FALLON MIRSKY

Please help SAVE MY LIFE!

January 30, 2015

10945592_10101432283599170_612540843065938222_nHi-

Well… I am writing tonight in a way to not only tell you what has been going on, but in an attempt to ask if you would be willing to help me raise as much money as possible because I received really horrible news tonight. I know this is a bit long this letter, but the latter half of the letter is basically all the brand new stuff you probably don’t know as well as new fundraising information.

To be honest, I don’t even know why I am writing because I have tried so many other attempts in raising funds, but unfortunately I have not been as successful as I would have liked. I really need to receive treatment was soon as possible because even though I knew that I was ‘sick’ and time was ‘ticking by,’ I never really realized how short and limited my time really is. After what happened today… I really feel like the door has been slammed in my face.

I feel horrible because not only am I suffering emotionally and physically with my illness, but also I am also now suffering with the issue of not knowing what to do. I never thought honestly that it would get this bad and I never thought that I would have to be literally on my hands and knees pleading to people for “help” because without their help I cannot continue to receive the lifesaving treatment that I so desperately need.

I was always a person who was the first to jump into the pool or take a dive into the pot to help another person out. If I knew there was a person suffering, I did all that I could to help alleviate their problems and help make them to become in a better situation. When people needed to raise money for medical treatment, I was there whether it was to sell pins to raise awareness or collect soda tabs so that they could receive dialysis. When people were suffering with no money and the holidays were upon us, I would always try to be like “Santa” to them and try to at least bring some holiday cheer into their lives. Even if there was a person on the street asking for money, I would even make a donation just so they could have some money to use. Yet, when I am now in trouble, I can’t find the same respect that I always gave others.

I am so thankful to all the people who have helped me along the way. But to be honest, I am so far from my goal. I know that people are tired of hearing my story and hate hearing me plead for my life, but what other choice do I have? I am 32 years old and have not been fortunate to live the life that others have been lucky to have. I have been robbed of all sense of a life and put into a “Hell” that I can’t escape, and all I want is my life back. I am going to be 33 years old and I still haven’t experienced life. There is so much that I want to do and have to do. I still haven’t left my mark in this world, which is something I desperately want to do before I die. I want the world to know that I was here and that I made a difference, but unfortunately, I haven’t been able to have that opportunity because I was cursed with this horrendous illness and despite all the trying to get better both through treatments and raising money to pay for the treatments, I haven’t been very successful.

You know it is really sad when your birthday is coming up and you don’t even know when it is. Birthdays are supposed to be ‘happy’ occasions and something to look forward to. Yet for me… my birthday is meaningless. I have no one to share it with! It is just going to be ‘another’ painful day that is filled with nothing but evil pain and suffering. Plus, I haven’t been fortunate to celebrate my birthday in awhile because the finances have not been there. We don’t have many ‘happy’ occasions in my family anymore because our finances are all exhausted. We have said goodbye to the days when we used to have Thanksgiving dinners, Christmas and Chanukah, as well as to birthdays. One day just blends into another, as the bills are snowballing out of proportion.

The best gift that I could ever receive is that I would be able to get well. Not only would this be the best gift for me, but also it would be the best gift for my entire family. I have caused so many problems in my family and instead of being a ‘happy’ family we have turned into a family that just EXISTS. I can really see the toll that this illness has taken on my entire family because even though the love for one another is still there, the ‘closeness’ and ‘happiness’ that was once there… can no longer be found. I guess it is kind of hard for that to happen when you literally can’t do anything except work and then look at the four walls of your home… a home we can barely even afford the mortgage payments anymore.

10959249_10101432746271970_5550733232782944027_oMy illness is horrible because not only have I been suffering 24/7 from it, it is taking my family down with me as well. I can’t remember the last time we did anything FUN as a family. We haven’t been out to eat in the longest time, the last time we went on a vacation was over 10 years ago, all everyone does is work…work…work… and unfortunately we don’t even have anything show for it. My parents are in their 60s and instead of them slowing down and enjoying life because they worked so hard all their lives, they are now working harder than ever and they aren’t even seeing a penny of what they are earning for what they are putting in. We basically can’t pay for anything anymore. The one thing that we have and love is our house, and it is at risk because we are having a great deal of trouble paying the mortgage and have missed payments. Essentials that are needed to survive such as heating and water have also been difficulty to pay. Even putting food on the table is something we have been battling with. Never did I think my life would ever come down to this.

I feel horrible because it is because of me that all this is happening, as my illness has exhausted all of our finances. We basically cannot even stay afloat anymore. We can’t even pay for the lifesaving treatment that I desperately need, which includes going to Mexico to get the Ketamine Coma because it is over $100,000. Yet, this is this ultimate cure-all for my neurological disease and autonomic dysfunction and I cannot get it because of the cost of it. Even though I have been going for ketamine comas/infusions in the United States, they are not high enough to be “cured” of this horrendous illness. The amount of ketamine that I require is not FDA approved in the United States and can only be acquired in Mexico or Germany, which is when they will literally put my entire body on machines and I will be essentially ‘dead’ for a week or two. When I wake up I will be ‘rebooted’ much like a computer is rebooted and cured of this illness. It is absolutely miraculous and I would love to be able to have that opportunity, but I know how costly it is and I know in order to receive it… I will either need a miracle to take place or people to help me get there.

In the meantime though, I am deteriorating rapidly. My entire body and organs are shutting down and even though we are trying to hang in there and ‘buy’ time so that we can save enough money to get to Mexico or something else comes along that can potentially save my life…we can’t even afford that. I desperately need heart surgery, TPN, and my colon removed. Yet, with my illness I can’t be treated as a normal or typical person and therefore, I cannot go to just any hospital. There are very few hospitals and specialists that are capable of handling my complex illness and therefore, we are forced to travel nationwide to receive medical treatment, which is another financial expense that is mega especially when it forces your parents not to work because they are your caretakers and can’t be in two places at the same time.

There are very few places capable of handling me. I need to be in a hospital that will be able to give me ketamine and place me in the ICU, but it is extremely expensive and not many hospitals are capable of this. I am extremely hypersensitive and the slightest touch and procedure will exacerbate the neurological disease and autonomic dysfunction. That is why I need to have the ketamine, as ketamine is a special medicine that has the potential to be able to reverse this illness or at least stop the progression of this illness. I can’t tell you how helpful this drug is and how no procedure can be done with out. One time I had a tube placed in me (J tube) and I had to be rushed into the ICU afterwards because it had stirred up the disease so bad that I became incapacitated with the autonomic dysfunction, unable to walk, etc. Thankfully after the ketamine was administered, things went back to the way it was before the placement of the tube and I was able to regain function of my body and legs. I still had to use the crutches, but at least I had function of them. So as you can see… it just isn’t an easy answer to just go to a hospital.

We really don’t know what to do to be honest with you. We are literally at the end of the line and it is at the point that if treatment isn’t sought soon, I am going to die. Things are getting progressively worse and I never thought honestly that it could even get this bad. I look at my parents and they are beyond themselves because they know that no matter what they do… unfortunately their hands are tied. They work as hard as they can to try to pay for the costs of the treatments, but in reality…. it is like working for pennies. This disease is so much bigger and expensive and stronger than any of us can ever think and believe. It needs a HUGE army to take it down. I used to believe that even though we lost the battle that we could still win the war in the end, but now I can’t even believe that. I was once strong and a good warrior, but now… I am just a wounded warrior waiting for the war to end. I am tired of suffering. I am tired emotionally. I am tired physically. I am tired medically. I am just ready to surrender already. When is enough going to be enough? We have lost so many battles that I am just waiting for the war to end.   I don’t honestly know how much longer that I can remain in this Hell. I only wish that I could receive the treatment that I so desperately need to save my life.

Not only can we not pay for the huge lifesaving procedures that will save my life, but also we can’t even afford the daily stuff that would try to buy me time. We can’t afford the appointments, medications, insurance, etc. I am suffering and there just doesn’t seem to be an end in sight. I used to always think that there was a pot of gold at the end of the rainbow. But I am in this long and dark tunnel and not even at the rainbow yet… I desperately need the help of others especially after what I have learned this week… especially after tonight!!

Like I said previously, you know it is bad when you don’t even know when you birthday is. It really is no big deal though to me because I wouldn’t be doing anything to celebrate the day anyway. This disease has forced me to lose my social life, be isolated, and not able to do anything. I can’t even enjoy a simple birthday cake to eat. Every year I would blow out my candles making the same wish, which was to get better. Yet, that wish has never come true. So what makes this year going to be any different. It is just going to be another day! Sometimes honestly I believe that day is cursed actually because it was the day that Queen Elizabeth died and the day that I was born. Plus, it always snowed or rained on that day every year. What other day does something like that?

I have deteriorated so much that even by just receiving ketamine on an every-other-week basis is not a possibility anymore. I am now receiving a dose that is higher than I ever had and I have to go weekly. In addition, besides receiving the ketamine on that day, I also have to have medication placed into my spine (almost like blocks) in order to help survive the week. I can definitely feel a difference as the week progresses and we get away from the day I had the procedure.

10904085_10101418498918780_3753609108284974417_oThankfully I have my loving dad to take me for this procedure every week, but it also takes a toll on him as well because it forces him not to be able to work that day.   When I go for these ketamine procedures, I am in the hospital the entire day and therefore, it forces my dad to work extra hard because he not only has to take care of me in the hospital, but he also has to do his work after we get back from the hospital… so he doesn’t come home until very late. He is basically running around without a head and I feel so bad because he is no youngster. I am so afraid something is going to happen to him because if something does… I would never forgive myself. He is not only my dad, but also my best friend and knight and shining armor. I love him to death. I definitely wouldn’t be here if it wasn’t for him!!

I am so fortunate to have him because he takes such good care of me. He holds my hand and stays right by my side until I am under the Ketamine, and he remains by my side until I finally awaken, which is hours later. I know how boring it must be, but he still stays with me and I am so thankful for it!

10860840_1404342339866500_314543068312785933_oEven during the ketamine procedure, I need to be brought into another room so that I can have the work and injections performed in my spine. Instead of just being plopped in a wheelchair and moved and picked up that way onto the table, I am fortunate enough for my dad to actually carry me from one place to another. What better transportation is that? He carefully places me on the table because he knows that the slightest touch to my body causes me extreme pain. I am so hypersensitive that the simple touch of a loved one sets off the autonomic dysfunction and I feel ‘smothered.’ I also feel like someone is touching me with shards of glass going through me. In fact, they can’t even put the IV going through me until they ‘knock’ me out because even though you technically have no nerves in your veins, I can actually feel all the fluids going through the lines and they feel like shards of glass tearing up my veins. It is horrible.

Speaking of how horrible this illness has gotten, I had to even have a double dose of ketamine this past week. During the time I was receiving the injections and work in my spine, I started to work up and was screaming about pain. So the doctor really had no other choice but to give me more ketamine.

In addition to getting ketamine every week, the doctors also give me vitamins through the ketamine bag as well. Since my stomach is totally paralyzed and I don’t really ‘absorb’, the doctors give me the vitamins through the ketamine bag so that I will be able to at least have vitamins once a week. My dad even gets vitamins like this once a week too because they are supposed to be so powerful. When getting anything by IV, it is so much stronger than getting it by mouth. So… the doctor swears by it. He said that whenever he gets sick and then takes the vitamins by IV, he is essentially ‘cured.’ It really is true too because there have been times that my dad hasn’t been feeling well and after being given the vitamin bag, he feels all-better. It is really something!

To make matters worse, my dad usually carries me to the car and into the house after my ketamine procedures each time because I am so ‘out of it’ and can’t walk anyway without crutches. So you can imagine someone high on drugs trying to use crutches. Basically it is a losing situation. So… to make it easier, my dad always is my hero and carries me out. However, this time when he carried me out, I ended up hearing a “pop!” I knew something happened right away to my rib even though I was hoping that I was wrong. But guess what? I was not wrong at all. After we got home and he placed me on the couch, I took a brief nap because the ketamine had knocked me out and I woke up with a fractured/broken rib. So now on top of everything else… I have this to worry about.
Doctors always say how “fragile” I am and how they are always worried about me ‘breaking’ something. Well… sure enough I broke this one. Damn is it painful… especially when you have this illness. It makes everything 100 times worse. I can barely breathe and it is really complicating things because it makes it harder to go to the bathroom and breathe in general. The aspirating has been getting worse and in order to clear my lungs I am having great difficulty because of the rib being broken. So I am not in the greatest of moods and having extreme difficulty more so than before.

I also received bad news today after I went for my double procedure. I went for my weekly housekeeping today, which is to cleanse my colon because my entire GI tract is essentially paralyzed and ‘dead’ because of the neurological disease, autonomic dysfunction and gastroparesis. Nothing passes through as my entire GI system from my esophagus to the stomach to the intestines to the rectum is all paralyzed. Therefore, everything I take in (i.e. meds, food, etc.) literally remains in my colon and rots. Doctors are so worried that I am going to go into sepsis or even perforate my intestines because of this. I am already having toxins leaking into my bloodstream from this and as a result, it is spreading to my organs and brain and shutting them down.

In addition to this procedure being done today though, they were also going to work on my esophagus because since my esophagus doesn’t work either, pills keep getting stuck in there and dissolving there instead of where they are supposed to be dissolving, which is in the stomach. It makes it very painful because it can literally rupture my esophagus too. Sure enough when he went into my esophagus he saw the pills that I took and he had to push them into my stomach.

My GI doc said that I am in such a mess and desperately need my GI tract worked on ASAP. He desperately wants me to get to the Cleveland Clinic to have the heart surgery, TPN, and the colon removed because of what is happening. However, it is easier for him to say because for all this to happen, we will have to have the finances to back us up. We will literally have to be down there for at least 6-7 weeks, possibly more. The TPN alone will have to be administered for at least 2 weeks before they will remove the colon because of the state I am in. Since I am only weighing in the 60 plus range and extremely fragile, I have no reserves to help me ‘heal.’ As a result, I can easily die if I have this operation because not only is this operation dangerous in itself, but it is even more dangerous because I can’t heal like a normal person. All I would need would be the slightest of infections, and I would be dead. So… the doctors are insisting that I be built up for a bit before they do a huge operation like this, which will take at least 2 weeks to do because you can’t start out on TPN full dose. I have had TPN in the past, but I failed it. Yet, they are hoping that with the heart surgery and then putting it in with the central line and the ketamine, it just might work. At least that is what they are aiming at.

But like I said before, everything costs money and we don’t even have the money as of this time to even go to the Cleveland Clinic let alone stay there for at least 7 weeks and undergo these operations and such. So we honestly don’t know what to do. I am also in need of the multivisceral transplant, which is where I will receive a new colon, small intestine, stomach, pancreas and liver. However, it won’t be until they remove the colon that the doctors will know the urgency of how fast I will have to have it. They are hoping I will be able to live without the transplant for a bit so that I can heal without the colon for a bit and give it some time to get back on my feet before they do a huge complicated transplant like this, which is the most dangerous transplant there ever is. Only like 6 hospitals in the country do this transplant.

Even though I need this surgery as soon as possible because my body is becoming intoxicated because of the toxins leaking out into my bloodstream and then going to my organs and brain, which is essentially shutting them down… we are trying to buy time by cleansing my colon out every week by going into the operating room and having the surgeons “clean” me out. Not only is this trying to “buy” me time, but it is also making me feel better because since nothing moves along, I am constantly feel so bloated and feeling like I am 9 months pregnant. I constantly walk around stating that I need to be ‘popped’ or something.

But now we have a problem. I got a phone call from the doctor tonight with bad news. He called to tell us that the outpatient hospital wouldn’t allow us to do the procedures there anymore because I am too high of a risk. However, if I don’t have these operations at least once a week so that I can be decompressed and have the stuff taken out of me, I will essentially die as well.

The anesthesiologists are extremely scared of having me there now because of what happened to Joan Rivers, as I go to the same place that Joan went to. Even though I have been going there weekly and been going there forever and nothing has happened, they are afraid for that one time something will happen. Due to my extreme gastroparesis, my stomach is never empty and as a result, it makes getting anesthesia extremely risky. All I have to do is aspirate while I am under, and I will die. I understand where they are coming from, but I also know that if I don’t have these procedures, I will die as well.

The doctor doesn’t know now what to do because I need these procedures desperately. He said that ideally I would need to be in the hospital every week to have these procedures so that I can be fully intubated because this way if I aspirate, my airway is safe. This also means that it will have to be done under General Anesthesia and not local, which we have been doing it. This also means that he can’t do it because even though he ‘works’ the hospital, he can’t do this procedure weekly in the hospital.

So basically we are between a rock and a hard plate. We thought about fasting even longer so that my stomach is perhaps empty, but that also means I will lose weight. People have to stop eating at a certain time so that their stomach empties so that they can undergo anesthesia. However, with my stomach not working… I can’t just do that limited time. Instead, I need at least 48 hours, which means that I won’t be eating every week for 2 days. This isn’t such a great option either because it means that I will lose weight, which is something that we can’t afford either.

So after speaking to the doctor tonight, he told me that I literally have weeks to live. He said that I desperately need something done right away or I am going to die because I can’t live without these procedures because I desperately need to be decompressed because without it I will either rupture my intestines as well as go into sepsis. I will also be extremely uncomfortable and will set off the autonomic dysfunction as well, which will further contribute to causing even more life-threatening problems. But on the other hand, I can’t not eat for 48 hours every week or remain on clear liquids for that length every week because I don’t have the weight behind me that I can afford to lose. I am at the point that even losing an ounce is extremely crucial and can kill me because once that ounce is lost…. I can never gain it back.

We really don’t know what to do. All we know is that we need help and help now. The doctor is going to talk to his partner who works out of NYU and ask if he can please do something out of NYU, but it would only be temporary. Plus… to put me under general anesthesia and be intubated every week… that is really hardcore on me too and my body isn’t so strong either. So… he told me that we would talk more on Monday and see where we are.

I know where he is coming from because he doesn’t want another “Joan Rivers” on his hands, but like I told him… he has to see where I am coming from too because I can’t survive without the procedure either because I will perforate my intestines and go into sepsis and stuff. He said that he is worried about me not eating for 48 hours every week beforehand because of the weight that I lose, but then after I told him that if I don’t have the procedure I won’t be able to eat or drink anything anyway. By the time the procedure day comes around, I can barely eat or drink anything anyway because I am so stuffed and everything. Then once he unloads me and decompresses me, I feel better and I am hungry. So basically he is not losing anything technically by me fasting 48 hours prior because otherwise I won’t be able to eat or drink at all.

As it is I can’t quench my thirst as it is. I am so thirsty all the time and nobody knows why. I drink so much and I even get IV bags twice a week when I go for the ketamine and then when I go for the “colon” procedures. However, no matter what I do… I am still thirsty. It really stinks too because the more I drink… the more I aspirate. It seems that the more I drink… the more I drown in my own fluids. I am like in a no win situation.

All I know is that I desperately need help because after today’s procedure, they had a meeting and my doctors decided that I only have weeks left. However, it isn’t like I can get the treatment that I desperately need right away because we don’t have the funds to pay for it. I desperately need the help of others and if anyone can please help me in anyway possible, I would really extremely appreciate it. No donation is ever too small and all donations are appreciative. I realized that there are so many people in the world that even if each person contributed a $1, I would easily be able to get the very much lifesaving treatment that I need,

But I know that isn’t going to happen. So after the doctors called tonight, I really honestly didn’t feel like talking to anyone. And then you wonder why I don’t remember when my birthday is? All I ever do is get grim news, so why are birthdays important to me? I just wish I would disappear at this point because all a birthday is at this point to me is just marking another year of suffering in this “Hell.” I really honestly don’t know how much longer I can do this. I really want to get better. But I know I can’t do it alone. I need help from others. If I can’t get better because we will never be able to afford it, then I wish I would just go already because it isn’t fair to me or what I am putting my family through anymore. I hate feeling all this pain and suffering all the time and watching my life and seeing others pass me by. It is the worst thing ever to be stuck where I am and suffering 24/7.

Got really bad news tonight 😥 the docs called and gave us some grim news. I don’t have time on my side and I have only weeks left. I’m so upset that my birthday is next week and I don’t even know when it is because I don’t even care about it. I know I’m not celebrating it. People usually always know their birthday. Guess it shows how bad things are because I don’t even know when mine is. All I know is that it’s next week because it’s the ‘7th!’ We have no money to celebrate and boring to celebrate so whatever…. Especially after what the docs told us tonight.

Since I definitely don’t have that on my side and I know I need help on my side, I decided to try one more time to fundraise. Of course if you have any other ideas to fundraise, please email me at Femirsky@gmail.com.   All I know is that I need help and help NOW!!! I am really running out of time quickly. The docs say I have just weeks left. So I’m trying my best right now to save my life and get the most money I can do I can get the lifesaving treatment I desperately need.

%22As you know in not doing well at all and desperately need to get to Mexico and need treatment a.s.a.p. I am still trying to sell my bracelets that you can purchase and sell (they go for $5 each) and they say HELP FALLON FIGHT. They come in pink and different shades of blue and are the ‘Livestrong’ bracelets you see people wearing. But of course these bracelets are custom made for my cause and has my website link on it. Please contact me at Femirsky@gmail.com if interested in buying or selling.

a-plus-variety-candy-fundraiserIn addition…I am selling candy in the form of chocolate or candy (i.e. Candy bars, skittles, etc.), chocolate rose lollipop for Valentine’s Day, and even your regular old fashion lollipops (I don’t know if you are familiar with it but we used to do this in high school to raise money). You can buy anything for $1, but I am not only asking you if you want to buy, but I want to know if you will help me sell as well.

If you can and are willing… I can get you a box of your choosing…whether it be chocolate rose lollipops, a box of various candy bars and other various candies (such as snickers, skittles, etc.) or even a lollipop box of your choosing (old fashion, blow pops, astro pops, lips, Rock candy, etc.). Depending on what you sell its varies in cost but mostly they are $1 each.

chocolate-rose-fundraiserIt would be much appreciated if you can help me sell things. I can get you a box of what you want to sell such as candy or lollipops or even bracelets and you can sell them. You get about 60 pieces… And then sell them for the price they are selling for… Which is usually $1 depending on which you choose to sell.lollipop-tree-1

For example… I am making a lollipop tree in my dad’s office to sell regular lollipops (old fashion ones) for about 50 cents and then I am selling chocolate roses lollipops for $1 for Valentine’s Day. I am also selling flashlights (mini) for $5 and this way you can use them as a regular flashlight for blackouts or something like that or you can even use them to look for bugs in hard places.

lp.aspxSo if you are interested in selling any of the above (or even buying anything)… Let me know and I will get you a box. I also made new cards out to pass along that show my websites and where people can make donations. Please… I know I am begging… but I am begging for my life. I really don’t want to die and I really desperately need treatment. I really want to regain the life that I was robbed of and become a doctor, have a family, and live happily ever after like everyone else does. It would mean the world to me and also be the best birthday present too if I were to get the donations needed so that I can receive the lifesaving treatment that I need. Remember, please pass this website along, as it is the place that donations can be to: www.gofundme.com/Help4Fallon

lp-1.aspxWell… I guess that takes care of everything. I think I wrote enough today. I will write more when I know more. Thank you so much for supporting and encouraging me because I would have never made it this far without you. But to be honest with you… I am scared and terrified what the future holds… especially when the doctors state I only have weeks to live. Please help me… if by nothing else by spreading my website link. If you want business cards to pass out or post signs, please contact me at Femirsky@gmail.com. You can also contact me at that email if you have any further questions.

Thanks again,

Fallon

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January 18, 2015

10608256_10101418497756110_5871874584951671762_oHey-

I just figured it was that time that I needed to update my blog especially since so many things have happened since the last time I have done so. I have been intending to write for such awhile now because I really wanted to alert you on all the upcoming things that have happened lately, but I have really unfortunately been so sick that I haven’t had the energy to honestly do anything.

I really am getting so bad that unless something is done…. I don’t think time is on my side. I know I have been saying that for quite awhile, but my organs and body are shutting down at such a fast rate and the doctors are actually quite fascinated as to how I am continuing to survive especially in the state that I am. They feel that it is “inhumanly” possible to survive at the medical state and weight that I am in. But surprise surprise… loo who is shocking them all and still hanging in there. After all… how does that saying go? “It isn’t over until the fat lady sings, and that lady isn’t singing yet!”

But believe me… that lady is definitely getting ready to sing and that is why I desperately need your help more than ever. Since I last written, my health has deteriorated quite a lot, I made a trip to the Cleveland Clinic and found out very horrible news, and found out how limited time is on my side and how imperative it is that something be done ASAP.

It hasn’t been all-bad though. For once… something good has happened to me that will hopefully bring in the tons of help that I desperately need to receive the lifesaving treatment that I especially need in order to live. I have been robbed of my life because of this horrendous disease and I have honestly been unable to do anything, as I watched the world just continue on and pass me by. I have been so sick that everything that I worked for when I was going through school and all my dreams and aspirations, have literally been put on hold. I really worked my butt off in school because I was the type of person that accomplished anything that I set my mind to and I was the type of person that was going to make a difference in the world.

10903818_10101413257477670_6922362217477250513_oI had been an A+ student and had my sights on becoming a doctor. I personally have many reasons why I want to become a doctor. Yes… my first answer is I want to help people, and yes it is true that you can help people in many ways but I think a doctor provides the most direct and critical type of help. I mean how many times have you been in pain and you’ve gone to see your doctor and after he’s treated you… you want to just get up and hug him? The healing power of a doctor is almost godly. I don’t think any other profession is more appreciated than a doctor because of that fact. We as humans seek help and relieve from pain and suffering when we are going through such a time and the most critical pain and suffering is physical pain and when that pain is relieved we are most grateful. So I feel I can make a huge difference in the lives of others and give them back their lives that they would have otherwise lost. I cannot think of anything superior to helping a fellow man or woman at a time when they are most vulnerable or in the greatest need. In addition, medicine is one of the few careers that are constantly ameliorating, and I always had a love for learning and going to school. The end of medical studies does not mean the end of learning. Quite the opposite – your college is providing you with basics for further knowledge and skill development such as summits and seminars. Medicine will always keep you humble since there will never be a time when you can know it all or cure it all – ever. But “medicine” is one of those colleges that it is never too late to start studying and as a result, when I get my life back, I plan on resuming my lifelong dream of becoming a doctor.

But in order to accomplish that lifelong dream and reclaim my life back, I first need to get WELL. That is the is utmost priority at the current moment because unless I get the treatment that I need quickly, I won’t be making it much longer and I won’t be able to have that opportunity to become that doctor that I so longed to be. So, as I have asked so many times in the past, I need you help desperately in order for that to happen because I need lifesaving treatment that we can’t afford on our own. Without treatment I will die.

I know that you are probably hearing that I need “help” already and asking for “help,” but the truth is that I need treatment that I cannot afford. I am rapidly deteriorating and without the treatment that I need, I will die. I am living with the most painful and debilitating disease and I never get an escape from it unless I am under a “ketamine coma.” But of course the coma that I actually need is in Mexico and we can’t afford it without the help of others. It is will be that coma in Mexico that has the potential of curing me.

10911485_10101412801147160_864273668456136042_oWhere others that don’t suffer from my illness can block out my blogs and not read them, or they can not know the pain I am actually suffering 24/7, I am suffering every single minute of the day with a disease that is currently one of the most painful in the world, as it is a whopping 42 on the McGill Pain Scale. It ranks higher than childbirth and even amputation. I never get a break from it.   This painful and progressive neurological condition affects skin, muscles, joints, and bones. I constantly feel all different painful symptoms that can range from feeling that I am doused in gasoline throughout my entire body and then lit on fire 24 hours a day…. To feeling extremely like there are shards of glass going through my entire body and someone is cutting my up like a razor. The burning is so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire!

I also have “allodynia,” which is an extreme sensitivity to touch, sound, and/or vibration. I also have excessive tissue swelling known as edema, autonomic dysfunction, and dramatic changes in the color and temperature. Sometimes I feel like a freak of nature because in a split second and for no apparent cause, I can go from normal coloration to being black and look like I am necrotic and need amputation.

In sum, this neurological disease consists continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.   It has also caused my entire GI system to malfunction and become paralyzed, which means that I cannot eat. I have dwindled down to weighing only in the 60 plus range, which is extremely critical because I have no reserves to fight anything should I need surgery or get even a simple cold. My neurological disease basically has a mind of its own and controls my entire body. It is bigger and stronger than I am and that is why I must find all the support that I need to put the “fire’ out before it is too late.

Ultimately, I really need to go to Mexico to have a special Ketamine Coma that can only be done there. Although I have been having ketamine comas/infusions here every week, the amount of ketamine that I am allowed to have is no where in comparison to the amount that I actually need. 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 such as Mexico.

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Yet, it is very expensive and we cannot afford it, as it is over $100,000. I have been to Mexico to see if I am a candidate for this treatment and it has been clearly decided that I am one of the worst cases that has ever been seen in the world and I desperately do need it. They compared my case to a past patient and it literally cost her a million dollars to get her life back because she had to remain in Mexico for close to 2 years because of how ill she was. Yet, for someone that was on her deathbed, she is no miraculously cured and able to go to school, become a doctor, etc. She has been able to come out of her HELL and reclaim her life. So it has been extremely well worth it and proven that it can be done! I just have to find the funds so that I can have this opportunity before I expire and the curtains close on me forever.

I have tried numerous ways to raise money and in the meantime we have been having to try to buy time because my body is completely shutting down. My organs cannot take much more of this, my GI track doesn’t work and it prevents me from eating, my heart is worsening, etc. There are so many times that we don’t even know if I can make it through a day or night. But, it isn’t like I can just pick myself up and go to any hospital to be cared for either.

Since my disease is so complicated, not many doctors are familiar with the complexity of it. They may say that they “know” about the illness but they are not fully “knowledgeable” about my illness and as a result, they can really hurt me in the long run. There are very few doctors across the country and world that actually understand this illness and I cannot be treated like a typical and regular patient because the simplest wrong move can easily spread and exacerbate my illness. Just having an IV placed in me is like someone sticking a knife in me. The saline that runs through the IV is like someone sending shards of glass through me. The slightest wrong move get set my body into total autonomic dysfunction and cause me severe distress and even death.

10906263_10101413251644360_1493972393966263745_nAs a result, there are not really any doctors or hospitals for me to go to regarding my illness for advice or even when I am having an attack. We have to travel across country, which is very burdensome because it is not cheap to travel. Not only do we have to worry about the traveling expenses, but also we have to worry about the living expenses when we are there, as well as my dad’s business because he owns his own. Luckily my mother is here to try to hold things together, but there is only so much that she can do. Plus, insurance only covers so much and besides paying the astronomical premiums because we can’t have a cheap insurance plan since we need it to cover me across country and for many different procedures and doctors, we also have to pay for costly deductibles, copayments, etc. Gosh… if I am paying all this out-of-pocket with insurance, I can only imagine how much the insurance has already spent on me. I also have to take medications and injection that have very costly copayments or they are completely out-of-pocket since they are not covered or ordered outside the USA. So between all the treatments, medications, doctors, traveling, etc. it is no wonder that we have run out of money with me being sick. After all, it isn’t like I have been sick just for a few days. This has been going on for awhile and we have exhausted all our funds. That is why we desperately need your help if something is going to be done.

Like I said before, my ultimate treatment is in Mexico, but in the meantime I have to do something to ‘buy’ me time until we can get there. However, even with this ‘buying time’ we are really running out of time and it is crucial that I get to Mexico ASAP.

I constantly walk around like I am 9-months pregnant and feel like I am distended and need to be ‘popped.’ Everything that enters my body, whether it is meds or food, will not move and literally sit there and ‘rots’ in the colon and intestines. The doctors are so afraid that I am going to rupture or perforate my colon because I will go into immediate sepsis and die from this.

Besides worrying about perforation and rupturing, I am also being poisoned to death because of the paralysis of my intestines. The toxins are spreading into my bloodstream, which are then going to me organs and brain and intoxicating them as well. As a result, they are not just shutting them down and killing them, but they are killing me overall because you can’t live without a brain and those organs.

I have been going for weekly surgeries besides taking so many medications in order to try to alleviate the potential of my intestines rupturing or perforating, as well as to try to induce peristalsis. Besides unsuccessful enemas and depositories, I have taken other medications to try to do this. I take over 50 pills daily, which includes 7 Senokots, injections, 8 Ducolax, 6 Colace, 800 mg. Magnesium, Misoprostol, Colcrys, Domperidone, Vancocyn, Clindamycin, Azithromycin, etc.

But nothing seems to work and as a result, I go for weekly surgeries so that I can be ‘cleaned out.’ I always look forward to this day because it is the only time when I actually feel better with my stomach. I finally get to feel “unloaded” and I no longer feel like I am 9-months pregnant and ready to give birth. I get so distended that it isn’t just a ‘feeling’ of being distended so much, but it actually looks like I am pregnant. So I go for these operations not to just make me get any kind of relief whatsoever, but to hopefully prevent the perforation and rupturing of my colon, as well as limit the toxins going into my bloodstream as much as possible that are going to my organs and brain and shutting them down. I always kid around with my doctor calling it “housekeeping” because essentially that is what it is.

Since my GI track is completely dead, I desperately need my colon removed, as well as a multivisceral transplant. It is a very dangerous surgery to have your colon out, and the transplant is the most dangerous transplant that you can have. Only 6 hospitals in the country actually do the transplant, which will entail receiving a new stomach, small and large intestine, pancreas, and spleen. But the first step out is to get the colon removed since that is where the doctors are thinking that the major problems are occurring (the toxins spilling into the bloodstream). Once the colon is removed, they will look at the small intestine and even though they already know I will need the transplant soon, they will make the determination as to how ‘fast’ that transplant is actually needed.

So we have recently gotten back from the Cleveland Clinic last week, as I was supposed to have my colon removed in February. We went down last week to see some final doctors and finish up the final paperwork and testing. However, things didn’t go as we had planned unfortunately because I have severely worsened since the last time they have seen me. I am definitely more fragile and not as strong as I was when the decision was made to do the surgeries. It appears that due to the fact of “waiting too long,” I deteriorated very rapidly and now it would force me to have even more operations and the intensity of these operations and what has to be done has increased dramatically.

We were supposed to have the colon removed in December. However, due to lack of funds, we were unable to do it. Even though I desperately pleaded and tried contacting as many people and the media as possible, unfortunately we weren’t able to afford the surgery that was needed. After all, it isn’t just a matter of staying there for a few days. In order for me to have this colon removed, I will first need heart surgery to put a ‘central line’ in so that I can be given TPN to hopefully make me stronger so that I can recuperate and survive the surgery, as well as provide emergency access since this operation is so huge and dangerous. I would have then needed the TPN for 2 weeks before the operation to remove the colon. So in essence, I would be in Cleveland for about 6 weeks. We didn’t even have the money to send me… let alone stay there for that length. So we had no other choice but to cancel the operation.

We changed the operation until February, but we never thought I would deteriorate the way that I did. I have really been on a downhill fall and I continue to be picking up speed fast. After our appointments last week at the Cleveland Clinic, it was determined that I was extremely fragile and they didn’t know if I would even survive any surgery whatsoever. Therefore, I would need surgery first to try to make me stronger before they would do anything. But that is easier said for them because this would mean that it would entail being in Cleveland longer and be even more expensive… which is still with money we don’t have.

It turns out now that I have lost too much weight and have become to fragile for me to undergo a massive operation like the removal of my colon. My heart has also changed in how much deterioration has occurred to it, as it has really been suffering lately. I saw one of the top 50 heart doctors that were ever at the Clinic this past week at the Clinic known as Dr. Franco, and even he was amazed I was still alive from what he saw. He was actually trained by the famous Dr. Mason Sones, who is considered the “father of coronary angiography” and is credited with one of the most important discoveries in cardiology. Sones had injected dye into the coronary arteries, which allowed the arteries to show up on X-rays and gave cardiologists the opportunity to identify obstructions in blood circulation. This innovation made accurate diagnosis of coronary disease possible and set the stage for the modern era of cardiology and cardiac surgery.

So if Dr. Franco was evaluating me, his evaluation was very meaningful because he was not just a ‘everyday’ cardiologist. Anyway, he found out that it was discovered that my entire EKG was abnormal. Not only did I suffer from severe bradycardia, but also my T waves are all abnormal. The EKG’s T-wave recordings are used to assess the heart’s form and function. T-wave depicts electrical activity during repolarization, the instance wherein the ventricles charge for the next contraction. Abnormalities found in the recorded frequency may provide insight into dysfunctions and grave conditions of the heart. We already knew that I had calcium calcifications in my coronary artery, but now we saw that my heart was now suffering too because of what these T-waves were showing.

Therefore, I still needed to have my colon removed as soon as possible, but it was really impossible given the condition that I was in. As a result, the doctors decided that what was needed before they could do that operation needed to be intensified and changed a bit. They still knew that I needed the heart surgery prior to the colon removal so that I can get the “central line” but the amount of time between the two surgeries, which was originally supposed to be only 2 weeks, was now changed to an extended amount of time.

The ‘central line’ is inserted either in the arm or chest and is threaded through your body until it enters the large vein of the heart. This will give doctors “emergency” access to you. It also is a way to give medicines, fluids, nutrients, or blood products over a long period of time. Since I had deteriorated immensely, I would need this line longer than the 2 weeks before the colon could be removed. They weren’t sure exactly how long I would need to have it in me until the colon operation could occur, but they knew it would definitely be longer than 2 weeks.
This was devastating news to hear. Now we really have problems because we didn’t even have money for the operations in the first place. Now they want us down there longer. They said that the TPN going through the central line to build me up can now take weeks depending on how my body reacts. So this would mean that we would have to live there longer than the original 6 weeks that we planned. There is no way that we can even afford the 6 weeks… let alone longer than that. Plus, my dad has a business to run and he can’t stay away. Yet, I need to be having this surgery and be getting these reserves because having my colon removed in the state that I am is very and extremely dangerous because I have no ‘reserves!’

I know some people are probably saying that I can have the central line done elsewhere, but the problem is that I can’t. I am extremely limited in where I can have the central line placed because of my condition. I can only have it placed at the Cleveland Clinic, in California, or of course the best place, which would be Mexico. The reason is because I am an extremely complicated case and not many doctors and hospitals are able to handle all of my needs. In addition, not many doctors realize that I can’t be treated as a ‘regular’ patient and need special accommodations in order for this to happen. For one thing, I will need to be under ketamine during this process because of my illness. Not only will this central line spread my illness, but also it will cause me severe pain. Ketamine is the only drug that has the power to actually ‘contain’ and ‘reverse’ the illness… as well as give me pain relief. It has been proven how effective ketamine has been on me because when I get procedures done, it exacerbates my illness and it is only through the ketamine that things go back to the way they were and calms down. For example, one time I had a J-tube inserted and it really flared up my illness. I couldn’t even walk afterwards. However, after being given ketamine, I was able to go back to the way that I was when I first entered the hospital, which was walking with crutches and stuff. Without the drug, I would never have been able to stand on my feet again.

But the problem is that no hospital really is able to give me what I need. In order for me to have the ketamine around the clock, I would need special staffing and nursing, as well as be placed in the ICU during this time. Ketamine is extremely powerful and considered a ‘potent’ drug that will only be given in a monitored environment. Therefore, there are very few hospitals willing to put me in the ICU and give me the nursing staff required for it except certain hospitals. So… that is why it is imperative that I get to these hospitals.

But unfortunately, this is where I beg for money again. I desperately need treatment and as you can see time is definitely on my side. I am continuing to worsen and we can’t afford treatment by ourselves. Now that we are going to have to stay there longer, we have no way of paying for it and greatly need your help. As I said before… it will take weeks for me to become strong enough to remove the colon and then once the colon is removed, it will be another 2-3 weeks before I can come home. I desperately need your help!

I desperately need help because not only do we need this important treatment in Cleveland to buy us time, but I also need other parts of treatment in order to buy me time until I ultimately get enough funds to get to Mexico. We really need all the help that we can receive because we can’t afford even the medications that I require on a daily basis, which is numerous. I take everything from Ketamine to Dilaudid to Klonopin to Morphine to Nucynta to more!

This brings me to another reason why I really need more than ever to get to Mexico. Not only is Mexico the only place where I can get the Ketamine Coma that can ultimately cure me because the amount of ketamine that I need is not FDA approved, but it will also help get my life back overall because even besides “curing” me of the neurological disease, it will also detox me from all those hardcore medications that I am on. Doctors say that I take enough medication that can kill a horse. They even say that a 300-pound man wouldn’t even be able to handle the dose of meds that I am on. Yet, these meds have little effect on me.

I really would love to be ‘normal’ again and in normal I don’t just mean having my life back. I would love not to have to rely on taking medication for breakfast, lunch, dinner, and snacks. I am tired of taking medication that makes you even sicker. I take so many pain medications that I want to get off of, but unfortunately the only way this can happen is through going to Mexico. My body is so addicted to the medication and dependent on it that even the doctors say that any decrease of them can throw me into seizures and cause me death.

When I go to Mexico, they will not only shut my body down and reboot it like a computer, which will make this illness hopefully go into remission, but it will also detox me. I cannot be detoxed without having my body completely shut down because I will easily die from the severe withdrawal effects. At least by my body being shut down like it will be in Mexico, my body will be able to not suffer the traditional withdrawal effects that a normal person would suffer in a regular detox program in the United States. So going to Mexico would be win/win situation in the fact that I would not only be cured of my illness, but I would be cured of being on all these meds. I would definitely be able to get my life back… a life I long for so much.

I am only 32 years old and my birthday is just around the corner. Less than one month and I turn the double “3s”. To think… I never even got a chance to live my life. I would do anything to be able to reclaim the life that I missed out on. I would love to be able to become a doctor so that I can make a real difference in the world, I would love to have my own family, and I would just love to be NORMAL! I only wish that this will happen, but I know in reality that this is probably only a wish!

Ultimately… I need to get to Mexico. That is the only place that I really need to be to get well. But unfortunately, it doesn’t come cheap. But even without that, I still need treatment here to help me survive and buy time, whether it is through surgery at the Cleveland Clinic, medications, appointments, procedures, etc. Even though these are just ‘Band-Aids,’ they are very needed until I am able to get to Mexico. Hopefully these Band-Aids will be able to buy me the necessary time I need to allow me to build up the funds I need to get to Mexico so that I can get the lifesaving treatment that I need.

In addition, the doctors are still trying to think of innovative treatments to help buy me time and ways to help me. There are talks about brain surgery and putting a machine in my brain, as well as putting another machine in my body as an ‘off label’ purpose. However, in terms of the ‘off labeling’ surgery, we don’t know if it will be possible because it is also up to the people that actually make the machines too. So my doctor has to talk to them first and see if they are ‘on board’ for it. At this point, I am already a guinea pig… so what is another thing being tested on me? I just want to get better so badly already that I am thinking that I am willing to do everything in the world!

That is why I am begging for help. I desperately need help so that I can get my life back, which I was robbed of. I desperately need to get to Mexico. I also need help in my current treatment because we are at the point where we can’t afford ANYTHING!!

If there is anything that anyone can do, I would really appreciate. I have been really fortunate that a dear friend reached out to CHANNEL 12 NEWS LONG ISLAND and they were able to do a story on me. I have put the video up as a YouTube clip at: http://youtu.be/230-_Rg1ixU

I want to thank all the people who left me all the wonderful and thoughtful comments. I can’t tell you enough how much I appreciate it, as it really makes a huge difference knowing that others are behind me and supporting me, as well as gives me strength to push on.

As Ghandi once said, ‘In a gentle way, you can shake the world!’ I always had a dream to make a difference in the world and leave a legacy. Even though things didn’t go as planned and I never became my dream or being a doctor, I figured I can still make a difference in the world by sharing my storyline being afflicted with this horrible and mysterious illness. After all, it was Robert F. Kennedy who stated, “The purpose of life is to contribute in some way to making things better!”

I was thinking about starting a twittering account and using my blogging website www.FallonMirsky.wordpress.com as a way to carefully document my life and illness. Jimmy Carter once said, “I have one life and one chance to make it count for something… my faith demands that I do whatever I can, wherever I am, whenever I can, for as long as I can with whatever I have to make a difference!” Therefore, here are 3 things I hope accomplish.

  • I want to bring awareness to this horrendous & mysterious that VERY FEW are knowledgeable about. By doing this, it will not only bring awareness to fellow patients suffering, but it will also show them that they are not ‘alone’ and ‘invisible’ with a disease that has one of the highest suicide rates. After all, people are ignoring one of the worst feelings a person can feel… Especially people who matter. Perhaps HELP and a CURE can be found by more people knowing and learning about this illness.
  • The sharing of my story through Twitter and my blogs will enable anyone and everyone to be able to ask whatever questions he/she might have. It will enable a person to ask any question because there is no such question as a ‘stupid question As Plato once said, “ignorance is the root and stem of all evil!”
  • It can help bring in some much needed funds and donations so that I can receive the lifesaving treatment that I desperately need in order to save my life, as I am rapidly deteriorating and will not make it much longer without treatment. Treatment is incredibly expensive and we can’t afford it without your help.
  • Finally, I can leave a legacy showing that just because you have an illness, it is not your identity and you can’t let it define you. It shows that even if you are struck with an extremely severe painful illness, you still can persevere. No matter what there’s always HOME and you should NEVER GIVE UP!! There is no such thing as an ‘ending’… Just a new beginning.

So give me feedback. Should I start a Twitter or revamp my blogging because I don’t want to do anything if people aren’t interested. I just figured that even if I can’t be ‘helped,’ it doesn’t mean that I can’t help others. Winners never quit and quitters never win and therefore… As long as people want to hear my story and support me…I am going to fight and hold on as long as I possibly can. I will try to keep my story going as long as possible so that no one has to go through the same ordeal that I am going through and even if they are… They will know that they are not alone. This is one of the worst diseases that you can ever have. On the MCGILL PAIN INDEX, this disease ranks higher than childbirth, amputation, etc. It goes far beyond just ‘pain,” as it affects the entire body. I suffer from severe autonomic dysfunction, Gastroparesis, pituitary brain tumor, I only weigh in the 60s, and my organs and body are essentially shutting down.

People have to become knowledgeable of this mysterious disease because help must be found! As Plato once said, ‘Ignorance, the root and stem of all evil!’ In sum, perhaps through me… This illness will finally get the attention it deserves so that people become knowledgeable to this horrible mysterious disease, as well as help others like me not having to suffer or feel alone anymore.

It will not only be a place where I share my experiences, but a place where people can ask me any question that they might have because there is no such thing as a ‘stupid question’ and the art and science of asking questions is the source of all knowledge. Finally, it will also serve as a place where ‘good’ and ‘funny’ stuff will be posted because it should have HAPPY things posted as well. Life isn’t all about negativity or sadness. OPTIMISM is the key.

Life is like a roller coaster with ups and downs. If you expect the worst, the worst will happen. You are your own stress, your own anger, your own sadness and your own frustration. Nothing in life is easy. Don’t let the little things bother you. Life should be happy and ‘happy’ things are just as important to be known about as the bad parts. I’ll talk about upcoming events and hobbies. I may not be able to do much because I’m basically confined home due to this horrendous illness, but I can post about upcoming good events coming up, good books that I am reading, and good movies.

Please comment below or email me at Femirsky@gmail.com. If I could make a difference in the life of another person by sharing my story… Then I have accomplished one of my dreams. Please don’t be a stranger and please let me know so I can get my everything set up ASAP!! Please share this link.

Donations are also welcomed at at this link:  Please click on www.gofundme.com/help4Fallon

10900240_10101418498923770_8935985979171311698_oThank you again for all your help. I really appreciate all the help everyone has given me. If anyone has any further suggestions, please let me know. I desperately need help and rapidly deteriorating. Any help to get my life back would really be appreciative.

Love,

Fallon

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