FALLON MIRSKY

Please help SAVE MY LIFE!

April 26, 2014

2Hey!

I wish I definitely had better news to share, but unfortunately the news that I am about to deliver is not any good. I knew deep down that this day was going to come sooner or later, but I was hoping I would never have to actually have to deal with it. I was hoping that there would be some way around it or another option, but unfortunately, my deepest fears have come true.

I spent the morning in the city getting my test done, as I needed to have another CT scan done because they wanted to see exactly what was happening with my small and large intestines. I had a CTA performed on Monday and unfortunately, the results of the CTA were not good, as it showed two really severe blockages in the intestines. It also showed a possible colocolic intussusception, which is when your intestines are like a telescope and one piece goes into another. Therefore, these situations would require urgent attention and surgery, as you can clearly die from them and as a result, my GI doctor had me go for another CT scan today in the city to further confirm exactly what was occurring.

I always had a fear of having to have to have any intestinal surgery that would result in having to wear a “ostomy bag!” I really know it probably is no big deal and probably something that I will definitely get used to, but it is something that at the current moment I just can’t handle. In fact, when my friend’s daughter ended up getting a ostomy bag way back when because she was battling a severe case of Crohn’s disease, I even told my friend that I gave her daughter a lot of credit because I don’t think I could ever handle getting a bag. There is something about getting an ostomy bag that really makes me uneasy and really scares me. It is a fear of mine that I have had from the earliest times that I can remember and I was always hoping that it would never have to happen to me even though I knew deep down that with all the problems that were occurring with me… it was a good chance that it might.

I went for the CT scan today and they had to take special care of me when I had it done because I couldn’t have it performed like a “normal” person. A normal person would have to not only have contrast injected into them, but they would have tons of lemonade to drink that would also have additional contrast in it as well so that they would have a clear a picture of what they were seeing. However, with my condition, I am unable to drink at all and therefore, all that they could do was give me a injection and work with that. So it kind of made the radiologist’s job a little harder but even with just doing the IV contrast, what the results showed was clear-cut.

I never felt so comfortable with a radiologist as I do with the one that I go to in Manhattan. I go to this one radiologist because he happens to stand out from all the rest because he doesn’t just let me take the exam and go home. Instead, he actually looks at the scans while I am there and thoroughly explains it to me while I am there. He is extremely nice and knowledgeable, and any question that I may ask doesn’t perturb him. He lets me ask as many questions as I want, as there is never a stupid question. He can literally spend an hour with me explaining all that is happening to me and he makes sure that whatever the results show on the scans is taken care of. I always feel like I am in the best of hands with this radiologist, as he has a wealth of knowledge that is like no other person that I know of. Especially with my disease that is so complicated and at times that doesn’t seem like it makes “sense,” he actually takes what I am feeling and makes “sense” of it in terms of what I am feeling and what he is seeing. He really makes me feel like I am not crazy, which I can’t tell you is such a good thing because with my illness sometimes I think I am going crazy because I get the weirdest symptoms and feelings.

The radiologist didn’t like what he saw on the CT scan at all and he said that what was seen needed urgent attention. I definitely needed surgery and needed surgery NOW. My worst fears have come true and it seems that I need to have a bag, as I have to have my entire colon removed. It appears that my entire colon is basically done with. There is no other simple way of putting it. It is completely shot. In fact, the colon is so bad that the stool isn’t even reaching the sigmoid or the rectum. It is filling up the pelvis and exerting a tremendous amount of pressure. My intestines are extremely dilated and they can easily become perforated.

The radiologist told me that I definitely needed help quickly. He said that I fought this hard and for long enough, but I just can’t do it anymore. He said that I he knows it is “scary” and that it is massive surgeries and everything, but the truth of the matter is that it just can’t be avoided. The colon is completely dead and the rectum and sigmoid colon is completely collapsed. It appears that this all has occurred there is a lack of nerve cells in my colon or they have completely died because of the autonomic dysfunction. Either way, I don’t have nerve cells that signal muscles in the large intestine to push stool toward the anus and without a signal to push stool along, stool ill remain in the large intestine. As a result the stool has stopped moving and has caused intestinal obstructions at these points.

I need to have my entire colon removed and therefore I will need to have a bag placed in me. Yet, I feel like I am not going to even be a person anymore because I feel like I am being decapitated. Not only do I need a bag to function as my colon and to eliminate my wastes, but I will also need another tube such as an naso-jejunum tube to place food into me because my entire GI tract is gone and I need to be nourished and gain weight. So I will essentially have tubes to put stuff into me as well as tubes to take stuff out. I feel like I am not going to even be “normal” anymore.

Even though I can barely eat anything at all nowadays with the way my GI tract is… at least I have the option. However, if I end up getting the tubes put into me, not only will I become more “bionic,” but I will not be able to eat anymore. The doctors said that all food will go into me via the tubes and then it will then come out via the tubes as well. I told the doctors and radiologist about how much it bothers me about how I am not going to be “normal” anymore and how it bothers me that I won’t be able to “eat” anymore, but they responded by saying that “at least you might be feeling better though.” To think though how much “eating” is such a social activity and how much it factors into a person’s social life… it really makes a big difference.   Not only that, but I will also feel hungry because feeling full and satisfied also entails putting food into your mouth and swallowing. Since I am not going to have that part, I am going to feel hungry all the time even though technically I will be “full” because I will have been fed all through the tubes.

Doctors have always wanted to put an NJ (or naso-jejunum tube) in me to get me to eat and gain weight. However, due to my illness it has never worked because my body has always rejected it. It has always rejected it because when the food goes into my intestines, it really has no place to go because the colon is essentially “dead” and there are blockages. Therefore, it makes it impossible to really put stuff into the intestines because it only backs up. That is why the radiologist told me that before a doctor can think of putting another NJ tube in me, the doctor must first remove my colon and do a complete ileostomy.

I am really upset because I really don’t want to have a bag. I am deathly afraid of it. The radiologist sat me down and tried to explain it to me and told me that he wishes that there was another way around this, but unfortunately there really isn’t. He said that I fought this long enough and such… but the fact of the matter is that I just can’t do it anymore. My body is literally failing me and if I continue to go in this direction and not have my colon removed, it will lead to further problems, as it can definitely lead to my death really soon. I can easily die because my colon will become perforated or have colonic rupture. I can also have a very serious infection called enterocolitis, which I am very susceptible to as the stool is not moving and just literally rotting there and fermenting. I can easily go into sepsis. Other things that are occurring because of this is that I am having severe edema, I’m aspirating, and it is causing my other organs to fail because of the pressure that is being exerted onto them by the over dilation of my intestines.

As such, I need to have an ostomy bag. The radiologist explained to me that I need to have the complete colon removed and a portion of the small intestine will then go through an opening in the abdomen where a stoma is created. A stoma is created by rolling the intestine’s end back on itself, like a shirt cuff, and stitching it to the abdominal wall. An ostomy pouch is attached to the stoma and worn outside the body to collect.

What I need to get is actually called an ileostomy.  The radiologist knows that I really don’t want this performed and therefore, he did say that there is the potential that once I do get this done and then get stronger, there is a possibility of having the bag removed and undergoing a pull-through procedure. During this time, the surgeon removes the stoma and closes the abdomen with stitches. That would be awesome if this would happen, but the fact of the matter is that we don’t know if that would even be a possibility because my rectum has lost the ability to function as well as a result of all that is occurring. In order for me to have the bag removed, I would need the rectum to function again. The radiologist did say though that it is possible for the rectum to possibly “wake up” after the colon is removed and after I become stronger and better nourished through the NJ tube.

So it appears that a lot has to be done and they are massive procedures. What makes it even more complicated is that I have my severe neurological condition such as the reflex sympathetic dystrophy and the autonomic dysfunction to contend with as well. Any little surgery is a massive surgery to me and therefore, you can imagine how MAJOR this surgery is going to be considering the fact that this surgery is already a MASSIVE surgery to the normal person. To complicate matters even further, I am really not a surgical candidate because of the state that I am in. I only weigh in the 60s and have a BMI of less than 10.8. I am extremely fragile and just undergoing anesthesia for a “simple” operation can easily kill me.

But I guess the doctors were right in their thinking and saying that I am a “time bomb getting ready to detonate” because the time is here that I am detonating. Now we really have to find out the best way about doing this because we not only have to find the best surgeons that are able to perform this massive operation, but we have to find a hospital that is able to be equipped to handle my overall condition because it can easily wreak havoc on my overall neurological condition and kill me and it can easily worsen that as well too. So… we really are between a rock and a hard plate, but we are also running against a clock. We really need to get something done quickly.

So we don’t know what to do. We do have some choices but we really need to MOVE on the way we are going to go. We can try to have the surgery here even though the hospitals here are probably not situated to handle my overall condition. There are excellent surgeons in Mount Sinai who are willing to see us and the fact of the matter is that is who the radiologist and my GI doc recommends if I were to have it here. The surgeon is supposed to be amazing, as he graduated from Princeton for undergrad and Vanderbilt for Medical. However, what drew my attention to him the most was that he was concertmaster of the orchestra, as he is a violinist. He has performed in many famous orchestras and since I was a violinist who was also concertmistress (of course not of huge and famous orchestras like him though), I thought it was a great thing to have in common.

However, there is a problem that the surgeon at Mount Sinai doesn’t take insurance, so I don’t know how it will work out. Always a problem, right? But there are also other problems to worry about as well because like I said before, they are not able to really “deal” with my overall condition here and therefore, I will not be able to be put into a heavy ketamine coma during this surgery, which I will most likely need to happen. Even though I can’t get the heavy and radical ketamine coma that I need in Mexico, I do need to have to be have ketamine before surgery, during surgery, and after surgery and in a great amount too because this surgery will greatly affect my overall illness and exacerbate it. It is through the ketamine that we are hoping to hold off the progression and hopefully not allow it to become exacerbated. Like I said though, even though I do get ketamine comas/infusions here in New York, the hospitals here are not situated to give me ketamine 24/7 before, during and after surgery because I will need to be placed in an ICU and the attention needed will be too great.

Another option that we have is to go to California to have the surgeries performed or to another location like Cleveland Clinic that might be better able to deal with my overall condition. During this time I will be able to have the ketamine during the entire surgery and afterwards. However, the problem with this is that of course no place is better than having surgery at home and therefore, by having surgery at a place other than “home”, it will also be further expensive because we have to worry about the traveling costs and expenses, which of course is something we don’t have.

A third option that we have is to not to undergo the this operation but to undergo a different operation known as the multivisceral transplant operation. Ideally the best thing would be to have the transplant because my entire GI system is shot. I would get a new stomach, small and large intestine, pancreas, and liver. However, there are only 6 hospitals in the country that perform this operation and of course they aren’t located in the local area. In addition, this operation is incredibly radical and risky and in fact it is the most difficult transplant that you can possibly have. For me to be in the state that I am in, we don’t know if I can even handle the operation because it is a massive and hard operation to undergo. It is extremely life threatening.

Finally, the last choice that we have and the one that would be the absolute BEST option would be to go to Mexico and have the radical ketamine coma. That would be the best option because hopefully it will eliminate the need to have any of these surgeries. It is hoped that through the Ketamine coma that the disease will be reversed and I will regain the ability to eat and go to the bathroom. Other patients have experienced the same problems as I have and after undergoing the radical ketamine coma, not only are they essentially cured from the neurological disease but they are also cured from the GI point of view as well. That would be amazing if that would happen to me as well because it would save the problems of having those massive surgeries and it would also save me from having my colon removed and having a bag, which is something I really don’t want. But the problem with this is of course the money. In order for this to happen, which is the best option of them all because I desperately need help with my neurological condition as well and will essentially “cure” me, it will cost us over $100,000. However, we cannot afford that amount on our own and therefore without the help of others, it is literally going to be impossible to go. Despite all the trying to fundraise, we are really short on funds still. We are scheduled to go to Mexico to undergo the coma in July and we are hoping to be able to afford it at that time, but it is at the point where we really need to do it now because time is of the essence.

So decisions really need to be made and made in a hurry. In the meantime, we are scheduled to leave for California on May 13th and we are scheduled to see the surgeons at Mount Sinai on May 12th.  Yet there is plenty to be done even before that time and there is still plenty of time for emergencies and crises to arise. After all… there is never a dull moment in my life.

In the meantime though, the doctors are afraid something is going to happen and really think that the best place for me would be in the hospital. I really need to be decompressed as well and therefore, they want to put me in the hospital and do that procedure on me. They will literally put a tube in me and vacuum the stool out of me and decompress me. The tube will remain in me for a couple of days. When I asked the doctors how long I will have to remain in the hospital for though, they couldn’t even give me an answer. Even when I joked around and said that I could be in the hospital for the ‘duration,’ they didn’t laugh but rather said that it was quite possible. I don’t want to live whatever time I have left or spend my life in a hospital.

I am also scheduled to go for another procedure on Friday. I am supposed to have an endoscopy in the hospital to see how my esophagus is functioning as well as other things. In the meantime, they are going to try to decompress me a bit and suction me out a bit then, but it won’t really be as nearly as great as if I went to the hospital and had it done there because the tube would be different and I would be suctioned out for a longer period of time if I was in the hospital.

However, just as the doctor stated, it is not going to be a miracle or alleviate the problem by being decompressed. Yes I really need to be decompressed because I am too dilated and there are too much pressure being put on my organs and there is overexpansion of my intestines, but the problem that the decompression is solving will only be temporary. The decompression will only last a couple of days at the most and therefore, we really need to do a more permanent fix, which is to have the operation. But at least if I have the decompression I will not only have the ‘temporary’ fix but I will feel better as well because I am in so much pain as well.

In addition, the doctor has placed me on a new medication that they are trying me on. They are experimenting me on it and hoping that it will help. They are not expecting it to work “miracles” but they are hoping it will might help at something. Even if it helps a little, it will be a great thing. They are hoping that if it does help, they are going to write it up in a journal article because we are using it in a “off label” usage.

So there is a lot going on. I am just basically falling apart. Besides all the stuff that is occurring with my GI system, I am also having a hard time with my osteonecrosis. It turns out that a piece bone actually fell out of my mouth the other day and as a result, I now have a hole in the roof of my mouth. I had an apportionment with the surgeon on Thursday, but I guess I didn’t make it that long. I did keep the piece of bone that fell out though and I am going to bring it with me to show him. He will probably want to run a pathology report on it like he has done on all the other pieces that have come out, but I don’t know if he will still be able to do so because it has been out of my mouth instead of being a “fresh” piece. You know?

So… that appears all that is happening. I am so exhausted and so confused with everything that is happening. We really need to make a lot of decisions in the next few days. I really don’t know what to do. My mind is racing like in a million directions. All I know is that I feel like I am not normal and I feel like I am literally not only falling apart, but I feel like I am being decapitated. I just want my life back. I am just praying that I get the funds to go to Mexico because I am hoping that this radical Ketamine coma can stop all this bad stuff that is occurring and “cure” me like it is suppose to do. But like I said previously, it all depends on the funds and therefore my life is kinda resting in the hands of the you and the people in the world. I just hope people find it in their heart to donate because essentially all I need is 100,000 people to just even donate $1 and I will be set. I don’t even think that is an impossible feat because for 100,000 people in the world to donate, it is really not a lot because the world is so overly populated. In fact, all I am asking is for 100,000 people in a world that is so overly populated. As of March 26, 2014, it is estimated that the world population was 7.159 billion by the United States Census Bureau. All it takes is $1 from each or 100 pennies.

So I am just going to keep hoping and praying that it will happen. If you can help facilitate that, I would really appreciate it. Please spread the word that help is desperately needed. Donations can be given at www.gofundme.com/FallonMirsky. In addition, Jaime is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online. Please add all of your Facebook friends onto this party AND please post about this on your wall with the link so people can make purchases. If you have friends or family outside of Facebook and they would like to make a purchase to help raise money for HOPE FOR FALLON email them this link with an explanation of the fundraiser.

http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467 The more purchases…. the more money we can raise!!!!

In the meantime I am still trying to keep myself as “normal” and grounded as possible in a world where I am literally losing my mind with everything that is occurring. I am reading a terrific book that I recommend called KEEP QUIET by Lisa Scottoline. I never read a book by Scottoline, but it appears to be a great book.

1926187_10101085748233820_1172142775_oAs a little side note, Missy’s birthday is coming up. It is in about 2 days and I can’t believe she is going to be 9 years old. I just love that cat. She is really my best friend. She is the best thing that ever happened to me. I don’t know what I would do if I ever lost her. She is literally like my life. We call her my ‘babysitter’ because she knows exactly when I am not feeling well or not doing we well as I usually am. She never leaves my side and she is the first one there to make sure that I am al right. It is so nice to be able to spend the nights with her because the nights get so lonely especially since I can’t sleep like normal people do. We both not only watch television together, but we both love going on the computer together. She loves watching me use the computer. She is also very vocal in that she always “meows” to me and lets me know of her presence and when she wants something. She always knows when I am getting up because she is always there at my side. She really is something else.

Well, I am going to get going. I think I wrote enough and you are probably exhausted from reading so much. I know I am kinda exhausted from writing so much. I don’t even know if I am writing coherently anymore. I will keep you posted on everything that is occurring.

Please continue to pray and send those positive vibes!

Love,

Fallon

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April 22, 2014

737125_734391376591211_5168618130208749911_oHi-

I just wanted to update on what has been happening because there has been an emergency that has occurred today.  We got extremely bad news today and to be honest… I am really in a whirlwind of everything going on that I don’t know how clear this update might be.  So please bear with me.  If you have any questions, please feel free to ask.

Today has been one interesting day. Thank goodness it is almost over.  I don’t think I can take anymore news today.  My plate literally has been filled to the max and I don’t think that I can add another thing to it at all.  It has come down to me being literally in a “life and death” emergency state right now.  Not only is my bloods extremely low and I can go into cardiac arrest at any moment, but my GI system is completely shot.  It turns out that I need emergency surgery on my GI system, but unfortunately the hospitals around here are not equipped to handle my situation.  I don’t know what is going to happen, but I do know that I am not supposed to have any stress because of how bad my bloods are and it can easily affect my heart and cause an arrhythmia or cardiac arrest, but that doesn’t look like it’s going to happen.

I went to the gastroenterologist today to start my day off.  I saw him first thing this morning and was placed on a new medication called Linzess.  It just came out on the market and even though it isn’t expressly used for my illness, we are hoping that it will help with the Gastroparesis and my GI system.  The doctor doesn’t have any other patients on this medication with my problem of course, so I will be the first.  The doctor is planning on putting me as a “case study” and if it is successful, he plans on writing me up in the journals and this way I can hopefully help others.

However, even though it does sound hopeful that it might be able to help me, there is of course a problem because nothing in my life comes easily and without a problem.  Like always there is always a problem with this situation and the problem with this is that it is a very expensive medication and we are not covered by insurance.  So I don’t know what I am going to do because I really want to try it.  Even though this new medication will not “cure” me or anything because it is not going  to the underlying problem, at least it is putting a bandaid on the problem and could HELP.  But the doctor did state that we really need to stop putting bandaids on the problem and get to the underlying root of the problem because I am running out of time and I am getting significantly worse.  He said that I am rapidly deteriorating and have worsened significantly since the last time he has seen me.  He said that he is really extremely fearful for my life… especially since my bloods are so very low.  He said that I am basically a “walking miracle” right now to even be living because people normally don’t live in the state that I am being the weight that I am, BMI that I am, and having the low bloods that I have.  He said that I definitely can’t afford to go lower in any of them because I will definitely die.  It would be a death sentence.

Therefore, the doctor said I really need to get to Mexico to get to the root of the problem ASAP.  But of course that is all dependent on that we receive the funds.  Unfortunately the Ketamine Coma that I need to have in Mexico isn’t cheap, as it costs over $100,000 and we cannot afford it alone.  Therefore, until I raise enough money, which I have been so desperately trying to do so… we cannot go.  We have a date set to go to Mexico to have the treatment in July, so we are hoping to have all the funds by then.  But of course it is all dependent on the rest of the world so I am really hoping that a “miracle” will take place and there will be plenty of donations.  My life literally rests in the hands of the rest of the world.  I just hope also that I make it to July because I am rapidly deteriorating.

When I went to the GI doctor, it was also determined that I have  to undergo another endoscopy.  The doctor doesn’t like how things are progressing and therefore, he wants to do another endoscopy as soon as possible to see what exactly is happening especially since I have been having difficulty swallowing.  Even the littlest things that I have been able to swallow in the past such as the ice pops, egg-whites, and ice-cream have been impossible to get down lately.  So the doctor wants to see exactly what is going on.  We cannot do a colonoscopy because my GI tract is so horrendous that they can’t clean me out.  Even with an NG tube they can’t do anything to clean me out, as I had an NG tube and they had to remove it because after pouring in 1/4 liter of GO-LITELY… the tube started to back up and the mixture was back flowing out of my nose.  Nothing just seems to clean me out!  So an endoscopy is the next best thing especially when I am having difficulty swallowing.  The doctor also wants to see what is happening because since I am vomiting constantly, he wants to see what damage is occurring to the esophagus.  It’s just a mess.

So I am scheduled to have the Endoscopy on Friday, May 2nd.  The doctor wanted to have it done as soon as possible, but he had to be careful because of my low bloods.  He is hoping that my bloods can get up a bit beforehand.  But he also wanted to get it done before I leave for California, as we are planning on leaving May 13th. So everything is scheduled in the hospital for an endoscopy for that date.  However, now with the horrendous news that I received tonight… I don’t even know what is going to happen.

After leaving the doctor’s office, I proceeded to go to Mount Sinai Hospital to have a CT Angiogram.  It was so painful and I was literally screaming the entire time because the dye and the needle was really causing me so much pain.  Due to my illness, I am so hypersensitive that even saline solution in an IV causes me horrendous pain.  My dad said that he literally heard me screaming through the soundproof doors.  What a day I endured because not only did I suffer from the pain of the needles and infusion of the dye, but it also wreaked havoc on my body because it triggered off my illness further by stirring up the autonomic dysfunction.  The infusion made me burn up so badly and when your body can’t really adjust or acclimate to temperature changes, it really affects you.  The nurses kept asking me if I wanted ice to help with the burning and pain, but that would be the worst thing to do to me.  Little did I know though that things were only going to get worse from there.

We weren’t supposed to get the results to the angiogram until about 24 hours later.  At the earliest, it would be the end of the day that we were told that we “might” have heard something.  I was having the angiogram done because we wanted to see if we can further determine why the edema was occurring in my legs.  We didn’t know if it was because of a clot, my disease, proteins spilling out, etc.  However, we ended up hearing the results only about 4 hours later because there was a real emergency that needed urgent attention.  I never thought I would hear what I was going to hear.

When I got the phone call from the doctor that ordered the test, which was my vascular surgeon, I wasn’t expecting to hear the news that I was about to hear at all.  He told me that I needed to see a surgeon immediately and I needed to get to a hospital as soon as possible because they found something on the CT Angiogram that needed urgent attention.

The doctors told me that they found a severe case of a bowel obstruction that needed prompt and urgent attention.  However, this wasn’t just an ordinary bowel obstruction or a minor one.  In fact, the obstruction was so bad that my entire colon was dilated so much that it was amazing how much a colon can dilate.  It was also so dilated that it was compressing all my other organs and it even made the bladder collapse, which could be the reason why I always feel like I have to go to the bathroom. The results also showed that I had a complete obstruction in both the small and large intestines, and they also found a colocolic intussusception.

The vascular doc said that I needed to see a surgeon immediately because of this condition, but due to my circumstances and rare situation, he didn’t know best how to proceed and therefore, be wanted me to discuss everything with one of my GI doctors.  So I called my GI doctor and he finally called me back tonight to go over everything.  Little did I know what I was going to be in for.  This is really bad.

When I spoke to my GI doc, he told me how bad this blockage and obstruction really is.  He told me also how rare and how horrible the colocolic intussusception is as well, and he also said that it was urgent that this be taken care of because I can easily die from it.  I can easily go into Sepsis and I can easily die from it.  The problem is though that even though I need urgent surgery, there really isn’t a place to have the surgery because I need a hospital that is not only capable to do the surgery, but a hospital that is capable of dealing with my overall condition, as I will need ketamine around the clock and even be placed directly into a ketamine coma afterwards because otherwise my disease will surely become exacerbated and spread.  Unfortunately there really isn’t any local hospitals that can care for my overall situation in the area and the best places to really go is California or Mayo Clinic.  However, California is on the other side of the country and I need urgent attention now, and Mayo Clinic doesn’t take my insurance at all and we definitely wouldn’t be able to afford a huge surgery like this.

This is no little problem.  The doctor explained to me how life-threatening and how big of a deal this problem really is. He told me that my intestines are like a telescope.  You know how a telescope has each piece going inside one another?  Well, that is basically what my intestine is doing. It is the enfolding of one segment of the intestine within another. Intussusception occurs when part of the bowel or intestine is wrapped around itself producing a masslike object.  In other words, it is the infolding (telescoping) of one segment of the intestine within another.  When the segment of bowel telescopes into a more distal segment, it drags the associated mesentery, vessels, and nerves with it. This results in compression of the veins, followed by swelling of the region leading to obstruction and a subsequent decrease in blood flow to the affected part of the intestine. If the blood supply is greatly reduced, the involved intestine may swell, causing an obstruction, or even die (become gangrenous) and bleed. It also may rupture and lead to abdominal infection and shock.  Additionally, there may be perforation or hole in the intussusception bowel that can cause a life threatening infection in the peritoneum (a layer of tissue that protects the organs and intestines within the abdominal cavity).

The doctor said that I need this taken care of immediately, as treating intussusception by reduction (alleviating the source of blockage) is an urgent and  emergency procedure.  He said that my intestines really need to be detangled, taken out, and decompressed.  He said this is no “little” operation whatsoever.  He said that it is going to be one MAJOR operation and it needs to be done urgently.  Yet, we don’t know how best to proceed.  Therefore, after speaking to the doctor, he is going to speak to doctors, surgeons, etc., tomorrow in the hospital and we are going to have a meeting tomorrow afterwards to learn best how to proceed.  Time is definitely of the essence, but we can’t afford to jump the gun because it can easily be the wrong thing to do.

I knew something was wrong because things really took a turn for the worst lately.  I have been feel worse than ever lately and it has been literally impossible trying to go to the bathroom.  Even the nausea and vomiting has worsened.  Even the smell of the mucous that was being expelled has changed lately, as the mucous smelled because the doctors said that I was literally “rotting” inside. He said that since nothing was moving inside of me, whatever I was taking in and the littlest that remained in me and didn’t get vomited back up… whether it be meds or food… it was just “rotting” because it had no where else to go.

I knew that something like this was going to happen because we were wasting so much time.  The doctors kept saying that I was a “time bomb waiting to detonate.”  I guess they were definitely right.  I knew that we couldn’t wait  so long, but what choice did we have?  You can’t get blood from a stone and unfortunately we ran out of money to pay for the treatment that I need.  That is why we desperately need help through donations.  We need it because not only do we need help to pay for this current problem, but we need it to pay for my other medical expenses… especially that radical medical coma in Mexico before anything else happens or worsens.

So we are all freaking out in the meantime of what is happening because we don’t know what is going on.  All we know right now is that I need surgery immediately and my life is at stake, yet the hospitals around here are not really “equipped” to do the surgery because of my situation.  So I don’t’ know what is going to happen.  I guess we will find out tomorrow because the doctor is having that meeting with us after he discusses everything with other colleagues in the hospital.  This is a disaster.

So this is the newest thing to occur.  Of course I will let you know more when more info becomes available.  I just wanted to make you aware of what is happening in case something should happen or if I end up in the hospital or something because anything can happen at any moment.

In the meantime, I am scheduled for another ketamine coma/infusion for  Wednesday.  However, with everything happening now with my GI tract, I don’t know what is going to actually be taking place until the doctor speaks with us tomorrow.  Before all this was known about the colon and blockage, the plan was to go for the ketamine coma/infusion and it was hoped that I would be given medication through IV that would essentially raise my bloods hopefully.  In order to raise my bloods, the meds have to be given through an IV and it would be extremely painful to a regular and normal person …  let alone someone as hypersensitive as me.  So since it would be so much worse for me and I wouldn’t be able to tolerate it, they were hoping that I would be able to get it during the ketamine infusion so I wouldn’t be conscious and I wouldn’t feel it.  After all, something has to be done to raise my bloods because they are so critical as of now that I can literally die from cardiac arrest at any moment.

I want to also thank Jaime Shorten for starting a fundraiser that will hopefully raise money so that I can have it for my medical treatment and so I can hopefully be able to go to Mexico in July for the lifesaving Ketamine Coma that I desperately need.  Jaime is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online.  All orders can be placed online and shipped to Jaime for pick up or directly shipped to you. The website is SAFE and SECURE and your credit card will not be charged until the show is finalized and all the orders are submitted together, which will be May 5th, 2014.  If you have any friends whom you think would enjoy this event, please invite them to this party as well!! The more, the merrier! In addition, each day pictures of products and recipes for you to enjoy will be posted! Here is how to order… just click this link: http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467.  If you have any questions, all of Jaime’s info can be found on that website as well. Please share this site on Facebook at: https://www.facebook.com/events/387964561341529/   Once you join this party…PLEASE invite ALL of your Facebook friends and have them join!! We want this party to be HUGE so we can raise as much money as possible!   Remember… the Facebook link is “Hope for Fallon” or https://www.facebook.com/events/387964561341529/.

Thanks again for all your continued support.

Love,

Fallon

 

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April 19, 2014

Hi-

I know that I just finished writing an update, but of course there is more to say! I hope you don’t mind another update already, but I want to share the newest info that I have.

First if all, I received by bloods back today.  I had to have them drawn again today because of how horrendous and critical they were last time, as the values that regulate my heart were not good and were in the critical range.  In fact, it was at the point that my heart could literally suffer an arrhythmia or cardiac arrest at any moment.  I also needed to have my bloods done so that I can have the CT performed on Monday that I need to further diagnose what is happening with my legs and why and my left leg especially is having severe edema, discoloration, and burning.

Well, I received my bloods back and it so happened that my bloods dropped even more.  I can’t believe how low they are.  This is really a matter of life and death at this point because to have the values that I have, it is extremely critical.  The doctors don’t even know how my heart is continuing to beat without going into an arrhythmia or cardiac arrest.  I never had blood readings that read so low.

I should really be in the hospital.  I desperately need to be helped and stabilized.  However, there is no hospital in the local area that can really help me because my bloods dropping is due to an underlying problem such as my autonomic dysfunction, neurological condition, and severe gastroparesis.  Therefore, I really need to get to a hospital in California or someplace that can better know how to handle my condition. The best place of course would be to go to Mexico and to have that Ketamine Coma already so that I can be hopefully “cured,” but as I stated in past blogs, we don’t have the funds right and it isn’t going to happen if we don’t have the money.  So in the meantime, I am basically on a “waiting” game and hoping that I will be able to raise enough money and hold out before I expire.  I am like a ticking time bomb waiting to detonate and I can’t receive the needed treatment that will save my life and stop the detonation because I don’t have the funds to do so.

So since I obviously can’t get to the ideal place right now, which is Mexico, I have to make do with what I can do, which is go someplace within the United States that at least can help me.  However, there isn’t any local hospitals that can really help me and therefore, we really need to get to California so that they can help my Gastroparesis.  They are definitely not Mexico, but they are the next best thing and they are definitely better than going to a hospital around here because no one knows anything about my condition around here. However, California of course isn’t around the corner either nor is it cheap.  So I still have the problem of having to pay for it and also that I have to travel across the country.

I can’t go to  a hospital in the local area even though it is thought that they might be at the very least able to “stabilize” me.  Going to a hospital here would not be such a good idea because since they don’t really know how to treat my underlying condition and such, they can easily worsen my overall condition. My disease spreads like a wildflower and easily spreads through trauma.  Since I will definitely need special medication through IVs because in order to stabilize me it isn’t a matter of just giving a pill or a simple shot, but I will need a very potent solution to help bring up my bloods that even the normal person would find uncomfortable and painful.  The stuff that I need to bring up my blood values will literally burn up my veins like crazy and it will cause me great distress.  That is why I would definitely need ketamine while I had this done.  Ketamine would not only help me deal with the pain, but it also carries with it a special property that hopefully ‘contains’ the illness and stops it from spreading or slows it down at the very least.  Yet, no hospital in the local area really knows how to administer ketamine in this way around the clock. It is reality complicated and goes far more into this than I am going.  But to put it shortly… I really can’t go to a hospital here because they are not equipped to handle my condition and they will only make me worse.

So I don’t know what we are going to do.  I am deathly scared because I know that my heart can literally “give” at a moments notice.  They tried to raise my heart meds, so we are hoping that it will help.  Of course it doesn’t help when some of the meds that I take to raise my bloods are in the ice pops that I eat and since I have been having more trouble than ever trying to eat them, I haven’t really been able to take all the necessary medication that I need to keep my bloods up or even bring them up. That is just one more reason why I need to go to California.

I need to get to California or to Mexico so that they can work on my GI tract so that I can eat or something.  They really need to work on my severe Gastroparesis because since my entire GI tract is shut down, I cannot eat or drink basically anything. Even the littlest things that I have been living on such as egg whites and ice pops (which have the medications in them for my bloods), and ice-cream are getting impossible to get down.  So since I can’t get the ice pops down, I can’t get the medications to bring up my bloods down.  In addition, due to the severe Gastroparesis, I can’t even absorb my medications that I take in pill form.  So it just isn’t a matter of just that I can’t ‘eat or drink.’

I don’t know what is going to happen now.  I am crossing my fingers that there will be an answer to all this.  I know that I desperately need to go to Mexico or at the very least to California, but I also know that we need money in order to do that.  I am really hoping that we receive donations and help from others because I am literally on the verge of dying.  I can literally die at any moment from an arrhythmia or even cardiac arrest.

So I am crossing my fingers that nothing will happen and I will make it at the very least to my scheduled appointment in May to California.  We are scheduled to leave on May 13th to go to California and then we are hoping to go to Mexico in July for the radical Ketamine Coma.  But like I said previously, it is all dependent upon funds and therefore, I really need help from others.

In the meantime, I have been trying to raise money and awareness for my condition.  I have been working with a production team that is working on producing a movie that is supposed to be coming out in the next year or so.  I was very fortunate to have them select me to do an interview in their video.  It is a Scott Goldberg Film called “Moirai.”  In addition, they have been so willing to help me in any way possible in trying to find ways of getting me to Mexico as well.  Below are some pictures of the pictures that were taken from day we did the shooting.  They are making a video as well, and I will post the video as soon as it becomes available.  I am so thankful to all who made that video and pictures possible, and I am so honored that they decided to have me do an interview for movie.

1926088_734391463257869_233036645468973271_o 10271405_734391446591204_5814577351882761316_o 10006089_734391449924537_6869999768244699112_o 1396897_734391373257878_5222490452175881487_o 10265352_734391673257848_4245886497775819087_o 1397391_734391629924519_526438248691385262_o 1015459_734391553257860_6493483018506377201_o 885821_734391546591194_3259202476334908957_o

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Showing a video of a fellow patient who underwent the identical Ketamine Coma I need in Mexico.

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Showing a video of a fellow patient who underwent the Ketamine Coma that I need

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My Meds

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This box of meds costs over $1000.

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One of my ONLY friends I have left!

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My partner and crime who stays by my side!

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Some of the breathing equipment!

The race has been long and I hope the finish line is coming soon.  I don’t know how many hurdles I can keep jumping over and making it through.  I really need to get help and help soon.   I can’t tell you how much all the support and encouragement that people has given to me means to me.  It is this support and encouragement that keeps me going and helps me get over all those hurdles in the road.

Well… I just wanted to update you on the latest.  Monday morning I have the CT scan first thing in the morning so perhaps we might have more answers as to what is happening with me. We really are wondering what it could be because it could be related to my neurological condition such as my Reflex Sympathetic Dystrophy and autonomic dysfunction, my heart failure, my proteins spilling out because of my Gastroparesis, a blood clot such as deep vein thrombosis, or a combination of them.  So fingers crossed!

Remember… I really need help! To help, donations are accepted at http://www.gofundme.com/FallonMirsky.  Please spread the word!

Until Next time.  Happy Passover and Happy Easter to all!!

Love,

Fallon

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April 18, 2014

1507238_10101111511494040_2396637511284513151_oHi!

Well… Not a good night so I figured that I would update you on all that is going on because so much has happened lately and I also figured perhaps it might help pass the time and keep my mind off this excruciating pain.  I have tried so much medication to try to relieve the pain tonight, but nothing has worked.  The pain has gotten so bad that I am literally taking all the medications that I possibly can and nothing is working. The doctors have even raised my medications to try to relieve some of the pain and yet, nothing is working.

The pain is the worst pain that you can imagine.  I never had pain that was as bad as this.  As much as I thought the pain couldn’t have gotten any worse before, believe me… it somehow has managed. I can’t believe how bad it has gotten.  I really don’t know how much more of this I can tolerate especially when I don’t even get a second to take a breath from it.  I like how when I go to the doctor and they ask me “does anything make it better?” and “does anything make it worse?”  What an easy question for that to answer.  Everything in the world… and I mean EVERYTHING makes it worse! There is nothing in the world… not even the simples thing such as resting, taking meds, or raising my legs that will make it better.  I just wish there was this one thing that would give me even the briefest relief.  I am literally climbing the walls!

The doctors have been trying to work with me the best that they can because they know how badly that I am suffering.  However, they have really exhausted all their capabilities and they can’t really draw blood out of a stone. You know?  They have really given me all the medications that exist in the world, and I am even taking medications that aren’t even FDA- approved and I have to get overseas and such… which are not cheap may I add because they are not covered by insurance.  Yet, we are so desperate that we are willing to do anything.  That is why we are willing to go to Mexico.  Mexico Is the only place that holds the “cure” to my illness, as I need a dose of Ketamine that is not FDA-approved within the United States.  Even though I do undergo ketamine infusions/comas in the United States, it is nothing compared to the radical coma that I need in Mexico. In Mexico, I will be the 38th patient to undergo this Coma in the world.  Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries like Mexico. 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.

I desperately need to get to Mexico and get to Mexico fast because I am deteriorating extremely rapidly.  I am also suffering immensely.  However, the cost of this treatment that will save my life will cost me over $100,000 and of course we cannot afford it ourselves.  That is why we desperately need your help and the help of others.  Without the necessary funds, I cannot get the lifesaving help that I need and I am forced to only suffer further, deteriorate further, and as a result, I will die.  The doctors say that I am a “ticking time bomb that’s basically ready to detonate.” I really need help and help NOW.

In the meantime though, the doctors are trying to help me cope and make it through this.  They have raised all my medications as much as they can.  They have recently raised my ketamine medication to 300 mg.  I take so much medication that it can literally kill a horse.  It is amazing how much medication that I take because people that are like 300 lbs. would never be able to survive this amount whereas I am only weighing in the 60s and I am on such a heavy dose of meds that include Ketamine, Methadone, Dilaudid, Morphine, etc.  My house looks like a pharmacy with all the medications that I take, as I take over 50 pills daily.

I just had an emergency appointment at the hospital because my legs look worse than ever and they are not only killing and freaking me out, but they are freaking my dad out as well. You know things are bad when my dad looks at my legs and even he says that they are the “worse” they have ever looked and that the legs are even “freaking” him out.   My legs especially are swelling up with pitted edema, my body is on fire, I am changing colors like crazy, I am aspirating, etc.

We didn’t know what to make of it such as if it was because of illness, if it was because of my heart failing, a blood clot, etc. So I called my vascular surgeon and he wanted to see me at the hospital immediately.  After all, it could be extremely life-threatening especially if it was attributed to my heart failing or even a blood clot such as being Deep Vein Thrombosis.  So the doctor literally met us first thing this morning to see what was happening.

Dad and I of course went to the hospital today to meet the doctor and we didn’t get such great news.  Then again… when do we?  The doctor knows something is definitely wrong and therefore is sending me for a CT scan on Monday because that is the first appointment that they had.  However, he told me that if anything should worsen or if I should feel worse in the upcoming days then that I should go to the ER immediately. He told me that even though he knows that I am a martyr and I don’t really run to the doctor/hospital for things, he told me that even if I feel even a tad bit worse that I should come in or call him because we don’t know yet for sure exactly what is going on and it can be a matter of life and death.   He told me that if I went to the ER that I wouldn’t have to wait, as I should just tell them that I was a patient of his.  He also told me that I should call his office if anything was of question, and they would have him “paged” even though he usually doesn’t receive them especially on the weekends. It was extremely hard to examine me and to find out exactly what was wrong because of my overall illness.  With my Reflex Sympathetic Dystrophy and Autonomic Dysfunction, it is so severe that things don’t present themselves like they should.  In addition, I am so hypersensitive that I can barely be touched so it made it extremely difficult for them to touch me to examine me and such.

The doctors also noticed that they couldn’t feel my pulses.  That was not a good sign at all either.  They are extremely worried that my heart is further deteriorating and failing.  The doctors could not get a blood pressure reading at all. My blood pressure is usually very low, as it is usually 80/60 but today they couldn’t even get a reading at all.  In addition, when the doctors went to feel my pulses in my wrist and ankles, they were barely able to be felt.  I have been feeling so weak lately and therefore, it is kinda no surprise that my pulses were not so strong.

The doctor is also worried that my proteins are spilling out and that is why I am suffering from severe edema. Low protein levels in the blood caused by malnutrition, kidney and liver disease can cause edema. The proteins help to hold salt and water inside the blood vessels so fluid does not leak out into the tissues. If a blood protein, called albumin, gets too low, fluid is retained and edema occurs, especially in the feet, ankles and lower legs.  They think it is due to the severe Gastroparesis that I have and because my entire GI tract is shutting down.

That is why I desperately need to get to Mexico.  With everything happening between my proteins spilling out because of my failed GI tract to the edema to the pain in my legs to the severe autonomic dysfunction to my neurological condition worsening to everything else… I really need to get to Mexico ASAP.  So… I am really hoping that there will be a way to somehow get there.  I am really running out of options, as I have exhausted almost everything that I can think of how to raise the needed funds.  Without the money, of course there is no way that we can go and of course we cannot afford it by ourselves.  That is why I am pleading and begging for help.  I am so scared because I know that my life literally rests in the hands of the rest of the world.  I am hoping and hoping that I will be able to get the necessary donations so that I can receive the necessary lifesaving treatment, but unfortunately it hasn’t been happening.  I have gotten a few donations that I am extremely appreciative for and thankful, but it is far from what is needed. My medical treatment is so expensive and from paying for it for years, we can no longer due so.  It has gotten to the point that we can’t pay for my medication, appointments, the mortgage, utilities, or even to put food on the table.  Even the holidays such as Christmas, Chanukah, Passover, etc., which should have been “happy and celebrative” times have become nonexistent because we cannot afford them anymore. Yet, every dollar does make a difference and the donations that I have received (even the smallest of them) has really made a drastic impact because it has helped with even the simplest things… even if it was to just help pay for a doctor’s appointment or medication.

 

We are busy making plans for Mexico.  Even though we are planning on going to Mexico in July, we really  We really need to do something about my severe Gastroparesis in the meantime because my weight is dwindling and I can’t eat anything.  The littlest things that I was able to eat before such as the egg whites and ice-cream are now even getting too much to bear.  My GI tract is just completely shutting down and we already know that I am in need of a multi visceral transplant, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver. We can never catch a break.  We are supposed to be leaving May 13th, and I just hope that we have the funds available because I desperately need to go.  It’s a shame that there isn’t anyone local that can help me and all my “great” doctors and treatments are across the nation such as in Mexico and in California.  Not only does it cost us more because we have to travel, but it also takes a toll on my body because the traveling definitely isn’t easy on me.

Well… I guess that is about it.  I have bloods in a few hours because they are not only needed for the upcoming CT scan on Monday, which I am having to further diagnose what is happening in my legs and to find out exactly why they are swollen, on fire, etc., but to also recheck my bloods because my bloods came back last time extremely horrendous.  I am really nervous because they came back last time so critically low that if they drop anymore… I am extremely fearful that I am going to have no choice but to end up in the hospital.  So we will see.

I have been trying to keep my spirits alive and trying to keep myself going as much as possible even though it has been hard. I try to still keep myself as “normal” as possible so to try to get past all this horrible stuff that is happening and to take my mind off of it as well.  I have been busy snapping pictures of my pets, which have become my best and only friends because not only are they there to comfort me and ‘babysit’ me throughout the day and night, but I really don’t have a social life anymore.  You really learn who your true friends/family are when you get sick.

1658500_10101088840382130_1151687055_oSpeaking of my pets… I can’t believe that my cat’s birthday is coming up next week.  She is going to be 9.  She is basically my life and if I didn’t have her… I would be at a loss.  When we first brought her home, I made my mom bring her back as soon as we brought her into the house because she fell down the stairs and I got nervous.  I thought I was not deserving of her and was not going to be a good “mom” to her.  Yet, no sooner did my mom bring her back, but my mom realized how much I loved the cat and wanted it and therefore, she ended up going back to the vet to pick the cat up again. However, Missy will never let us forget about how when she was back on the way home that she caused my mom to hit the car into the house because she was an inquisitive cat that kept poking her head out of the box.  My mom was so afraid of her getting out of the box, as she kept poking out, that when she got into the driveway my mom ended up hitting right into the house!  Can you believe that?  But all and all… I am so glad that Missy is here because she has been nothing but a treasure to have.  She is the best gift I could have ever had because she takes such good care of me.  She constantly stays with me and we spend countless nights awake together.  Not only does she always make sure that I am OK, but she loves to go on the computer with me.  Not only does she watch me and she is like my babysitter, but she does the same thing with my turtle.  My turtle and her are the best of friends as they always stay together then I take my George (my turtle) out and she stays on his cage when he is inside.

I have been trying to keep my spirits alive and trying to keep myself going as much as possible even though it has been hard. I try to still keep myself as “normal” as possible so to try to get past all this horrible stuff that is happening and to take my mind off of it as well.  I have been busy snapping pictures of my pets, which have become my best and only friends because not only are they there to comfort me and ‘babysit’ me throughout the day and night, but I really don’t have a social life anymore.  You really learn who your true friends/family are when you get sick.  I also been watching some TV and getting into the “old timer” shows.  I have been enjoying shows that were existent before my time like WONDERWOMAN, the original BATMAN, GILLIGAN ISLAND, etc. I also have been trying to do some reading, which is extremely difficult for me, as it is very hard for me to retain what I am reading.  It really bothers me that I am having this problem because I used to have the best memory, as I had photographic memory.  But I am determined to finish another book like I did last time.  So I am reading James Patterson’s book called FIRST LOVE.

I have also been doing a lot of dreaming lately and wondering what it would be like to get “well!”  I keep picturing my life when I am all better and planning all the wonderful things that I am going to be doing.  I plan on resuming my studies and becoming that doctor, having a family with kids, having a social life, etc.  I also plan on traveling, as my family hasn’t been on a vacation in over 10 years.  I also have been planning on going shopping because I haven’t really enjoyed that in a while and of course when I get better I am going to need to go for a huge shopping spree, as I am going to have no clothes to wear because I am going to be so much fatter and I will of course need shoes since I will be able to finally be able to wear 2 shoes.  Due to my illness, I am a mere skeleton and the clothes that I have now will no way fit me when I am better.  I also cannot wear a sock or shoe on my left foot because of the illness because I am in so much pain and I am too hypersensitive.  So… I really can’t wait to be able to go shoe shopping because all I have been able to really wear is one shoe and it had to be something simple as a sneaker since you are really limited what you can wear since I needed to use crutches and you can’t use crutches on heals or anything of that sought.  What girl likes just wearing sneakers? LOL!!

I also have been picturing my life going out to eat and even being able to eat.  It is amazing how much this disease has taken from me.  People don’t really realize that when you have your health, you really have everything.

Well…I guess I will write again when I have more info.  Thanks again for all your support and encouragement.  I can’t tell you how much I appreciate it.  I definitely would not have made it this far and long without it.

Love,

Fallon

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April 15, 2014

1614121_10101110500759560_1428136961348406310_oHi-

I just wanted to update on the latest that is happening. The call came in today that the doctor in California wants to see me on May 13th! This is amazing news because this doctor literally had no appointments for months. However, due to my circumstances and how badly I am doing, he made special arrangements and made a special opening for me.

There are not many specialists that are knowledgeable about my condition in the world… let alone in the United States. However, there was this one doctor in California at the Cedar-Sinai Hospital that is supposed to be very knowledgeable in dismotility and in severe gastroparesis. As I am suffering from severe autonomic dysfunction and severe Gastroparesis, I need help desperately because I can’t eat and my entire GI system is completely “dead!” I only weigh in the 60s and have a BMI that is less than 10.8, which is unheard of. I suffer from more specifically from Intestinal pseudo-obstruction (a form of Gastroparesis), which is a rare condition with symptoms that resemble those caused by a blockage, or obstruction, of the intestines, also called the bowel. However, there is actually no blockage that really exists. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines. It is a result of my severe autonomic dysfunction and severe reflex sympathetic dystrophy. These illness cause problems with nerves, muscles, and/or interstitial cells of Cajal. Interstitial cells of Cajal are called “pacemaker” cells because they set the pace of intestinal contractions. These cells convey messages from nerves to muscles, and problems with nerves, muscles, or interstitial cells of Cajal prevent normal contractions of the intestines and cause problems with the movement of food, fluid, and air through the intestines.

This condition is very serious and very uncomfortable. It causes abdominal swelling or bloating, abdominal pain, nausea, vomiting, and constipation. There are so many times that I walk around feeling and looking like I am pregnant. I also feel so full of air at times that I wish that someone would take a pin and pop me like a balloon. Over time, the condition can cause malnutrition, bacterial overgrowth in the intestines, and weight loss. Malnutrition is extremely serious because the body is not getting the right amount of the vitamins, minerals, and other nutrients needed to maintain healthy tissues and organ function. That is why all my organs are failing ad why I am also having problems with my esophagus, stomach, bladder, etc.

We have been searching everywhere for help, but unfortunately there isn’t really a lot known about my illness nor are there a lot of specialists that are able to help me. I have had various types of treatment to try to combat this problem such as Nasogastric tubes, NJ tubes, TPN, enteral nutrition, parental nutrition, etc. but nothing has been successful. Not only do they not work, but they literally cause havoc in my body and cause other problems such as burning up my veins and further causing more autonomic dysfunction, which is intolerable. We even tried all different kinds of medications and even get medications that are not FDA approved and are forced to pay out-of-pocket for them totally since we have to get them overseas. I also have to take daily injections to help with this problem.

Due to my condition, I cannot go to the bathroom at all. I constantly feel constipated and I am constantly expelling mucous. The doctors are very worried that whatever inside me is “rotting” because the medications and whatever little food is remaining in my body cannot get out. So it just stays in my body and rots and the doctors are extremely fearful that it is going to lead to one massive infection. I take numerous laxatives from everything from 6 colasces, 6 senokots, 8 ducolaxes, etc. daily along with injections, but nothing works. We have tried enemas and even enema bags, but those don’t even work either. I have even shocked doctors and nurses when they can literally give me an enema bag that is as big as a big IV big with 1000 mL of solution and I still don’t go. But my organs are just so paralyzed that nothing works.

I am so blocked up that we are even having problems finding out where the bleeding is coming from. We also know that I am bleeding from somewhere in my GI tract, but the doctors are unable to figure exactly where it is coming from or what exactly is occurring because they can’t “empty” me out enough to do a colonoscopy. The doctors have tried to put an NG tube in me to pour the mixture “Go-litely” in me to empty my intestines and bowel, but unfortunately after only pouring in ¼ of a liter, the NG tube started to back up and the mixture started to come back out of my nose. Therefore, the tube had to be removed. So we are still trying to figure out exactly what is going on. We also know that due to the air and all the distensions that are occurring in my intestines, it is putting extra pressure on my organs and causing them to fail as well. The doctors are also fearing that the colon has also twisted because of the pressure, which is extremely dangerous.

I have tried everything and yet, I am continuing to deteriorate. As a result, the doctors have been talking about performing a multivisceral transplant, which would include getting a transplant of the stomach, small and large intestine, pancreas, and liver. It is extremely radical and dangerous, as it is the most dangerous transplant that you can have. Only 6 hospitals in the United States currently do it. We are hoping that we can try to avoid it by going to Mexico and having the radical ketamine Coma, but unfortunately that will cost us $100,000 and we cannot afford it by ourselves. Without the funds of course that treatment is not going to happen and therefore, we have to no other choice but to look for other options. Of course the ketamine Coma though would be the best course of action though because not only would it help hopefully with avoiding the transplant and help with the Gastroparesis, but it will help with the Reflex Sympathetic Dystrophy and severe Autonomic Dysfunction as well. In addition, I am on a whole array of drugs that are extremely potent and are enough to kill a horse. The doctors can’t believe honestly that someone my size can withstand all these drugs because a person that is 300 pounds would never be able to tolerate it. Yet, I am in so much pain and discomfort that I need them in order to someone function and make it through a day! I am on everything from ketamine to morphine, dilaudid, nucynta, methadone, etc. The goal of the Ketamine Coma in Mexico is not only to “cure” me of my illnesses, but to also take me off these medications as well because there is no way that I will be able to come off of them without being in the coma because I will go into severe withdrawal and have seizures and possibly die.

But right now I am seriously deteriorating and something needs to be done immediately or I am going to die. I can’t wait around much longer and do nothing while I wait for the funds for the ketamine Coma. Therefore, I need to take care of my GI tract because I am unable to eat or drink anything. I am only weighing in the 60s and any weight lost… even a single pound… is extremely critical. I can barely eat anything and even the littlest things that I have been surviving on such as the egg whites, ice cream, and ices are getting to be intolerable to get down anymore. We are really running out of options.

I really need help immediately. After speaking to this doctor in California, he had no appointments for a couple of months. I just love how when you are sick that there are always such long waiting lists to see a doctor. The doctor told me though that he would look over my records and see if he could see me sooner.

Well… I got the call today that sure enough he can. In fact, he can see me as soon as May 13th. The doctor wants to see me as soon as possible because he said that I am “not going to make it much longer.” He said that I am extremely ill and a time bomb that is going to detonate soon. So… it looks like we are heading to California on May 13th, as long as we have the funds to do so.

I desperately need to get to California but unfortunately; we can’t afford it by ourselves. It really hurts me to have to BEG for help because I was never like that. I was always on the other side… helping others. I would help others in any way that was needed. I always put others before myself. But now… the tables have turned and I am basically on all fours begging and pleading that someone will please help me because I am literally hanging on by a thread. It kills me that I have to plead and beg like this for help, but I am just so desperate. I hope you and others don’t mind that I am doing so… but I just don’t know what else to do. I don’t want to die. The only way I will be able to get to California for this much-needed appointment is if we have the funds. However, we can’t do it alone and therefore, I am hoping that you can help me raise the money so that I can get to California. Please spread word that help is needed along with my website. If you have any ideas on how to raise money or fundraise for this… I would really appreciate it and you can message me at Femirsky@gmail.com.

10005913_10101110503803460_5617197852134228736_oI am really excited to go to California because I know how desperately I need to go. There is nothing here for me in terms of doctors or treatments and I know that I really have no other choice but to go across the country to California. The only thing that I hate is that I have to travel all the way across the country because it will really take a toll on my frail and fragile body. I really don’t know how I am going to manage the trip because I honestly am getting too weak and sick to travel. It is getting to the point that I can barely get off the couch nowadays. I don’t know how I am going to withstand a trip across the country. Thank goodness I will have my dad traveling with me because he is my best friend and my superhero. He won’t let anything happen to me. But I know that this traveling will NOT be easy on me at all. I only wish that we wouldn’t have to stopover on the planes and travel the entire day because it takes a huge toll on me, but we all know those flights are the cheapest and we need to save as much money as we can. I just hope that this trip doesn’t kill me.

I have recently been blessed with 3 angels in my life. They are doing a movie that will be released hopefully in the next year or so and they not only asked me to do a part in their movie, but they also did a promotion for my fundraising site. They also are looking for ways to further fundraise money so that I can hopefully receive the much-needed lifesaving medical treatment that I desperately need. They are doing whatever they can in order to facilitate this, which includes contacting the media such as Channel 12, Fox, etc. I am only hoping that this will work out because I desperately need help and in this world it isn’t WHAT you know, it’s WHO you know and unfortunately I don’t know anyone. So despite how many times I have tried to contact them, I have not been successful because I have no connections whatsoever. More importantly, these 3 angels have entered my life and have become 3 friends that I have not had before and will hopefully stand beside me until the very end. They are also thinking seriously about coming with me to Mexico and filming the entire Ketamine Coma so that others can see exactly what is taking place since this treatment is extremely radical and rare… and not given within the United States. In fact, I will be the 38th person in the world to undergo this Ketamine Coma.

In addition, I really want to thank all the people who have contributed to making the charms and bracelets for me out of the rainbow loom. I can’t tell you how much it has meant to me. When I went on the computer today and saw that the moms from Massapequa had all those charms and everything… I couldn’t believe it. I really don’t know how I can thank you enough. I immediately showed my parents and I want you to know that they too are extremely grateful. They said, “For once they have seen a smile on my face that they haven’t seen in a very LONG time.”

I have lost everything in my life and to be quite honest with you… it is hard to smile anymore. There are so many times I wish I don’t wake up in the morning because I can’t take living this life anymore. However, I just want you to know that these bracelets and charms have brought “hope” and a smile finally back to my face. I am still hoping and praying in miracles. That is why I am trying to collect 1,000 rainbow loom charms and/or bracelets. I am doing so because I am doing it in the spirit of Sadako and the Thousand Paper Cranes. Even though they aren’t the paper cranes, I am still hoping that a miracle will take place when I get to 1000. I have had the worst luck and I am hoping that a miracle will occur with all of these bracelets and charms… just like a miracle was supposed to occur with the paper cranes. Maybe my miracle is on its way. I do find it awfully weird that the same exact day that these looms were told that they were on their way that I got the good news that the doctor in California wants to see me ASAP.

I haven’t received a gift (not even a holiday or birthday gift) in the longest time… so I can’t tell you how much receiving a gift like these charms means. In addition, when I am in the hospital… it is such a scary and lonely place and when I look at all the charms… I feel so loved and special. I really feel like I have support with these charms and bracelets and that I am not ALONE in this battle. If it wasn’t for the support of others… I don’t think I would have made it even this far.

On a better note, I have recently joined TWITTER. I finally woke up and joined Twitter, but have no idea what on earth that I am doing. All these symbols like “@, #, etc.”… I have no clue what they mean. I guess I am going to have to learn. All I know is that my name is @FallonMirsky and if you follow me it will be some interesting journey. I guess I finally came out of the dinosaur age!

1507238_10101111511494040_2396637511284513151_oTo try to make me feel better, I recently tried putting on some new makeup. I have a way of thinking that if you “look good” you “feel” good. So I tried to make myself look as good as possible lately to see if I could possibly be stronger and everything. I have always been an avid makeup person. That is why when people see me they don’t realize how much I truly am suffering because I conceal it so much. I don’t cry in public nor do I walk around like I am “sick!” I try to look as normal as possible and try to look my best. After all… even though I am sick… I still want to be beautiful (even though it is getting harder and harder). But I must say that I did get this new makeup that really is working wonders!!

Thanks again for all your continued support. I really can’t thank you enough. Until next time!!

Love,

Fallon

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April 12, 2014

1402456_10101107294814300_2042769779852293772_oHey-

How are you? Just wanted to say HI and update you on all that has been happening!!

As I previously written, I am not doing well at all. I knew something was wrong because of the way that I have been feeling. I have been having more difficulty than ever in just even getting off the couch and being mobile, and that is why it has come to the time that I need to get a wheelchair/motor scooter. Unfortunately I am getting too sick and weak to be walking around on my crutches. To think… I was so amazing on them too, as I could outrun anyone on them and carry items with them as well. If there was an Olympic track and field event that dealt with using crutches, you can bet your dollar that I would have won GOLD!

But it has gotten to the point that I am too weak and sick now to even keep going on the crutches. I never wanted to think that I would end up in a wheelchair or have a motor scooter. I always tried fighting it no matter what because I knew that if I gave in (even one time), it would be too easy to give in the next. But it has gotten to the point where I am just too tired to keep going anymore. My body has had enough.

I knew something has been happening lately in my body. Something wasn’t feeling right. I have been feeling weaker than usual and in more pain than usual. I am bleeding more and even having a more difficult time going to the bathroom. I have been getting worst killer stomach pains in the world that I feel like I am going to die. I also have been getting severe edema in my legs. My legs are so swollen that you can’t even see the anklebones anymore. I am also having an extremely hard time to breathing and my heart is feeling weak.

Well it just proves when I say that something is “wrong” with me… I definitely know what I am talking about because when I went for my bloods today I learned that my bloods have dropped. As bad as my bloods have been lately, they have dropped even more. I am really nervous because I know how easily my heart can stop and go into cardiac arrest at this level. It is so easy to have an arrhythmia or something. I really belong in a hospital, but unfortunately we don’t have the funds to go to a hospital. We can’t just go to a “local” hospital either because they don’t know how to treat me. I need to go to a hospital that knows my condition because it isn’t just a matter of giving me IV or a transfusion or something else. There is an underlying cause that is causing my bloods to drop and until it is corrected… I am going to be having this problem.

Therefore, it is imperative that I get the help that is needed, but that can only be done in certain hospitals, which are not located in the area. I really need to get to California or Mayo Clinic, which of course is not around the corner and of course will be expensive. Of course best answer would be to go to Mexico, but that is even further and even more expensive. Since we can’t afford any of these places, I am kinda out of luck. I know some people might be saying to just go to “any” hospital and they can help me or at least stabilize me, but that isn’t the case. They really don’t know how to treat me and will only make things worse. In fact, the times I have gone to the hospital, they have even discharged me with knowing how bad things are and saying that they cannot treat me because I am beyond their scope of knowledge. So I am just holding on and hoping.

10010301_10101107294654620_4698892991727790636_oIt makes it even more difficult when I can’t really tolerate my heart meds anymore. I have special meds that are in ice pops in addition to the ones that I take by mouth in pill form. However, since I am having such a hard time eating and drinking, I am even having a hard time getting down even the simple things like ice pops. Therefore, the amount of ice pops that I should be taking in daily has diminished, which means less heart meds for me. We don’t know what to do because I just can’t tolerate the pops anymore.

In addition, my autonomic dysfunction has been completely out-of-control. I keep breaking into cold sweats. I also keep getting extremely overheated, but unfortunately I can’t sweat because I don’t have the ability to do so. It really stinks. I even get to the point where parts of my body are so overheated whereas other parts are so freezing cold. So I don’t know whether I am freezing or hot at times. Sometimes I think that the autonomic dysfunction is just as bad as the pain or even the worst part of this entire thing. The slightest thing such as an extra glass of water or a change in temperature because I can’t regulate my body temperature will set it off. When my autonomic dysfunction starts… my entire body goes into havoc as I start not to be able to breathe, I can’t tolerate clothing on me, I can’t tolerate anyone or anything touching me, I feel worse than ever, I get all prickly, etc. It really becomes a nightmare and there is nothing that I can do to stop it. Once it starts… it doesn’t stop and it lasts for such a long time!

Besides my illness contributing to this autonomic dysfunction, the weather isn’t helping either. I hate this time of year because of this problem. I mean… I love how it is starting to get warm out and the flowers are starting to bloom and the sun is shining and everything else, but in terms of my illness… it is wreaking havoc on me. I can’t enjoy opening the windows like normal people usually do during this time of year and enjoy having fresh air in the house. Instead, I have to have the windows closed at all times because I can’t tolerate the texture of the air. Not only can’t I regulate the temperature, but also the air feels so “thick” and “dirty.” It really makes it horrible to breathe and it really makes me swell up and such. The air feels so heavy! I think it is because I am so hypersensitive that I can tolerate the very slight bit of humidity and therefore, I need to have the windows closed so to keep the humidity out of the house.

In addition, I can’t regulate body temperature and when the windows are open you can’t really regulate the temperature. We literally go from heat to a/c because I can only tolerate a temperature of 74-76 degrees. I am literally like a human weather station, as I can feel the slightest change in temperature. So at least when we have the a/c and heat on… it makes it so it constantly maintains that temperature. Maybe one day I’ll b able to enjoy a nice spring night with the windows open!

The doctors are running out of options. My doctors would love to put me on marijuana, but unrtunately it isn’t legal in New York. They did think about putting me on a drug that is like having Marijuana called MARINOL, but I haven’t really taken it as of yet because I just can’t manage naymrore pills. I already take over 50 pills daily and enough pills to kill a horse. In fact, the doctors are fascinated actually that I can tolerate all these pills because a person that is like 300 pounds wouldn’t be able to handle them. They think that my liver metabolizes the pills really fast and that is why. Anyway… I would take the Marinol if they knew it would help guaranteed, but it isn’t real Marijuana. MARINOL Capsules contain man-made dronabinol (THC). THC is the naturally occurring component of Cannabis sativa L. (marijuana).

In the meantime, I also heard about a new drug being released called Linzess. It works by increasing the movement of contents through the GI tract and by blocking pain signals in the intestines. In studies, patients taking linaclotide experienced improvement in multiple symptoms including pain or discomfort, bloating, and bowel function. My GI doctor is on vacation this upcoming week, but I have the very first appointment with him on Monday morning at 6:30 AM when he gets back… so I am definitely going to ask him about it. After all… it can’t hurt. I’ve tried everything else out there already anyway.

I have just been getting worse and suffering more than ever. We were supposed to be leaving for Mexico to receive the lifesaving Coma that I desperately need in May. However, despite all the hoping and trying to raise money that I have been doing, it has not been enough and as a result, it as caused us to force us to cancel our trip and postpone it to a later date. We are now looking at going in July, but the doctors are really fearful that I won’t make it that long. I am only hoping that I will be able to make it the extra two months and it will be enough time to raise the money because this treatment is extremely expensive and something that we cannot afford by ourselves. Unfortunately it will cost us $100,000 at least and it is something that I desperately need because without it I will die and die soon! So if you can please pass the word that HELP is needed or can think of any way to raise money, please let me know.

10257833_10101107294260410_5351154217603758570_oIn the meantime, I have been going for my ketamine treatments here in New York. Of course they are no way as potent and helpful as the one that I will be given in Mexico, but it is definitely something I look forward to because it is the only time I get to “escape” this Hell. When I go for this Ketamine treatment, I finally get to be spared the pain and agony of this disease, which I suffer from 24/7 from. If I can live in a ketamine coma/infusion forever until I get to Mexico… I probably would because I am so much in pain and I honestly cannot take it any longer.

However, I must say that we really had some complications the last time we went for the treatment. I guess the weaker my body is getting, the more complications that I am going to have. That is another reason that I need to get to Mexico as soon as possible because I need to be as strong as possible for it because I need to be able to come off the machines and lines that they will be putting me on. I am so weak already and the doctors are already scared that when they put my on complete bypass (I will be surviving completely on machines while I am in the coma in Mexico), I will weaken further and when it is time to extubate, they will have trouble getting me off the machines.

During my last ketamine treatment the machines kept alarming because of how low my heart rate, pulse, and oxygen were all getting. They think it is because I am getting so weak and my organs are shutting down. Therefore, I am not breathing and having the circulation as I should be having. My heart rate literally was in the 30s and my oxygen content was like reading 90.  If that wasn’t enough… to make matters worse…  we then came home to a letter from one of my doctors saying how worried they are about me and how I am going to “die” and “not make it much longer.” Can you imagine a doctor mailing you such a thing? Like we aren’t trying everything to get to Mexico to get well… it isn’t my fault money doesn’t grow on trees. If we had the money… we would be getting the treatment I need in a heartbeat!

10255737_10101106616533580_4376051054050006581_oEven though the trip to Mexico was changed to July, we also ended up scheduling another trip to California in June. We are going to see a doctor for my severe Gastroparesis since I cannot eat or drink and I am basically dwindling down to nothing. We are going to Cedars-Sinai Hospital. I always wanted to go to Los Angeles, so I am kinda really excited. Maybe I will see some famous people. I can hope, right? After all… it is Hollywood, right? I just hope that we have the money to go. We really need to go because they are talking about doing a multivisceral transplant on me, which entails getting a new stomach, small and large intestine, pancreas, and liver. There just is never a dull moment. There is always something going on.

I wanna get better so badly. I would do anything to get well already. I want to be normal in the worst way. I want to be like everyone else. I want to be able to “work out” and exercise. I want a career. I want to become a doctor so that I can help others so that they don’t have to end up like me. I want to be able to have a social life. I want to be able to have FUN. I want to be able to have a friends, a social life, as well as a family with a husband and kids. There are so much that I want, as I was robbed of everything that you can imagine and forced to live a life that basically was isolated from everyone.

Sometime I feel like “Rapunzel.” Just like Rapunzel, we both got to live a life until we were locked away. We were also both beautiful when we were growing up, as we both had long golden hair. However, just when Rapunzel reached her twelfth year, the enchantress shuts her away in a tower in the middle of the woods, with neither stairs nor a door, and only one room and one window. When I reached my 12th year in school, I became in a similar situation, as I basically got locked in my house because of my illness. Then… we are both thrown into a situation to fend for ourselves and we need to depend on ourselves in order to stay alive. After Rapunzel gives away the “prince” to the enchantress, the enchantress in anger cuts off Rapunzel’s hair and casts her out into the wilderness to fend for herself. I am thrown into the fire of my illness because it has come down to the very issue of me being able to afford the treatment that I need in order to be able to survive and stay alive.

I only hope that I will have the same happiness at the end of my story as Rapunzel did. Rapunzel ended up living happily ever after despite all that she went through with her prince, as she found him wandering and then restoring his sight. He then leads her and their children to his kingdom, where they live happily ever after.

On a better note… I am having a director come to my home in the morning to get my story known. I am really excited to have this done because not only do I want my story known, but also I want to really make a difference in the world. The documentary is all about making people think and bring awareness. The hope is that people will stop focusing on drama and focus more on helping others, which is what the message is to be about with your interview/segment.

In addition, the director is thinking about coming with us to Mexico as well to capture the entire Coma and document it. It would make a really amazing video and I really hope that works out well so others can see exactly what it is like. Not only would I love to have his support with me down in Mexico while I undergo this lifesaving procedure that very few people have undergone, but I would love for others to know exactly what I went through and what all their donations have contributed to and how this Coma was such a “Miracle” for me. It really is what is going to SAVE my life. That is why I need so much help in getting to Mexico!! Please help!

On that note… I guess I will be going. I am getting tired and weak and I am in too much pain to write more. Just want to remind you that bracelets are still available for $5. If interested, please inbox me at Femirsky@gmail.com. They come in pink or blue and say HELP FALLON FIGHT! All money goes towards helping to pay for my medical expenses.

Thanks again for all your support.

– Fallon

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April 3, 2014

1973441_10101076307198730_199068122_oHi!

I know it has been awhile since I last written, but to be honest… I haven’t been doing well. I have been doing even worse than usual (if that is possible) and it really is even taking a lot out of me to write tonight. Therefore, I really don’t know how much I am going to be able to write tonight or how coherent all this will be until I finish. So… let me warn you before you begin to read this to please be understanding and please be bare with me. My apologies in advance if some of the things are not coherent.

I really wanted to write tonight and let you know the very latest because I am not doing well. I have really taken a turn for the worst and I really need to get to Mexico more than ever now. I fear that if I don’t raise enough money to go to Mexico and get there… I am going to die. My body is really shutting down fast and suffering. However, even though we are scheduled to leave for Mexico in May, we don’t know if we are honestly going to be able to go because we are still far from our goal of the money that is needed to pay for the trip. We can’t pay for the trip by ourselves and despite all the help we have been asking for… we haven’t been able to raise enough to get me the very much needed lifesaving treatment. But, I am still hoping that it will happen even though we are still very far from the actual amount of money that is needed for the treatment since it will cost us over $100,000.

I am very fortunate and thankful for all the people who were kind enough to donate to me. However, without the full amount of money to pay for the treatment in Mexico, I am not going to be able to have it. Even though I have tried many different ways to raise money, it really wasn’t as successful as I really was hoping for. Therefore, we might have to put off the trip for awhile and postpone it until July. However, the doctors are saying that putting off the trip will be extremely dangerous and very detrimental to my health. They really don’t think I will make it until July and they are really hoping that I will still be able to find the funds so that we can continue as planned and continue to go down to Mexico for the lifesaving treatment in May. But, May is literally 1 month away and it basically will take a “miracle” for it to happen. So… if you can please do anything to help facilitate that miracle, I would really appreciate that. Please spread the word that I am in desperate need of medical treatment and without it… I am going to die. Please also say a prayer that I will also make it to July because that will be the next time available to have the Coma!

I really need this Coma more than ever and urgently too. I am really not doing well at all. In fact, it has gotten to the point that we need to actually get a wheelchair or a motor scooter for me. It has gotten to the point that I am too weak, too much in pain, and too sick to continue to walk with the crutches. For me to actually concede to a wheelchair or crutches… things have to be really bad because I always promised myself that I would never end up with one. In fact, that is another problem we are having, as even the wheelchair and motor scooter will cost nearly $1000 and we don’t even have the funds for that either.

I never wanted to go into a wheelchair or have a motor scooter. To me… I always knew that once I went and had one of those items, it really meant that the “end” was here and that was it. In fact, despite all the times I was offered a wheelchair or scooter to get around, I always turned down the offer even though it would have made my traveling easier. There were so many times when we were someplace where I really wanted to use a wheelchair or scooter because I was so tired and so much in pain. However, I never wanted to give in to this illness because I knew that if I gave it an “inch”… it would take a “foot.” I knew that if I gave in to it that time… it would be too easy to give in to it the next time. You know? So despite all the wanting it and how much it would have made it easier on me… I always turned it down.

I did whatever I could to manage to stay on crutches. In fact, I was amazing on crutches. I could carry items and even outrun anyone on crutches. So for me to say that I can’t use them really anymore and that I need a wheelchair or scooter… it really shows how “sick” that I am.

However… like I said before… we are having more problems because it is also an added expense to the mix that we obviously don’t have the funds for. They want about $1000 for it. I need to get a certain kind as well because of how small I am and my strength. So I am really hoping to raise money so that I can be “mobile” still because without the wheelchair or scooter… I don’t know how I am going to get around.

I have been in so weak, been in so much pain, and been suffering so much lately that I literally can’t even get off the couch. Using crutches takes too much energy and that is why I need the scooter. Even going to the bathroom is too exhaustive and taxing on my body. It has really gotten to the point that I basically sleep the day away and only up for a few hours to try to eat and that is it. My body is just shutting down and doesn’t have the energy to do anything else. I am so weak and have been sleeping so much that my dad constantly is checking on me (even all throughout the night) to make sure that I am still breathing because this is so unlike me.

With all the pain that I am in, the nights are the worst. By the time the nights come alone, I am in such severe pain that nothing gives me any relief. I literally max out on all meds lately especially at night because of all the pain that I am on. I take so much medicine that doctors say that the amount of medications that I take would kill a horse. They don’t even know how I am tolerating all the meds that I am on because there is no way that a person weighing over 300 pounds can take this amount. They said that my body is just metabolizing the drugs so very quick and that is one of the problems.

I really also need to get my GI tract checked out. The gastroparesis has also gotten really bad. Not only am I bleeding worse than ever, but the vomiting has worsened as well. I can’t tell you how many times we have to change my bedding or anything because of the vomiting/bleeding. Nothing is worse than when it is the middle of the night and you wake up with blood in the bed. It is horrible.

In addition, we I recently broke a rib. I have gotten so fragile that the littlest thing will cause me to break. My bones are so brittle because of my illness and I haven’t been able to get the very needed medication that I need to help strengthen my bones because of the severe osteonecrosis that I am suffering from. Since I have Osteonecrosis, the doctors are fearful of giving me the infusion that I usually get to strengthen my bones and therefore, my bones are deteriorating even further. I really needed that infusion too because my bones were still even deteriorating and really weak with the infusion. To think how much worse they would have been without it. So I know it is really bad because I haven’t had the infusion in awhile.

It shows how brittle and fragile I am because all my dad did was pick me up. He didn’t realize that his pen was in his pocket and as a result, he ended up breaking my rib when he picked me up because my rib pressed against the pen. To think that something as simple as this ended up breaking my rib. So… I am in so much pain because of this and I am in even more pain than an ordinary person because I am hypersensitive to everything. A simple needlestick is like someone driving a knife through me. So Everytime I breathe, I get the hugest pains you can imagine. Plus, since I am always vomiting… it isn’t helping the problem either.

I am not going to lie… I am so scared. I really don’t know what is happening. All I know is that something isn’t right and that I really need HELP and help badly. I am so thirsty and nothing quenches my thirst. It is getting extremely hard to breathe as well. Even taking breaths of air is so exhausting. I really feel my body deteriorating and shutting down. It is the weirdest feeling in the world… a feeling that only someone experiencing it can understand. I really just hope that if anything should happen that I go quickly and not painfully and that I go in my sleep. But I really hope that it doesn’t have to come down to that, as I am still praying that I get the lifesaving treatment that I need and will be able to live my life to the fullest. There is still so much in life that I haven’t done and so much that I want to do.

My dad hasn’t been doing well either lately and he is also freaking out.   He looks horrible, as he has aged so much in the last few weeks. He can barely walk, he is exhausted, extremely stressed out, etc. I guess I can’t blame him. He really wants me to get better. In fact, if something would happen to me, I don’t think my dad would ever get over it. It hurts him so much to know that I am suffering and that there is nothing that he can do. It hurts him so much that he can’t provide the money and what is needed for me to get well. He would do anything for me to be able to get to Mexico so that I can get the much needed treatment that could save my life. But, he knows that his hands are tied. He keeps reassuring me that we WILL get to Mexico, but sometimes I think he is just saying it because he is just trying to keep me going when deep down he knows it will never happen because we are never going to have the funds for May and I won’t make it until July. I am just afraid that he is going to have a heart attack with all the worrying, stress, and work that he has been doing. If something would happen to him, I would never forgive myself. He is not only my father, but also my very best friend!

1597818_10101095064114720_1301869948_oThank goodness that I have my animals. They have really been the only “good” things lately in my life. They have really been my only friends throughout this. I have felt so alone lately. You really learn who your true friends and family are when you are sick. By having this illness, I really had my social life end and I really just spend my life cooped up in a house… isolated from the world because it is so hard for me to get out because of how sick I am. Not only can’t I go out because of how I am feeling, but even the weather affects me, as I can’t tolerate the temperature, humidity, the wind, etc. Even the gentlest breeze against my skin will send the most excruciating pain throughout me.

I am not going to lie, but I really miss my social life. I really wish I had one again. I just wish that I was normal. Sometimes I wonder why I bother even having a phone. The only people that call my phone are the doctors. I would love for people to “text” me, but all my phone does is remain as gateway to talk to doctors and a place that keeps my appointments, which is filled all with doctor appointments rather than FUN social events. I just wish my life was different. I am 32 years old and my life has literally been taken away from me. I really want to experience life like everyone else has.   I know it sounds stupid but I even get upset and jealous of people “working” or “exercising”. I just want to be normal! I will do anything for that day for it to happen!

Well… I guess that is it for right now. I really just wanted to bring you up-to-date a bit on what is happening and also ask if you can please say a prayer for me because I really do need it more than ever. I am really worsening and really need to get to Mexico ASAP. Please say a prayer for me!! If you can think of any way possible to raise funds for Mexico or for my other medical expenses such as the motor scooter so that I can be mobile…. Please let me know. I am really desperate.   I really am a time bomb waiting to go off and it is going to detonate soon. I need help faster than ever now.

Thanks again for all your help. Again, please continue the prayers and please continue to spread word of my donation site at www.GoFundMe.com/FallonMirsky. Bracelets are still available and can be purchased by sending me a message at Femirsky@gmail.com. They are $5 and all expenses go towards my medical expenses. The “Help Fallon Fight” bracelets come in pink or blue.

With spring finally arriving and the flowers in bloom… I am hoping that the gray and gloomy skies will not only clear up outside, but it will also clear up in my life!! However, I know that isn’t going to be possible without the help of others. Please help!! I am desperate.

Love,

Fallon

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