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.
My 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.
Thankfully 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!
Even 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.
As 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.
In 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.
It 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.
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.
So 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
Well… 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.