FALLON MIRSKY

Please help SAVE MY LIFE!

April 28, 2013

ImageHi-

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.

1346103537My 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.

ImageBefore 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.

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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.

– Fallon

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April 24, 2013

ImageHey-

Just wanted to write a quick update on what is happening since things are really deteriorating fast and I never know from one minute where I am going to be or how much worse things are going to get.  I figured this way you will be up-to-date on everything that is happening and this way I don’t forget anything since so much has been happening, and this way you are always kept in the ‘loop.’

I am getting stuff that never happened before. We all know I belong in the hospital and to be frank with you… I know it too. I am really really sick. I honestly thought something was going to happen to me the other night…. I thought it was the night. Part of me was even really hoping it would because I was suffering so much. I am sooooo weak and suffering so much… not including all the pain that I am in. It just isn’t fair.

I have been really sick lately… sicker than before.  Every time I think that this illness can’t get any worse or that I can feel any sicker, it always somehow always gets worse.  It is just simply horrible.  I just can’t get out of my suffering.  I really need help desperately.  I am getting so weak that I can barely get up or even move a limb.  Even laying on the couch and opening my eyes is getting to be too much.  I am in so much pain and so weak that it is just plain horrible.  I still have my good times, but the amount of times that I have energy to do anything is really becoming limited. 

Even eating has taken a great decline.  Even the little that I have been able to eat before has really declined as well.  I don’t have an appetite and my stomach is really killing me.  I have been keeling over because of the pains in my stomach, as well as suffering from extreme nausea.  Whereas before I was only able to really get down egg whites and ice cream and my ice-pops, it is even getting difficult to get those down now.  I can’t even get down ice-pops anymore and for me not to get those simple things down, you can tell that things are bad.  But, I have to force myself to have at least the ice pops because it is so important to have them since my heart meds and electrolytes and other essential stuff is in those pops. 

But I must say that even my parents are getting extremely worried because at the very least I ate a little egg whites or even sat at the table for dinner.  Now, I can’t even say that I do that anymore.  I usually spend my time on the couch and dinnertime, which used to be one of my favorite times because it was a time that the entire family got to spend time together and talked (one of the very few times we all got to be together at once) is no longer possible.  But, I am still hoping that this will pass and I will be able to go back to at the very least sitting at the table.  It is just the pain in my stomach is so bad and I have been in too much pain to sit at the table.  I have also been too weak to do so as well. 

Even with the change of weather, it isn’t helping.  I hate the change because it is too warm to use the heat and too cold to put the air conditioning on.  Most people usually love this time because they can open their windows and get fresh air into their house.  However, I hate this time because opening the windows is literally torturous to me and literally kills me.  Not only does the wind and breeze that comes through the window kill me and cause me excruciating pain, but just the texture of the air and the quality of the air causes me great distress, as it really triggers off my autonomic dysfunction.  It is bad enough that I am in physical pain because of my illnesses.  However, nothing is worse than when the autonomic dysfunction kicks up.  Sometimes I will take the physical pain over the autonomic dysfunction over anything because when the autonomic dysfunction starts up, it is unbearable.  That is one reason I tell doctors that I don’t want any procedures that will stir up the autonomic dysfunction.  It is the worse because it makes me unable to breathe, I get really hot and prickly and unable to cool down because I can’t sweat and don’t have the ability to regulate my body temperature, etc.  It is just the worst. So to have that happen and then have all the pain I have from the RSD and gastroparesis, I am really a HUGE mess. 

I feel so bad for my family because I am constantly making them suffer.  They have given up so much because of me. They can’t go out to dinner because of me, they can’t open windows up because of me, we can’t go on family vacations because of lack of funds, etc.  In fact, my brother has to live with the door to his room closed because in order for him to have his fan or his windows open, his door has to remain closed because I will feel it even though I am not directly in his room.  I am so hypersensitive that I feel everything and anything. 

To help with my breathing, I have a special humidifier that helps with it.  I especially need it in the warm months and especially when there is this change of weather.  However, my old humidifier broke recently and even though I always kept a back up, I ran into a huge problem because the back up machine was broken.  I have had the same machine for about 10 years, so when I tried to get the same machine again because I was really happy with it and it wasn’t so expensive, I was unable to find it.  As a result, I had to go with another machine.  I am really had issues though with getting a new machine because of the money though.  You would think that since it is for my health that I would not care about the cost because I need it in order to survive.  However, I see the $ sign on everything and anything and I don’t want to spend money unnecessarily especially when I know we don’t have it and especially when I need treatment that we can’t even pay for as it is. 

I see $$ signs for everything. Anything that costs money bothers me to buy because I know how important it is to save every single dollar because I need it for treatment.  Since I couldn’t get the machine that I currently had, the machine I needed to get was so expensive.  So I did a hunt to find the cheapest deal I could find for the machine that I needed. I ended up finding a place that had a deal that gave me $100 off because the box was ‘damaged.’  The actual product was supposed to still be brand new, but the packaging was supposed to not be in the best condition.  I figured that it was worth it because who cared what the packaging was like as long as the machine was brand new.  So after my hunt, I got it and it finally arrived today.  We are in the mist of hooking it up because the filters have to soak overnight.  I will let you know how it is when I hook it up tomorrow.  I just can’t believe the madness I go through just to save money… even if it is for my health. 

My mouth has really been getting worse lately.  As I have osteonecrosis, the bones in my mouth are literally dying and protruding out.  It is really both fascinating, scary, and painful all at the same time.  The doctor gave me some medication that only he can get, but unfortunately it isn’t really working.  I really wanted to see some surgeons to see if they possibly can do anything because it is so very painful, but unfortunately all the surgeons that can take care of this very rare condition do not take my insurance plan.  It would be way too expensive to pay out-of-pocket to see the surgeons because I would need so many expensive surgeries, x-rays, appointments, etc.  I would also need bone grafting, which is extremely expensive as well. 

However, it is so painful to have this condition since the bones are literally being exposed in my mouth.  They are coming out more and more as time progresses.  Just in the little time that passed from my past appointment with the doctor, the doctor saw a huge difference.  There are surgeries to help with this illness, but like I said before, they are so expensive and I don’t have the funds or the insurance to have it.  I found a study where they get rid of the dead bone and allow new bone to grow back. After the CAT scan to diagnose the problem, patients first take tetracycline for two weeks. Once in the operating room, the doctor exposes the problem bone and shines an ultraviolet light on it. Tetracycline sticks to bone and lights up under the purple light.  Accordingly, the bone that doesn’t take it too much in certain areas they remove and bone that doesn’t take it up at all is removed as well because it’s dead. The healthy bone is left in place to re-grow.  If only I had the funds to have this done.

In the meantime though… I am all booked to go to OHIO now. I am supposed to be leaving for OHIO on the May 19th so that I can go to the Cleveland Clinic.  I have been there before, but I am now going back in hope that they can help me. However, I am not going to be seeing the same doctor that I saw way back then though. He has since retired and is now only seeing patients like once a week.

Even though he is seeing patients once a week and could possibly see me, I decided to pass on seeing him because in order for this doctor to see me, I would have to have his approval to take me on as a patient since he is technically ‘retired’ and only working on that limited time.  In order for him to do that and to give me an appointment, he first has to review my records and it would take to long for all this to happen since they only are able to get my records via fax or mail.  So I figured it wasn’t even worth sending it because my records are like a volume because there are literally like over 200 pages.  It would take me forever to fax them since I am unable to email them.  I don’t want to mail them either because even though I could probably send them overnight, it would still take forever to probably get an appointment because by the time the records get to them, they read it, they review it, etc.…. it all takes time.  Plus, it isn’t like I can easily get to the post office to mail them either and it will be very expensive too if I mailed them overnight.

So I figured that it would just be easier to have an appointment with someone else. I wasn’t too impressed with the doc I saw the last time anyway and either was my mom. He reminded me of the good humor man because all he did was dress in complete white and he didn’t have the best bedside manners. It was really weird because the whole entire hospital was all white and had no color.  Then this doctor also dressed in pure white too.  There was absolutely no coloration anywhere.  My mom kept calling him the ‘good humor man.’  He didn’t really take his time with me either. So I really didn’t mind in changing.

I found this neurologist there that is supposed to be doing ketamine comas and be knowledgeable in my neurological disease. So I am going to see him in hopes that he can do something. I am just really hoping that I am not wasting my time because when I called the office and spoke to the secretaries, they first didn’t know what I was talking about and if the doctor treated my illness or did ketamine comas.  It was like they never heard about my illness or this procedure.  But after they put me on hold and asked someone, they told me that he did treat and was familiar with my illness.  I did ask them a couple of times to make sure that they knew what I was talking about and were supposed to be giving me the ‘correct’ info, so I am hoping I am not going and wasting my time.

I am also hoping that by going to see him and have him do it that I will be covered more by insurance. I won’t be covered totally and it still will be quite expensive because I will have copayments and traveling expenses and other costs, but it won’t be as nearly as expensive as if I had the coma in Florida because the coma in Florida was totally out-of-pocket with no coverage whatsoever.  The appointment with the doctor wasn’t even covered.  Even though I much rather have the coma and see the doctor in Florida because I think he is a better doctor and I would probably be in better hands, I just can’t afford it.  The doctor wants just for that one particular coma about $20,000 and that isn’t including all the other expenses or the cost to see him either.

In addition, I am also hoping that since I am at the Cleveland Clinic, it is also a very well known hospital and therefore, it will be able to handle my GI problems as well. After all, if I went to Florida, I wouldn’t be able to deal with the GI problems unless the ketamine would help it (which fingers crossed that it does). So, hopefully this will be a better option over all. In hopes that the Cleveland Clinic will be a better option than Florida, we had to postpone Florida to a later date because I was supposed to be going to Florida the same time as I was scheduled to leave for Ohio. However, we are rescheduling it for June just in case it doesn’t work out at the Cleveland Clinic.  At least I will have a backup plan and something to fall back on because I desperately need a ketamine coma and someone to help me with the neurological disease ASAP.  So hopefully I will make it that long. 

In addition, we are running into a big problem because Ohio is also scheduled so close to leaving for the Mayo Clinic. Dad doesn’t know how we are going to be able to do it honestly because we literally come home on Tuesday or Wednesday and we leave that Sunday for Minnesota. Dad doesn’t know if that will work out because he has to get his work together and has to get everything situated before we leave. After all…he can’t miss that much work. When he doesn’t work, not only do we not make money as a family, but the business also doesn’t make money because there is no one to do the work.  Also, this is my dad’s busy season and this is the time that my dad waits for. If he doesn’t make the money now, he isn’t going to make it at all, and if he isn’t around to grab the work or do the work, the customers aren’t going to wait around for him.  You know? 

So I don’t know what is going to happen with MAYO. I can’t really cancel it because it took me forever to get the appointment and if I cancel it, I will probably have to wait forever to get another one. Plus… the hospital is the top in the country and deals with all the rare diseases. So I am hoping that they really will be able to help me especially since they have that study going on. But on the next breath, they wanted me off all my meds before they saw me so who knows definitely if I am going. So… if I don’t go… at least I will be going to Ohio anyway. You know? My dad doesn’t want me to cancel Ohio and postpone that because he said that would be the most stupid thing I can do since that is covered on our insurance and nothing else is. If they have something there and we are covered than that would be awesome.

So we are supposed to be leaving then the 19th for Ohio.  This will be the first time my dad will be there because I went the last time with my mom.  My mom reminded me that I really won’t be able to do anything when I go there.  Unlike the other places we go, we won’t be able to do anything in Cleveland… not even go for a walk.  That is the one hospital that there is absolutely nothing to do because they don’t let me outside. The hospital even has its own police precinct because the area is so bad. The hotel even tells us not to go walking outside because the area isn’t good at all. That is the one big downside about going to Cleveland. At least when we go to the other hospitals we do stuff… even if it is just going to for a walk.  So I will just load up my iPad and spend my time on it.

Well… I also want to share great news.  I was contacted today by a UK-based charity that provides support for people in chronic pain through a radio show and help-line.  It turns out that they want me to write for them.  They had read my blogs and they decided to ask me to write a story for them.  I was really touched and really excited at the same time.  I wasn’t going to let an opportunity like that slip away.  I wasn’t going to let it slip away the chance to have my story unheard so of course I accepted the deal. After all, the more people that hear my story the better, right? Maybe someone out there will hear it and be able to help me right? After all… I got so much taken away from me because of this disease… friends, being able to eat, being able to walk, being able to be a doctor, being able to shower, having a family, etc. so maybe this is a way of contributing to society and making a difference. My disease and struggle is so unheard of and maybe at the very least if I can’t be helped and will not per se be ‘saved’ and be able to ‘live,’ at least maybe I can make a difference in the world by bringing attention to my illness and letting it be known in the world that it does in fact exist. After all, before I came down with it, I never even knew something like this existed. You know? Maybe even though there is no help for myself per se, maybe I can help others in the future that will be going through it or even help others going through similar situations showing that they aren’t alone.

My new book finally came out.  I am so excited because I waited so long to read it.  It is called “Wedding Night” and Sophie Kinsella writes it.  I thought maybe they would release it a day earlier because I have noticed that sometimes that even though they have a release date, they sometimes release the book on iBooks a day earlier.  So I was hoping that this would be the case as well with this book.  Of course since I wanted it so badly, it wasn’t the case.  But it was now officially released so I will probably be starting it today.  I will let you know how it goes.

ImageI have been trying to eat baby food in order to try to get any nourishment.  So I have been eating these things called PUFFS.  They are organic finger foods for babies.  It is kinda like eating cereal.  I usually eat the “Apple” flavor, but I just got a new flavor called “Greens.”  I opened it up tonight and I was really surprised to find that they were literally green. I was wondering what they were going to taste like because of the flavor was known as “greens” and they have all different flavors known as apple, strawberry, bananas, etc. so I knew it had to be some kind of flavor on that terms.  But when I saw the color of them, they reminded me of spinach.  After tasting them though, I am not quite sure what they taste like. 

I have also been busy with working for my dad’s website. At least I have been helping him out as much as I can too.  Trying to keep myself as busy as possible because not only does it help pass the time, but it helps my dad out and hopefully brings in more business for him. It actually lets me “contribute” something instead of just ‘existing.’  It also gives me some normalcy.  You can always check it out at http://www.intercountypestcontrol.com 

Well… I guess I will be going.  Just wanted to write and let you know all the updates.  I still need lots of funds for treatment.  If you can please think of any way of getting the necessary donations, I would really appreciated. 

Love,

Fallon

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April 19, 2013

ImageHi-

 Figured that I would write and maybe it would not only allow you to know what is going on, but I thought maybe it would clear some things up for me as well as give me a way to ‘vent’ my thoughts and feelings out since so much has happened in the past few days and I am having an extremely difficult time dealing with everything.  In fact, things have gotten so badly that I really don’t even feel like talking to anyone.  For that to be the case (since I am a very open person who LOVES to talk and be with people), things have to be really bad.

 I really haven’t felt like talking or being with people because my life hasn’t been doing too well.  I am suffering in agony more than ever and I didn’t get the greatest news in the past few days.  Plus, I need treatment more than ever, and unfortunately there seems no way possible to get it because of the money that is needed to get it. Since I don’t have the funds to have the necessary treatment that I desperately need, it appears that my life is really in jeopardy… more than ever.  I always knew that without treatment that dying was a REAL possibility.  However, I always hoped deep down that something would happen or turnaround that would enable me to receive the necessary treatment that I needed.  I always hoped that something would happen that would enable me to raise the funds needed for the necessary treatment despite how poor the responses to my website and all my other efforts have been.  I have tried so many different ways to raise money and even though they all have basically failed, I have continued to try new methods and still held onto hope that something would turnaround and I would be able to raise enough money or at least a significant amount of money that would really be helpful to help me with my treatment and save my life.  Even though I did raise close to $10,000, it really isn’t a lot at all.  Plus, it took over a year to do this so the amount of bills that occurred at this time far outnumbered and exceeded that amount.  It was one thing if I raised that money in a short amount of time because it would really help pay for treatment, but even though it was helpful, it isn’t as helpful as one might think it could have been since it took so long to raise the money and how much I have went through during that time. 

 I need treatment more than ever at this time and without it, I am surely not going to make it much longer.  I never thought I would be at a stop in the road where I am at a standstill and I can either go either way.  Without treatment, I am surely going to die soon for sure.  With help… of course there is hope and help.  But unfortunately, there is no way that I can get the treatment by relying on my family.  My family has done as much as they could and unfortunately we can’t pay anymore.  So, as much as we would like to pay for further treatment to save my life, we just can’t do it.  It is the hardest thing for me to know that I am going to suffer and die because my parents can’t afford it.  I don’t want to die, but I don’t blame them for not being able to pay for treatment because they have certainly done enough.  You can only get so much from a person.  It is also taking a toll on them because it isn’t easy to watch their daughter go through this.  They are the ones who are supposed to die first.  They wish they could take all the pain and suffering away from me, but they can’t.  Parents are supposed to make the lives of their children better. However, in my case, they just can’t despite how much they desperately want to.  All my dad can say is “I am so sorry.”  I see the look in his eyes and I know how desperately he wants to do more and how much it hurts him that he can’t.

 I only wish things would have worked out for the better with the fundraising.  I only wish that more people would have taken notice to my pleas.  I was never a ‘beggar’ and for me to actually constantly ‘beg’ and plea for money, it was not easy for me to do.  However, I was just so desperate for the funds because I knew that without the help from others, there was just no way I was going to be able to continue the treatment that could very well save my life.   I am only 31 years old and have not yet begun to live life.  I have so many dreams and aspirations, and I really don’t want to die.  I was robbed of life at such a young age by this disease, and it was my dream to be able to have my life back and to live a normal life.  It was my dream to be able to eat again, be able to have a family, be able to walk again, become a doctor, be able to take a shower, be out of pain and suffering, etc.  But, I guess all those wonderful wishes and dreams will never come to pass.

 Things have gotten worse than ever lately.  I am really deteriorating and unfortunately we are at the point now that if nothing is done right now and urgently, we don’t know how much longer I am going to be able to make it.  I desperately need treatment, but like I said before, we don’t have the funds. We tried to look into upgrading our health insurance because it would ‘help’ pay for treatment because at least they would pay like 70% after we meet our $2000 deductible, but it just isn’t possible.  We already pay about $3000 in health insurance a month and they want another $700 just to do that.  We can barely afford the $3000 now, there is no way that we can come up with the extra $700 a month because that is like $8400 a year more (not including all the additional funds that we have to come up with like the copayments, medicines, etc.  We have copayments for everything including copayments for doctors, medicines, radiology exams, etc.  Just being an inpatient in the hospital costs me $150 a day for the first week.  Just like every radiology test such as a CT scan or MRI is a $100 copayment and so is every procedure that I have).  It just continues to add up and up and up. 

 I was never a ‘crier’ but that seems to be all that I can do right now because unfortunately all we are doing is hitting brick walls.  I need help and help now, but unfortunately there is no way I can get it.  First of all, I need help for my osteonecrosis.  It appears that I have jawbone death.  However, I can’t get the necessary help that I need because all the surgeons that deal with this illness don’t take my insurance and to have to deal with this illness, it will be quite expensive.  Any kind of surgery is really expensive, but this surgery will be really expensive considering all that they will have to do.  I will have to undergo numerous and various surgeries, scans, bone grafts, etc., which will all be a lot of money.

 If you don’t know what osteonecrosis is and jawbone death is, it is when the bones are actually dying.  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.  They aren’t quite sure what the cause is, but they are pretty sure that is related to the bisphosphonates that I have been taking once a year for my illness.  Gosh… this neurological/autoimmune disease really caused such a host of problems that it is unbelievable.  It affects anything that is on the neurological system, which is essentially everything.  It caused me to develop such a severe case of osteoporosis, severe gastroparesis, heart problems, a brain tumor, etc.  Talk about a illness that doesn’t stop ‘giving.’ 

 Anyway, every year since 2009, I have been undergoing a very potent infusion of bisphosphonates because my bones have become extremely fragile.  In fact, my doctors are always scared that I am going to get a life-threatening fracture or something else.  So, the doctors have be go for this very potent infusion that is only supposed to be done like once every 2 years, but in my case, I need it every year because I am so bad. People might wonder why I am taking these meds if they cause this problem.  First of all it is a rare problem to occur.  Second of all, given the risk of osteoporotic fracture, and the low risk of the jawbone death associated with potent antiresorptive therapy use, the benefit of preventing osteoporotic fracture clearly far exceeds the risk.  That is why the doctors are continuing me on it,

 Well, it appears that recently my bones in my mouth have been protruding through my skin.  In fact, I just went to the doctor today, and in the past couple of weeks, it has gotten extremely worse.  At first we thought it was just lesions.  However, it was concluded that it was actually bone coming through and there were lesions around it.  It was concluded that my bone was actually dying off and coming through.  However whereas it was only on one side before, it is now coming through on both sides of my face now.  You can actually see the mandibular or maxillary bone through the lesions in my mouth.

 I must say that even though it is quite disgusting, it is quite fascinating to know that I have bones coming through my skin.  However, it is quite painful to tell you the truth to have this happen.  Due to my extreme gastroparesis and inability to swallow, it is really hard to eat and drink as it is, but with this bone coming through in my mouth causing me extreme pain, it is making it even more impossible to eat or drink.  This is not good because I already weigh so little (in the 60s).  I really can’t afford to lose any weight whatsoever.   I am having the hardest time eating anything because of my mouth… even ices, which is not good especially because my heart meds are in them.

 The pain of this occurring is excruciating.  Eventually the bone will die so much that it will break off.  I really need to see surgeons that can help, but not many really deal with this illness.  However, the ones that deal with this illness don’t take my insurance. When I asked the doctors about the cost of the procedures, the cost is just astronomical.  I found this one treatment where the surgeon uses a new method to get rid of the dead bone and allow new bone to grow back. After the CAT scan to diagnose the problem, patients first take tetracycline for two weeks. Once in the operating room, the doctor exposes the problem bone and shines an ultraviolet light on it. Tetracycline sticks to bone and lights up under the purple light. The doctor claims that “Bone that doesn’t take it too much in certain areas we remove, and bone that doesn’t take it up at all, we remove because it’s dead.”  The healthy bone is left in place to re-grow.

 Yet, like I said before, all the surgeons that can possibly help me do not take my insurance.  When I speak to them, all they can say is “I am so sorry. I feel so bad.  I wish I could do more.”  I just don’t understand it. If they feel so bad and wish they could do more, why can’t they give me a ‘break’ and charge me less? So now besides suffering and being in pain 24/7 with my neurological disease/autonomic dysfunction, as well as with my severe stomach and intestinal problems, I now have to deal with the pain in my mouth as well.  The pain is so bad that I can’t even always open my left eye. 

 So I have been hitting a brick wall with getting help in receiving treatment for my osteonecrosis and as a result, I am only going to suffer more and the bones are only going to continue to worsen and die more.  But in the meantime, I have been fortunate that my dentist has been amazing and trying to help in any way that he can.  He has tried numerous ways of trying to help and has even tried to get me gels that only dentists can use just to see if it will help with the pain and help heal with it.  He has been going way beyond the call of duty and has been researching my illness and trying to do whatever he can.  He even dropped off the medication at my house today after he ordered it especially for me.  I am so thankful for him.  More people should be like him.  He is definitely the best dentist in the world.  In fact, his whole entire office staff is just wonderful.  I love going there because they are so very nice to me.  It is the one place where I feel comfortable and I actually feel like I can forget about all my ‘problems.’  They always find ways of making me laugh and putting smiles on my face.  In fact, one of the assistants even buys me cakes and napoleons to ‘fatten’ me up.  My dad loves it when I go to the dentist because he knows it is good eating that night.  They are just one-of-a-kind.

 Well, it isn’t just my mouth that is worse.  I got bad news about treatment for my overall neurological/autonomic condition.  I found out that the ketamine coma study out of the country was suspended.  I desperately needed to go out of the country to have it done because I needed an amount of ketamine that was not FDA approved.  Even though the procedure was extremely radical and dangerous, I was really hopeful that it would help since ketamine is a NMDA receptor and has a the potential to ‘cure’ my illness. 

 For me, ketamine isn’t just a street drug for me.  They just don’t call it “special K” for nothing.  It really is SPECIAL for me because it has the potential to really help me.  I experience such searing pain that I take over 50 pills daily to help with all the pain and suffering of my autonomic dysfunction, neurological disease, gastroparesis, etc.  However, ketamine has the potential to stop all this and to potentially cure me if I am given a high enough dose out of the country.  In that treatment out of the country, ketamine is infused intravenously and continuously while patients are supported by a ventilator – and are virtually dead – for days.  During this time, the ketamine resets the link between the pain sensory neurons and the brain.  The brain is like a computer because during the coma the doctors basically turn your computer off so you’re not having any pain.  When the brain is turned back on, the pain system is “rebooted.”

 Yet, due to unknown reasons, I was notified that the coma out of the country was suspended.  I am really upset because I was really hoping that it would be able to do help me.  It was kind of my only hope out there because no matter what else I tried, it all failed.  Yet, now all I have left is to go south to Florida for the ketamine coma there.

 Even though I do get ketamine comas in New York, it is not as potent and not the same as I will be given down in Florida. Whereas the one I have in New York is only for the day, the one in Florida will be for 4-5 days.  Yet, at this time it is my only hope out there and therefore, I have no other choice.  Although it won’t ‘cure’ me because it will not be as intensive as the one out of the country, it does have the potential to make a HUGE difference in my life. 

 Even though it will not completely ‘cure’ me, it will make a significant impact on my illness and will potentially ‘buy’ me a lot of time hopefully.  It really has the potential of reversing A LOT of stuff that has happened and making the pain and suffering a lot better.  I desperately need this procedure more now than ever because not only am I suffering in agony with the pain, but I also need them for the related stuff that is going on with my GI problems and the lesions in my mouth.  We are hoping that ketamine will reverse or help with the paralysis in my GI system, and we are also hoping that the ketamine will heal the lesions and potentially cover up the bone that is coming out in my mouth.  Unfortunately with my illness, I can’t heal and the lesions just continue to spread.  However, ketamine has been known to dry up and heal lesions in a high enough dose (the dose in New York is way too low for this all to occur).

 Yet, like always, we run into a huge problem because in order to get this coma to potentially save my life and buy time, we need to of course pay out-of-pocket for it and it isn’t cheap.  They want close to $15,000 for the coma and then I have the boosters and the other return treatments.  In fact, whenever I go to visit him to talk to him for an appointment, it costs me $1000.  I don’t know how we are going to afford this.

 As of now, we are scheduled to see the doctor in Florida on May 9th.  I am really hoping that we will find some way of coming up with the funds because I can’t suffer like this anymore.  The pain is getting worse, the lesions are getting worse, I am twitching more than ever, my memory is getting worse, etc. In fact, I can be literally standing up and then get a twitch that sends me flying.  I also keep having out-of-body experiences and when I come back to consciousness, it like takes me awhile to figure out what happened and where I am.  It is the weirdest and strangest thing and to be quite frank with you… it freaks me out.  I really think there has to be a reason for it.

 I can literally feel my body dying off.  It is the worst thing you can imagine.  I just feel so weak.  You can’t imagine what ‘dying’ feels like until you experience it.  It has gotten so bad lately that I lay at night in my bed wondering if I am going to see morning.  I even sometimes hope at times that I don’t see the morning because I know that I will be in a better place. I just can’t take it anymore.  It’s so sad and hurts me that everything deals with money and we don’t have it.  My life depends on this and unfortunately I am watching myself suffer and die because I can’t afford the necessary treatment that I need.

 I am also scheduled to go to the Mayo Clinic on May 27th.  Like I have stated previously, they are a top hospital in the country that deal with the rarest diseases and the cases that can’t be helped elsewhere.  I am hoping that they will be able to help me with my GI system.  But, they want my off all my meds for 2 weeks prior to seeing them and I don’t know how on earth that is going to happen.  Even my doctors have said that it is literally impossible for that to take place because it is way too dangerous. They said that I am on way too much and have been on them too long for that to happen.  They said that I will go into seizures, coma, and even death if I do that.  So I don’t know what is going to happen.

 I really need help and help urgently.  I am literally dying and don’t have much longer because my entire body is shutting down.  I don’t know how else to raise money or how else I can ask people to donate.  If you have any suggestions, I would really appreciate it.    Time is really of the essence and like I said… if something isn’t done fast, I fear that I won’t be here much longer.  I just can’t take the pain and agony anymore.  It is just too much to bear.  I already want to take a knife and cut out the bones in my mouth already that are protruding because they are so very painful.  I just wish there was a way to get treatment so that I not only get better, but at least I am out of my pain and suffering.  I just can’t take it anymore.  I am literally climbing the walls.

 ImageMissy knows I am suffering more than ever and really getting bad because she won’t leave my side.  She follows me all over the place and doesn’t leave me for a minute.  Her birthday is coming up at the end of the month.  I can’t believe she is going to be 9.  I only hope that nothing ever happens to her because she is my LIFE!!  She is literally my BEST friend.

 The change in weather also isn’t helping.  In fact it is really exacerbating my condition.  I hate when it is the “in between” weather. I can feel the slightest change of weather because I am so hypersensitive.  My parents joke around how I am like a thermometer because I can even tell you the exact temperature.  It really is amazing because I can feel the slightest change… even a degree.  I can’t stand to have the windows open because I can’t stand the feeling of the outside air.  It makes it difficult to breathe and stirs up the autonomic dysfunction.  It also hurts me to have the windows open because the breeze through the windows whip and hit my skin.  I need either the heat on in the house or the a/c, but it is the weather that is like the “in between” weather because it is too warm for heat and too cold for a/c.  I hate making my family suffer because I know they would love to have the windows open and get fresh air into the house, but I just can’t tolerate it. 

 I just set up my new humidifier.  I need it for my breathing and autonomic dysfunction, especially when there is the change of weather and when the weather is in the “in between” state.  It kind of makes it a little easier to adjust to the in between state because it is a “cool” mist humidifier.  This way I can deal with the time before the a/c goes on to a point.  Yet, when we set up the humidifier yesterday, we found out it was broken.  So I had to order a new one and it is suppose to be coming tomorrow. 

 I am trying to keep my mind occupied so that I don’t think of the pain, but it is literally impossible.  The pain is just too much to bare.  I can’t wait til Monday because my favorite author is releasing her new book called “Wedding Night.”  I love the author named Sophie Kinsella, but she only releases one book a year. 

In the meantime, I have been busy playing a new game on my phone.  I was told about a new game called PANDA JAM today and have started playing it.  Apparently everyone new about it before and I am like one of the last to know about it.  It is a pretty cool game. 

 I also have an appointment on Monday with a doctor for a new parking permit.  My dad always says to me “It always pays to have you around” because he gets away with so many things with me such as cutting lines, parking in handicapped spots, etc.  If he said it then, he is definitely going to be saying it now because I am getting a parking pass where I can literally park ANYWHERE I want.  Can you believe it?  I know it stinks to be sick, but at least this is one good perk.  The permit allows the driver to park at most curbsides on City streets including in all No Parking zones (except those marked as taxi stands); in “No Parking” or “No Standing” spaces authorized for doctors, press, diplomats and government agencies; at metered parking without paying; in “No Standing, Trucks Loading and Unloading” zones except for specified restricted hours. So at least this will definitely come in handy when we go to doctors and such because a lot of times we can’t find parking and we have to walk blocks or wait forever for a spot since basically all my New York doctors are in Manhattan and there is no parking there. 

 Well… I am going to get going.  I will write more when I know more.  Like I said before though, if you have any ideas on how to raise money, please let me know.  If you can please spread the word that I desperately need help… I would appreciate it immensely.  Any help that you can do would be great and much appreciated.  Thanks again for always being there for me and for supporting me in the meantime.

 Love,

Fallon

 

1 Comment »

April 12, 2013

ImageHi-

 What is going on?  I just wanted to write briefly to update you on what is going on because I went to the doctor today and found out some news.  I am sharing it because I didn’t want it to ‘build’ up with all the other stuff, I wanted to get it off my chest, and I can’t believe what is actually happening. 

 I got really bad news today in fact.  Talk about the gift that doesn’t stop giving, right?  Well… this disease certainly keeps that motto alive.  It just keeps giving me problems after problems… nonstop. I can’t believe how I never get a break from it.  Every time I think that it can’t get any worse or that I experienced it all… it somehow manages to get worse and I get slammed with another problem to deal with due to this wonderful disease!

 I went to the surgeon today and now I know why this doctor is not seeing any new patients and why it is literally impossible to get an appointment with him.  He is simply one amazing doctor.  He was such a thorough doctor and when he was examining me, he kept saying things to his ‘team’ about everything he saw when he was exploring my mouth for the ‘lesions.’  After all, he didn’t just come in alone to see me.  Instead, he brought in a whole entire team.  I knew from the way he was talking right away and from the way he was examining me that if he couldn’t figure out and tell me what was going on, then no one would be able to do it.  I knew I was finally in good hands.  Plus… not only was he really knowledgeable, but he excellent bedside manners and took his time with me. He answered every question that I had and even if I asked it a million times… he answered it without getting angry or anything.

 Never would I think though he would tell me the results that he did.  I really can’t believe what is going on.  I am still in disbelief of everything that is happening because I didn’t even think that what is going on is actually possible. Then again… what actually has been “believable” with this disease?  Everything that has occurred has been something unheard of and something I would never think was possible… so why am I in disbelief that this is happening as well?

 The surgeon told me that my body and such are really deteriorating from my overall conditions (disease).  This being the case, my bones in my mouth are actually dying off and protruding through.  Can you believe it?  My bones are actually dying in my mouth and coming through.  You can actually see real bone in my mouth and there are lesions around it because of the inflammation.  This of course is not good. They said that eventually the entire bone will come through and break off.  I can’t believe it.  Can you?  I never heard or would even think this was possible.

 I am in so much pain from this and unfortunately there is nothing that can be done.  I even asked the doctor if he could ‘accelerate’ the process of breaking the bone off because I am in so much pain, but he said he doesn’t want to do anything that could possibly cause more problems. He said that he wants ‘nature to take its course.’  I can’t believe that there isn’t anything I can do or take to relieve some of the pain because it is so painful.  I can’t take it.  But, he said there is absolutely NOTHING that can be done.  So… I am just left to suffer with the pain and agony of this now too on top of everything else I am suffering with.  It is even worse though because besides ALWAYS feeling it all the time, it hurts even worse every time something touches it and therefore, it makes it even more difficult to eat or drink.  Even when he was examining it, he had to try to ‘numb’ it because it was soooo painful.  Yet even with the numbing he did and my mom giving me her hand to hold on to, but it didn’t do much good.  The doctor does have me coming back though because he wants to continuously monitor it.  He also said that when the bone does break off, they will analyze it and such.  I don’t even want to think about what it will look like or what my mouth will look like without these pieces of bone. 

 So now I keep touching all the bones that are protruding in my mouth and I keep wondering. Not only do I keep touching it in amazement (I do have to admit that I am quite amazed that I have actual bone coming through and protruding all into my mouth because I would never think that it would be possible) but I also keep wondering how much longer I am going to suffer like this.  I keep wondering what is going to happen to me because like the doctor said, “eventually the bone is just going to ‘break’ off.”  I wonder what is going to happen at that time.

 I did ask him the reason why this is happening though.  The doctor really couldn’t give me a definitive answer as to “why!”  He said that it probably has something to do with my overall condition and my poor immune system.  However, he also said that he thinks it has something to do with one of the medications that I take for my illness as well.  So… here we go again… another time I am kicked in the ass because I try to HELP myself by taking a medication.  But, if I don’t take that medication, I would really be in worse shape in other aspects.  So I am really between a rock and a hard plate.

 I have severe osteoporosis and my bones are really weak due to my illness and such.  The doctors are always worried that I am going to get a life-threatening fracture or something.  In fact, my bones are so weak that they have me go for these really powerful infusions of “Reclaste” once a year.  They are so powerful that they really need to be done only every other year, but since I am in such bad shape, they do it every year for me.  Initially, I had really good results to it.  The first time I took it, it looked so promising because I got so much bone back from it.  I got like 30% back in my hip 15% in my spine and 10% in my arms and such.  However, we haven’t really gotten great results since the initial time.  I actually have been losing bone despite taking the medicine yearly.  But, the doctors say that without it, it probably would be even worse.  So, they don’t want to stop it.  The problem is that “Reclaste” is also a bisphosphonate and therefore, it is also thought to cause and contribute to this bone problem that I am having.  So my mom asked if I should stop going for the infusion because of this new problem that I am having, but the doctor said that we have to “weigh the risks with the benefits and we can’t afford for me to risk getting a life-threatening fracture.”  So like I said before, I am in a lose-lose situation.

 On top of everything else though, I am also getting blood blisters.  So now I have that to deal with as well.  Never a dull moment!  But, that is nothing compared to these bones coming through my mouth.  I just wish there was something that could be done.

 Wanna hear something though? From being so ill, I have so many records because I have so much that has happened with me between all the procedures, treatments, medications, medical history, etc.  So When I go to a doctor, I literally kill an entire tree because there is just so much papers that have to be printed because of my records.  In fact, when you put them all together in a folder,it actually weighs some weight.  When I give all my records to the doctors, doctors are really astonished by all that I give them.  Not only are they astonished by how much it is ‘organized’ but that there is just so much of it.  Usually the doctors can’t even look at it all during my appointment because there is so much of it and that is one of the major reasons I give them their own copy.  When the doctor asked me if this was his own personal copy, I was like “it is your reading material for the next couple of nights.”  He was like “You aren’t kidding.”

 So… I just wanted to let you know the update as to what is happening to my mouth.  I guess I am just meant to ‘suffer’.  I really can’t take it anymore to be honest with you.  There has to be an answer to all this.  Someone out there has to get me out of all this pain and suffering.  How much can a person take?  I never get a break from it. My dad feels so bad that he can’t help me and when we heard this latest news, all my dad could say was “I am so sorry.”  He wants to make everything better for me so badly, but unfortunately there is nothing that he can do to protect me from all this or make me better.

 We are also having problems with the Mayo Clinic.  I am scheduled to go to the Mayo on May 27th.  I am really looking forward to going because I am hoping that they possibly can do something since they are the top hospital in the country and see only the rarest cases and the cases that can’t be helped other places.  They are also doing a study there that looks like it could benefit me.  However, like always, I am running into obstacles there too because nothing ever goes smoothly for me. 

 When I go to the Mayo, the doctors want me off of all my medications, especially all my narcotics because they don’t want anything to be ‘masked’ or hidden.  They want me off for at least 2 weeks prior.  However, I am on so many medications, as I take over 50 pills a day, and I am too sick to be able to come off of them.  I have also been on them for too long to actually just “come off of them.”  I would really have to be tapered off quite slowly and it would literally be impossible.  When we discussed this with my doctors, my doctors said it is quite impossible to come off of them because I will go into seizures, coma, and even death since I have been on them for way too long and too high of a dose.  So I don’t know what is going to happen now because Mayo is saying that they want one thing that is quite literally impossible to achieve.  They are asking the “impossible” from me. 

 I don’t know what to do because I want more than ever to go to the Mayo.  I really have high hopes for them because there really aren’t a lot of options I have elsewhere.  Even though I know that they have the study going on there, they are also Gastro docs, so they are also very knowledgeable as well and therefore, they might have another way of treating me that we don’t know of.  But unfortunately we won’t know until we see them. 

 I really hope that there is something else that can be done because there really isn’t much else that can be done.  In fact, there really aren’t many except for the big transplant (small intestine, large intestine, stomach, pancreas, liver) and for the ketamine coma out of the country.  But these are 2 radical and dangerous treatments that are extremely expensive.  Even though we don’t know per se if I am going to get into the ‘research study’ at the mayo, we are still hoping that they might have something else up their sleeve since they are known to deal with the hardest cases that exist… cases that can’t be helped elsewhere.  Mayo has performed many miracles and I am hoping to be one of them.   So I am just hoping that with talking to them, they will still be willing to see me even though I can’t get off my meds. 

 I am really not doing well. My body is just literally shutting down and it is really showing it because my hair is falling out, bones are protruding in my mouth, my nails are so fragile that they are breaking off, etc.  I honestly don’t know how much more I can take.  I am trying to hang on, but I must say… it is getting harder than ever.  I desperately need help, but unfortunately all the help that is even out there depends on the green paper, which is something that we don’t have.  I really wish we could find a way to fundraise because I need treatment more than ever.  I am really suffering.  Even if this treatment can’t ‘cure’ me… at least I can get treatment that will get me out of my suffering.  You can’t imagine what it is like to suffer in pain and agony 24/7.  I am at the point where I am literally running up the walls because I can’t take it.  All I can do is cry and say, “knock me out.”  Even when I went for the last ketamine coma, I was in so much pain that I was crying as I was going under saying “please knock me out already!”  I just can’t take it anymore and I desperately need help. I desperately need others to help me get the necessary lifesaving treatment I need not only to help get better, but at least to help me get out of my suffering.  There is only so much a person can suffer.

 If you have any suggestions on how to raise money or can help in any way, please let me know.  In the meantime, I guess all we can do is pray.

 I have been trying to keep myself busy as much as possible in the meantime so that I try to keep my mind off of all the pain and suffering.  Even though it is literally impossible to do that, I am still trying. I have been trying to help out my dad as much as possible with his business so that he can get new customers and perhaps bring in more money and therefore, I made him a new website and Facebook page.  If you want to check it out you can at www.intercountypestcontrol.com and https://www.facebook.com/pages/Inter-County-Exterminators-Inc/260726404063647?fref=ts.  It is still in the progress, but you can see how it is so far.  If you are looking for a good exterminator for your pest control or termite needs, I must say that my dad’s company is certainly the absolute best.  Give him a call!!

 My favorite author of all times will soon be releasing her next book.  She only releases one per year, so I am really excited that she will be releasing it shortly. I love the books written by Sophie Kinsella, and she will be releasing her next book called “Wedding Night” on April 23rd.  What I don’t understand though is that even though it isn’t being released til that date, you can still read it from cover to cover on the computer at Amazon.  When you shop at that site, you can get a glimpse of inside the book and they actually put the entire book on the site.  I can’t understand why they would do something like that because people can just read it online and on the computer rather than buying it and downloading it.  Does it make sense to you?  So I was thinking of starting to read it already because I am so on “edge” to read it already, but I don’t know if I can read off of a computer and be forced to read only off it if I want to read from that book.  I much rather read off my iPad instead of being forced to sit at my computer.  You know?

 ImageRecently I did stop by a store that my old dancing teacher owns.  I used to take up dancing when I was younger and since then, my dancing teacher has opened up her own bake shop.  So since the weather was nice this past weekend, my mom took me out to the shop to not only say “hello” but to also see what yummy goodies we could get to eat. She had all these different breads and cookies, and she even had dog biscuits for Max. Unfortunately I couldn’t eat a lot of it because of my GI system, but they looked so delicious.  I can’t wait for the day when I am able to eat and enjoy all these wonderful foods.  But, I was really glad to see my old dancing school teacher because I haven’t seen her in such a long time.  Who says you can’t have a ‘blast from the past!’  While I was there, she also gave me a bear to take along with me for treatments. After all, I just love my bears. 

 One of my biggest thrills of getting better would be to be able to walk around on the outside with a cup of something drink.  I can’t eat or drink without really getting sick and vomiting and therefore, I can’t be like everyone else and walk around with a drink at hand.  One of the biggest things I want is to be ‘normal’ and in that sense, I want to be like everyone else and be able to walk around anywhere sipping a ice-coffee or a frap or an ice-tea.  I would do anything for that.  I know… it sounds stupid to have that as one of the things to look forward too, but I really can’t wait for the day to be able to walk around the outside with a drink in hand. 

 Well… I guess I will be going now.  I really just wanted to let you know the latest.  Guess I just gotta be like the ENERGIZER BUNNY and keep on going in the meantime. 

 Love,

Fallon

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April 6, 2013

Image Hi-

Just wanted to give you a brief update as to what is going on because new news is known and I don’t want it to build up where it is just too much to write and too much to read.  So I figured I would write and let you know the latest. 

I wish I had better news, but unfortunately I am still deteriorating.  In fact, things have gotten even worse.  But, I guess that is going to be the story until I am able to get treatment.  Today I got the scare of my life because I woke up and there was blood all in my bed.  It turned out that I vomited up blood during the night.

I am really scared because even though I have been suffering with symptoms for awhile and to a normal person they would be ‘scary’ and stuff, I was kind of used to them because even though I was suffering, it was basically the same stuff over and over again so I kinda knew what to expect.  However, lately I am experiencing all new stuff and it is even scarier because I am not used to all this “new” stuff.  At least in the past even though I was in pain and didn’t like the symptoms I had, I knew kinda what to expect and I kinda knew that it was going to end up to be soughta ok because I had them before.  However, it is at the point where everything now is unknown because as I am rapidly deteriorating, I am getting all these brand new things.  That is perhaps the scariest thing because I never know how things are going to turn out or what they mean. 

I keep thinking what each of the thing I experience mean and wonder how much time I have left because the doctors keep telling me that this is just another way that my body is ‘shutting down’ and ‘dying’ and how I desperately and how I desperately need help ASAP.  I am so scared that my time is really dwindling and unfortunately, treatment is so very expensive… money that we certainly don’t have.  I am still hoping that the media will somehow run the story or I will somehow be able to get a huge donation, but nothing is happening. I am trying all I can to bring in as many donations as possible, so no one can say that I haven’t given it my “all.”  It just stinks that everything revolves around the green dollar and how powerful that piece of paper is.  It is like it controls my destiny.  I am just hoping that I somehow get enough donations because I desperately need treatment soon or I am certainly not going to make it.  I really don’t know how much more I can take.

Like I said before, I am now vomiting up blood.  I am really afraid because vomiting up blood is not something that is considered ‘normal.’  I already knew that I was bleeding somewhere, but we were unable to find out exactly where it was because we knew it was in the intestinal tract somewhere because it was in the mucous, but we couldn’t do a colonoscopy due to all the paralysis that is occurring.  I can’t be prepped appropriately despite all the different ways that can be done, and therefore it is literally impossible to do a colonscopy to see what exactly is happening. I even have had a NG tube placed in me so that they could pour the mixture into me so I don’t have to swallow it, but even that was a failure.  All they could get in me was less the a ¼ of a liter and then the tube ended up backing up and as a result, they had to remove it immediately.

Every way that they could diagnose bleeding is basically not available to me.  However, there are very few hospitals that do have the capabilities to do an angiography that could diagnose the bleeding since I cannot have the colonoscopy.  During a angiography, dye is injected into the person’s vein to make blood vessels visible in x-ray or computerized tomography (CT) scans. Dye leaks out of the blood vessels at the bleeding site. In some cases, the doctor can use angiography to inject medicine or other material into blood vessels to try to stop the bleeding. However, not only do few hospitals have this, but they have to also be familiar with my illness and be able to deal with it as well because this procedure can really wreak havoc on me and cause many problems that they need to be prepared for.  After all, I suffer from autonomic dysfunction and I am extremely hypersensitive.  Even a simple little needle stick can cause my whole entire body and disease to go haywire.  

I know you are probably wondering why I just don’t go to the hospital now.  The reason is that there really isn’t any hospital to go to.  I can’t go to just “any” hospital because they don’t know how to handle me.  The vomiting is due to my illness and underlying conditions and unless they know how to handle and treat them, they probably won’t be able to get to the root of why I am vomiting blood.  This vomiting blood is just a symptom of everything else that is going on.  So…I really need treatment for my entire disease in order to be basically helped with the blood.  You know? When a regular person vomits blood, they can go to the hospital and be helped because more than likely their underlying condition is not rare and can be treatable.  But, as you already know, not many people are aware of my illness and I am so very complex that I need top-notch specialists and specialized costly treatments that I cannot afford.  That is just one more reason why I need to raise funds.  I need to be able to travel out-of-state so that I can get to an appropriate hospital like HOPKINS, or Cali that can help me.

Not only am I vomiting up blood, but my stomach is also very distended.  I am very uncomfortable and I constantly wonder about it because I know from previous experiences with my grandma that as the body shuts down and goes closer to death, the stomach and abdomen expands.  So, since the doctors say how desperately I need help and how rapidly I am deteriorating, I only fear the worse.  I fear that I am nearing death as well because I am having this distension.  But besides that fact, it is also so very uncomfortable because it is like walking around like you are pregnant.  It literally looks like I am pregnant.  I joke around that I am ‘full term.’ I am so full of air that someone really needs to pop me. 

Being this bloated isn’t even a good thing because it is exerting so much pressure on my organs, which is also causing additional problems.  My organs in my body are already failing and this extra pressure is causing extra problems on top of everything else. 

So, I do have some good news in a way, but it is going to take some more fundraising in order to actually make it really happen.  I am being sent to the MAYO CLINIC in May.  I was accepted there and for all those who don’t know about the MAYO CLINIC, it is one of the best hospitals in the United States.  To be accepted at the MAYO, you have to be extremely sick and suffer from a very rare disease that they feel can’t be helped anywhere else.  So many people try to get into this hospital and can’t.  The waiting list for this hospital is so long too.  However, they are seeing me right away, as I am scheduled to leave Memorial Day.  Even though it is about 1 ½ months away, it honestly is quite amazing that I got an appointment so soon. I just have to last that long.

So… I just got to make it to May and I will be off to Rochester, Minnesota.  I am really excited because I am really hopeful that perhaps they can help me.  They are doing a clinical study there that I really feel will be able to benefit me if it does indeed work.  In fact, I really believe that it could be the answer we all have been looking for.  I do realize that it is only a study and it has a long way to go, but to know that they have this and that it has the potential to work, it does give me a lot of hope.  I realize that the trip to MAYO is also going to be very expensive but so many great things have come out of the MAYO clinic when all hope has been lost and I am really hoping the same goes for me. 

Mayo Clinic in Rochester, Minn., ranks No. 1 for digestive disorders in the U.S. News & World Report Best Hospitals rankings.  The study focuses on the interstitial cells of Cajal (ICC), which are needed for normal stomach emptying.  According to the leading doctor of the study, “”The ICC act as intestinal pacemakers for smooth muscle function,” he says. ”They also amplify neuronal signals, act as mechanosensors and set the smooth muscle membrane potential gradient. Both human and animal models demonstrate loss of these cells in gastroparesis.”  Accordingly, he also states, “”When the mechanisms that normally counteract oxidative stress are impaired, especially upregulation of heme oxygenase-1, ICC are lost and gastric emptying is delayed. In mouse models, restoring HO-1 prevents and even reverses these cellular changes and restores normal gastric function.”  Heme oxygenase-1 (HO-1) is an important protector against oxidative injury and oxidative stress results when this protector is low.

In the stomach wall, HO-1 expression occurs in a particular subset of macrophages — CD206-positive M2 macrophages — whose cytoprotective effect on ICC appears related to the production of small amounts of carbon monoxide.  According to doctors, “When the upregulation of HO-1 is lost, M2 macrophages are replaced by proinflammatory M1 macrophages. These cells, which do not produce carbon monoxide, are associated with ICC damage and gastroparesis.”  In short, the critical factor in gastroparesis development is the upregulation of HO-1 in M2 macrophages. 

In mouse studies, 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. Now, Dr. Farrugia is recruiting patients for the first randomized controlled clinical trial to determine whether intravenous hemin therapy is equally beneficial for people with gastroparesis.  So I am really hoping possibly that I can be part of it. 

So, I am hoping that with donations and such, I will be able to make this trip and they will be able to help me.  I received my “welcoming” packet from the MAYO CLINIC today and I was so astonished by it.  This hospital is really something.  They really take such great care of you. 

For one thing, they situate all your appointments for you and the appointments are extremely thorough.  They also give you detailed instructions to follow prior to coming to your appointment so that you don’t skew any of their medical information that they will attain seeing you.  They don’t want anything that can possibly bias or conceal what is going on with you.  As a result, they have me stopping some of my meds, and even have me fasting the day before.  It isn’t that hard for me to ‘fast’ the day before because I can barely eat anything anyway because I can’t swallow due to my illness, but they also said that I can’t have any liquids from the evening on that has calories.  That is the difficult part because since I don’t really eat, I need all the calories I can get through liquids.  I also don’t know how I am going to manage to stop my meds that they ask. I guess I will have to speak to them about that.

 I was given a whole packet in the mail that would help me with my stay from everything from hotel accommodations to my appointments to things to do in the area, etc.  It was like I was given a whole traveling book on the MAYO clinic.  I certainly wasn’t expecting something like this.  But I guess if this hospital has a ‘concierge’ service, I shouldn’t be surprised.  It is like the whole city is built around this hospital and there are all these tunnels and sought connected to it.  Everything is around this hospital and it is made in a way so that even the sickest patients can enjoy things.  I guess they know that people there don’t really get to enjoy things because this hospital is made for the ‘sickest’ and ‘rarest’ cases and therefore, they want to make things accessible to them since they are there for long periods of time.  

Well… I just thought I would also tell you that I have a coma on Monday too.  I can’t wait for it because I am suffering so much.  At least when I go for it, I will have one day of rest.  I have been in so much pain lately that at least the coma will give me a little break from it even though once I come out I am back to reality.  I also hope that nothing seriously happens because of all the new stuff that is occurring with me like the bleeding and such.

 I am also scheduled on Thursday to see the surgeon/pathologist for the lesions in my mouth and throat.  Even though we know they are not contagious and we are pretty sure it has something to do with my poor immune system because my immune system is failing, the doctors really have no clue what they are.  Instead of them healing or remaining the same, they are continuing to worsen.  I have an appointment with this surgeon/pathologist at the hospital who is supposed to be the BEST and if there is someone who can figure it out… it is him.  I am so lucky that my doctor was able to get me an appointment with him because he was not accepting or willing to take on new patients.  In fact, when I spoke to them today to go over something with the secretary, the secretary even said to me “I don’t even know how you got an appointment because the doctor wasn’t giving out appointments to new patients.”  So I am hoping that this doc will really be able to figure out how to help me because these lesions are really painful and annoying.  At least let something be able to be helped. 

I really need help because I am having such a hard time swallowing.  I don’t know if it is because of the lesions or because of the paralysis and autonomic dysfunction or both, but I can’t swallow literally anything.  Even the very few things I was able to swallow before like egg whites and such are getting to be impossible.  Even taking my ice-pops are getting impossible to take and it is essential that I have them because it has my heart meds in them to raise my bloods.  I am at the point where taking any medicine is literally impossible.  I used to be able to get it down with carbonation, but even that now is getting to be a big problem.  I don’t know what I am going to do because I desperately need to take these meds, but I just can’t get them down.  It isn’t like I take a little amount of meds either.  I take over 50 pills daily and no matter the size, I can’t get them down. If you can think of any way of getting them down, I would really appreciate it.

 ImageI know I am getting worse too because Missy hasn’t left my side.  Whenever I am doing worse than usual, Missy never leaves me.  That is one way that my parents can always tell that I am doing worse.  In fact, she has been sticking so close to me that she has literally become annoying.  She won’t leave me alone for even a second.  She follows me everywhere and all she does is want me to hold her.  She even meows at me in the morning, but my parents think it is that she is trying to make sure that I am OK and it is her way to make sure that I am alive because she ‘wakes’ me up with it. 

 

 

 ImageBut wanna hear something great?  I taught Missy how to talk.  Yup… you heard right!! I taught her how to say HI.  It really is something.  When she comes in, I can have a conversation with her because I can get her to say HI all the time with her meowing.  It really is cool.  I have the most awesome pets.  I taught my dog Max how to slap Five and I taught Missy how to say HI.  Not to be outdone, I have a magnificent turtle too that isn’t like your typical turtle.  Instead, when he sees people come into my room, he starts to bang on the cage because he loves to come out and walk around.  Then when he gets annoyed he will literally trash his cage and start throwing everything around in it and end up spitting everywhere.  My animals are really something.  But they all get along.  It is so funny because I have a turtle that actually chases the cat and dog…who would think?

 ImageThis past week I had a special treat. Even though I lived in my area all my life, I never had a treat called a HEWLEE before.  So many people have had one, and I never did and always wondered what it tasted like. As a result, a friend of mine treated me to one.  Even though I had a very hard time getting it down and was only able to get down about 2-3 spoonfuls (that of course came back up afterwards because nothing stays down), at least I can say that I had it. My HEWLEE was simply amazing.  It was cookies and crème ice cream with brownie muffin and peanut butter chips and caramel in it.  Of course since I couldn’t eat it, I didn’t let it go to waste.  I gave it to my dad and he was in heaven. 

My best friend also visited me this week.  I am so fortunate for her because without her, I don’t know if I would still be able to keep going.  She really gives me so much encouragement and support.  She is truly wonderful.  She constantly calls me throughout the day to make sure that I am ok and I always start and finish my day with her.  Not only does she make sure that I speak to her at night and she wants to know how I am doing and how my day went, but I can be assured a call every morning at the 7 o’clock hour to say “good morning” and to make sure that I made it through the night.  She truly is wonderful.  To think… she is like “superwoman” because she goes way beyond what a friend has to do.  She has a husband, a child, and a career, and yet she always takes time out to help me.  She even constantly does research and contacts doctors to try to help me.  There have been times that she has even taken me to doctors and it is nothing for her to say to me “get ready I am coming to get you” so that she can take me to a doctor if she knows I am sick.  She has also been trying to do anything that she can to help me raise money.  She is simply amazing.  In fact,  her son was the reason why I started to try to eat the baby food PUFFS and it was much gentler on my stomach.  As Len Wein once said, “A true friend is someone who is there for you when she’d rather be anywhere else.”

 But what one thing that is truly amazing is the emotional support that she gives me.  Since I have this illness, I must say that life isn’t always pleasant.  In fact, I am not going to lie… my life is pretty stinky and miserable.  The only thing the 3-letter word FUN and my name have in common are the first and last letters.  However, when she comes over, my whole life changes.  I feel like Cinderella because my whole life transforms when she is able to go to the ball.  However, just like Cinderella’s life transforms back to her unfortunate life when the clock strikes 12, that is basically what happens to me when the clock strikes 2 because she ends up having to leave and I am left to take meds, injections, eat, vomit, etc.  It is a constant nonstop cycle that doesn’t end until I go to bed.  It is definitely not the life I like to live.  But when I am with my friend, life can’t be better; it is like I am living a dream.  Plus, she has a son who is simply the cutest.  I am so fortunate to have them. 

Bernard Meltzer once said, “A true friend is someone who thinks that you are a good egg even though he knows you are slightly cracked.”  My friend never judges me, and I am so fortunate to have this friend because I don’t have to put a ‘front’ up.  Usually when I see people, I try to look as good as possible and put up a façade so that they don’t know how sick I really am.  That is why people don’t really understand how sick I really am when they see me because I try to conceal it as much as possible.  I always believed that if you “looked good, you feel good.”  But underneath that false exterior is a person that is suffering immensely.  However, with my friend, I don’t have to put up an act with her or cover anything up.  She is with me until the very end.  We do everything together whereas some people would be afraid of me if they knew.  As Jim Morrison once said, “Friends can help each other.  A true friend is someone who lets you have total freedom to be yourself—and especially to feel.  Or, not feel.  Whatever you happen to be feeling at the moment is fine with them.  That is what real love amounts to—letting a person be what she really is.”

Well…I guess I will be going.  I just wanted to let you know the latest.  When I find out more info, I will definitely let you know what happens. In the meantime, I just gotta hang in there and hope and pray for the best.  I hope and pray that more donations come in because I desperately need them in order to receive the lifesaving treatment that I need.  If you have any ideas to fundraise or can do anything, I would really appreciate it.

Talk to you soon!

– Fallon

 

 

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