Sorry I have been so out of touch but the truth of the matter is that I am kinda at a standstill in treatment and I am really not doing well. I am really trying hard to hold on and hoping that there is going to be a light at the end of the tunnel, but I am still continuing this dark tunnel with no end in sight. They say “everything happens for a reason,” but I am still trying to find out the reason why I was selected to suffer from this horrible disease. People say to have “Hope”! But I kind of laugh because I can’t really do that anymore. The word “HOPE” just doesn’t mean ‘a feeling of expectation and desire for a certain thing to happen.’ It also means to ‘hold on, pain ends.’ However, in my case I don’t know how much longer I can do that.
The pain and suffering is just unbearable. I really can’t take it anymore. I plead with my father to just ‘close your eyes and knock me out!’ Nothing and I mean nothing is helping. I am on high doses of meds… meds that would probably kill a horse. But for me… they aren’t even helping a bit. All I can do is cry and scream in pain because it is just excruciating. I take all my meds… over 50 pills a day… and I just can’t get a bit of relief. I feel like I am being pulled in all different directions and being run over by cement trucks 24 hours a day. I feel like gasoline is being poured on me and I am on fire and I am blistering all the time. I am so distended that I feel like I am over 9 months pregnant and that need someone to ‘pop’ me. When is this ever going to end?
The truth of the matter is that I am doing worse than ever and to be honest I feel like I am in this all alone. It is so ironic. The people in your life who say, ‘I’m always going to be here for you.’ Are the ones that walk away first. You really learn who your true friends are when you get sick. I have so much going on and yet… I feel like that the people I always thought would be there for me are gone. My family is suffering so much and we need so much help. I need the help of others in order to survive.
I was never a ‘beggar’ or someone that really asked a lot of people. However, I am at the point where I am desperate and I am really needing all the help that I can get. I know how tight money is in today’s world and how people are afraid to be without it. But, I wish they would only also see where I am coming from. I wish they would see from my shoes that I am 32 years old and without the help others, I am going to die. I just can’t just let it happen!
I am not even asking a lot. I have seen many times that when we have huge disasters like terrorism, hurricanes, etc. people come together to help each other out. However, I am not one big natural disaster, but I am still a very important person in the world who doesn’t want to die. Therefore, I really wish that people would come together to help me live. I need people to come together to help me raise enough money so that I can raise money to afford the necessary treatment that I need to save my life. I am rapidly deteriorating and time is definitely not on my side. There are so many people in this world and if we all just came together and everyone even just donated a single $1, I would easily be able to receive the necessary treatment that I need to save my life. After all, there are 316,128,839 people in the United States. That is plenty of people to help save my life!
I’ve always helped others when I was well, so why can’t I be helped now that I need it? Why can’t people return the favor that I have given countless times whether it was to the poor, the old, the sick, etc. When I was well, I would help anyone that was in need. If there was a collection going on, I would donate. If the veterans were outside collecting money and giving out poppies, I would donate. If it was holiday time, I would make sure that I would buy presents for the homeless and less fortunate so that they could have a better holiday. If there was a walk-a-thon or another fundraiser, I would donate. But how come I can’t I be helped now in the same way I have helped others?
I have tried so many times to raise money. I have made posters, made bracelets, blogged, pleaded on Facebook, wrote to the media, etc. However, I haven’t really been successful. Unfortunately it isn’t ‘what’ you know in this world, but ‘who’ you know and in this world… I am out of luck because I really don’t know anyone in that field. I always wanted to make a difference in the world. I wanted to be a doctor so that I could help others. So I am only hoping that I will be able to get better so that I can live a long and successful life as well as a life that will make a difference in the world.
If you can please help me in any way possible, I would really appreciate it. One of the reason that I haven’t written in awhile is because I am at a standstill in treatment in and I am rapidly deteriorating. I desperately need treatment because my body isn’t going to make it much longer. So if there is absolutely anything that you can do… even if it is just spreading the word of my “Gofundme.com” site, I would really appreciate it. If each person told another person of my website and donated even a $1, it would really make a HUGE difference. So please remember http://www.gofundme.com/FallonMirsky and please help me raise as much money as possible. If you have any other ideas to fundraise, you can also contact me at Femirsky@gmail.com.
I am really running out of time. The expenses that we have are out-of-this world. Of course the ultimate goal would be to get to Mexico so that I could undergo the ketamine coma that they have for at least $100,000. However, it is very expensive and of course it is going to take a lot of donations to get there. However, if I could get the Ketamine Coma in Mexico, it could really make a huge difference in my life, as it can potentially “cure” me.
If I were to get the coma in Mexico, I would be the 38th patient to undergo this coma. This coma is for the most extreme cases and is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. 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. 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.
In the meantime though, I desperately have to get to California and supposed to be going back on July 26th because I have to have my colon removed. My entire GI tract is basically “dead” and I need to have a multivisceral transplant, which entails receiving a new stomach, small and large intestine, pancreas and liver. However, I have really deteriorating and this transplant is extremely risky. In fact, only 6 hospitals in the country perform this transplant and it is considered the most dangerous of all transplants. Since I have deteriorated so much, they are trying to hold off on this now because I am not strong enough and therefore, they are now going to remove my colon and hope that will be enough to make a significant difference. I desperately need to have it done ASAP because colon is really putting my life in jeopardy.
My colon is in really bad shape. However, one of the things that are wrong with the colon is actually partially “saving” my life. My colon is extremely dilated and putting extreme pressure on all my other organs and therefore, it is essentially shutting them down. However, this dilation is essentially also saving my life because I also have a twist and an intussusception. In a normal person, having a twist or an intussusception would mean ‘death’ because you can’t live with that. However, due to my colon being so dilated, I have been able to live with it. Yet, this ‘safety net’ can go anytime and it is really important that we remove the colon and stop this problem before it is too late.
The colon is the organ that has the most bacteria in the body. Therefore, it is very quite possible that I can go into Sepsis very easily. Nothing is passing through my colon because it is essentially ‘dead’ and there is no peristalsis. In fact, there is so much mucous inside and nothing moves that things are literally ‘rotting’ inside. When the doctors went inside to explore, it took them over an 1 hour to get to the intestines and it also took the help of many nurses in the room in order to navigate to the colon because of how dilated and lax the colon is. The colon is so distended that the surgeons have even claimed my colon to study when it is removed because they say that seeing it from the inside of me and then seeing it when it comes out are 2 different things. They all say it is massive and can’t wait to see it when it is removed.
Therefore, the colon is supposed to be removed in an upcoming surgery at Cedars-Sinai Hospital in California. It is an extremely risky surgery because as I said before, the colon has the most bacteria in the body and I can’t afford to get any infection whatsoever. Even one little infection will literally kill me. Even though the plan afterwards is to connect the rectum to the stomach with a little piece of the small intestine still there, the doctors said that I will have to have a bag for about 6-8 weeks before that reconnection can take place. The doctors said that I need this bag because it is a “safety” mechanism so that everything can heal inside because of there should be a leak or anything… The doctors are planning to put a bag in me so that the connections can heal before the reconnect me just so they can be sure that they don’t leak. They want to make sure that the body and the parts that had surgery “calm down” before proceeding to reconnect me because like I said before I can’t afford any leak or infection whatsoever.
I am not going to lie, but I am extremely petrified about the bag. I really don’t want the bag, but it looks like I don’t have any other choice. I only pray and hope that I will definitely be able to have it removed after 6 weeks. But that is going to be the longest 6 weeks of my life. The doctors say that ideally and hopefully that the bag should be able to be removed, but it isn’t guaranteed. Of course nothing is guaranteed. That is what scares me because once the colon is removed, I can’t say “give it back to me.” They said that there should be no reason why the bag would have to stay as long as the rectum is functioning, but I am just scared that for some reason or another that the bag will have to stay. My dad won’t let me believe 100% that the bag will be removed because he doesn’t want me to build up my hopes to be disappointed. Therefore, he constantly reminds me that it “should” be able to be removed, but it isn’t guaranteed.
But since this operation is taking place in California, I will need to have plenty of donations. We have to worry about traveling expenses, living expenses while we are there because we will have to be there for awhile, medical expenses, etc. The trip is all set for July 26th because I have the presurgical testing and one more exploratory surgery before the huge surgery to remove the colon, which will take place about 2 weeks later. During the exploratory surgery, they are going to put a radioactive substance in my cecum to actually map out the colon so they know exactly what they are doing when they do the surgery. The surgery will then take place about 2 weeks later.
So I have that on the calendar providing that I get the funds. Yet in the meantime I have been going to have surgery every Friday to be “cleaned out.” I need to have this done because there is too much buildup in the colon and it is hopefully preventing it from rupturing and from perforating the colon. It is also making me more comfortable because it is empting the colon out. I can definitely feel a difference when I have this surgery because as it gets closer towards the end of the week, I get more and more uncomfortable. I always make the nurses laugh because I call this surgery my weekly “housekeeping” because it is cleaning me up!
Never before has my stomach and colon been so bad. I can’t eat basically anything and even the very few things that I was eating before are basically impossible to eat now.
In addition to the stomach and colon problems, I have also found out that I have esophagus problems as well. I have basically no peristalsis in my esophagus and therefore I can barely swallow anything that is not water. They did a test and they said that the esophagus showed no “swallowing” mechanism with anything thicker than water. Even with water I had problems. In fact, if I would eat a shrimp, it will basically sit in my esophagus and take up the entire esophagus because I lack the swallowing mechanism. The doctors in California want to take care of this as well because it is a HUGE problem, but they want to do one thing at a time and the colon is the priority. So this will be taken care of afterwards.
I have been really suffering lately and it is really taking a huge toll on my life. I can barely even move. I got back my bloods and unfortunately there is now more stuff wrong with them. Not only are my heart bloods really out of whack and I can easily have an arrhythmia and go into cardiac arrest, but my glucose is extremely low that I can have a seizure and go into a coma, my carbon dioxide is extremely elevated, my prolactin is extremely high because of the pituitary tumor that I have, my clotting factor is too high and I cannot clot. I can now also add to all those things that my red blood cell count is falling and is below normal. My body is just deteriorating. I really need help. Like the doctors have said, “I am a time bomb and now I am detonating.”
I have also just went to the ENT doctor the other day and it was discovered that I had so much wax buildup that it was actually blocking the ear drum. It was so bad that you basically couldn’t even see the canal and ear drum. It was so hard inside and built up so much that there was blood and fluid inside the ear as well. The doctor literally had to use hydrogen peroxide to loosen it up and then when the doctor removed it, it was extremely painful. I am extremely hypersensitive and therefore, even the slightest touch causes me extreme pain. However, the wax was so much and it was so cemented into the ear that the doctor had to do so much manipulation that it caused me such severe pain.
To make matters worse, my osteonecrosis is also worsening. I totally feel like a stegosaurus and a Jack Lantern all put into one. To think… I was one time “pretty.” I really don’t consider myself “pretty” anymore. I am like a stegosaurus because we both have spikes going down our backs (I am so thin that I have my spine protruding like spikes), we both discolor, we are both ugly, etc. The only difference between the stegosaurus and me is that the stegosaurus is extinct and I am going extinct. I am like a Jack O’lantern because I am losing al my teeth. This really bothers me because I used to have such a nice smile. It is like this disease is totally wiping everything from me. I hate to even smile anymore because of how my smile looks. I hate taking pictures and if I do take them, I have to airbrush them before I let anyone see them. To think… I used to love taking pictures too. This disease has taken everything that I loved from me. I just want my life back and hopefully one day I will get it all back!
Due to how bad my colon has gotten and my overall GI tract, I have also been bleeding a lot. There are plenty of times I wake up from a brief cat nap to find blood or mucous in my bed. I can’t tell you how many times we have had to change my bedding already. It is starting to be a daily ritual. It even cost me a comforter because my comforter got ruined from washing it so many times. It was my favorite comforter too and I had to for like 10 years. It is a shame too because first of all it isn’t such an easy thing to buy because I need a special kind since I am so hypersensitive and can’t tolerate a lot of things. I need a comforter that is extremely light in touch and weight, but warm enough to use in the winter and light enough to use in the summer. Usually these comforters are very expensive, which is something that I can’t afford at the current moment. However, it really is a problem because I can’t tolerate a heavy blanket on me. But at least I can’t say I didn’t get my money’s worth because I got a good 10 years worth out of my this comforter. I just wish it would have lasted longer because I loved it.
To make matters worse… you know the saying that “when it rains, it pours!” I have to get new glasses because I am having trouble seeing and unfortunately I need special glasses that are extremely expensive. My eyesight is horrible and as a result, I need to have prisms put into my glasses, as well as I need progressive lenses. Therefore, the lenses alone become very costly and even though the eyeglass doctor does give me a discount and I am using an old frame, I am still forced to pay close to $1000 for just the lenses. I don’t know how on earth I am going to afford everything.
As you can see money is really hard to come by and that is why I am desperately pleading for help! The medical bills that we have are snowballing out of control and we can barely even pay our mortgage anymore. Even putting food on our table is getting hard. I need so much medication and we can’t even afford that. So, if there is anything that anyone can do… whether it is donating, spreading the word of my website (www.gofundme.com/fallonmirsky), hosting a fundraiser, etc., I would really appreciate it.
I recently also got to do something very special with my mom. We did PAINTNITE together and it was really amazing. I really don’t get to do a lot, but this was a very rare occurrence. It just so happened that they had it in the area and it was given on a Sunday afternoon. It was extra great and special because I got to do it with my mom. I got to spend the entire afternoon painting and spending time with my mom. We really thought that we wouldn’t be able to paint the picture, but to our surprise… it came out really good. They really took you through each step and in the end both my mom and I were so surprised with our paintings. My dad even said that he was going to hang our paintings in his office so that everyone can see when they come in.
Speaking of PAINTNITE and how fun it is, I was thinking actually of having it as a fundraiser. They do fundraisers, but the thing is that I need a place to hold the event. If anyone knows of a place that can hold the event or wants to do this fundraiser for me because to be honest… I really don’t have the energy or the ability to organize a HUGE event like this…I would appreciate it. I can help you organize it, but I really would need to work with someone. If interested, you can check the website out at http://www.paintnite.com/pages/group/index/boston?source=fundraisers. They supply everything. They can raise over $700 and all you need to have is a minimum of 35 people. It can accommodate up to 150 people, and catering and drinks can be included for an additional fee. Let me know if you are interested at Femirsky@gmail.com.
In the meantime, I am still trying to keep a positive attitude. I am trying to keep my brain alive and trying to keep it “going” as much as possible before I lose that too. I have been reading “SILKWORM” by Robert Galbraith. It is actually written by J.K. Rowling, but she is writing under that name. I also want to read and plan on reading the book “ALL FALL DOWN” by Jennifer Weiner because it seems like it would be interesting to read because it is a remarkable story of a woman who is addicted to pain drugs and then finds her way back. I also plan on reading of course James Paterson’s newest books because I am one of his biggest fans. I have read basically all his books and he has released 2 new books lately that I have not read. It is amazing how many books that he has written and they are still great books to read.
Well… I guess that sums everything up that is going on here. Of course when I know more info I will write more. I found out recently how to make a quick soda slushy. It is really cool especially when all I can do is drink slushy’s anyway. I am not allowed to drink regular liquids because I become too bloated and it makes me aspirate even more. So I was told that anything that I drink has to be in a “slush” form. So at least I know how to make a slush fast in case I need it. It really is quite easy to do and it comes out really great. I like to call it a “slushy in a hurry!”
Well… thanks again for all your support. I can’t thank you enough for all that you have done. I definitely wouldn’t have made it this far without the help, support, and encouragement from all of you.