FALLON MIRSKY

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December 19, 2013

1495172_10101001126581290_655105556_oHi-

I can’t believe that all that has happened today.  So much has happened that I have to write and let you know because it is kind of a miracle that this all has happened, but at the same time I also need so much help because unless I get some help… this is all going to be worthless and for nothing.

I am so excited because I got the best news.  I normally never say that because usually that never happens with me.  However, it just happens that today I got news that two new doctors want to see me.  It just so happens that if all works out well, 2014 can possibly be my year.  The year will start out showing what the “human spirit” can endure.  Just when I thought that miracles can’t happen, I was shown otherwise.  I have finally found one miracle and feel very blessed, but it obviously won’t be able to happen without the help of others.

I have a new doctor that wants to see me in UCLA and a doctor in Mexico that both want to see me ASAP.  In fact, I have the doctor from UCLA scheduled for January 5th and I am hoping to be able to go and see the Dr. from Mexico in the middle of January.  The doctors would have loved to see me even sooner than that, but with the holidays and everything, it is really impossible to do so.  In addition, it is all contingent on the ability that I have the funds available, which as of right now I don’t have the ability to pay for either trip.  So if you can please help me find a way of getting the money whether it is by fundraising, spreading word of my website, donating, etc.… I would really appreciate it.  Let me tell you all about these miracle upcoming doctor appointments that will hopefully give me my life back and get me well.

First off… I have an appointment at UCLA with a new GI doctor.  This doctor is supposed to be simply amazing.  He was originally at Cedars Hospital, but he recently moved to UCLA.  One good thing about going to UCLA to see this doctor is that not only is he supposed to be one of the best doctors out there and supposed to be knowledgeable about my severe Gastroparesis and Pseudointestinal obstruction, but UCLA is a top-ranked hospital in the country which is one of the very few hospitals that do the intestinal transplants, which I need.  So it is very good that everything will be at that hospital instead of having to be sent to another place for the actual transplant to occur.

I never went to Los Angeles, California and I always dreamed of going.  So in a way this is kind of like a dream come true because I always wanted to go there.  When I spoke to the doctor’s office though, they said to make sure that I stayed very close to the hospital, which is in Beverly Hills or Westward because they said that Los Angeles is very difficult to travel because of the heavy traffic.  They said that the traffic is so bad and there are really only 2 highways to get around and therefore, if I would have accommodations further away or something, it would literally take forever to get to the hospital.  So I can just imagine how much things are going to cost considering it is going to be in Beverly Hills and Westward.

But I must say that I am really excited about going to Los Angeles.  I am really excited to see this doctor because I had him look over my records and I am really hoping he can help me because I asked him if I was “wasting my time by coming out to him” and he said certainly not.  So… with him knowing everything about me beforehand and such and by saying this… I am really hoping that he will be able to help.  I am hoping so much that he will be able to help because I am really suffering lately.  Not only am I suffering in intense pain 24/7 but also my GI system has literally stopped working completely and I cannot go to the bathroom basically at all.  Everytime I try to go to the bathroom, I end up vomiting instead because instead of the pressure pushing the contents out through the bottom half, it is like it backfires and I end up vomiting everything back up.  It is like I am so “stuffed” that all it can do is come back up when I try to push it out!  So my fingers are really crossed that he will be able to help me, especially when he is in charge of the digestive disease program and specialize in my condition.

mexico_country_mapSecondly, I am really excited because I spoke to the doctor from Mexico tonight.  It appears that he wants me to come down as soon as possible to have the ketamine coma.  It is a very rare and radical procedure that is extremely dangerous and is definitely not allowed in the United States because it isn’t FDA approved. The FDA has yet to approve this very type of coma that I am going to undergo because I will be given ketamine and midazolam up to 50 times the normal dose. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.  As a result, I will literally be put all on machines for some time, as my body will officially be “dead.”  All I will be kept alive is on machines.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!   The long-term effects of the coma suggest that the coma may provide long-term and perhaps permanent relief very severe cases as mine.  However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition. But I am willing to take the chance to have this very rare and risky procedure because I can’t live like this anymore.

Yes, these are radical and scary treatments, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself. Since all reasonable treatments have failed to help me, I am hoping that you might have something to help regain my life.  I can’t live like this anymore though.  The pain and disease has gotten way too severe.  I really need a miracle.  Not only do I want to regain my life back and to live, but my goal is to one day become a doctor, and I will be a great doctor because when a patient presents in my office says, “Doctor, I am in pain and words cannot express how bad it is” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”

My current doctors have stated, “I am a time bomb waiting to go off.”  I am extremely hypersensitive and the slightest tough sends me through the wall.  The pain has been so intense lately that I can’t do anything but scream and cry all throughout the day.  I am in pain from head to toe… from the very tips of my fingertips to the very tips of my toes.  I am in pain from the very top surface of my skin down to the inner core of all my bones in my body.  The pain is so excruciating and intense.  I don’t even know how to describe it anymore.  The pain is horrific. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me.  The “best” I can hope for is a dull ache that can last during periods of an attack of extreme suffering. This disease isn’t a joke. It hurts so much.

I even have severe allodynia.  Sometimes just the air from a breeze is too much to handle. I’ve cried myself to sleep countless times, from the painful day I had, and because my body, especially my limbs, had to touch a blanket.  The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.

photo 3 (3)Another strange symptom that has to be factored into my daily life is that vibrations and noise bother me, as it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain. Due to the noise and vibrations causing me extra pain, for instance, there are a lot of things I cannot do, places I cannot go, and again. These are places most people take for granted and may wonder why we are not there. If there are a lot of people making noise, even if it is simply singing or clapping, a baby crying, it can cause my pain to spike. Visits sometimes have to be cut short due to all the regular noise that is typically generated, or I just have to go off to another room; and don’t even start on things like thunderstorms, whew!

Even the sunlight bothers me and I have to wear dark glasses due to the pain of the bright sunlight.  Even though I am in pain 24 hours a day, the pain always escalates in the evenings that I rarely go out.  In fact, by the time lunchtime rolls around, the pain and meds get to be too much to bear that I rarely go out and its like being Cinderella because my whole life changes if I am not back home by a certain hour.

This disease really has really taken a great toll on me. I get headaches from the devil, I have track marks from my doctors, and my entire GI system has shut down. I transpose letters and words in my head, sometimes skipping over letters or entire words. I can be talking to someone, and mid-thought, completely forget what I was talking about. I repeat myself for no reason. I repeat myself for no reason. When writing, I oftentimes mix up tenses or combine words to make new words that you won’t find in a dictionary. Things happened during surgeries that should have killed me, and in the end, they probably will.

In addition, I also have another illness I suffer from, as I suffer from Acute Intestinal Pseudo-Obstruction (ACIP), which is a form of severe Gastroparesis.  It is a rare disorder characterized by persistent signs and symptoms of intestinal blockage in the absence of any physical blockage. The small and large intestine loses the ability to contract and push food, stool, and air through the gastrointestinal tract. There is a delayed emptying of food and liquid into the small bowel, and often food will sit in the stomach for many hours or several days.  This results in nausea, vomiting, early satiety, heartburn, weight loss, vitamin deficiencies, fatigue, malnutrition, abdominal pain, bloating, and dehydration.  It is also no unusual for other portions of the GI tract to be affected such as having dysmotility in the esophagus and having problems emptying the bladder.  In fact, when I get “air” in me, I actually have to use my hands and manipulate it out of me by working it out of me by pushing on different parts of my abdomen until I get it out.

Even my organs are suffering not just because they are being affected by the disease since they also work on via the nervous system and everything on the nervous system in my body is affected, but my organs are being compressed from this disease because the air buildup is exerting pressure on all of my internal organs such as my heart, but they are shutting down.  The doctors are so very worried about how my dilated GI tract (stomach and colon) is compressing my organs.  They are worried about the organs shutting down further and worried about me going into septic shock.  However, there really isn’t much to do without the transplant.  I can go for “decompression,” but it is only very temporary.  The doctors are also very worried that I am going to perforate my cecum or other parts of my intestine because I can die once that happens.

I’ve tried so many things to help with pain, to try to kill the disease, and to try to get my life back.  I have been to top specialists in the country because not many doctors are familiar with how to treat me.  In fact, not many doctors have even heard of my disease.  I have traveled throughout the United States in search of help including to the Cleveland Clinic, Vanderbilt Medical Center, Hopkins University Medical Center, Boston Medical, Temple University Medical Center, etc.  I am on a countless amount of medications and even though I am maxing out on all the meds that I have, they don’t help.  I take so many meds that it could probably kill a horse if they took it.  I have tried many (if not all) opioids, anti-depressants, etc. but nothing has worked. I even have tried injections as well. I am currently on Nucynta, Methadone, Ketamine, Oxycodone, Senokot, Colasce, Ducolax, Avinza, Topamax, Singular, Domperidone, Bethanechol, Colchicine, Vancocin HCl, Misoprostol, Ketamine, and Relistor and more.  In total, I take over 50 pills daily just to be able to function.  Yet, I would love to be able to come off these medications as well, as these medications come with their own host of problems and issues.

I have undergone so many treatments that have not proven to be very effective.  These have included surgeries such as implanting a spinal column stimulator (which had to be removed), sympathectomy, epidurals, sympathetic nerve blocks, Botox, etc.  I also tried aquatherapy, blocks, physical therapy, occupational therapy, aquatherapy, biofeedback, massage therapy, TENS unit, acupuncture, ketamine infusions, and hyperbaric therapy.  Hyperbaric therapy has helped to a point (when you are in my condition and state, you will take any relief you can get), but it is extremely expensive and not covered at all on the insurance plan.  Ketamine infusions also have helped, but the dose I need is a much higher dose and it is not FDA approved in the United States.  The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.  As I am getting worse, the doctors are claiming that I need a “miracle” or a radical treatment in order to survive because I am “running out of time.”

So I am so fortunate to be able to be given this opportunity to go to Mexico for this coma treatment.  This coma treatment is only for the worst of the worst patients, and it has only been done a limited amount of times.  I will be under the care of a great physician, who I am really excited to work with.  Not only is he very knowledgeable about my condition, but also he is extremely nice and has excellent bedside manners. He even gave us his cell number (even though it is in Mexico) so that we can contact him anytime.

This doctor in Mexico happens to be the best of the best.  So I am so glad that he is willing to see me.  He said that this coma would hopefully give me back my life back, if all goes well.  Of course it is very risky and dangerous, but of course I am willing to take that chance.  I spoke with the doctor tonight and he spent an enormous amount of time on the phone with me.  He answered every single question of mine and didn’t turn away any question… no matter if it was repetitive or stupid.

The doctor is trying to get another study approved at the hospital in Monterrey, but since he does not know when that will be approved, he is willing to take me to another hospital in Monterrey called HOSPITAL CIMA SANTA ENGRACIA.  He said that I would have nothing to worry about with my dad and I not being fluent in Spanish because he would assure us that he would understand and know everything that was going on… even when I was in the coma. The doctor spoke very good English, so he assured us that he would be there for us in any way possible that we might need because he understood that we didn’t speak Spanish. This was very comforting because it was one of our fears since we would be in a different country and I would basically be having this life-threatening procedure. My dad was afraid he wouldn’t know what was taking place or going on, but the doctor assured him otherwise.

The doctor stated how impressed he was of my condition, as he reviewed my records and such that I sent to him.  He said that he has been fortunate to see the “worst” cases since he does this ketamine procedure and therefore he knows exactly what this disease is unlike the doctors in the United States.  Whereas the doctors in the United States aren’t quite sure what to do 100% with me because they aren’t sure what the disease really is or what is due to what, this doctor actually understands it all.  He said that everything could be cleared potentially by this coma.  Wouldn’t that be a miracle if that were to happen?

When I told him of all that I have been through and all that they want to do such as the multivisceral transplant and such, he basically gulped because he knew how intense the transplant especially was.  He said that if it was all related to the neurological condition and autonomic dysfunction than the ketamine coma should help it.  He even stated that he had a patient that couldn’t eat for 5 years and was basically just like me who was a very severe case and after having the ketamine coma, not only is she better but she is eating everything.  She is actually attending school now and becoming a Physician Assistant.  A real miracle happened to her with undergoing this coma. I am only hoping that I will be as lucky.

The doctor wants to get me down to Mexico as soon as possible.  He is going to get everything organized and see the exact dates that he can do everything.  But ideally he wants to get me to Mexico in the middle to latter part of January.  Hopefully I will be able to last that long. However, it does take some time to get organized and plus we have to get passports and everything.  The doctor said we would initially come down for an evaluation and for the doctors to make sure that I am a good candidate for the coma, and if all goes well (which it should), he will do the coma then.  He won’t make me return home so that I will have to travel back and forth, but he will do it while I am there already.

1502389_10101002300314120_2016583447_oThis is the best holiday present I can be given as well as a birthday present too.  Not only can it give me back my life and let me live, but it will be done during a time that will hopefully allow me to awaken just in time for my 32nd birthday… a birthday I might not see if I don’t have the coma.  To think that I can be made better by this coma and not have to have the transplant or anything else.  To think I could have my entire life back.  I would love for that to happen.

Monterrey can be my miracle.  Where we will be staying will be a location where there are majestic mountains called “La Sierra de La Silla” because of how the central portion of the mountain range resembles a chair or “silla”. At night, when the city of Monterrey is all lit up, I was told that it will truly your breath away!

The only problem is that the cost of this procedure is going to be incredibly expensive, as it will cost about $50,000.  The doctor is going to try to lower the cost as much as possible, but he said that is the cost is going to be about.  So… as you can see it is extremely expensive and definitely cannot be afforded on our own.  So if you can please help out by doing anything… whether it is fundraising, spreading word of the website, donating, etc. I would really appreciate.  I really need this treatment, as it is my only chance.  I have such a desire to get better because the pain is so bad… and it is definitely all worth all the risk. After all, my life is not mine anymore.  The pain is constant.

Well… the doctor and I have another meeting set up to talk more and such because things have to be scheduled and there is a lot of planning to be done.  I was really shocked because he told me that we would set up another meeting on the phone for Christmas Day and Christmas Eve, as he said he would wait for my call and such.  When I reminded him that it was the holiday, he said that I was more important than a holiday.  This is one great and dedicated doctor.

In the meantime though, there is so much to be done because not only do we have to find the funds to pay for this trip, which is most important, but also we have to make arrangements to get a hotel, airfare, etc.  In addition, we have to get passports as well because neither my dad nor myself have one since we never have been out of the country.  I really hope it doesn’t take that long because we really need them urgently. Plus, I know that they are also very expensive, as each passport is over $100.  I don’t know how we are going to afford everything.  But I am just praying that there will be a way because this is the miracle I have been praying for.

Well… I just wanted to let you know the good news that I heard today, as well as to ask you if you can please help me by anyway find a way to get that miracle to happen.  Like I said… there is no way that we could possibly get that coma on our own because we can in no way afford it.  If you can please do anything, I would appreciate it.  Anything and everything… even a prayer… is appreciated.

In case I don’t write again before, I want to wish all a very MERRY CHRISTMAS.  May you all have a wonderful day celebrating his birth with your family and friends.

1512135_10101001126296860_327337448_oThanks so much for reading this.  I really appreciate all the support you have given me.  We are still planning on going to California despite this news of Mexico because we still want to hear what California can do for me just in case it doesn’t work out in Mexico or if we go to Mexico and they think that the Gastroparesis and CIP won’t be helped by the ketamine (even though the doctor said on the phone that it should, but he can’t be 100% sure until he sees me and evaluates me in person).  Please keep your fingers crossed and please help me on the next battle in this war against this horrific illness.  After all, I have too much to live for and I don’t want to die.  I am not ready to surrender as of yet.  By finding out this news today, a new match was lit under my butt and I am ready to fight even harder right now.   Words cannot express the renewed sense of hope that me and my family have that I will be able to beat this and that one day I can regain my life that has been taken away from me.  Please join me.  Hopefully 2014 will be my year!!

Love,

Fallon

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December 11, 2013

praying-animated-animation-praying-smiley-emoticon-000338-largeHi-

I just wanted to continue where I left off since I have some things to add to yesterday’s message!  To begin with, I have another ketamine coma/infusion in the morning.  Thank goodness because I really desperately need it.  Not only do I need it because it is the only break I get from the most excruciating pain you can ever feel, a pain that never leaves you, and a pain that irks you 24/7, but I am really needing a break from all that has been happening.  I have been busy not only suffering and rapidly deteriorating, but I spent the day today planning my emergency trip to Florida.  Unfortunately, I will have to make an “emergency” trip to Florida on Monday and therefore, I was busy today getting everything prepared and situated for it.  In addition, I had spoken to my doctors even more today and found out additional news that really scares me.

I really need this ketamine coma/infusion to work because I am suffering so much.  I can’t believe how bad things have really gotten.  I never would have believed in my life that it was even quite possible for things to really to get so bad.  I didn’t even think it was humanly possible.  My parents keep saying that I am being “tested” for something but I don’t know what on earth that could be because what I am being put through… no one should ever have to experience.  It is the worst thing that anyone could ever undergo and it is like living in HELL 24/7.  It has gotten so bad lately that at times I sometimes even have asked my parents and doctors to just “let me go” already because I can’t take it anymore.

The pain and suffering is unrelenting and I just honestly don’t know how much more of this I can take.  I go through everyday and watch my life just pass me by.  Everything that I worked for throughout my years… my dreams and aspirations… are all put on the back burner… as I am stuck being all alone trapped in this horrendous situation that is inescapable.  Along with the extreme physical pain that has accompanied my illness, have lost my ability to become a doctor, my social life, my money, and my lovely personality.  I had so much going for me and I spent much of my school years working towards my future… a future that I never thought would never be able to happen.  I had a “A” average in high school, was attending New York University, and had it planned that I was going to become an excellent doctor so that I could help others.  I also had it planned that I would have a husband and a family.  I had so much going for me and there was so much for me to experience in the world that I had not yet experienced because I was just starting out on life.  Never did I think for once that I was going to be robbed out of everything and basically have my entire life taken away from me.  Never did I think that I was going to basically be confined to a jail cell of pain, suffering, and deterioration.

It is the most horrible situation imaginable because it is so incredibly painful.  I suffer 24/7 from being in pain, as I feel like battery acid is being poured all over me.   I feel so weak and I can barely have enough energy to get off the couch.  All I can say is “Don’t touch me” because even the lightest touch sends my pain soaring further.  I have to be especially careful because even though bumping against a table or wall that wouldn’t hurt a “normal” person, it can bring tears to my eyes, doubling me over in pain.

I cannot deal with this pain.  I constantly feel like my bones are being snapped in half or being crushed, which is not a pleasant feeling at all.  My muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out. I even get painful muscle spasms that worsen especially if I push my body past its limits, which is basically by doing anything at all. The spasms are worst in my left leg, but the right leg will jump in on the action if the other one gets going. It can last hours non-stop.  Even though I try to put up a strong face and try to hide the pain, the pain wins at times, making me cry an ocean of tears and longing for someone to take it all away.

This disease has blazed a trail through my entire body and has literally taken over.  It has touched everyone one of my limbs, my hips, hands, feet and shoulders… even my torso, back, face and internal organs.  Not only do I suffer with excruciating pain in that I feel like I am being roasted on a fire, but I also suffer from my feet, legs, hands and arms turning a rainbow of colors.  The doctors are so fearful that my limbs might have to be amputated eventually because of the extreme lack of oxygen.

Not only has this disease affected me in those aspects, but also it has left me with severe autonomic dysfunction and severe gastroparesis.  Gastroparesis is another condition that involves the stomach not emptying itself of food in a normal fashion. This should not be a surprise since the GI system has high-energy demands and is made up of many muscles, nerves and glands.  Since the sympathetic system tells the GI tract to shut down (no time to eat – crisis is here – danger), digestion more or less stops.  When the parasympathetic system comes on much later, then blood flow to GI tract increases and digestion is now allowed.  Common symptoms include dysmotility – which actually means “bad movement” – so the gut is either moving too fast (resulting in diarrhea) or too slow (resulting in bloating and constipation).  Dysmotility could occur at any level of the GI system (i.e. mouth, esophagus, stomach (delayed gastric emptying), small intestine (malabsorption), large intestine (irritable bowel)), but for me, my entire GI system is basically ‘dead.’ So have dwindled down to weighing only in the 60s and to a BMI that is nonexistent.

Even though I have tried not to let my illness rule me, as I rule it, it has been an incredibly tough journey.  Not only has it been tough physically, but also it has been tough emotionally.  If it weren’t for my loving family, I wouldn’t be here today.  I endure whatever I have to, because giving up is not an option. Each day is an adventure, with new worlds to explore. I take it one hour, one minute, one second at a time supported by the people who love me because of who I am… with this illness and all.

Every time I think I see a light at the end of the tunnel, and a possibility of getting well it turns out to be a train… whether it is because it doesn’t work or because I can’t get it because we can’t afford it.  However, in the meantime, I have made it my goal in life to share what I have learned and to help people learn about this horrible mysterious illness.

That being said… I guess I should tell you the absolute latest about what has occurred today.  As I started to let you know, I was busy making final arrangements for our “emergency” trip to Florida.  It is especially hard to do this when you don’t really have the finances or funds behind you.  As my disease and treatment is incredibly expensive, we have been having difficulty paying for treatment for me… even despite all the ‘cuts’ that we have made in our lives.

Unfortunately we have no choice but to go to Florida on Monday because it is an “emergency!” We are trying all different ways to find the means of getting there financially, but you really can’t get water from a dried up well.  Even though we are making the necessary arrangements because it is a necessity to get to Florida, we are hoping that in the next few days that some donations will come in.  Therefore, if you can please send a link to my www.gofundme.com/FallonMirsky page, I would really appreciate it.

I did speak to my doctor in Florida today and he was quite frank and honest with me about how bad things have gotten.  He told me quite bluntly how he told me in the past that I was a “ticking time bomb waiting to go off and not it looks like it is that time.”  He told me how he doesn’t even know if it is safe for me to even fly to Florida, but unfortunately, there really is no other choice in the matter because there is no hospital here to care for me.

When I spoke to the doctor, he made sure that I knew how sick I really was.  He had me constantly acknowledge everything that he said and make it known that I understand everything that he was talking about.  I honestly felt like I was being recorded or something just in case something would happen to me so that he was all ‘covered.’ I do know that he is the type of doctor that when you do see him in person that he videotapes everything so that there can be no question of anything that he says or what happens.  He makes sure that you understand everything that he says on video so that there can be no “he said… she said.”  He makes it so that he doesn’t leave any stone unturned when you see him and crosses every single “t” and dots every “I”.  He is one thorough doctor.  So, in a way it wouldn’t surprise me if I were being recorded because I think he would do anything to ‘cover’ himself.  I guess I can’t blame him though because I wouldn’t want to jeopardize my license or anything either… especially when I am dealing with someone as sick and life threatening as I am.

I just couldn’t believe how blunt he was with me. Even though I tried not to cry and tried not to let it bother me on the outside, it really did bother me on the inside.  Whereas I didn’t show it on the outside, I was really crying and dying on the inside with the news he was telling me.  He told me, “Even though you are not having blood coming out of your ears, you are in really serious condition and dying. You are in a life threatening crisis and really need serious help immediately.” He also said that his main concern was to stabilize me ‘electrically’ because he said, “something is especially going wrong with your body electrically and I am afraid it is going to go into power failure.”

As much as I wanted to make a joke of things and pass a joke because that is how I deal with things, I knew that if I did something like that, he would go bizerkus because he was really serious about what was going on and was upset with all that was happening.  He was really concerned and he literally made me acknowledge that I am taking a huge risk with traveling to him.  He also had me acknowledge that even when I see him, the closest hospital is 20 minutes away.  Even though I knew all this already, he had to say this and make me aware of the situation and say so too because this was his way of covering all bases. You know?

So… with all that being said, the doctor said that it was imperative that I come to see him on Tuesday morning.  Originally my appointment was scheduled for 11 AM, but due to how poor my health is, he wanted to have extra time with me and therefore, he decided to have me come at 10:30 instead. So, dad and I are planning on leaving for Florida on Monday.  I am really scared.  Scared not only because I don’t know how we are going to afford all this, but also scared for the trip and what news I am going to be given.  I recently heard about a kid dying on a plane from an underlying condition and I am so fearful I will suffer the same fate.  But…  like I said before… we really don’t have a choice in the matter, as I really have to go because there is no one around here that can really help me!

In the meantime though, I am going to have the ketamine coma/infusion tomorrow.  Not only am I going to have that and hopefully all will go according to plan, but I also need to have an injection of Torredol because the surgeon that worked on my jaw and such wants to put me on Torredol and it can’t be started unless it is first given intravenously.  Even though I am on a lot of other medications, he is hoping that the Torredol will help because it works in a different area of the brain.  I know when I was in the hospital, the Torredol definitely helped when it was given in the IV. I am only hoping it will help now too.

I am also going to see the osteonecrosis doctor and pathologist on Thursday.  It should be a very interesting appointment because the osteonecrosis in my jaw has been worsening and the surgeon looks like he might have to go back in and operate more. I guess I will know more after the appointment on Thursday.  I am not going to jump to any conclusions because even though I am in so much pain, I really would hate to undergo more surgery for that because the surgery isn’t covered under the insurance.  So… it would cost even more money, which is something we definitely don’t have.

Gosh… there is so much going on and we are leaving in just a few days.  I just wanted to write and let you know the absolute latest.  If you can please spread word of my website at www.gofundme.com/fallonmirsky, I would really appreciate it.  After all, I desperately need help paying for treatment especially since I am leaving for Florida in a few days.

Please consider helping our family get through this incredibly difficult and emotional time.  Even though we desperately need to go, we are of course in need of your help in order for that to happen because we don’t have the finances.  The financial toll that the continued treatment costs have taken on my family are astronomical and have led to some very difficult decisions… some that no family should have to deal with.  In the meantime, I have a busy next few days ahead of me. Next on the checklist is the ketamine coma/infusion tomorrow morning!  Please continue to pray for me!

Love,
Fallon

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December 10, 2013

Screen Shot 2013-12-10 at 2.40.43 AMHi!

I got URGENT news.  Looks like I need to head to Florida on Monday!!  So… since so many things have been happening, I figured that I would write and fill you in on everything.  I also figured that maybe it will sought some stuff out for me because I am right now in a tornado of information.  I literally feel like I am in a whirlwind because things are not good at all to be honest with you, and yet, so many things are happening.  I am scared in so many aspects that I don’t even know what it is like anymore not to be scared!

As I have written in the past, I really needed to get to John Hopkins Medical Center. I was going to HOPKINS mainly for the part of my illness that dealt with my Gastroparesis, as well as my RSD too.   However, since I couldn’t manage to get there until January 6th because of the holidays and such, I am now going to see my leading specialist of my underlying neurological disease (RSD) in Florida in the meantime.   I hate the holiday time because there is absolutely no one around and it isn’t just ONE holiday either.  It is one holiday followed immediately the following week afterwards with the other holiday.

But, the best doctor for my neurological disease happens to be also the leading researcher in my disease as well, and he is found in Florida.  He is also the doctor who was sending me hopefully out-of-the-country for the very intensive ketamine coma that I really need to put the disease in remission. Unfortunately though, he doesn’t take any insurance whatsoever and he is quite expensive.  So I hate when I have to see him because he charges so much and he isn’t exactly around the corner, so I have to worry about traveling expenses too because I have to go all the way to Florida.  Yet, I have to see him because he is the leading guy in the neurological disease.  He says that “even though he is doing the work pro bono, he still has to pay his staff and for the building and such, and that is why he charges so much money.”  But there is charging… and then there is charging and believe me… he charges a lot.  Just seeing him in his office costs me nearly a grand… and that is not including treatments or anything.  So you can imagine how much it would cost me if he did anything to me.

Anyway… things have gotten so bad lately that I have really no choice but to see this doctor as soon as possible.  My health is really deteriorating and if something isn’t done fast, I am going to literally die.  My lungs are filling up with fluid and I am literally drowning. My autonomic dysfunction is absolutely out of control and at its worse as the littlest thing will set it off and it will affect my heart, lungs, and everything else.  My whole entire body is going haywire and I am in so much pain.  I really honestly don’t know how much more I can honestly take.  That being said… when I called the doctor in Florida, he even didn’t like what was going on.  He said that I am in a “life crisis” and need to be hospitalized immediately because I am going to die.  He said that if something isn’t done fast, I am going to die. He really wanted me to go to the hospital as soon as possible, but unfortunately, there is no place to go.  He said that if I went to the hospital to have the hospital call him and he would tell them what to do, but the problem is that they don’t have the facilities and means to do what he says.  So… going to the hospital is kind of a waste of time.  I was also there about a week ago because things have gotten so bad and they discharged me because they couldn’t do anything to help me.  They actually acknowledged how poorly I was doing and how I was going to ‘die’ and such, and yet… they still discharged me because they said that they couldn’t do anything further for me.  They said that I needed to get to a place like HOPKINS or Florida that can care for me.  So I am out-of-luck even if I go to a hospital around here and the doctor even states how I need EMERGENCY help now.

FROSTY THE SNOWMAN WALKING SNOWFLAKE BACKGROUNDSo… right now the doctor has made emergency plans to meet me on this coming Tuesday in Florida, which means that I have to leave on Monday.  I really don’t know how I am going to afford this because not only do I not have any money for traveling and such, but also like I said before, the doctor takes no insurance and he alone will cost me close to $1000 to see him just for the day (and that is if he doesn’t do anything).  He said that I have to see him urgently because something needs to be done and he can’t really advise me over the phone because it is too dangerous.  So I have no real choice but to head down there to Florida.

I am really nervous because I am scared I am not going to make it.  I am scared because my body is suffering so much.  I don’t honestly know how much my body can take.  I really don’t even know if my body will make the trip there because traveling (especially on a plane) takes so much out of me.  It really takes me days to make  ‘comeback’ when I go away because it takes such a toll on me.  I am afraid that I am too weak to go.  I keep thinking about the kid that died on the plane last week from an underlying condition.  I really hope that doesn’t happen to me.

I am also nervous because I am scared of the money issue.  I really don’t know what is going to happen because we don’t have the funds at all.  My parents business isn’t doing well and there really aren’t any funds to be had.  We haven’t really been able to have a salary check in awhile and even paying the bills have really been a hardship…even the mortgage.  We even had trouble putting food on the table because of the lack of funds.  In fact, I didn’t want to talk about it because I was hoping to not have to worry about it ever again or anything because I was hoping it was going to get better, but we even had to cut Thanksgiving because of lack of funds.  Can you imagine?

Never would I think that a holiday like that would have to be cut because of no money.  I feel so bad for what I am doing to my family.  I really don’t know what to do.  I really am scared because not only can we not afford this, but it also means more days that my dad won’t be working because he will be with me and therefore, how is the business going to make its money and how are we going to make the income necessary to pay our bills? Everything just continues to worsen.

Instead of things turning around this holiday season and looking ‘up’, things only continue to worsen and look down.  It is like the GRINCH is here and is stealing all my happiness that could exist this holiday season because everything revolves around money and that is something that we definitely don’t have any of.  We couldn’t even celebrate giving each other gifts this year.  I mean… that really is nothing, but still… I would have loved to give my parents and people I love something during this holiday season.  You know?  Also… you know things are really bad when you can’t afford a holiday meal.  I didn’t want to complain especially when everyone was complaining how “nice” their holiday was, but I only wish my holiday was able to be just as nice.  I was hoping to be able to put it under the pillow and not think about it because I was hoping things would turn around, but unfortunately… things only continue to worsen.

I am so very sick and I am so scared.  Scared of the money, scared of dying, scared of everything. I really am suffering.  I usually ask my parents “what should I do?” because I don’t know what to do because I know deep down that we can’t afford things even though I know I desperately need them, but this time I said that “We need to definitely get to Florida immediately and get out-of-the-country ASAP or I am going to die.”  I didn’t give them any options.  I told them that if this isn’t done and done soon… I am going to die.  I never gave them an ultimatum like that.  For me to actually do that… It means I am really suffering.  I can barely get off the couch.  I constantly feel like I am going to collapse.  My dad says I look the worse I ever have looked.  My heart pounds out of my chest so hard and it literally feels like it is going to stop beating any minute.  I am gurgling at every breath that I take and I am so entirely thirsty.  Yet, every time I drink because I can’t quench my thirst, I fill more up with fluid and I keep drowning in my fluids.  Dad has to keep breaking up the fluids in my lungs because I am literally choking on them.  If he isn’t around to do it, I can only imagine what would happen.  I literally start gagging and choking just by breathing because of how much fluid I have in my lungs.  It is so unfair. Everything is just shutting own on me.  Not only are my lungs filling up on me because of my heart, but also liquids are spilling over and I am aspirating because my GI system is totally dead.

In addition, the nausea is also so intense.  It isn’t even where I am nauseous from my stomach either anymore. I am nauseous from my throat. I can’t manage to eat anything.  Just the thought of food turns me off already.  The doctors want me to stop eating and drinking permanently because it is messing me up more, but of course that depends on getting the tubes because you can’t just exist without not eating and drinking.  OF course getting the tubes though remains on hold because it costs money (money we don’t have), needs to be done at HOPKINS, STANFORD, or MAYO, and they said that it won’t really work until the autonomic dysfunction is really under better control because my body keeps rejecting it.  So… I just continue to wait and suffer.  I am trying to get better so badly and need so much treatment, but unfortunately like I said before… it all comes down to the same thing… money!  I so wonder what this world would be like if it never came into existence.

I also can’t even go to the bathroom.  My abdomen looks like there are aliens coming out of it because the left side is so much more distended than the right.  Did you ever see the movie SPACEBALLS?  Well… my stomach reminds me of the movie when the alien comes out of the stomach after the man eats that meal in the restaurant.  My stomach looks so weirdly distended and I feel so pregnant.  Sometimes I actually wonder when I am actually going to give birth.  I am just so incredibly uncomfortable.  It never ends.  I can’t go to the bathroom at all and I can’t even remember the last time I went.  At the very most, I will have some mucous come out of me… and not to sound disgusting or anything, but it will smell like rotten eggs.  The doctor says that the reason that it smells so bad like that is because I am literally ‘fermenting’ and ‘rotting’ inside. They said that it isn’t a good sign because I am literally building up all these toxins and such from food and especially from my medications because I cannot dispose them out of my body.  So they are causing extra problems in my body not to imagine the extra pain and agony that they are causing me.

The doctors say that I really need the transplant badly.  The only real cure to that problem is the transplant because my GI system is basically shot.  The nerves are done and my whole entire GI system is basically ‘dead!’  Yet, I am too ill for the transplant that I need, as I need that radical and risky multi visceral transplant that only like 6 hospitals in the United States perform.  I need a new stomach, small and large intestine, pancreas, and liver.  It is such a dangerous transplant and in fact the worst one you can get.  They said though that I have deteriorated too much though that I would never survive the transplant. Therefore, they want to make me stronger through the tubes, but when the window of opportunity arises and I am strong enough… they need to take it.  Yet, it all comes down the same thing… I need money because until I get money… I can’t get the tubes or anything because I need to go out-of-state to get them because they don’t have the facilities here to care for my disease and such.  Even though the tubes are considered a procedure that most hospitals can do, it is the problem that they can’t deal with my illness and such because the tubes will definitely exacerbate it.  I will definitely need special attention and I will definitely need ketamine and such.  Not many places are familiar or capable of dealing with my issues.  You know?  So… I really need to have the expenses so I can travel to places that can deal with my condition and able to help me overall.

I hate to sound like a crier and a broken record to be honest with you.  It hurts me to keep crying about money because I never had to do that in the past. I hate ‘begging’ for money because I was never like that.  I was always the first one to help others.  In fact, every Christmas (among other times), I would definitely play SANTA to the homeless and give them stuff because I knew that they were less fortunate than I was.  I think that is why some of this bothers me so much.  I have done so much for others and now that I need something in return, I am having such a hard time getting it back.  You know?

holiday-weight-gainSometimes I wonder why I can’t be as fortunate as the other people I see on TV because I see all these other people getting the media attention that they need and the help that they need as well, especially during Christmas time.  But I guess it is as the saying goes… it isn’t WHAT you know, it’s WHO you know and in my state… I don’t KNOW anyone!!

In the meantime… I have now to worry about all this upcoming stuff.  I have a ketamine coma/infusion planned for tomorrow.  At least I will be out of my suffering for the day when I undergo that.  I also have to get an injection of a certain medication because my surgeon wants to start me on a new painkiller for the osteonecrosis and such called TORREDOL, but the problem is that the medication cannot be started unless it is injected first.  So, since I am going for the ketamine, they will inject this as well.  Even though I am on so many other medications and they are probably a lot stronger like Ketamine, Dilaudid, Methadone, Morphine, etc., they are hoping that the Torredol will work because it works in a different area of the brain.  So…hopefully I will have some relief because I really need it.  I can’t take it anymore.  I need some relief because I am literally climbing the walls.  I am in so much pain that all I want to do is cry and punch things and rant and rave, yet… I am so weak and such that I don’t even have the energy to even cry and whimper.  So…  I just harbor inside all that pain.

It takes to much energy to cry or anything.

So… it looks like I am heading to Florida on Monday.  Like I have said in the beginning, I have to go see the leading specialist in Florida.  I am hoping that it will be nice and warm there because I can’t take the cold.  That will be one nice thing… to get out of New York and escape the cold.  I am only afraid that we are going to get stuck at the airport or something because of delays.  After all, the country is going bizerk with all these weather problems.  I never saw anything like this with the way the weather has been.

I am kind of glad though that we are going to see the doctor in Florida before we go to HOPKINS too because at least we will know exactly how to proceed when we go to HOPKINS.  I mean… my disease is very complicated and he might want us to go about the situation a certain way in order not to spread the disease even more because after all, my disease keeps spreading like a wildflower. In addition, he is going to want to give me about 4 days worth of ketamine.  I really desperately need this as well, so I am glad that I am going to Florida now to have it set up because it takes some time to arrange and therefore, I will now be able to receive it January 20th or so.  The longer we wait to go to Florida… of course the longer it will be until I am able to receive that ketamine.  The reason I have to wait until January 20th already is because it takes time for everything to be set up and with the holidays and everything (like I said before… those holidays interrupt everything).

But there is a HUGE problem with all this as well. As much as I need and want this 4 days worth of ketamine, I definitely will need help affording it because I will not be able to afford it only own.  Ideally, I need to go out-of-the-country to receive the amount of ketamine that I need because it isn’t FDA approved.  However, since I cannot get there right now, I have no other choice but to undergo this 4 days worth of ketamine, which is of a lesser dose.  Of course this 4 days dose is not covered by insurance either and therefore, it will cost me an exuberant amount of money as well.  I think the last time I checked, it would cost about $5,000.  I am speaking further with the doctor in the morning, so I will go over everything further. After all, as the secretary said, “He has the magic to make things happen!”

So… these are the upcoming plans.  I just wanted to update you on all that is occurring.  So as of now… it looks like it is going to be a busy next couple of weeks.  I am having the ketamine coma/infusion tomorrow and then will hopefully be leaving on Monday for Florida.  I will hopefully be home for Christmas and New Years and then immediately right after New Years I will be headed to John Hopkins, which will then be followed by going back to Florida to have the 4 days worth of ketamine.  Of course this plan is contingent also on finances, so hopefully everything will work out.

I am only hoping that things will work out and such especially since it is the holiday season.  I am not asking for anything really ‘materialistic,’ but I am just asking to just to get ‘well!’  I not only want to get well for myself because I want my life back… a life I never really got to live out the hopes, dreams, and aspirations that I had for myself, but I also want my family to have their lives back.  It isn’t fair for what I am doing to them.  I am not the only one suffering from this illness. Even though I may have the physical illness, they are suffering right alongside me.  I can only imagine the day when I am free from this illness and my family and I are able to have a ‘good’ time together again and able to go on a vacation together.  We haven’t been on a vacation or did anything fun in the longest time (almost 10 years).  All we really do is survive within the 4 walls.  We don’t even get the pleasure of enjoying a family dinner in a restaurant because I cannot eat out! They have really suffered because of me and I only wish I could give them back their lives.

I am trying to keep staying positive even though it is getting harder and harder. I am really hoping that these trips to Florida and Hopkins will be worthwhile and be full of great results.  I know that they will be filled with radical and scary treatments, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself. Since all reasonable treatments have failed to help me, I am hoping that you might have something to help regain my life.  My goal is to one day become a doctor, and I will be a great doctor because when a patient presents in my office says, “Doctor, I am in pain and words cannot express how bad it is” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”

In the meantime, I am trying to keep myself as ‘normal’ as possible and keep my mind off my illness even though I am isolated to my house.  If anyone has any good movies to watch or books to read… please let me know.  Also… I will take any good options for any good games for the iPad as well.

happyholidays_snowman_lgeWell… I really hope you have an awesome holiday season.  Again, I want to wish you the happiest of holidays and a very happy New Year.  Warmest wishes and hope you have a healthy and successful 2014.  Please continue to keep me in your prayers.

Love,

Fallon

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December 6, 2013

Screen Shot 2013-12-06 at 3.22.04 AMHi-

Happy Holidays!  O my goodness. I can’t believe that the holidays are here already and the New Year is basically just about here too.  I really hope that 2014 is going to be a lot better than 2013 because I don’t think I can tolerate another bad year.  I am only hoping for a happy, healthy, and prosperous New Year, but in terms of being realistic… I know that is not going to happen without getting the help that I need to overcome my illness. I have been hoping each year that the New Year would be better than the last, but it never is.  The only way it will happen is if I actually “get better,” which requires the help of others.  Like I have said so many times in the past, I need expensive treatments that my family cannot afford by ourselves.  Therefore, it is important that I receive as many donations as I can so that I will be able to receive the appropriate treatment needed to save my life. I also need so many prayers because I really need a “miracle” to happen.  I am really sick and deteriorating beyond belief.  The treatments that I even require are extremely high-risk and dangerous.  For example, to date, fewer than 300 patients in the U.S. have undergone the transplant that I need, which is fraught with even more rejection-related complications than other organ transplants. The intestines are loaded with immune-system cells meant to fight off invaders and when they’re transplanted, those same cells work against the recipient.

It has been a “miracle” that I have lasted this long.  In fact, I have even fascinated the doctors that I am still alive because they never thought in their wildest dreams that I would still be alive today especially in the condition that I am in.  Yet, despite facing such a killer condition, I have somehow survived.  Yet, my luck has now run out and unless something is done now, I am not going to be able to last much longer.

Yet, I am still hoping to have a happy holiday season despite this all.  I am hoping that since this is the season for “giving,” I might be able to receive some additional donations because people might consider my treatment goal as an option for giving back and making a difference during the holiday season.  I am also hoping for that Christmas miracle so that I can overcome my illness and be able to live.

gastroparesis-keepcalm-bannerWell… I just wanted to give you the absolute latest because so much has been occurring.  First off… things have gotten so horrendous with my GI system.  I am in so much pain with my GI system and every time I try to eat or drink, it only makes things worse.  I am so incredibly thirsty because of the fact that I can’t absorb anything anymore.  I keep drinking and drinking to try to quench my thirst, but all it keeps doing is making me aspirate more, drown in my fluids, cause me more abdominal pains because of the distension of the liquids, etc.

The doctors don’t want me eating or drinking anymore because my body can’t support it anymore. In fact, it is only making things worse.  However, since you have to eat and drink in order to live, I still have been doing this and causing more problems because that is all I can do until I receive the tubes that I need.  However, in order to receive the tubes that I need, I need to have them done in a hospital such as Hopkins (in Maryland), Stanford (in California), or Mayo Clinic (in Minnesota)… and those hospitals aren’t exactly located around the corner.  Those hospitals are all going to cost us money that we don’t have.  Not only will we have to pay the cost of the medical bills that we would have incurred even if the operation was local, but we have to worry about traveling expenses and also the fact that no income will be made for my family during this time because my dad won’t be able to work because he will be with me during this time.

After speaking with my team at Hopkins, I was told that I desperately have to get down to see them as soon as possible. My heart and lungs are also suffering, as my respiration is only in the single digits and I am filling up with fluids and literally ‘drowning’ in them.  Even my heart rate is dropping incredibly low.  We think its because the autonomic dysfunction is acting up quite a lot, but even so, they want to put in a pacemaker because of the fact that my heart rate keeps dropping to the low 30s.  Yet, it will be a major procedure for me because I will need to have “open heart” surgery because I need this pacemaker to be surgically implanted under the muscle, ribs, etc. It isn’t going to be a “minor” operation like it is for other people.  Then with all my other complications, it is really a difficult operation.

The doctors have also stated how I desperately need the multivisceral transplant (stomach, small and large intestine, pancreas and liver) more than ever.  However, I really am too ill right now to receive it, but they are hoping to make me stronger with the tubes and such so that when the window of opportunity opens up… we will be able to take it. Of course that would entail that everything would have to be in place, which includes finances and such because that was a major problem before and it is also a major factor in getting the transplant.  It is so unfair how the green dollar dictates my life!  Sometimes I wonder what life would be like on earth if money didn’t exist.

I desperately need help because my GI system is so incredibly horrible on top of all the pain I am already in all throughout my body because of the horrendous reflex sympathetic dystrophy.  Due to my GI tract being completely paralyzed, I cannot eat or drink anything, nothing moves, and I can’t even go to the bathroom.  In addition, the doctors are so worried also because since I am not going to the bathroom, I am not expelling my meds and other wastes and therefore, I am having all these poisonous toxins build up inside of me.  This can be causing me great harm as well.

I really need help because I literally can’t breathe or walk.  Not only does the stomach pains prevent me from breathing because it causes aspiration and such, but it also causes severe pain.  You know when you go running and you get a muscle spasm or kink in the side? Well I get it throughout my stomach and it feels like my entire stomach is stitched up.

After speaking to my doctors though, they want me down at Hopkins as soon as possible because of everything that is occurring.  They are thinking that until the autonomic dysfunction is under control, we are really going to be facing a real battle because that is our greatest enemy.  So, we are hoping that we will be able to somehow work on that aspect and be able to control that because without that under control… we don’t honestly know how the other things are going to happen like the tubes and such because the autonomic dysfunction literally causes disaster and havoc inside my body.  There is nothing worse than the autonomic dysfunction.  I literally hate it.  I hate how I can’t regulate temperature.  I hate how I can’t regulate liquids. I hate how I feel all prickly all the time if the autonomic dysfunction acts up.  I just hate everything about it!  It is just the worse.

Screen Shot 2013-12-06 at 3.21.18 AMAs such, we were supposed to head down to Hopkins on January 3rd to see the doctor.  Of course the holidays cause a huge complication in the sense that nobody is around because doctors always take their vacation during that time.  So… since it is now Christmas time and New Years, I have to wait until afterwards so that they will see me.  Of course it will be my wonderful dad who will be going with me.  I love my dad.  I don’t know what I would do without him.  I am so fortunate to have him in my life because if it wasn’t for him, I would definitely not be here today.  He is not only my dad, but my best friend and hero.  He is really the one who keeps me going.  I really wish my mom could come too, but unfortunately, someone has to stay behind to take care of everything like the business and house as much as possible.  Plus… we can’t afford for everyone to go.  Even though I would love to have my mom though with me, as long as I have my dad… that is enough for me!  At least I will get to spend the holidays with both of them hopefully!

However, I did receive a phone call tonight though to be honest with you from my doctor.  The doctor called and told me that the head of the hospital wants me to come to Hopkins on Monday and meet with me.  He is one of tee best doctors around.  However, due to the fact that it is already Friday and Monday is basically 2 days away, it is literally impossible to arrange.  Plus, I have no funds on hand to go as of now, so it is really impossible to go.  I am going to have to call in the morning to rearrange the date because of this.  It’s a shame because I am really suffering too.  Yet, I can’t go if there are no funds.  We were even hoping that we would be able to get enough funds by Jan. 3rd.  There is no way we could manage by Monday!

I can’t wait to see this new doctor that my current doctor scheduled me an appointment with.  He was recruited from Stanford University, where he was chief of gastroenterology for five years.  So… he is from my other hospital and even knows my head doctor over there too.  So that is a really good thing.  Dr. Pasricha is an expert in neurogastroenterology and leading the establishment of the Johns Hopkins Center for Neurogastroenterology.  He deals with disorders affecting the nerves and muscles of the stomach causing problems with gastrointestinal motility and pain. Since Dr. Pasricha is supposed to be one of the top of the fields, I am hoping he can help.  I only hope I can see him as soon as possible because I am suffering so much.

I also need surgery again for my jaw.  Even though I had surgery about 2 weeks ago, I need to have it again because there bone went again.  When I came out of surgery last time, I felt something ‘funny’ going on and I could have sworn that I felt a hole.  I feel everything because I am so hypersensitive… so I can feel the most microscopic thing.  Therefore, I felt it even before it occurred, even though I had just came out of surgery and the surgeons couldn’t really ‘see’ it.  They did do work in that area because it was causing problems, but obviously they didn’t do enough because they didn’t see these microscopic occurrences.

Anyway… one week out and I was like “uh oh” … there it all went!  My bones collapsed again and I have a gaping hole again!!  Went to the surgeon and they need to get me in ASAP to have it done.  This only means more money… money I can’t afford and don’t know how I am going to get because he is of course not on my insurance plan.  I already got his bill from the last surgery and it is a lot despite the fact that I still have to pay the copayments as well to the hospital and such.  I have like at least a $100 copayment for each thing I underwent… procedure, test, each day I stayed, etc.  It never ends.

So now that we have to go back into the hospital for more surgery… not only am I upset because I have to be operated again on, have to spend more time in the hospital, going to feel more pain and everything, etc., but I keep hearing ca ching ca ching because I know that this is going to be more money on top of all that money that I just already received a bill for and didn’t even have in the first place.  I really need to raise money, but unfortunately no matter how hard I try… I keep failing.  I really need the media’s attention, but you know the saying… “It doesn’t matter what you know… it is who you know” and unfortunately… I don’t know ANYONE!  So… I am on my own two feet!!

I also have a ketamine coma on Wednesday.  Not only do I have a coma on that day, which I am looking forward to because it is the only time I get a break from my illness, but I am also going to be getting an injection hopefully so I can start a new medication. The surgeon for my jaw wants to put me on a new medication (Torredol) but unfortunately, I need to have the first dose by IV in order for it to work as well as it can.  So I can’t wait for that to happen because my mouth and jaw are killing me as well.

In the meantime, I am trying to get another hyperbaric oxygen treatment.  I am hoping to go today because it does relieve some of the distension and pain in my abdomen. Even though it is incredibly expensive… It is the only relief I get in terms of my stomach.

So so hopefully all will work out because I am really suffering.  I am literally climbing the walls with everything.  I never have been suffering so much.  I am not just suffering physically, but emotionally as well.  I am tired of being in pain and tired of hurting… both physically and emotionally. I am tired of watching my life pass me by and tired of watching all that I accomplished get wasted.  I really feel like a “nobody!” So I haven’t really been doing well overall.

On a better note… I have been reading such a wonderful book that I really recommend.  It is called “The First Phone Call From Heaven,” which is written by Mitch Albom.

Well… I am going to get going.  Please help me have a happy holiday.  If you can please spread the word of my website, I would really appreciate it.  Anything and everything is needed and will be appreciated! Any amount, no matter how small, helps!!!

Sorry if this message was a bit mumble jumble.  It is just that I haven’t been feeling well tonight.  I will write more when I know more and hopefully clarify some of this up that is hard to grasp right now.

Screen Shot 2013-12-06 at 3.19.04 AMHappy Holidays again and enjoy the holidays and rest of 2013!

Love,

Fallon

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Holiday Post!

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