting me. Without the meds, I am a life-threatening fracture waiting to happen. Yet, these meds are further contributing to the osteonecrosis.
The prognosis for RSD and gastroparesis is pretty dismal. I have had a lot of treatments and nothing has been successful. I have had nerve blocks, implantable devices, sympathectomy, therapy (physical, occupational), and even ketamine infusions. Yet, the only hope out there right now for the neurological disease is a huge ketamine coma that is not given within the United States because it is not FDA approved and a more intensive ketamine coma in Florida that I need. Yet, for all that to occur, I need to raise money because my family cannot afford it alone. The coma alone in Florida will cost us $20,000 at least.
In addition, I also need treatment for my severe gastroparesis because my entire GI tract, which incorporates my stomach, small and large intestine, etc. is essentially dead. I desperately need a multi-visceral organ transplant, which incorporates receiving a new stomach, liver, small and large intestine, and pancreas. Yet, it is very radical and risky. Only 6 hospitals in the United States perform this operation.
When you are as sick as I am, suffering, and deteriorating, you will go to all extremes to try to help yourself. I am so desperate for relief; I am willing to do whatever it takes if there is even a chance. Therefore, I am willing to undergo all these radical procedures such as the transplant and the ketamine coma in order to try to ‘live’ and overcome these illnesses. However, due to the financial cost of these diseases, my family can no longer afford the necessary treatment that I need. Since my illnesses are extremely rare and unknown, I am forced to travel constantly across the country to seek the expertise of top specialists, which cost a lot of money. Not only do we have the cost of the traveling expenses to worry about, but not all the doctors, treatments, medications, etc. are covered by insurance. Even if they are covered, we still have the copayments to pay, which clearly add up.
Besides the treatment I receive in New York, I have to travel across the country to California (Stanford University Medical Center), Florida, Ohio (Cleveland Clinic), and Minnesota (Mayo Clinic) for treatment. Since these places are not exactly ‘around the corner’ my father has to take plenty of time away from work to accompany me on these trips. When he doesn’t work, not only does the business suffer because he is the owner and if he isn’t there to do the work the work doesn’t go out, but the family also suffers because the money isn’t being made. The cost of this disease is just astronomical. Besides the heavy traveling expenses, the cost of the medicines, doctors, and treatments are astronomical. I take so many medications and they aren’t even all covered by insurance. In fact, some medications are even gotten out of the country and as a result, they come fully out-of-pocket. I see so many doctors that people my agenda book is filled more with doctor appointments than anything else.
Even with the insurance covering what they cover, the cost of the copayments just adds up. We pay over $30,000 just in copayments. If that isn’t enough, the cost of health insurance kills us as well because it also costs a lot and doesn’t even cover all that is needed. You would think that a health insurance that costs $3000 a month would cover all that is needed, but it far from does that. It gives me no out-of-network benefits and therefore, I am left to pay the entire bill when the doctor, treatment, etc. are not on the plan. This really hurts when you need a lifesaving treatment or to see a very important doctor who doesn’t take your particular insurance.
With being so very sick, there are plenty of times when a hospital is needed. However, like everything else… a hospital costs money because I have to worry about the copayments and such. I can’t just go to any hospital either because they don’t know how to ‘handle’ me. Therefore, since even going to a hospital is expensive, there are plenty of times I don’t go even though I should be there. In fact, even right now I should be in the hospital but we just can’t afford it. My dad constantly is telling me ‘you know you belong in a hospital,’ but the truth is that we can’t afford it.
With all these above-mentioned problems, that is why I am turning for help. We desperately need it if I am to continue receiving the treatment that I need to try to live.
I also wanted to say that even though I am suffering with an illness that can cause physical pain, the words and actions as family and friends can have a deep impact. It is really important to have a support team during this time because this disease isolates me so much. RSD is so isolating that the only time I really get to see a person is really on a special occasion. One of the most obvious is to ask what you can do to help. It seems silly to have to say that, but in the years since I’ve had RSD I have had only like 2 people even ask what they can do. If you are reading this then you obviously care and do want to help, so ask.
It seems that when you have this kind of illness or an unknown illness, people tend to shun you. Yet, if you had a familiar illness like the ‘flu’ or something, people are right by your side. If you are sick with a ‘normal’ illness or in the hospital under normal circumstances, many people will come to you and ask if they can do anything to help or even go out of their way to cheer you up. They will let you know that they are sorry that you feel so ill, and no one expects you to take care of everything at the same level you would have if you were well. Depending on how ill you were you might not even have to get out of bed. It wouldn’t be uncommon to get a get-well card or flowers.
Yet, for me… things are different. When you have a rare illness or an illness that has been around for some time, people don’t care as much. That is the truth that I live with. There aren’t any cards or flowers, no meals or phone calls. The only similarity is the constant sympathies. While being sick with a chronic illness does leave me more tired and in a lot of pain, I have no choice but to keep on living. That means that unless I’m having an extremely bad day I have to get out of bed and go on with life despite the pain.
Many people don’t know what do to when they encounter someone with who is very ill and as a result, they just ‘stay away.’ They may just say that they will say a ‘prayer’ for them thinking that it would make everything better and that it would make what they are doing (staying away) be ok. Yet, even though it is much appreciative that prayers are made because it can help make miracles happen, I know in my case it makes me upset because it really is just an excuse why they don’t want to really ‘bother’ with me. After all… how many times do you hear someone say that they are praying for their diabetes to be healed? The best thing that someone can do is to listen and then engage. Find out what you can do, even if it is simply talking to me about something, anything, other than my disease. After all, I am much more than just a ‘disease.’ I am still a person and still have so many likes and desires. I have lost so many friends and family because they can’t be bothered with someone with a chronic illness.
The biggest and most helpful thing that you can do is be a friend. It is an isolating disorder and a friend is one of my greatest needs. There are so many things that you can do as a friend like calling me just to chat, or inviting me to things. Inviting me to do things, even if I’m not able to I enjoy the activity is very appreciative because at least it lets me know that you thought of me. It is my choice whether I go or not, even knowing what it may cost me to do so.
I also wish that people would be understanding. People need to realize that even the most trivial thing is a huge undertaking for me. There are days when getting up and getting dressed takes all of my energy for the day. Don’t be offended if I don’t have enough energy to do something with you, it’s not personal.
Understand that just because I look okay doesn’t mean that I am okay. RSD is called an invisible disorder because you can’t tell if someone has it by looking at them. There is never a moment when I am without pain, so being okay is not realistic. I can be having a good day or a bad day, but never a day without pain. I try not to dwell on being sick. In fact, when you see me, I try to look as good as possible because I don’t want to appear ‘sick.’ I put on makeup, dress as nice as I can, etc. I even try to cover up being as thin as I am. I am always being told that if you didn’t know how very sick I was, you wouldn’t know it. After all, if you look your best, you feel your best. So please don’t question how sick I am just because you can’t really understand my illness or see it.
Another way you can help is by showing emotions. It is naturally upsetting to know that someone you care about is in pain. If you try to hide your emotions about it only makes me feel as if you don’t care. Don’t be afraid to talk to me or ask questions. I would love to answer any questions you have. It doesn’t bother me when you ask me questions or anything. In fact, I rather you question me and get the correct information than assume things and wonder about things that are untrue. Make mistakes around me. I understand not being comfortable being around someone with my kind of pain, but I promise I won’t get upset if you try to understand and aren’t upset if I try to help you in your mistake.
This disease has really taken a lot out of me. It robbed me of a lot of things that I loved to do. I was once a competitive figure skater, a great violinist, had the ambition to be a doctor, etc. All that was taken away from me. I can no longer walk, eat, etc. I basically live my life in the house. I have since started a bucket list that I would like to do before I die and there are so many things. I would love to go to England and see the palaces, Italy or Hawaii (my family hasn’t been on a family vacation in over 8 years), I would love to horseback ride, I would love to go to Hollywood to meet the famous actors and actresses, I would love to go to Disneyworld, I would love to swim with the dolphins, I would love to go skiing, go swimming, be on TV, meeting Kelly Ripa, etc.
Well… I think I wrote enough. I just wanted to share a little about my life and what it is like. There is still so much to add, but I just wanted to give you a little insight into this horrible world that I am living in. I thought maybe this would let you understand better my illness and why I desperately need help in receiving treatment.
I have tried numerous ways to try to get donations. However, I am out of suggestions and running out of time. I have a lot of appointments scheduled in the next month and I fear that without the donations that I will have to cancel them. I am supposed to be leaving in May for the Cleveland Clinic for an appointment for the huge ketamine coma even though I get weekly ketamine infusions here. I am also scheduled to leave on Memorial Day for the Mayo Clinic in Minnesota for my GI issues. I am really hoping that these hospitals will be able to help me because the Cleveland Clinic is top-notch and so is the Mayo Clinic. In fact, the Mayo Clinic deals with rare diseases and with cases that can’t be helped elsewhere. So, I am really hoping that they might have something up their sleeve for me, especially when I heard that they were doing a Clinical trial to test efficacy of IV hemin for gastroparesis. If that trial becomes successful and I am selected for it, it would really be great because it was seen in mice that hemin, a biological product of red blood cells, has been shown to boost the production of HO-1, thereby reducing oxidative stress, allowing repair of the ICC network and normalizing gastric function. In short, it would fix my gastroparesis.
But like I said before, I have to find the funds first because this isn’t going to all happen because my name is Fallon or for free. So… if you have any ideas or can spread the word that donations are much needed, please do so.
Before I leave… just wanted to let you know that I proved everyone this week. We had a new vacuum delivered to the house because the old one broke and was under warranty. Not only did I get it into the house all by myself when it practically weighed as much as me, but I put it together all by myself. I really impressed myself. And everyone thought that I couldn’t do it!! Just shows… don’t mess with me!! I am SUPERWOMAN!!
Today is Missy’s birthday. I can’t believe my baby is 9 today!! I love her so much. I don’t know what I would do without her. Not only is she my companion, but she is also my baby sitter and best friend. She always can tell when I am not feeling well and always stays with me to make me feel better. She is simply the best.
We are all booked for the Cleveland Clinic, but unfortunately we had to take a hotel that was 10 minutes away. We wanted to stay at the hotel on campus, but they are all booked. There are 3 hotels on campus, but they are all completely booked. So, we are forced to stay ‘downtown,’ which forces us to take a cab back and forth to the hospital. This is now an added expense.
Well until next time.