Please help SAVE MY LIFE!

March 14, 2014


Hey. What’s up? Before anything… let me mention that I want to wish you “HAPPY PI DAY (3.14)!! Sorry I haven’t written in awhile, but haven’t been feeling really well. It has been getting harder and harder to write because I am rapidly deteriorating. Definitely a big difference in me in such a short amount of time. I barely get out of bed. It’s horrible. My life consists of trying to hold on as much as possible, going for procedures/surgeries to work on my colon every week, and also to have my ketamine coma infusion too every week, which has had other stuff added to it such as injections into the occipital lobes and blocks into my spinal cord because of how bad things have gotten. In a way I am thankful that I am getting put under anesthesia twice a week because it’s the only time I am not suffering.

Hey. What’s up? Sorry I haven’t written in awhile, but haven’t been feeling really well. It has been getting harder and harder to write because I am rapidly deteriorating. Definitely a big difference in me in such a short amount of time. I barely get out of bed. It’s horrible. My life consists of trying to hold on as much as possible, going for procedures/surgeries to work on my colon every week, and also to have my ketamine coma infusion too every week, which has had other stuff added to it such as injections into the occipital lobes and blocks into my spinal cord because of how bad things have gotten. In a way I am thankful that I am getting put under anesthesia twice a week because it’s the only time I am not suffering.

Things are really getting tougher than ever. But at least I get relief twice a week when I get put under for the ketamine coma infusion and then when I go for the procedure for my colon. I go every week for both, which takes not only a huge toll on me even though this is the only time I actually get out of pain, but on my dad as well because he has to find a way of working everything into his schedule since he takes me for these procedures. These procedures literally take up the entire day and therefore, it makes it harder for him to work.

However, I feel bad for my dad because it’s taking him so much away from work and we are really suffering because of that. The bills are just snow blowing out of proportion. We can’t pay our mortgage or utility bills and even have difficulty putting food on the table. We can’t even afford my day-to-day treatment anymore, which means getting medications is really a tough ordeal. I desperately need help especially since we are scheduled to leave for Cleveland shortly. My dad has been working harder than ever trying to fit everything in because he works 7 days a week before and after each procedure and basically around the clock. He is so tired and I feel so bad for what I put him through. But, he keeps doing this because he is trying his best to get the funds so that I can get the treatment that I desperately need, as it is extremely expensive.

I am so worried about my dad because of how much he works, as he works himself ragged and because he is no youngster. If it wasn’t for him taking me for these procedures, I would barely see him because he is always working. He barely sleeps anymore because there is no time and he is really running himself so ragged that when he does come home, he just basically crashes. He is so tired that even when I go for my procedures and I am “sleeping,” he crashes at the doctors’ office. This was never like him. I only hope that nothing happens to him because I would never forgive myself. My dad is like my best friend. He means the world to me. I feel so bad for what I put him through. But he feels so bad that he can’t take this illness away and that no matter how badly he tries… he just can’t seem to make enough money to pay the bills and get me the medical treatment that I desperately need to save my life. He constantly says, “he would take the disease away for a minute that he could,” but I always tell him, “You would give it back instantly because you wouldn’t be able to handle it.” I keep thinking that there are higher purposes for my suffering and for what I am being put through, as well as that people aren’t given things that they can’t handle. Yet, on the next breath as I continue to worsen, I keep asking myself “when is enough enough? How much more of this can I actually handle because I am basically at my breaking point.”

Now besides going for just ketamine comas, I also get blocks placed into my spine at the same time, as well as needles into my occipital lobes. I originally started with radiofrequency in the occipital lobes, but now I actually get injections of Marcaine into the lobes. The pain has worsened so much to the point where I have been getting killer headaches on top of the killer bodily pain that I usually get. So the only way to hopefully control it and to make a dent is to add the blocks into my spine for my legs because they have worsened so much and to add the injections into my occipitals for the headaches.

Even when I have been going for the procedures weekly on my colon, it has been getting worse and worse. The doctor says that I am needing decompression more and more and it is getting harder to do. He said that I desperately need to get to the Cleveland Clinic because of everything occurring. Everyone is worried that my intestines are going to rupture or I will go into sepsis or something because after all I have all these toxins leaking into my bloodstream currently because everything literally sits in my colon because of how ‘dead’ my GI system is. Nothing passes through and as a result, I have toxins leaking into my bloodstream and they are intoxicating my organs and brain and essentially poisoning me and killing me as well. The doctors at the Cleveland Clinic are also so afraid that we are really going to have a HUGE crisis on our hands before I even get down there because once I rupture my intestines or go into sepsis, we basically waited too long and we don’t know what will happen or how or if I will be able to get to Cleveland, which is where it is important to do the surgeries because they have the facility and materials and doctors capable of doing it whereas the hospitals here are not equipped to handle something like this. So everyone is getting edgy that I am not going to make it in time.

I’m scheduled to leave for Cleveland Clinic on April 18th because I am supposed to be admitted on the 19th and the first surgery (heart surgery to put in chest ports and everything) is the 20th, but it’s all contingent on funds. That is why I have been pleading so much for “help” because without it, it is not going to be a possibility of going and without going… I am definitely going to die.

The docs are even afraid that I won’t even make it there in time. They said that if things get at worse or that I feel like I can’t make it… I should not try to be a ‘hero’ and wait it out or attempt to go to Cleveland on our own because we may not make it there. They said that I should go immediately to the hospital and say that I need to be transferred by helicopter to Cleveland. But do you know how much that will cost? It’d probably so expensive… So it’s not really an option that I’m considering even though I desperately need to get to Cleveland ASAP because I am so bad.

I know that I sound like a broken record already, but we need help so badly because we definitely can’t afford it on our own. I am literally looking death in the face. It is something that only someone dying can literally feel and understand. I just don’t want to die and yet I know my life is literally resting in the hands of everyone else; every treatment and every move of being able to get the ability to try to “live” lays in the hands of the world. I know the key to living is money and it is a shame how much it is playing a role. It is such a fearful and annoying thing to know that there is something to save your life and to make everything better and yet…. You can’t get it because you can’t afford it. Meanwhile as I plead for help, I continue to worsen and therefore, more is then needed to save my life, which is more that I can’t afford. So it becomes a cycle that you just can’t escape because everything comes down to the $ sign. It is like the ruler of the universe.

I have definitely realized that the hard way because I never thought that we would be in this kind of situation. We were always the ones “helping” others. Now when the shoe is on the other foot and we are the ones that need the helping, it isn’t so easy. People never really truly appreciate their health or people helping them. Yet, it is a gift that so many wish that they could have. If you have your health, then you have everything. I would do anything for my health and I would do anything to get the much-needed help that I need in order to save my life. I am only 33 years old and never got to live my life. I have so much that I still want to do and never got a chance to do.

11010962_10101458859121610_6311185503642836930_nThe team in Cleveland is really amazing. I love them. I originally tried to get in sooner with another surgeon because the main surgeon (Dr. Kareem Abu-Elmagd) is going to be talking and presenting his paper in the end of April and he is not going to be doing any operations really until that is done. So when I tried to get to another surgeon… They all turned me away and put me back into the hands of Dr. Kareem because of how complicated and how complex I am. Dr. Kareem is one of the best surgeons in the world and a topnotch transplant surgeon, which is something that I need. The other doctors said that I am too ‘tough of a case’ and belong with the best of the best. In fact… I ended up with Dr. Kareem in the beginning because when the surgeons reviewed my case, they saw how complicated I was and how much I needed the best surgeons possible. They also saw what I was probably going to be in store for… Which was a transplant because of how very sick I am.

So my team (transplant team) discussed it and they made exceptions and everything to get me in as soon as possible because I am hanging on by a thread and not going to make it much longer. When I go for the surgery for the removal of my colon, I will need at least 3 sets of transplant hands in there including Dr. Kareem Abu-Elmagd… So you can imagine how difficult this surgery is going to be. I have to have all those surgeons just for the colon removal plus so many other specialists in the room to take care of the rest of my body. This is really going to be one huge surgery. To make matters worse… I am not in tip-top shape and I am really a disaster. They are really hoping that I will survive the surgery because of how weak and fragile I am. I don’t have any ‘reserves’ to help me recover and if I get an infection or complication from the surgery… I am really up the creek. So it is really important to do this surgery as careful as possible to make sure that it goes as ‘smooth’ as possible. The transplant team said that I am like the 4th toughest case they ever had at the Cleveland Clinic. Can you believe it? I mean it is the Cleveland Clinic… Which is supposed to be the BEST HOSPITAL in the country. So to be one of the hardest cases in the country… That really says a lot.

But I honestly couldn’t be happier and more comfortable with a team of doctors than with my team from the Cleveland Clinic. They are simply amazing. My head doc from the team even gave me his cell number and told me if I ever need anything that I should call him. He has spent countless hours on the phone with me… Like 2-3 hours at a time. Sometimes we are even up until after midnight talking. He never hides anything from me and is extremely truthful on everything that is going to happen whether I wanna hear it or not. He is also going to make sure that I am as comfortable as possible when I am there because he understands that I can’t be treated like an ‘ordinary’ or typical patient. He said that by the time I get there… The WHOLE ENTIRE HOSPITAL is going to know my case and me so that if anything should happen or I need anything at all (no matter what time of day or night), they will be equipped and able to handle me. Who can ask for a better doc?

But the doc said that the trick is to getting me there to the hospital in time because I am not doing well at all. He said that he has a private plane that he will send for me if needed because all the doctors at Cleveland Clinic get this option. I guess it pays to be a doctor at the Cleveland Clinic because you can get a plane sent for you if you need to get to the Cleveland clinic and you are hurt or sick and somewhere else. But don’t get too excited because it costs so much money. The doc said that he one time had the plane sent to pick up his buddy in Mexico because something happened to his buddy when on vacation with his family and when his buddy got the bill, he said that he could have ‘bought a mansion for that price!’ So I guess nothing comes for ‘free!’

But seriously the Cleveland Clinic and my team are really the best doctors.  My head doc said that the thing at the Cleveland Clinic is that they only hire the ‘best of the best’ and if you can’t contribute to a case… It’s adios to you. That’s why the Cleveland Clinic is partially so successful. They only keep docs that can contribute to a case on a case.

The Cleveland Clinic also takes on cases where other hospitals would just pass you off or something because they can’t be ‘bothered’ with you. They actually care for a patient and whereas other doctors and hospitals are more interested in how many patients they ‘treat’ to make up their reputation… The Cleveland Clinic will just focus and take their time on that one patient that needs that extra special attention because they are so complicated and need a doctor to go that extra mile to figure things out or to help them even if it means that the docs won’t be able to see so many patients. In short… Other hospitals and doctors elsewhere get their reputation based on ‘quantity’ of patients they treat, the doctors at the Cleveland Clinic get their reputation based on their ‘quality’ in how they treat a patient. I can definitely see why the Cleveland Clinic is like the best in the nation.

The Cleveland Clinic also has tricks up their sleeves that no one else has. Since they get all the complicated cases that no one really wants to touch… They have to be innovative and think of ways to help a patient because patients that come to them are much more complicated and sicker than the regular and typical patient that a doctor normally sees and treats. So my head doctor really made me feel extremely comfortable knowing that they had stuff that no one else has and that would really help me during my stay.

My neurological illness is actually a Central Nervous Disease. As you know the CNS consists of the brain and spinal cord, and the cells in the CNS are made up of neurons (10%) and Glia (90%). Well… in RSD glial cells get activated, since they are the immune cells that release certain inflammatory chemicals, and therefore, the end up releasing inflammatory chemicals into the body. The inflammatory chemicals released cause inflammation of the nerves in the central nervous system.

As the spinal cord and brain is flooded with a barrage of pain signals, the nerves in these structures become hyper-sensitized. Two things happen during central centralization: NMDA receptors are activated (that is why Ketamine works the best on me because it is a drug that blocks NMDA receptors and there are very few that do… dextromethorphan, amantadine, methadone…which I have all tried) and glial cells are activated (which make up 70% of all cells in our CNS and remain dormant usually. Yet, activated glial cells release chemicals (cytokines) that cause nerve inflammation and it has been proven that opioids/narcotics increase glial activation… which is another reason why Ketamine is the best option to use post operatively for pain).

Although there have been no long-term studies, it is shown that opioids are counterproductive for RSD and that is why Ketamine is the best for me. Opioid induced activation of glia induces them to release neuroexcitatory pro-inflammatory cytokines, suppressing opioid analgesia.   Yet, when you also suffer from severe gastroparesis and autonomic dysfunction, you need these opioids to control that aspect of those illnesses. So… it is basically two things battling against each other because I need to have both and it is at the expense of possibly causing the other to worsen. It is especially a problem when you go for surgery because that is when you need painkillers badly. Yet it is these painkillers that don’t really help my neurological illness, which is the Reflex Sympathetic Dystrophy.

I am one sick person and the doctors know already that I am going to need a lot of those ‘tricks’ and a lot of attention. In fact, my head doc already said that he is already prepared for all her phone calls he is going to get all throughout the day and night… And he said he doesn’t mind because a lot of docs are going to be seeing things with me for the first time and won’t really know what to do.

Since I am extremely sick… I am going to need a lot of surgeries when I am at the Cleveland Clinic. Therefore, I will be in a lot of comas to help me heal and everything because of how ‘sick’ and fragile I am. Since I am extremely hypersensitive, I will be in a lot more pain than a regular patient, which is going to mean that the doctors are going to have to work extra hard to keep me comfortable. So that’s another reason why I will be in a coma a lot because this way I can ‘heal’ and I also won’t feel the pain.

Anesthesiologists often are faced with the need to provide anesthesia for a patient with CRPS. Thus, special care must be provided to avoid painful stimuli from the site of surgery from reaching the central nervous system. Clearly, general anesthesia does not accomplish this. Regional anesthesia potentially can prevent a recurrence or occurrence of the syndrome from being precipitated. It is also important to note that CRPS has been caused by such minor traumas as intravenous line placement, blood donation, or simple blood draw. With this understanding, the anesthesiologist should attend to these procedures with special care and attempt to minimize any painful stimuli associated with them

The doctors already know that I am going to need all the tricks and pain stuff that can be possible because my illness makes me so hypersensitive. A simple needle stick is like someone sticking a knife through me. It’s really severely painful and unbearable. So not only will they be keeping me in a regular coma, but they are going to be using a lot of drugs people never really heard of before to try to keep me as comfortable as possible and to keep my illness from ‘spreading!’.

So I will be having comas, epidurals, pain meds, and other stuff. One drug that they will be giving me is called PRECEDEX. It’s the coolest drug. It makes you be in a coma state and yet when people come into the room to talk to you… You snap out of the coma immediately and talk to them like you are ‘fine’ and not taking anything. Then once the person leaves… You go back into that ‘coma’ state. It’s the coolest thing. They use it for really sick patients because this way it allows them to be in a coma and get all the benefits of being in a medically inducted coma, but then when needed, they can test your neurological functions easily because patients that are extremely sick and fragile need to have their neurological functions tested frequently because it’s so important. So at least that should help with the pain and also pass the time.

After all we are going to be there for such a long time. We will be there for at least 7-8 weeks. It all depends on what happens. I will be having multiple surgeries because of how sick I am. My entire body is literally dying and shutting down. I need so many surgeries and need them in preparation for the big surgery of getting my colon removed and the multivisceral transplant. After all… I have no reserves and any surgery right now is extremely dangerous and risky…especially having your colon removed and the transplant. In fact… The transplant is the most dangerous transplant you can have and only 6 hospitals in the country do it.  I only weigh in the 60s and therefore, it makes any surgery especially dangerous because I can’t heal like a typical patient I will not be able to recover.

So they are going to be doing various surgeries to try to save my organs and to help make me stronger for the next surgery that will be taking place. Therefore, I need heart surgery, colon surgery, etc.

Heart iStock pic (1)The first surgery that will be taking place is heart surgery. I need to have calcium calcifications removed from the coronary arteries and I need to have ports placed into my heart and chest as well. The ports are going to be used for various reasons. They are going to serve as ‘emergency access’ in case something should happen.  I also will need the ports so that I won’t have to be constantly stuck to be given drugs and IV and everything. After all… Like I said before… Not only is constantly being stuck by needles painful, but it can also spread my illness and we want to try to minimize that as much as possible. Finally, those ports are also going to be a way they are going to try to ‘feed’ me. I need these ports to feed me because not only do they want me to try to gain weight and get some strength so I can undergo and recover from these massive surgeries, but weighing in the 60s is extremely dangerous. I look like an emaciated skeleton.

So they are going to try to ‘feed’ me through these ports too. After my colon is removed I won’t really be eating until I get the transplant. So I am trying to eat as much as possible right now because I don’t want to say ever that I should have had this or should have had that. After all… Even though I do need the transplant, we won’t know exactly when that will be because I need not just one organ but a few (so I have to wait for a donor and who knows when that will be). I need a small and large intestines, pancreas, liver, and stomach. We won’t know even how ‘urgent’ it is even though we know it is pretty urgent right now until the surgeons actually get inside and see the small intestines when they remove the colon. So I need to be fed someway or another because u can’t not eat at all… So they are hoping that I can be fed successfully through the ports.

We are hoping that it will work and I will be able to have the TPN through the central lines in my heart because I have failed TPN so many times already. I have had various ways of doctors trying to feed me such as through NG (nasogastric tubes), PICC lines, G -tubes, J-tubes, etc., but none have been successful.

I have to also decide what type of ports I want into my heart. There are really 4 types that I can have and they all have their benefits and negatives. Yet all go through the heart (through the vena cavas), it just a matter where it comes out of you. It really matters to me because it isn’t something that will just be in for a few days. This will be in for weeks… Possibly months.

The first way I can have it is by having it come out of my jugular vein in my neck, which I am kind of against. This one has the least complications but it’s so obvious because it’s coming out of your neck. I really don’t wanna see it. Plus something about knowing that it’s coming out of the ‘jugular’ really freaks me out. Yet, on the plus side of the coin… When it comes to her massive surgeries like the removal of the colon and transplant, I might get away with not having to have another ‘central line’ placed in me. It will be big enough for the TPN and to have so many fluids and blood and everything else that is needed during the surgeries. So that’s good. But it isn’t good enough reason for me to go with it.

The second option is one that comes out of the femoral artery, which is in the thigh/groin region. The doc said that he is not a fan of that one because it has a chance of too many infections, which is something I can’t afford.

Then third option is out of the clavicle region. It’s got a chance of causing a pneumothorax, which is the popping of a lung. I am a pro at that because I already had one of those and it was the worst. But the doc said that being so thin is a definitely plus with this line and diminishes the risk. This port is called a HICKMAN line and it will also hopefully enable me to not to need another line drawn during the surgery. This line will be big enough to hopefully do everything like the one from the jugular.

Finally… I can get a PICC line, which is out of the arm. I like this one because it is the nicest looking and everything, but the thing is that it can’t stay in as long as the others. The complication rate is the highest from this one and it will need to be changed more frequently than the others. It also has the higher chance of getting infected. But it’s also the tiniest too, which will also maybe make it more comfortable when they run the TPN because remember that I can’t even tolerate an IV running because it feels like glass going through my veins. But as since this line is the smallest and will essentially slow the rate of the TPN (which may make it feel better than the other lines), it will also mean that for sure I will have to have another central line placed for the colon and other massive surgeries because it won’t be big enough to run TPN and all those fluids and blood and everything else that is needed. In a emergency, you need to get lots of fluids in as possible… Especially blood. There’s no way that a PICC can do it. So even though it might be more ‘comfortable’ for TPN to be run, I don’t want to have to have another central line placed or have to constantly have this one changed either because of infections and stuff.

So I have a lot to think of. I probably will go with either a Hickman or PICC. But out of those two… Probably a Hickman. But I am not 100% sure. I still have some time to decide but I have to make my decision soon. The Hickman is also more intensive of an operation than the PICC… So I have a lot to consider.

Another drug that they are going to give me is a drug called EXPAREL. It’s a long lasting lidocaine.  The doctor said that when you get this drug, it kills the pain at the site for three days, whereas lidocaine is one temporary. He said that this drug works so well that they give it to people who have hernia surgery and they are walking around pain-free afterwards. He said, “it’s another amazing drug and trick up the sleeve!” The doctors will just keep injecting it at the sites when needed so that will help too.

He told me that they will not be afraid to give me pain meds either. Whereas when I am in the hospital here, the doctors and nurses are extremely afraid because of my low blood pressure and pulse. After all… These drugs drop pulses and blood pressure even more. Mine is already so low that sometimes I have to sleep with the paddles next to me just in case. But the doc said that here at the Cleveland Clinic… They won’t be like that. They are used to people in tough situations and such.

They also have at the Cleveland Clinic a team called a AMET team. You can activate it yourself if not doing well and in pain. When you activate it, the team (which is made up of a pulmonary doc, anesthesiologist, and two others) has to be at you within 10 min at the most. This made me feel better because if I am really not feeling well or having a autonomic dysfunction attack, I can activate them and they can put me immediately into a ketamine-induced coma to get me out of my suffering.

475519_10101228526974080_5778732194525628730_oI will be in the hospital basically the entire time. A lot of the time I will be in the ICU because of the care I need and because they don’t do ketamine on the regular floors. But the docs said that if I do get strong enough, I can go back to the hotel for a few nights until the next surgery to stay with my dad. The hotel is part of the hospital, so it isn’t really like I am ‘leaving’ the hospital per se and if anything goes wrong… I am a phone call away. In fact, I can even activate the AMET team from the hotel and they will bring me right into the ICU and put me into a ketamine-induced coma. I won’t have to ever worry about going through the ER because it would be a disaster

So besides the chest port and having the heart surgery to remove the calcium calcifications from the coronary arteries, I will need other surgeries besides the colon removal too. I will also need most likely to have a pacemaker placed in me because of my extreme bradycardia and Autonomic Dysfunction. However it isn’t a definite because they are hoping that my heart might ‘wake up’ and become stronger on its own once I start getting TPN. But it’s highly unlikely that will happen. If I do get the pacemaker, it will be a more intensive surgery than for a typical patient because I can’t have it placed where it would be normally placed. I need to have it put under the muscle and bone because of how thin I am. If we didn’t, it can easily erode the skin and become infected, which is something we can’t afford especially when it comes to the heart. You know?

They want me to have as much time with the TPN as possible so that I can be as strong as possible with for the removal of my colon since it is one massive operation. So whereas the chest ports are scheduled for April 18th, the removal of the colon is scheduled for may 11th. I am really getting sick and they really want me to come as soon as possible.  The soonest I get there… The sooner they will do the heart surgery to put the ports in and start the TPN. Not only will it hopefully save my life because I will be at the Cleveland Clinic sooner rather than later, but it will also give me more time with the TPN too for the colon surgery.

Even though that could be a big plus in going earlier, it would also mean staying there longer because they won’t up the removal of my colon. We can’t even pay for the surgeries and the stay the way it’s arranged now, which is for about 7-8 weeks (I will have to stay in the hospital and ICU for about a week after the colon is removed and then another week or two in the hotel to make certain that I am stable enough to come back to new York. After all… The Cleveland Clinic isn’t exactly around the corner so they have to make sure that I am string enough not to need them or that I won’t be having any emergencies. You know?

The one thing that stinks is that I’ll be missing mother’s day. I won’t even get to see my mom during all that time because she won’t be able to come with us. We can’t even afford the trio for my dad and me… There’s no way she can come too. Plus someone had to stay behind to try to keep things going and stuff. So thank goodness for Facetime because we will be doing that a lot.

One of the many good qualities of my doc also is that he knows where we are coming with due to the money issue. He was in a very similar boat as us because he didn’t grow up in a wealthy environment either. In fact he had to worry about money too when his father had back surgery at the Cleveland Clinic, so he knows where we r coming from. He told me that a room at the Cleveland Clinic back then was like $70,000.  So we really are going to need help even though the insurance company will cover some.

We know this stay is definitely not going to be cheap. That’s why we desperately need help in raising money. The hotel that we are staying at I’d giving us a break because I am a ‘transplant’ patient. I would never ever think that this hotel would cost so much especially since they know that it’s patients that stay there and it’s part of the hospital because it’s connected to it. I also can’t believe that only ‘transplant’ patients really get a discount. How are patients ever supposed to pay for staying at the hospital because even being a transplant patient and getting that huge discount… The cost is still astronomical (like over $130 per night). Gosh… When I think of spending about 8 weeks there, I get sick. I don’t know how we are going to afford this.

One benefit of being a patient of the Cleveland Clinic is that you can get any type of food delivered even if the place doesn’t technically deliver. The doc said that you can order basically all over the area and they will bring it. That’s good to know because the food St the hotel is also very expensive. My doc said that he has only eaten there maybe less than 10 times and it has only been when he had a gift certificate for like $50. He said that this just bought him a appetizer and a beer.

10320291_10101435229625310_984306568784720927_nSo if you can think of any way of fundraising… Much appreciated. I am still selling bracelets in blue or pink that says HELP SAVE FALLON for $5 please inbox me if interested. I also am selling chocolate lollipops in the shapes of roses. They cost $1 each. If interested in buying or even selling… Please inbox me. I desperately need all the help I can get because I can’t let money stand in the way anymore. I’m at the point where I’m barely hanging on and will not make it much longer. Please don’t let me die. Please help me.

10259947_10101435229645270_1139888954897600383_nBesides trying to make sure that we have the funds available to go to Cleveland Clinic in April, I have to really make sure that I can “hold out!” I really don’t want to be forced to go down earlier because we definitely can’t afford it. We definitely can’t afford any emergencies such as to have to go to the hospital and be heliported because it would be just so expensive. So I just gotta hang in there as long as possible!

It really hasn’t been easy though. In fact, I have been doing really badly lately. I think you probably figured that out though because of the amount of blogs that I have been writing. I used to be such a big writer and wrote all the time. Now it takes me so long to even get to write one.

I have been spending my days really unable to get out of bed. I have never been like this. I have always been a person that no matter what… I used to push myself out of bed and get dressed, and look as good as could be. I was a big believer that if you “looked great” than you “felt great.” But unfortunately I have been having a hard time just getting out of bed. I literally spend basically the whole entire day in bed because I am too weak and in pain to get out. I can’t believe what my life has turned into. In fact,

11020244_10101473448449480_8553685181197375770_n-1But at least I have my buddies to keep me company. My cat and dog are really my best friends. I don’t know what I would do without them. I am really going to miss them when I go to Cleveland. After all, my cat Missy is like my babysitter. She literally talks to me in cat language… meowing… like I can understand her. I talk back to her, but I of course have no idea what she is saying. She is my babysitter though because whenever I am doing worse than usual, she remains by my side and there have been so many times when she actually has alerted my parents that I am in distress. It is really amazing.

10690231_10101456818765500_6526701762188008418_nWhen we go to Cleveland though, I won’t have them. I am certainly going to miss them. Missy, my cat, will be celebrating her 11th birthday while I am gone. I don’t know what my dad is going to do. I certainly wish I could bring my dog for him. After all, Max is the only thing that calms him down. He is like my dad’s best friend even though Max is technically my dog. My dad is under so much stress and everything, but the only thing that calms him down is Max. Sometimes I think he is happier to see the dog than he is to see any of us when he comes home. He takes such good care of Max and spoils him badly.

In addition, the doctors also have recently tried changing my medication lately to try to make me more comfortable. I really don’t want to be on all these medications, as I take more medications than a 300 lb. person can tolerate and here I am… only 60 lbs. and I am taking all these medications that can probably kill a horse. I take everything from Methadone to Ketamine to Dilaudid to Morphine to Klonopin to more. I take on a daily basis over 50 pills. Yet, the doctors have told me that if I ever want to come off the meds, I would literally have to be placed in a coma and be detoxed because I would die otherwise since my body is so dependent on it.

So I am also hoping when I go to the Cleveland Clinic that this perhaps can be done because I will be in so many comas because of the surgeries. I am hoping and praying that they will be able to detox me and I won’t have to take all these pills anymore.

But in the meantime, there is this one medication that I am on called AVINZA, which is really morphine that my body is very heavily addicted to. This is the one drug that I can’t even go down any little bit of mg or even miss a time of dose because I will suffer big time for it and go into severe autonomic dysfunction. However, there is another drug that is morphine called KADIAN and we thought that it would be a better drug for me and wouldn’t be such a big deal to switch since it was still “morphine.” However, the switch tended to be a really BAD idea and I suffered big time for it. I ended up having to be switched back to the AVINZA. I was in so much pain that thankfully I had the procedure to work on my colon the following day, so the drugs that they gave me during the procedure helped a bit. I told the doctor that if I wasn’t there for my colon, I probably would have ended up in the ER with how badly I was feeling.

So I guess that is about it for right now. I have been trying to do some reading to keep my brain at least somewhat functioning as much as possible. So I am trying to read FIFTY SHADES OF GRAY. I am probably the only person in the world who hasn’t read it as of yet.

10897754_10101385674748680_1733024871216687875_nI want to thank you again for all your continued prayers and support. I definitely wouldn’t be able to make it this far without them. You really have played an important role in helping me survive up until now. I am so fortunate for all the wonderful and thoughtful donations that have been given and have given me the ability to receive treatment and receive my medication that I wouldn’t have been able to get otherwise. Please continue to pray and follow my story, as I need as many prayers as possible during this time of need.

Thanks again,



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February 25, 2015


Just wanted to write a quick little note of what is happening because a lot has taken place in the past couple of days. In addition I am not feeling well at all tonight. It is a feeling that I never have had before and I am hoping will pass, but if this is the end… I want to make sure that I get this last blog out. I also am hoping that by writing, it will help me get through the night because ideally I should be leaving for the hospital rather than writing this stupid thing… but like usual… I am staying at home… praying and hoping that this just ‘passes.’ After all, the hospital is the last place I want to be because they honestly don’t know what to do with me and only make things worse because I can’t be treated like a typical patient.

I spoke to my doctors in Cleveland Clinic, and they told me that I really need to get to them ASAP. They think that they can save my life and help me, but the trick is getting to them before it is too late. They also told me that if anything should ever happen to me, that I should transferred immediately to Cleveland Clinic. But of course it is easier said than done. We all know how expensive a transfer to Cleveland would be. I am sure that to be heliported… it is something that I am going to be responsible for… which is something I probably definitely can’t afford. I can’t even afford a plane ticket and a regular trip to Cleveland Clinic… let alone a heliported trip.

The doctors at the Cleveland Clinic have the advantage of getting a private plane sent for them wherever they are in the world; the plane will literally pick them up or a family member up and bring them to the Cleveland Clinic. Of course that comes at a cost though. My doctor said that one time he had it done for one of his buddies who go sick in Mexico and when he got the bill, he could have bought a house for that cost. But, my doctor did offer me that option if things got so very bad and nasty as well in addition to going to a local hospital and being heliported right to Cleveland. But like I said before… money is a huge problem and plays a huge role in every decision we make and as a result, I doubt that private plane will be sent here to come and get me.

I’ve just honestly been hanging out tonight and praying that it will all pass. I am extremely nervous because I never felt this way before. I know that I am rapidly deteriorating and even though in the past I have made it through all this “bad” stuff even though we were uncertain if I would last through the day/night…. This time we just are not quite sure. These are symptoms that I have not ever experienced. I always question when to push the panic button.

I don’t want to go to the hospital and be transferred if there is nothing to worry about. Yet, with everything that is happening to me… I don’t know when that time is to “worry about.” I know that in the past I have been fortunate to have these episodes to “pass” but I know I will not always be that lucky…. Especially when I am rapidly deteriorating and I am at the point where the wire can snap and the floor can fall out from underneath me at any time.

So when I asked the doctors this famous question, they really didn’t have an answer for me. They said, “If things are getting worse,” “If things are different,” etc.… much like today. But here I am… stupid me… still holding out and playing the waiting and seeing game. I am still hoping and praying that things will just pass even though I know one of these days I will not be so lucky especially since I am really worsening. It is only a matter of time that something really severe will happen and staying home is going to be the real wrong option. I am hoping that this is not one of these times.

But as I lay here waiting to see what happens and see if it passes, as I am short of breath and having severe chest pains and being extremely weak, I figured that I would write to you and let you all know what is happening just in case something happens and I can’t write for awhile, as well as a way to hopefully pass the time of night so hopefully this is just another time that the longer we wait…it will pass even though everything that I have tried that usually helps has not helped. I have tried all my meds and even had the ketamine tonight, but nothing is working. My body is still suffering with tremendous pain, spasms, pains in my chest, aspirating, thirst, etc. But I made it this long and I am hoping I can make it longer.

In fact… when I speak to my doctors, they are so surprised that I am even still alive. No doctor even believes that I am alive still. They thought that I would have ‘died’ a long time ago because of how sick I am and how much I weigh. After all… we are playing around with someone that only weighs in the 60s. But I have surprised them! I told them that I am a “fighter” and I am the energizer battery. I keep going and going and going. I am going to be their longest living patient. But even though in the past I have been able to fight so well and hide my illness, I have really taken a turn for the worse and to be quite honest with you… I honestly don’t know how much longer I can do this. I know that if I don’t get the help that I need soon… I am not going to make it much longer. I just don’t have the same capacity to “fight” anymore. I am just too tired! I am tired emotionally, physically, psychologically, and medically. I hope you can understand where I am coming from.

Anyway, I think it is important to write about it because not only do I need to get my thoughts out on paper and I promised to keep you up-to-date on everything that is happening, my next step in treatment is really dependent on others and I desperately need it to happen sooner rather than later because I don’t have a lot of time left unfortunately.

I know I have been pleading a lot lately for donations and for help in fundraising… and it can get quite annoying. However, take a step in my shoes because I don’t want to die. I know that I am on the brink of disaster and rapidly deteriorating, and yet… my next step in treatment that can potentially save my life is so dependent on others. We have tried so many years to pay for the care for me and unfortunately with an expensive disease that I have where you have to especially encounter traveling costs because only limited doctors throughout the world are knowledgeable about my illness and when only insurance companies will cover only so very much and force you to pay out-of-pocket because my case is a ‘rarity’ and requires expensive, experimental, and radical treatment… money does run out! It isn’t like I have been sick for a few days or even years either. So there is no wonder why we can’t afford treatment. After all, money doesn’t last forever nor does it grow on trees. So… in order for me to continue to receive the medical care that I desperately need, I really need the help of others because we can’t afford it on our own.

I am rapidly deteriorating and know that I am basically hanging on by a thread. I know how crucial these treatments are and how if I don’t get them, I will definitely die. But, I at least want a chance of living. That is why I am praying and pleading with everyone to please donate and help me raise money. I desperately want to get the funds because I need this treatment to save my life and I am too young to die. I haven’t yet got to experience “life”, as there is so much more to do. I have been diagnosed with this illness at such a young age that I never got to live out my life or my dreams. I never even became the doctor that I always dreamed of becoming so that I could help others. So I still have a lot to do… so hopefully I will still be able to have the ability to have it happen.

Well… everything is basically all set… all I need is the funds to get to Cleveland Clinic. I have been on the phone with my doctors constantly, as I even have their cell numbers. They know that if I have any chance at all… it is with them and it is a matter of getting to them before it is too late. I do have to say that I have never felt so comfortable with a team of doctors or hospital. After speaking to them constantly, I have been soooooo comfortable talking to them. They have really made me so less scared about everything that is going to happen when I get there.

You would think that with everything that I have been through and with all the hospitalizations that I have had… I would have experienced it all and there would not be any fear in me anymore. But to be honest… It is actually the reverse, I am so nervous because I know how hypersensitive I am and how I can’t be treated like a ‘typical’ patient and everything. I know how much worse that I usually get by going to the hospital, which is a huge reason why I don’t go to the hospital when I feel extremely ill and we don’t even know if I am going to make it through a day/night. But, I have learned how the Cleveland Clinic is so different than any other place I have ever been and that is why when I go to the hospital (even here)… the first thing that I say is to be “transferred” to Cleveland!

The doctors at the Cleveland Clinic are simply amazing… especially the doctors on my team. Now I know why they are ranked like the #1 hospital in the United States. My head doctor that is going to be taken care of me told me how much a ‘team’ approach goes into your care at the Cleveland Clinic. Even though I am going to be admitted under the surgeon for the transplant team, he will only be playing a limited role in my care, as he is just the ‘technician’ to do the cutting and transplant. I found that there are specific team members on my team that are terrific specialists and what makes them amazing also is that if they can’t ‘contribute’ big time to a patient’s care… they get ‘fired!’ so the Cleveland Clinic only has on staff the best and brightest doctors as it is!

I also feel better because my head doctor that took over my care is someone I trust. He admitted to me that I am “one big hot mess” and going to need A LOT of care and a lot of TLC. In fact, his actual role in the whole team is to be the anesthesiologist, but the entire team knows he is in charge because whatever he says goes. He is the most familiar with my illness and he knows what I am going to need (basically a private doctor around the clock and someone able to get something done in a minutes notice). Even though he can’t officially “admit” me under his name because he is just the anesthesiologist on the team, the whole team totally recognizes how he is in charge of me. In fact, he not only is the most knowledgeable in my care, and it going to be the most responsible, but he is also head of the anesthesiology dept. as well. He is the most amazing doctor I have ever met. He said that when I make it through this… he is going to write a paper on me and I will be able to ‘coauthor’ it.

He really makes me feel hopeful that things are going to happen. He even said I can call him anytime and if he is ever home and I need him… it would be no big deal for him to come into t he hospital for anything. He also told me that when I am hospitalized that even though he is basically head of the anesthesiology department, he will have his days focused on my care and therefore, he won’t be taking on a heavy case load like he normally does. I told Dr. Keebler that he is the doctor that I only hope that I become because he is such a terrific doctor. I told him also that when I come to see him that I am going to bring him “Keebler” cookies. He is willing to do anything and everything to help me out and be as honest as possible with me about everything. He said he will never lie to me about anything and I can always count on him to tell me the truth. He also said that he would always put me asleep for even procedures that patients are normally awake for. He is just one amazing doctor. Have I mentioned yet how outstanding he is?

Dr. Keebler, which happens to be his name and my miracle doctor as I tell him, knows exactly how I am feeling. Not only does he calm me down, but also he as has restored hope in me that I have lost a while ago. He told me that I could always count on him to tell me the honest and to tell me if I am “getting better” or even “getting worse!” He told me that even though I may not know what he has to say, he will always be utmost upfront with me and honest with me. It really makes me feel good that he will be HONEST with me and tell me everything straightforward because I have had so many doctors just hold me false information or just let me stay in a hospital and let me dwindle because they had no answers. Dr. Keebler knows exactly where we are coming from and understands our circumstances… especially out financial, which is a huge asset!

One thing that totally freaks me out is not being told the truth because due to my extreme gastroparesis, autonomic dysfunction, etc., I have trouble swallowing. Therefore, I can also lose the ability to swallow at anytime. I would hate for this to happen because it would take away my chances to “die peacefully.” I am sure that you all heard of the Elizabeth Maynard story by now. But let me tell you this… I have wanted this and talking about this long before she has… so it isn’t something that I heard and just decided to jump on it.

I don’t want to suffer anymore. I am so tired of suffering emotionally, physically, and psychologically. It isn’t fair that they can put animals to sleep so that they don’t have to “suffer” and yet for humans… we have to undergo all that hurt still. So I have begged my dad over and over again to take me to a state where I can “die with dignity.” With this… it means that I will be in control of my own death and if things get so bad that I can’t take it anymore… I can die at home peacefully. Even though my parents don’t want to hear of such a thing, it is something that I still carry with me everyday and something I think about everyday because I don’t want this suffering anymore.

I did not want this nightmare scenario for my family, which was my family to suffer more and to watch me deteriorate immensely or just lay there paralyzed. Because my brain is still kind of “healthy” and everything and I am so young, I was scared to physically to physically hang on for a long time even though I was suffering from all this. After all, no doctors thought I would have lasted this long and yet I am still here. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. So I started researching death with dignity. It is an end-of-life option for mentally competent, terminally ill patients with a prognosis of six months or less to live. It would enable me to use the medical practice of aid in dying: I could request and receive a prescription from a physician for medication that I could self-ingest to end my dying process if it becomes unbearable. I quickly decided that death with dignity was the best option for my family and me. But, of course it hasn’t been an easy process conniving my parents about this and in order to do this option right now, I can’t do it in New York. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms.

As of right now only 5 states have this ability and in order for this to happen, you have to be able to swallow the pills. I am so afraid that I am going to get so bad, which is a real possibility because I am already having difficulty swallowing and doctors literally have to remove things (i.e. pills) out of my esophagus because they don’t go down and dissolve where they are supposed to, that this won’t be an option to me anymore. I don’t want to be forced to stay like this and have this right taken away from me. So to know that I will have doctors tell me the truth, it really comforts me because I know that I will hopefully still have enough time even with all this to still go through with this plan should it be necessary instead of running out of time in the hospital. You know?

So as of right now I am scheduled to leave for the Cleveland Clinic April 20th. That leaves me about 1-½ months to get funds in order because we know that this trip is going to be extremely expensive, as we will have to worry about living in Cleveland for at least 7-8 weeks. Not only have to worry about paying for the treatment, traveling costs, hotel, etc., but I also have to worry about the medications and treatment cost of the day-to-day treatment here to buy me time so that I can get to Cleveland Clinic at that time. After all, money doesn’t grow on trees and my insurance doesn’t cover everything… in fact they cover very little both because my disease is extremely expensive, considered experimental, have treatments and I see doctors that are ‘out of state’ and therefore considered ‘out of network,’ and even the medications that I do take aren’t covered by insurances. I take over 50 pills daily, which also includes injections. These meds are extremely expensive… even with paying just the copayments. In addition, most of these meds aren’t even covered by insurance, as I have to get them out of the country or compounded especially for me or not even able to be ordered and bought in the United States. Even the stuff that are covered by the insurance such as the appointments, nothing is still “free” and I have to worry about the costly copayments that add up so quickly to astronomical means.

You know it is so sad of what the insurance does pay for. We need help even to help pay for our monthly insurance because if we don’t have any insurance whatsoever, we would be in even worse shape. Yet, it is amazing how we pay so much for insurance and yet when you need it… they barely pay for nothing.

Anyway… I really need to get to the Cleveland Clinic because they are absolutely the BEST place to be. They have drugs there that cannot be given or received anywhere else… which will hopefully help me get through the necessary surgeries that I require to save my life because I am supersensitive and these surgeries can extremely exacerbate my illness and spread it, which essentially can kill me.

Anyway… I am going to leave hopefully April 11th (if they doctors can’t get me there sooner) to start everything. The doctors would love to have me come down tomorrow to get things started, but unfortunately one of the surgeries to complete the puzzle, which is the major surgery to take out my colon, cannot be done until a latter date and although it would be at the very best interest to go and start the surgeries now and this way I can maximize the TPN usage and everything else, we really cannot wait that long in Cleveland until the transplant team removes my colon because we don’t have the finances to do so. As it is with putting all the surgeries together, we will have to stay there for at least 7-8 weeks, which is something we definitely don’t know how we are going to afford. My dad has to work as well because he owns his own business and there are bills to pay. Without him working, how are we going to make money to even attempt to pay for my medical bills or house bills at home? As it is we can’t even afford our mortgage and are at risk of having our house taken away. The bills are snowballing out of proportion at home because everything has been going towards my medical care, and as a result, we have not been able to pay the mortgage or the very necessary bills that need to be paid such as the water and electric bill, etc.   We even have trouble buying and putting food on the table. It is just simply a disaster and therefore, the less time my dad stays away from working… the better we are even though it may not be in the best interest for me medically. Yet, I would put myself on the back burner because my family is so important to me. I don’t want anything to happen them. They suffered and gave up enough for me. If anything ever happened to them or they lost the house or anything… I would never forgive myself!

So we really need to have this very well coordinated. My transplant surgeon to remove the colon has canceled all his surgeries because he is writing a huge paper and making a huge presentation at the end of August. So he is just focusing on that right now. But, knowing how horrible I am doing, we are hoping he will be able to make an exception and even though he won’t be around during the week to operate because of his lecture series, we are hoping that he perhaps can operate on a Saturday or something so that he can get both done and essentially I can then have my operation sooner rather than later.

The first step in the surgeries is getting a central line placed in me. I need it not only for surgery because I need emergency access into me and a place where they can replace fluids fast, but I also need a port where I can get nutrition such as TPN. The doctors want to try giving me TPN again through a central line, even though I have failed it miserably in the past because they are so afraid that I won’t be able to heal or make it through the surgery at all because I have no reserves to heal. After all, all I only weigh in the 60s and all my organs (including my brain and heat) are literally shutting down and starving for food!

Yet, any surgery or foreign objects that will be placed in me will cause me great harm and can literally kill me because it will stir up and exacerbate and spread my neurological disease (RSD) as well as my autonomic dysfunction. Therefore, I really need special care to be done to me when I am in Cleveland. Dr. Keebler, the anesthesiologist, will assume the primary role and make sure that I am comfortable and well taken care of. He said that he would prescribe me and use whatever is needed. He said, ‘if I break into autonomic dysfunction and need to be knocked out into a coma or something, I am only a phone call away from the ICU since that is the only place that this can happen.’ I will already be in the ICU plenty because I will be given plenty of drugs including Ketamine, which cannot be administered on a typical regular floor. He also said that I could activate an AMET team anytime… whether I am on the floor of the hospital or even the hotel.

When I activate an AMET team, a whole team will arrive in a matter of 10 minutes; they are a rapid response team for stabilization of medical or surgical in-patients. In addition, they are all buddies of his and he said that will mean that he will constantly be contacted and in the mix. So basically whatever he says goes and I am at a place and working with a doctor that is not afraid of taking chances. Whereas before, doctors and hospital staff were afraid of me because of how sick and fragile I am, he is not afraid. He is willing to do surgery with a heart rate in the 30s, give me as much pain medication with a heart rate like that blood pressure 70/30, etc. Whereas I am passed around like a hot potato everywhere else… I am not going to be one here. They get all the hot cases that no one wants to deal with.

So in short, the Cleveland Clinic Main Campus is a complex system of clinical and non-clinical areas covering several city blocks. A comprehensive MET system for the main campus has been effective in providing rapid response coverage to all areas. These MET team efforts have effectively reduced code blue events in clinical areas, as well as increase awareness and activation of AMET for non-code blue events. We consistently outperform comparison hospitals regarding survival metrics and gold standard metrics in reference to code blue or CPR performance. The metrics can be followed to increase training in in-patient areas with frequent responses and outpatient areas covered by MERT. AMET nurses are currently engaged in team training for many hospital patient care areas. So if I should have anything worsening with my illness or be getting an exacerbation of my autonomic dysfunction, I can activate this amazing system, which will bring me right to the ICU and they will ‘knock me out.’ I will be able to skip the ER and everything else… that is a blessing in itself because you know that can be a disaster going trough there because you can wait hours. Instead, I will be helped in a matter of minutes.

Putting the chest port in is going to be a complicated procedure. There are 3 places that we can place it… one in the jugular vein, one under the subclavical or one in the arm. In terms of getting TPN only… the arm is the best. But in terms being used for both the surgery and TPN, the one under the subclavical probably would work best. It will go right into my heart and hopefully prevent me from having to get another central port when I go in for surgery for the massive surgery to take out my colon.

We all know that this surgery is going to really mess around with my illness and I am going to need a lot of care afterwards. Therefore, doctor Keebler has told me that he will always be around…no matter what time of day to be contacted… whether it is by hospital staff or me. He even said that he would be taking on a ‘lighter’ schedule than usual because I am going to need a lot of care. Who could ask for a better doctor? He is such a caring doctor that was willing even to cancel his vacation in July if I am still there. I told him I wouldn’t want him to do something like that… but for him to offer something like this… you can see how much of a caring doctor he is.

He also promised me that he would be straightforward with me. He said that there is 2 ways this can go… either getting me better or getting me worst. He made me a promise that if I am getting worse, he will be the first to tell me and will not leave it up to my dad, someone who will do anything to keep his daughter alive, to make decisions. He told me that he would be an advocate for me so that I don’t end up living out my last days there or remaining on a ventilator or anything on those lines.

The trick to having all these upcoming operations is first to get this chest port in and the TPN running because I am going to need it in order to ‘heal’ from anything that occurring. So they are going to be using drugs that they don’t use elsewhere. They have drugs there such as ketamine to help, epidurals, experil, and this new drug that keeps you like in a comatose state but when someone wants to talk to you… you will be able to answer. I am not quite sure of the name, but I will find out. The experil is a long lasting lidocaine so it will last 3 days rather than wear off right away. So hopefully between everything… I will be kept comfortable.

I also will be evaluated for a pacemaker. So not only will I have heart surgery to put the central lines in, but I will most likely have it to place the pacemaker in as well. However, we want to see my reaction to the TPN before we do anything. Doctors here always wanted to do a pacemaker, but they were fearful of me because of my complicated history. They said that with the condition I am in and the disease and weight… They want to put the pacemaker under the bone. They can’t put it superficially like they usually do because I’m too small. They said it would be infected too easily and get eroded. So they said that the procedure would be much more intensive than the regular implanting of a pacemaker in a regular patient because I have to have the pacemaker put under the muscle and bone.   The docs think the pacemaker is a good idea because even though I may not officially warrant one… With the autonomic dysfunction and everything else… It’s a good idea. After all my pulse drops at night into the 30s and when I am hospitalized they usually have the paddles near me because I freak them out.

The doctors are going to try to make me as comfortable as possible so hopefully I will be able to tolerate enough TPN because I will definitely need it for the upcoming surgery that will be taking place May 11th, which is when my colon is being removed. That is going to be one massive surgery, but I am having the best surgeon in the world do the surgery. In fact, when we heard that my surgeon was going to be no accepting cases for awhile because of the fact that he had his paper to do… we tried to get in with another team such as the colorectal surgeons, and the surgeons said that I was way too complicated and need to be with Dr. Kareem, who is the head of transplant.

One thing that bothers me about having surgery this time is that I will miss my kittie’s birthday. She will be turning 11, but I told her that we will have the biggest birthday party before and after. After all, she is my best friend and she is the one who has been helping me get through all this, as well as being my babysitter. She will literally alert my parents if something is wrong with me. It is amazing. Even when I am upset, she literally will cat talk to me (“meow”) even though I don’t understand her. I don’t know what I would do without her. I only wish I could bring her.

These surgeries are going to be extremely massive and extremely complicated. In fact, I don’t even think that I am saying as much as what is really happening with what I am writing. It is so hard to explain because of how much is occurring. But what gives me the biggest sense of relief is to know that if my autonomic dysfunction should act up, they will just rush me into the ICU and knock me out so I don’t feel anything at all as well as if things start to go wrong or there is no hope, my doctors will tell me and will be my biggest affidavit. I would do anything not to disturb the autonomic dysfunction because once that is disturbed… the illness goes haywire. It is the worst thing that you can imagine.

11010962_10101458859121610_6311185503642836930_nMy team of doctors is the greatest. They are going to do anything and everything when I get there to help me. Everyone in the hospital is going to know me so they will know how to handle me. What a way to be famous, right? I did tell the doctors that I plan on going to Medical School when I am better and fulfilling my dreams… so with all these medications that they are giving me, I didn’t want them to keep messing around with my brain.

Gosh I can only imagine if this surgery can work and my body accepts the TPN. Unfortunately my mom won’t be able to come with us because we can’t afford it, so it will be just my dad and me. Someone also has to stay back and watch the house, watch the business, and pay the bills. I am going to basically have to get a whole new wardrobe when I am there because hopefully I will gain so much weight from the TPN and everything that I will no longer look like an emaciated skeleton.

The doctor said that not even will he take care of me, but he will take care of my dad as well. The food in the hotel (even though the hotel is part of the hospital) is so expensive. So he said that I can get food delivered from basically anywhere in Cleveland (even if they don’t deliver). I am not sure about the logistics about it, but it should definitely come in handy because my dad has to eat and he always starves when we go places. We skip breakfast and lunch and then order the cheapest on the menu for dinner. By the time we go home… it his pants are so big that the buckle has to be made so much tighter. What a way to lose weight, right? But to be there for that long period of time… he definitely can’t afford to do this usual thing.

10259947_10101435229645270_1139888954897600383_nSo that appears all that is happening. In the meantime my goal is to just be able to get my day-to-day treatment to buy me time until we get down there, as well as raise enough money to get there as well. I am still selling bracelets that say “HELP FALLON” for $5 and they come in pink or blue. I am also selling chocolate lollipops (roses) as well as candy boxes and chocolate boxes (much of what people in high school sell when they do fundraisers). Each candy box has different items such as M&Ms, snickers, Hershey’s, etc. Then I have also the regular chocolate bars. They all go for $1 a piece. Finally, I am also selling the monster candy that you buy when you go to a movie theater such as the over package of M&Ms, Hershey, Chocolate Bars, etc. and they go for $2. If interested in buying or selling… please let me know. You can contact me at Femirsky@gmail.com. Anything that you can do to help me raise funds would be much appreciated.

chocolate-rose-fundraiserI really have to get to Cleveland Clinic sooner rather than later because I am getting so much worse. Not only am I getting worse… but also my blood work is all over the place. My White Blood Count is extremely high, my APPT (clotting) is high, lipases high, etc. The doctors are worried that the stuff that is rotting in my colon is actually causing me great problems and leading me down the road to sepsis.

We already know that I have an extremely dilated colon and it has an intussusception. Most people would need immediate emergency surgery, but thankfully (in a weird kind of way) my colon is dilated where I was able to exist with this intussusception. However, it doesn’t appear that I can make it much longer. I am having a harder than ever time going to the bathroom and we are really worried that all the stuff that is rotting and intestines are going to rupture or something… and then we will have real problems. As it is… I am having stuff leaking from my colon from the stuff that is sitting in my colon rotting that is intoxicating all my organs and shutting them down. But now it appears to be getting worse because my white blood count is so high. Even with the “cleaning out” surgeries that I have been undergoing weekly, the white count is rising dramatically. Something desperately needs to be done before it is too late.

a-plus-variety-candy-fundraiserI hate to repeat myself, but I just don’t know what to make of all this.  I know I am getting worse.  I know my blood work is out of whack with potassium in the 2s and elevated sodium levels. I am not too worried about those levels because I have had those levels running for a while.  Every so often I will bounce into the low 3 levels for the potassium (and even possibly pull out a 3.4 but that is a rarity).   I have an extremely high amylase level (nearing 300) and my prolactin level is extremely high as well (well over 100).  In addition, my glucose level is of course low as it is in the 50s.  But that is nothing new because that usually runs me between eh 50s and 60s.  I also know that I have an intussusception in my colon and when I went for the CT of the colon and the x-ray, the radiologist was extremely concerned about it.  The doctors said that ’thank goodness my colon is so dilated and floppy because I have been able to live with the intussusception and other stuff whereas others would need emergency surgery.”  When I have went for colonoscopies and stuff, it literally will take a whole room of doctors and nurses pushing and pulling and trying to navigate my intestines because they are so dilated and ‘floppy.’  It literally takes the doctor with all that help over an hour just to even get to the cecum.  When I was in California, the couldn’t wait for my colon to come out because everyone wants to know what this thing looks like already with all that is happening with it. Then not to sound nasty or disgusting or anything…but I usually have been having trouble going to the bathroom in general, as it feels like I am hitting a wall and it won’t come out. Yet now I am having even more problems and it feels like glue.  I am also leaking mucous all over the place at times, which forces me to have to change my clothes/bedding sometimes like 3-5 times in a single night.  I don’t know where this mucous is coming from, but it is not stool.  I am also having a problem swallowing even more. I told you about having difficulty swallowing and how everything gets stuck (even doctors have tor remove pills and stuff when doing an endoscopy because they are literally just sitting in my esophagus).  Even this problem too is getting significantly worse.  It just feels like whatever I take in is like glue coming out. I am just a complete mess.

I am also constantly thirsty. Even though my proteins are supposedly ok, I am so thirsty.  I can never quench my thirst and the more I drink… the worse I aspirate and fill up my lungs with water.  It is horrible.  I even have at least 2 bags of IV a week because I have the ketamine procedure and when I go for the “cleaning out/sigmoidoscopy”.  But even with those procedures and getting the extra IV bags, I still can’t quench my thirst. But I don’t know what to do because despite how thirsty I am… the more that I drink… the worse the lungs fill up with water and the worse I aspirate.  That is why I tell you that I need the littlest amount of fluids possible and everything (not only does it hurt going in through an IV line, but I have found that I can even feel like my lungs are filling up with water and aspirate based on just getting water through an IV, which to me doesn’t make any sense since it is going through a vein and bypassing the other stuff. But I have found that even IV makes me fill up with water and aspirate worse.  I only stop aspirating and I am a bit better when I come to Cleveland because I don’t drink really… so I let myself ‘dry’ out.  You know?

I am also hoping that it is going to warm up soon. I can’t take this cold weather anymore. It actually froze my toilet pipes and we couldn’t use the toilet one day. So I used my own contraption of a space heater and a hair blower, as well as the extensions that you put on vacuum cleaners. I put the extensions on the hair blower and tried to warm up the pipes while I had the space heater going below in the downstairs bathroom, which was right below the upstairs bathroom (hot air rises). After 2 ½ hours… success!! When the ice finally broke in the wall, it sounded like rocks coming down the wall. My dad came running to make sure that the pipe didn’t bust. That would have been all we would have needed after all that. Now we don’t take any chances. If the temperature is going to drop that low… we put the space heater in the bathroom and shut the door so hopefully we don’t run into the same problem again.

Well… that appears to be everything. I have ketamine in a few hours. Thank goodness because I am not feeling well at all. I don’t know if it has anything to do with the fact that I went for the procedure to “clean me out” yesterday, but I am really suffering. Even when I was talking to my doctor tonight in Cleveland, he heard a drastic difference between today and yesterday. At least besides the ketamine, I will get getting my weekly dose of vitamins as well. When I go for ketamine weekly… Not only do I have ketamine and a block… But they also have me a vitamin bag as well. So I am getting vitamins once a week through IV because we all know I can’t absorb anything through my digestive system.

I wonder what they are going to do this time. Last time I went for ketamine I was suffering so much from headaches (much like I am doing now) and they ended up sticking needles in my occipital lobes and ran currents and radiofrequency through it. It really did help. But what didn’t make sense was that the sites where they placed the needles didn’t hurt until about 3-4 days afterwards. You would think that they would have hurt prior. So I don’t know why that happened.

In addition, I also underwent a block to try to control the pain. However, they didn’t use the regular steroids that they normally use. Instead, they used ketamine in the block to see if that would change anything. They didn’t tell me until afterwards, so it was kind of a ‘blinded study!” So with everything happening today and especially with everything happening and how I am feeling… I wonder what today is going to bring. I can’t wait to be knocked out with all that is happening

So what else is new? I am trying to keep my spirits up, but to be honest… it is hard. I have been trying to read even though it is getting harder and harder to concentrate. I have been trying to read FIFTY SHADES OF GREY. I know that I am so late with that book, but I figured better later than never. After all, the movie came out… so why not start to read the books. LOL. I think I did the same thing with the HARRY POTTER series. I don’t think I ever read those books even though people made such a big deal over them until the first movie was released. So hopefully this will be a great book and I will be able to finish it because that is a huge problem that I face.

In addition, I decided that I would try to make myself pancakes today. I know that I basically only have one more month of eating because I won’t be able to eat after these surgeries and until I get the transplant. I won’t know exactly when I will be getting the transplant until the surgery either because it all depends on what my small intestines look like when they take the colon out. So… I want to make sure that I try everything and taste everything so that even if I can’t get it down now… I can at least say I ‘tried’ it so I won’t miss it later on. So I decided to have pancakes and I was talked into making my own because I was told how ‘easy’ it was because it came all ‘complete’ and all you had to do was add water. Well… I did that and boy… my pancakes surely didn’t come out looking like pancakes. They came out looking like globs of something. At least they kinda tasted ok, but they definitely didn’t taste like pancakes.


Well… I guess that is about it for right now. I wrote enough and want to rest for a bit before I leave for the hospital for ketamine. Thanks again for all your kind support. Again, if you want to buy or sell candy, lollipops bracelets, etc. please let me know at Femirsky@gmail.com. Anyway of helping me to raise funds will be greatly appreciated.

Thanks again,


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February 14, 2015


I know… it has been quite some time since the last time I have written. It doesn’t mean that I had nothing to say or that nothing was the matter or that things weren’t worsening, but it was just the opposite. So much has actually been happening and to be quite frank with you, I am doing so horrible that writing these ‘blogs’ are actually getting harder to do.

But to be honest, even though these blogs might have to become less and less, I am hoping I will not have to stop them. These blogs are my only outlet to let me let out my feelings because I don’t have anyone to really ‘talk’ to (I can’t talk to my parents because they are working so hard and so overstressed that I don’t want to over burden them more with this stuff; Believe me… I already cause enough havoc and troubles in their lives. They are so exhausted as it is… they don’t need the extra burden of me laying my bothersome problems on then. Plus, with them working all the time. They come home so exhausted that they can’t really even handle anything more…. It also wouldn’t be fair to them either). In addition, this is a way for me to get my feelings out on paper and to seek things out. I also made a promise that I would let everyone know along the way what was happening because it is such a ‘mysterious’ disease that no one has really known about and this is the only way people are going to learn about it and bring attention towards it; it is the only way I can leave my legacy even though I would have much rather have became a doctor (my true dream). But things happen for a reason and this disease has not only been hurting me deeply all throughout it, but it has also taught me so much like how much to appreciate your health because it can be taken away in an instant and ‘health is wealth.’ Without your health, you really don’t have anything!

Finally, these blogs have been a way of trying to raise money for my lifesaving treatment. As you know these illness are very painful, debilitating, and life-threatening. They are also extremely costly to get the lifesaving treatment that I desperately need to save my life. But from being sick for such quite a while, we have used up all our funds and as a result, we don’t have the money for the treatment needed to save my life anymore. So I really need others to donate money so that I can get the treatment that I need to save my life. I know that I sound like a broken record already but without treatment I will die. I am rapidly deteriorating and desperately need help. Yet without the help of others… there is no way I can get it and the end result will be death. I am walking such a fine line right now that all I can do right now is plead through these letters.

Things have gotten so bad lately that I barely even move anymore. Any physical exertion is just way too much for me. I literally go up to my bedroom to take my medicine and pass out from them at 9 PM, and that is where I stay until about 1 in the afternoon the next day. Even that is getting too hard to get out of the bed at that time. But to spend so much time in bed… I know I have to at least get out of bed to do something before I officially ‘waste’ away. Even just getting up out of bed and going to the bathroom, which is the next room away is getting to be too much.

Anyway… I also wanted to write to you and let you know the latest as to what is happening. A lot has happened since the last blog. What a day I had today. It was such an unlucky day… but I was all putting it up to the fact of it being FRIDAY THE 13th. I am not usually “superstitious” and don’t believe in FRIDAY THE 13th, but with the luck that I was having… there was just no other answer. I had to blame it on something.

As usual, I had my usual surgery to clean out my intestines today because my GI tract is completely “dead.” Without the doctors cleaning them, nothing passes through and the doctors are afraid that I will perforate my intestines and I will go into sepsis or something and die. Then we would have a real disaster on our hands. Anything that I take in, whether it be food or meds that don’t end up getting vomited backup because of the extreme gastroparesis literally remains in my colon and rots. Therefore, I am getting toxins leaking into my bloodstream and they are intoxicating/poisoning my organs and brain, which is essentially killing me as well. So it is very important that I have these surgeries to try to clean out as much of the colon as possible because otherwise I am chancing perforating my intestines and going into Sepsis, as well as poisoning my entire body…. Including my brain.

However, due to my overall situation getting so much worse, my stomach is not emptying at all anymore basically. The anesthesiologists are getting petrified for putting me under anesthesia on a ‘full’ stomach because I can easily aspirate and then I will obviously die. So… the doctors are making me literally fast for 48-72 hours a week prior to the procedure, which is something I can’t afford. I weigh so little already (in the 60s) that even losing an ounce is extremely crucial and can be life and death.

So the doctors are saying that something has to be done ASAP and I have to get to Cleveland Clinic to have this surgery ASAP already because time is not on my side. I literally have only weeks on my side to live because if I don’t have these surgeries every week to be decompressed, I will die in a matter of weeks. The same goes the other way. If I fast for 48-72 hours every week so that I can have the surgeries to try to ‘buy’ this much needed time… I will die because I am going to lose way too much weight. So I am between a rock and a hard plate.

But in the meantime we don’t have the funds to go to Cleveland Clinic to have the necessary surgeries to save my life. That is why I am pleading to please help me with raising money because I desperately need these surgeries now or I am going to die. I desperately need surgery for my heart, placement of a central line, removal of my colon, and a multivisceral transplant. It is a lot and I will be there for quite some time. So not only do we have to worry about paying for the medical procedures, which thankfully we got the insurance to help out a bit with, but we still have to pay for the living expenses, medical expenses etc. In fact, we are even having trouble paying for my day-to-day treatment now to buy me time so that I can even make it to Cleveland. We can’t afford the appointments, copayments, procedures, medications, etc. because they are definitely not all covered by insurance and they are very expensive. My meds are extremely expensive, as I takeover 50 pills daily and they don’t even come from the US and some are injections. I also have to worry about traveling expenses and everything else. Our health insurance costs so very much as well, but we need to have it because the little that it does pay… at least it is paying for something. It stinks when you are sick. Health insurance is good when you don’t need it… once you do … watch out. Things are even more expensive for me too because all treatments that I get is out-of-the-state and therefore, I am not covered really by insurance.

So to start my day off horrible today, I didn’t have a good time today when I went for surgery. Unfortunately, we were a bit late to the hospital today because the girls in my doctor’s office told us a different time. I just so happened to have the recording on my voicemail to prove to the doctor that the girls told me a different time than I was supposed to be there, but the doctor didn’t want to hear it. Anyway… I ended up having to stay there even longer than usual and my meds wore off too during this time. So you can just imagine how much pain I was in. All I wanted was to go home already, but I knew how imperative and important it was to have this procedure doe.

Oh by the way… I found out that the anesthesiologist that I happened to love and used to always work on me happened to be the one that was the actual anesthesiologist that was in the room working on Joan Rivers when she died. It’s a shame it had to be her because she was really nice. I kept telling my dad that it had to be her, but we didn’t know for sure. However, the truth finally came out the other day that it was indeed her that was the anesthesiologist treating Joan when she died. I kept saying to myself…. It could have been me!!

So since that anesthesiologist hasn’t been there, I have been having another anesthesiologist usually taking care of me since the time of Joan River’s passing, which has been for the past 6 months. So at least this new anesthesiologist already knew all about me and how to take care of me, as I can’t be treated like a “normal” patient. Anyway… today they happened to have a brand new anesthesiologist and therefore she knew nothing about me. So… since she didn’t understand my case she ended up keep hurting me because I can’t be touched like a regular patient. For example, I am so extremely hypersensitive that everyone in the room even knows not to barely touch me until I am “knocked out” and that I can feel everything … even the gentlest breeze. The doctors also know how I can’t tolerate the IV and such, but she kept putting the IV on a fast rate, which felt like shards of glass through my veins. It was horrible and I couldn’t wait to get out of there.

Because we had to wait so long for the appointment and for me to recover this time, we also then ended up hitting rush hour traffic on the way home. So… this was just more added stress and pain that I didn’t need because I was already in enough pain as it was. All I wanted was to be home already in my own bed with everything happening… not to mention that I was freezing because of how cold it was outside and cold is definitely not good for me. When I got home, it literally took forever for me to warm up.

But thankfully, things started to change as the night proceeded. The doctor from the Cleveland Clinic called me tonight and I definitely wasn’t expecting it. Not only did he surprise me by calling, but also he surprised me by spending like 2 ½ hours on the phone with me until after midnight. He would have talked longer, but his phone got disconnected. I was totally shocked that he did something like that. Talk about a dedicated doctor.

I have the best doctors at the Cleveland Clinic. The doctor that called me tonight happened to be head of the anesthesiology department and one of the big shots. He was telling me everything that was going to be taking place when I come to Cleveland, as well as how desperately it was needed. He was dead tired, as he did 5 liver transplants in the past 5 days and he was totally exhausted and yet… he was on the phone with me all this time with me. He told me that even though I have lost a lot of ‘faith’ in doctors, I didn’t have to worry about that with him because he was an honest doc and was going to do everything in his power to help me. Most off… he wasn’t going to tell me any ‘lies’ or BS me like any of the other doctors have done!!

I am so fortunate to have him. Not only did he say that I could reach him any time of day… day or night and when I am in the hospital he would make sure things got done… he also told me that even though he is one of the big-shots in the hospital, he is going to make sure that EVERYBODY is familiar with me in the hospital. In fact, the whole hospital knows that when I am in the hospital, I take priority and if there is another case, I get the priority. He also said that no matter what I needed… he would be there to sedate me. He would be there to sedate me for the littlest procedure such as a stress test to the major stuff like the surgeries for the colectomy and the TPN. I honestly can’t believe that he did that.

The doctor said how I am in the best of hands with them. For the first surgery, I will be having the heart surgery as well as the placement of the central lines. I need the central lines because not only will I need them for the later surgeries, but also since I am getting so ill…. I need something so that the doctors can get emergency access into me. Since I can’t tolerate IVs, he is willing to put me to sleep first just by using gas, and then he will start the IV lines. He is also going to be using this new lidocaine that came out on the market that actually numbs the site for at least 3 days instead of just temporary like the regular lidocaine does.

As I need ketamine because of my illness, as ketamine is the only drug that really relieves the pain of this illness and has the potential to reverse this illness (if given in a high amount and that is why I need to go to Mexico because the amount I need is not FDA approved), it also has the potential to not make the disease spread and hold the disease at bay. Therefore, he will be using the ketamine during the operation and in the PACU. They will then try waking me up and re-evaluate me. If I am in bad shape, then they will put the ventilator back in me and keep me on the ketamine and bring me back to the ICU.

For the Colectomy, the same thing will happen except I will not be woken up. I will be immediately brought to the ICU afterwards and remain there for at least a week. So I will be unconscious for a good part of that week as well and breathing on the ventilator. The doctors want my body to ‘rest’ as much as possible.

In addition, since I am a ‘special’ case… he is willing to put me asleep for everything I need to go through including stress tests and everything else. All I need to do is page him or call him and he will come in from work or home and he will do it. What an amazing doctor. I also found out that my doctor also worked on all these famous people too like Robin Williams. He told me that at 3 AM he was giving the patients a big show two days after he had the big heart surgery at the Cleveland Clinic.

The Cleveland Clinic is really the best place for me. Between my team and the overall hospital, I am in really good hands. They have a team where if you are in pain, you can activate them and within 15 min they are at your bedside for pain management and everything else. They are really going to make sure that I receive the best care,

When I know more about what is going on… I will let you know, but the big thing now is getting there. I need to get there ASAP. So if you can think of any way of raising the funds so that I can get there…. I would appreciate it. After all, it is going to be quite expensive since we have to live there for quite some time,

a-plus-variety-candy-fundraiserI am selling chocolate and lollipops. If you are interested in selling a box, please let me know. The boxes contain all different types of candies as well as lollipops depending what you want. They even have boxes that just consist of “snacks!!” If interested, please email me at Femirsky@gmail.com. Any help would be much appreciative.

10259947_10101435229645270_1139888954897600383_nI am also selling the bracelets still that say “HELP FALLON”. They come in pink or blue and go for $5 each. If interested in purchasing or selling, please email me as well at Femirsky@gmail.com.

I also recently found a neurologist who knows my disease so incredibly well. HE knows it better than anyone else I ever knew. I am trying to get an appointment with him, but of course he doesn’t take insurance, so this of course going to be extremely expensive, and he also has a long waiting list. I have to wait until the summer to see him, which is time that I can’t afford to wait. But I still made the appointment because I am hoping I will be able to go for the surgeries in Cleveland Clinic and then I will be able to go to this doctor in summer to finally finish getting well. This doctor isn’t around the corner though, so besides him not taking insurance, we will also have traveling expenses as well because he works out of DREXEL UNIVERSITY in PA.

Well… that is about all for right now. I am not feeling well but I wanted to let you know some of what is happening. Hope you have a very Happy Valentine’s Day.

Thanks again for all your support.



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January 30, 2015


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,


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January 18, 2015


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.



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December 30, 2014


I am writing tonight because I am hoping that this time next week… I will be hopefully all packed and getting ready to leave for the Cleveland Clinic with my dad. I need to go so desperately because I am rapidly deteriorating and yet, we still don’t know if this trip is going to be possible because we don’t have the magical ingredient to make this all-possible… money. It is amazing how this stupid five-letter word rules the world and makes the ‘impossible’ happen. As P.T. Barnum once said, “Money is a terrible master but an excellent servant.”

Henry David Thoreau said it best when he said, “Wealth is the ability to fully experience life.” Gosh… when you don’t have money, it surely puts limits on everything no matter how hard you might want something, dream of achieving it, and try getting. The bottom line is that without “money,” nothing in life is possible. That is why I am so desperately for the help of others. I desperately need donations because without the help of their donations, I won’t be able to receive the much-needed life-saving treatment that I need to save my life. I am really deteriorating and need desperate help. However, it is so unfortunate that my medical treatment is too expensive and my family can’t afford it on our own.

So I am hoping and praying that we get the money somehow to send me to the Cleveland Clinic. We are scheduled to leave this time next week and hopefully we will be on that flight because my life depends on it. I desperately need to get there and then again on February 1st so that I can get the surgeries to save my life. I am only 32 years old and I am not ready to see the curtains close and for me to die yet. So I am keeping my fingers crossed, as I pray and hope that I will receive donations to allow me to go. If you would like to make a donation or if you can please spread my website link, please do so because the more people that are aware of my situation the better. The website of course is www.gofundme.com/help4Fallon.

I know this website might look a bit different than the previous website that was once was given, but the truth of the matter was that I changed the website because I figured it might do better if people realized the truth that we really don’t have any money whatsoever raised for my medical treatment. Yes we did raise some money on the last site, but it all went towards my medical treatment. We really wanted it to go towards a huge procedure like the ketamine coma in Mexico, but unfortunately it didn’t work out that way because the amount of money we received occurred over the course of 3 years. Through the course of three years, the amount of expenses that we had to put out far outweighed that amount and as a result, we could only use that money for the current medical treatment at that time to buy time. In other words, the money came in drips and drabs and as a result, we never had enough money at one time to do something that would cost a lot of money. Therefore, we were only able to put little Band-Aids on problems in hopes that it would help, but unfortunately, you can’t prevent the inevitable. If I am going to really honestly get better, we really need to take drastic measures and get to the root of the matter. But in doing so, we need the finances and they can’t come in drips and drabs over the course of 3 years. You know?

So I am hoping that this website will be the start of a successful fundraising campaign that will end up saving my life in the end. Please remember this new website and please spread word of it because I need this treatment to save my life. Please remember that the only place SUCCESS becomes before WORD is in the dictionary, so it is going to take some work in order for this to be accomplished. So please help me.

10897784_10101384184599950_9141422603206107379_nI am still pack and planning on going to Cleveland Clinic, as my father and I are hoping to make it to the Cleveland clinic on Tuesday but it’s still very dependent on funds but honestly… It’s getting to be a matter of life and death at this point (like you don’t already know that). But unfortunately I wasn’t born with a silver spoon in my mouth and since it is very expensive… I’m kinda out of luck and just hoping and praying that the much needed funds come in. We are making the preparations though that we are going because we are hoping that it will be a ‘go’ and all will go well with the trip but in reality… Who knows until the very last minute?

Even though we will only be going this time for about a week, we still need plenty of funds because we need to pay for traveling expenses, hotel, doctor appointments, copayments, living expenses, and testing copayments. Everything that I have done at the Cleveland Clinic, whether it is a test (i.e. blood test or an x-ray) or even seeing a doctor will encompass paying at the very least a high copayment, which will clearly add up. The plan when we I go down this time to Cleveland Clinic was to meet with all the top specialists and to finalize everything, go for final testing, etc. so that we can return on February 1st for at least 7 weeks so I can have multiple surgeries to save my life.

But unfortunately, I have really been deteriorating and getting worse and it is at the point that my father and I are honestly scared that once we get there this time that they are going to end up keeping me there. We know that I am getting a lot worse and even though February 1st is not that far away, we don’t know if they are going to let me home or keep me to do “emergency” surgery. Not only have I been suffering in pain more than usual, but know that something happened inside to my colon because of what the doctors here are seeing and from the symptoms I am experiencing. The doctors want me to go for an x-ray to find out definitely what has occurred as they think I have a huge blockage or a twist, but I refuse to go. We already know that I have intussusceptions and blockages in my colon but thankfully in a way my colon has been so “dead” and dilated that I have been able to live with them whereas a normal person would need emergency surgery. So, I refuse to go and get the x-rays to know definitely what it is until we get to the Cleveland Clinic because I don’t need to know ahead of time bad news. We know there is something definitely wrong. Knowing exactly what it is will not change anything except state that there is something else going on that needs “emergency surgery” and if I can’t afford it, I don’t want to know that I have something added to my list of other problems that need help desperately but I can’t get the necessary life-saving treatment because we can’t afford it. So I will just wait until we get to the Cleveland Clinic because I know that whatever is happening is going to need surgery and the only place that is going to be able to occur is at the Cleveland Clinic.

In the mealtime, I went to the ENT doc today and didn’t get good news. To begin with… The doctor didn’t like the way I looked. Then again what doctor does? He said that he could see that I was extremely ‘malnourished’ (like we didn’t know that already) because he could see al the muscle wasting in my face as well as everywhere else. But he said that when you see the muscle wasting in the face like I have… It means it is really bad. I honestly don’t see a good part to it, as I think any malnourishment and muscle wasting is bad. But he said that I need urgent attention and that I need help desperately. He was honestly shocked that I was still even walking around. But then again so are most other doctors.

They don’t know how I am surviving, but somehow I am. I guess I am invincible. Lol. But this person is running out of time and I can honestly feel a huge difference from how I was before and how I am now. The doctors keep saying how I am a ‘time bomb waiting to go off’ but with what is occurring lately and how I’ve been feeling… I think I’ve been detonated. I need help and help now because I’m not going to make it much longer. I keep telling doctors that I am the “Energizer bunny rabbit” and that I just “keep going and going and going” but the truth is that my batteries are being depleted. I really honestly don’t know how much longer that I can hang on. I am so tired from the physical and emotional pain. I just can’t take it anymore.

Anyway, of course I had wax in my ears (like I didn’t know that already). But the amount of discomfort was of course much worse than the amount of wax that was in my ears, but you know that’s to be expected because of my illness and how I am so hypersensitive of everything. The slightest thing is such a MAJOR thing for me. It stinks.

Not only did I have wax, but the doctor has difficulty getting it out too. It turns out that since my body is so deteriorated and so ‘dried out’, the wax was really stuck in the ear canal and it wouldn’t loosen up. So you can just imagine how much pain I was in when he was trying to use his tools to grab the wax and basically tear it off the canal because it refused to come off. I was definitely not a happy camper.

The doctor told me that since I am so dry in my ears that he wants me to put mineral oil in them. Have you ever heard of such a thing? I am a little skeptic of putting anything in my ears, but he says it is necessary to keep them very well lubricated because they were extremely dry and that’s why I was so uncomfortable and why the wax was getting stuck and not coming out easily either.

To make matters worse he looked at my nose because I was complaining about no feeling in the left nostril and difficulty breathing in that nostril as well. I thought perhaps there was a pimple or something in the nostril that was causing some irritation or something but the doctor said that he couldn’t see anything. All he said he saw was be same problem that was in the ears, which was that it was extremely dry and crusty. So he said that I needed to lubricate that as well. So he gave me Aquaphor to put in my nose, which I was really surprised because I always brought of it being a body moisturizer or hand lotion. I never thought it was possible to use it in your nostrils. But whatever works, right?

The doctor did notice though that I drooled a lot. It’s something that I have been extremely self-conscious about and didn’t know why that was occurring. He said that the reason that this was occurring was because of the ketamine. He said that besides the autonomic dysfunction, ketamine is notorious for causing excessive salvation. So at least I know why I am drooling so much. After all… I get so much ketamine in me that there’s no wonder I drool. I have the weekly infusions/comas of ketamine and then I have the ketamine that I take at home in the nasal spray.

I even asked the doctor, “if my mouth is so moist and I am drooling because of the ketamine, why am I so thirsty? In addition, if I am given bags of IV 2 days a week because I am given it when I go for the day when I have the ketamine infusion/coma and then when I go for the intestinal cleaning, why am I so thirsty?” he told me that it was because I am basically all dried up. He said that even though my salivary glands are producing the drooling because of the ketamine, I just can’t quench my thirst because I am extremely dehydrated and all my organs are suffering.

I also told him about the fact that I can’t clear my secretions anymore especially the more that I drink. I am literally drowning in my own fluids. The doctor told me that drinking is the hardest thing for my body to process. He said that in order for me to drink I can ONLY have thick fluids such as slushies and such. But even with that… it just continues to get worse.   I a m just too tired of suffering already.

The doctor was also very scared for the upcoming surgeries at the Cleveland Clinic. He knows how very taxing it will be on my body and how my body is not even up to “surgical condition.” These surgeries that I will be having are one of the most dangerous, radical, and intense surgeries that a person can have especially since they don’t deal with just connecting nerves. These surgeries entail connecting so many vessels within the body and it also encompasses dealing with an area where bacteria flourishes. These surgeries are so complicated that they only do surgeries like the multivisceral transplant in like 6 hospitals throughout the United States.

Well in the morning later today I have the cardiologist. I need to have my heart checked out because it isn’t doing too well also. I am seeing a top-notch heart doctor when I go to the Cleveland Clinic next week. However, I still need a cardiologist in the area in case I am in New York and something happens. I already have severe heart issues that already run in my family such as heart disease and everyone in my dad’s family having sever heart attacks (except him thankfully). I already have coronary calcifications that have to be removed from the coronary artery and severe bradycardia. In fact, my heart rate gets so low that I am always setting off the machines when I go for procedures and everything. Even when I am hospitalized, they have me sleeping with the paddles by my bedside because my heart rate drops so very low and they are so afraid. So we will see what this appointment has to bring. At least by going for this appointment I won’t be in for too many surprises when I see the cardiologist in Cleveland.

Then on Wednesday I have my surgery to clean out my intestines. However, this time is going to be a little different than the previous ones. First of all, I won’t be having my usual GI doctor doing it. I am having his partner do it instead because of the scheduling time. I am kinda happy about having a his partner because it is a new face and brain to go inside me and therefore, maybe he could see something or discover something that my current GI doc was missing… you know? But I am also nervous because since I am so fragile and anything can happen, he doesn’t really know my body and how it reacts to everything like my GI does. After all, I do have the autonomic dysfunction and the slightest thing sets it off. I am sure though that it will be ok and that my current GI doc has told him everything, but I am still nervous.

I am not only getting my intestines cleaned out so that I don’t hopefully rupture them or go into sepsis, but I am also having an endoscopy and having my esophagus looked at as well because my entire GI system is basically dead and I have been having issues especially with my esophagus lately too. Since my esophagus doesn’t move, pills do not usually dissolve in the stomach where they should be dissolving. Instead, they end up being dislodged in my esophagus and dissolving there, which is extremely painful. In fact, there are so many times that the doctors have to literally go inside me and actually push the pills down because they see that they are stuck in the esophagus and not moving. So, I really don’t know if it is because of this factor but I am having a really hard time swallowing because it burns going down. It literally feels like my esophagus is burnt to a crisp. So the doctors want to see what exactly is going on.

So there is never a dull moment. Thursday is New Years Day. I will be spending it as I always do. I will probably be in my bed watching the ball drop with my cat, Missy. It is just another year, but hopefully this will ne the upcoming year that I will get well and get my life back.

Speaking of Missy, she has been getting hilarious. Her new thing now is that when she wants to eat in the morning she will keep nudging my dad until he gets up. However, if he doesn’t move fast enough, guess what she ends up doing? She will end up biting his nose. I think it is so funny.

I also have scheduled another ketamine coma before I leave for Cleveland. Hopefully I will be able to go on Friday instead of when it is originally scheduled, which is Monday. I really hope I will be able to change it because not only am I suffering and need it ASAP, but it will be really hard to undergo ketamine and then get on a plane the following morning to go to Cleveland. After all, even though I love to go under ketamine and it really does help me, the after effects are not really al that pleasant and my body kind of “pays me back” too for messing around with it.

Plus… it takes a few days for my body to acclimate back to the way my body usually is after Ketamine. Even though I feel so much better under ketamine, when I come out of ketamine, I end up feeling a bit worse for a while because of the autonomic dysfunction and everything and it takes a while for my body to stabilize. However, I have an appointment in Cleveland with the top doc for my disease, as there are only very few doctors that are knowledgeable about my illness and he is one of them, and therefore, I want him to see the true disease and everything so that he knows how best to treat me. I know that there has been talk of having brain surgery so that they can put a machine in my brain, as well as other things, and that is why I think it is important to see how I am on a typical day with this illness and not when my body is fluctuating and trying to re-stabilize itself after having the ketamine. You know? Plus, it means also one more day for my dad to take off and it makes it even more difficult especially since it is exactly the day before we leave.

My dad keeps saying that he is only bringing a week’s worth of clothes. I told him that I am doing the same. If anything, he is going to learn how to do the wash. He laughs over this. To see my dad actually doing the wash… it would be funny actually.

So that appears to be all that is happening. I really don’t know how to pack or what to expect because even though I am only supposed to be going to Cleveland Clinic for the week, which is just to see some specialists, finalize some things, and do the final tests so that when I come back February 1st I will be able to undergo the surgeries that I need to save my life, I am so afraid that they will end up keeping me there now because of what is happening in my intestines. Part of me says that no matter what that they will save it until when I come back in February because they need to do the heart surgery first so that the central line can be put in and this way they will not only have central and emergency access into me, but they will also have a way of administering TPN into me under ketamine directly into my heart and making me stronger hopefully for the surgeries so I can better survive it. But then on the next breath I know something is seriously wrong because it feels like I am kicked on the side and I can’t get up from it and nothing is moving through… not even gas, so it is kinda an emergency. So…. Everything is just a plain mess! So I guess we will have to see what happens or if I get further information from Cleveland as we get closer because I plan on speaking with them as well and seeing what they say prior to going down.

So it has been a long week already and it will be a long and tiring week until we hopefully leave, which I am hoping and praying that we do. I desperately need to go because I am getting so bad. I can’t even manage to get out of bed anymore. I literally go to bed at 9 PM and can’t get out of bed until noon the next day. By the time I get up, it is time to take meds, eat, vomit, and the cycle starts all over again. This isn’t a life to have. I would do anything to have my life back. I can’t take the suffering anymore… both physically and emotionally. There is not a second that doesn’t go by that I don’t suffer except when I am under anesthesia or ketamine, which I wish I could live under permanently. I have to literally change my bed sheets every day because I keep spitting up blood all throughout the night and when I wake up my bedding is covered in blood, as well as drool. I

1602087_10101383726996990_1131379420405191149_oMy dad keeps promising that he is “not going to let me die” and that he is going to get me to Cleveland. But he and I both know it is not in his hands. I know that if he could do anything that he would. I know that if he could take this illness away…even for a second… he would, but unfortunately he can’t. He wouldn’t be able to handle this illness anyway. After all, I don’t wish this on my worse enemy. It is the worst thing you can ever imagine. I hate seeing the pain in my father’s eyes because he wants so desperately to help me and yet… he knows that no matter how much he wants to and how hard he tries… he just can’t. He even works so hard to try to get me the money so I can get the needed lifesaving treatments and he can’t even do that. So I know it is really taking a toll on him. I am so afraid that something is going to happen to him with all this stress. If something would ever happen to my dad… I would never forgive myself. After all, he is my dad, my superman, and my best friend. I would be lost and never even be here today if it wasn’t for him.

I hate ruining my parents lives because they can’t do anything because of me and they have no money because of me. They are working harder than ever and have nothing to show for it because of me. The are in such financial debt because of me. They should be at a point in their lives where they should be enjoying themselves. Instead… they are suffering and working harder than ever because of me. I know it hurts them that they can’t go out and how they see other couples going out, other families going on vacation, going out for dinner, doing fun things, etc. and we cannot. I just wish that I could make it better for them.

Well, in the meantime that I am awaiting to go to Cleveland Clinic, I have been on a movie frenzy. I have been in so much pain and since I can’t really do anything out-of-bed, I have been watching plenty of movies. I have seen GONE GIRL (which was very good), ANNIE (which was pretty good but kinda childish), THE INTERVIEW (only wanted to see it because of the big deal over it, but it really stunk), JUMP STREET 22 (very good), and THIS IS WHERE I LEAVE YOU (absolutely loved). I am awaiting to see INTO THE WOODS. I can’t wait to see that movie. That was actually the first play I ever saw on Broadway.

I have also tried doing some reading. I am reading Sophie Kinsella’s new book called “SHOPAHOLIC TO THE STARS!” I love this author. She writes really great books. I just actually found out that one of her books, CONFESSIONS OF A SHOPAHOLIC was made into a movie. I am going to have to check that out.

I have also made my dad a FACEBOOK page finally. He has been joining the 21st century slowly but surely. It has taken him awhile and he has been fighting it tooth and nail, but each time he does something, he loves it so much and can’t stop using it. It took him forever to get an iPhone and now that he has one, he can’t keep off of it. It’s like he best thing to happen to happen I to him. So check out his new profile on Facebook (Perry Mirsky) and add him as a friend.

Well… I guess I wrote enough for tonight. Please honestly help me raise money so that I can get the lifesaving treatment I that I need so badly. Any help that you can give me, I would really appreciate. If you have any comments or questions on how you can help, please contact me at Femirsky@gmail.com. If you can, please spread the link of my fundraising site, which is www.gofundme.com/help4Falllon because I desperately need help and all donations are appreciative. Even the littlest donation makes a difference because that makes it less that we have to come up with and makes it closer for us to get to Cleveland. As Theodore Roosevelt once said, “Believe you can and you are halfway there!” I really believe that there are nice, generous and caring people in the world who would be willing to help me by giving me a thoughtful donation so that I can get the lifesaving treatment that I desperately need. It is so sad how Money alone sets all the world in motion!

1656433_10101040042762950_526420285_nWe are also still selling bracelets that come in pink or blue for $5 each. They say “HELP FALLON FIGHT” and they are the ‘livestrong” bracelets that you usually see people wearing. If interested, please let me know at Femirsky@gmail.com.

Thanks again for all your encouragement and support.

Hope you had a great Holiday season. Happy a happy and healthy New Year if I don’t write again beforehand.



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December 26, 2014


I figured that since I started this new website, I should introduce myself and let you know a little about me. This site is not only a way of enabling me to blog, but also a way to fundraise money for life-saving treatment that I desperately need in order to stay alive. I am rapidly deteriorating and unfortunately, my treatment is too expensive for my family to afford alone. So… unless I receive donations, I won’t be able to get the very much-needed lifesaving treatment that I desperately need. I also wanted to always make a difference in the world and therefore, I am hoping that this website will also bring awareness to my illness, which is rare, extremely painful and debilitating, and life threatening.

This blog is about coming to terms with the life you have. I would like to tell you all about me without mentioning illness once, but that isn’t the life I have. Unfortunately, I have been struck with life-threatening illnesses that are extremely painful and I will soon die from unless I get help from. I suffer from Reflex Sympathetic Dystrophy, severe dysautonomia, severe gastroparesis, osteonecrosis, and a pituitary brain tumor.

It is very hard to actually understand my illness because it’s not easy for people to see. My entire nervous system is basically out of whack, and the part of my brain that controls my autonomic nervous system (which controls all the body’s autonomic functions) doesn’t work properly.

Dysautonomia is malfunction of the autonomic nervous system. The autonomic nervous system controls the “autonomic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with dysautonomia have trouble regulating these symptoms and can result in various problems like I have such as fainting, unstable blood pressure, abnormal heart rates, malnutrition, and even death.

The autonomic nervous system is composed of two branches: the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS). The SNS controls the more active “fight or flight” responses such as increased heart rate and blood pressure, whereas the PNS can be thought of as the “rest and digest” part because it slows down the heart rate and aides in digestion. In a healthy person, these systems are balanced and react correctly to outside stimuli, such as temperature, stress, and gravity. When they are out of balance and do not function properly, autonomic dysfunction (or dysautonomia) occur. People with dysautonomia, like me, have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, bradycardia, gastroparesis, and more

I never thought that this would happen to me. I was always a happy, intelligent, and competitive person. I received excellent grades, was a competitive figure skater, a superb violinist who was Concert Mistress and even scored a perfect score on the highest level of competition, and had a wonderful social life. I even aspired and dreamed of becoming a doctor so that I could help others. However, what my life was up through high school and what it is now has done a total 180.

I was diagnosed in college with this illness. Even though I did have symptoms prior to having foot surgery in college, it definitely became apparent that I had this illness after I went for that surgery because so many aspects of my autonomic nervous system were demanding attention. I became crippled with pain 24/7, my GI track shut down, I was fainting, I received pain signals that were way out of proportion, etc. It appeared that my entire body was on a “fight or flight” response and it couldn’t be shut off.

My disease has been progressive and it hasn’t been easy to watch my life just be taken from me. , I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: 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. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.

Eventually according to doctors, I will have catastrophic autonomic failure. That means an end to even the most important Autonomic Nervous System functions… even breathing. But, that is something I am hoping to delay and hoping to avoid. That is why I am begging and pleading for help. I desperately need medical treatment, but unfortunately we cannot afford it. That is why I am asking for donations. It doesn’t matter how much is donated because all is appreciated. Even $1 is one less dollar than we have to come up with.

So in the meantime, I am busy trying to hold on and praying that I will be able to receive the treatment that I need to save my life. I am building memories not only for myself, but so my family will have them as well. I am only hoping that I will one day regain the life that I was robbed and I will be able to become that doctor that I always dreamt of being so that I can help others and they won’t have to suffer like I am.

Sometimes it is hard for people to grasp how very sick I am. I try my hardest to look my very best because I believe that if you “look good… you feel good!!” So beneath all that makeup that one sees is a person that is very ill and needs desperate help NOW.

The New Year is quickly approaching and that means that it is a time to start over. I only hope and pray that this will be my year… a year that I will be able to get well and am normal.  It better be because I don’t know honestly how much more of this I can take. My body is just giving up. My entire GI track is basically ‘dead.’

I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition; I cannot keep any food or liquids in me, and I vomit constantly. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body is just shutting down. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8.   In addition, it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia. Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am ‘cured’ and able to live my life to the fullest!

Despite medications and treatments, I just continue to deteriorate.   In terms of procedures, I have undergone surgeries such as implanting a stimulator (which had to be removed), sympathectomy, epidurals, Botox, etc. I also tried aquatherapy, blocks, physical therapy, occupational therapy, massage therapy, acupuncture, ketamine infusions, and hyperbaric therapy. I take over 50 pills and injections daily just to get by. Such medications include laxatives, morphine, dilaudid, ketamine and more. My medications are extremely expensive and I can’t even get them all in the United States. This forces me to pay all out-of-pocket for them because they are gotten in other countries.

Many doctors have told me that the amount of medications that I am taking would be enough to “kill a horse”—yet they have had little to no effect on me. I have even been undergoing weekly ketamine comas just to try to alleviate the pain and hope that the disease doesn’t continue to spread like a wildflower. I have deteriorated so much and the pain has been so profound that I must undergo the most extreme and expensive of therapies—being placed under a Ketamine coma—to hopefully reset the pain connections of the body and fix the nervous system. This coma in Mexico 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. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU.   There are significant risks, but it continues to be my only hope because there are really no other options available. For the patients that have had it previously, it has worked “miracles.” Unless something is done soon, I will die.

But unfortunately, the amount of ketamine that I really do require is not FDA approved and can only be done outside the USA, which is in Mexico. I would love to go to Mexico to have this radical coma, but unfortunately it is so expensive and will cost us over $100,000. So I am only hoping that through donations that one-day I will be able to get that coma because that is the only real way to “cure” the autonomic problem. I will be the 38th patient to undergo it.

But a more important and imperative treatment right now is that I get to the Cleveland Clinic for massive surgeries. Since I have severe gastroparesis, I cannot eat and my GI track is basically dead. I only weigh in the 60s. I need and require is a complete colectomy. I have toxins spilling into my bloodstream that is poisoning my organs and brain and shutting them down as well. Unless something is done quickly, I will soon die. I also require a multivisceral transplant, which entails getting a new stomach, small and large intestine, pancreas, and liver. However, we won’t know until the colon is removed how urgent it is needed to have that transplant because it is all dependent on what the small intestines looks like.

I am scheduled to have massive surgeries in Cleveland starting February 1st. However, it is all contingent on whether we have the funds. It is going to be extremely expensive, as we will be there for at least 6-7 weeks. In addition, my father will be with me during this time and as a result, he won’t be able to work and make an income during this time. So it will be even harder than ever for us to pay for something like this because he won’t be pulling an income. Not only can’t we pay for my current treatment, but also we exhausted so much money on my illness that the bills are just snow blowing out of proportion. We are having an extremely difficult time paying all our bills including mortgage, heating, water, phone, etc. Even putting food on the table is difficult because of the lack of money in combination with the high prices of food. But if I am going to have a chance of living, I have to go in February to have these surgeries.

What a way to celebrate a birthday! My birthday will be during that time, as it is February 7th. But what better present would there be than getting my life back? I am only hoping that this will be how it goes and how it works out.

I am scheduled to undergo heart surgery February 2nd, as I need to have central lines placed in me and calcifications removed out of the coronary artery. It is so important to have these central lines placed because of how ill I am getting. It will give them an emergency access port into me so that I can be given medications and everything. Plus, it will save me from being stuck all the time with needles. I not only need it because of how sick I am getting, but I need it for the upcoming surgery because it is extremely massive and will definitely need that “emergency” port. The doctors also want to use that port to deliver TPN to me for about 2 weeks prior to the massive surgery to remove my colon. Since I only weigh in the 60s, I really have no reserves to survive the surgery or to ‘recover.’ If I should get an infection, it would really be devastating. So the doctors are hoping that by giving me some TPN, it will help me better recover.

I have had feeding tubes in the past, but they have all failed me. I have had nasogastric tubes, G-tubes, J-tubes, etc. but they all haven’t worked because of how sensitive I am. I can’t tolerate anything that is “strange” or “foreign” from entering my body because it stirs up my autonomic nervous system and causes it to further malfunction. Even having an IV in me is a killer because I can literally feel the fluid running through my veins. No matter how little they titrate the amount, I can always feel it, and it causes me severe pain and discomfort. However, this time they are hoping by placing the TPN in a central line such as in the neck and directly into the heart in combination with keeping me on ketamine, they are hoping that I will be able to tolerate it. So we will see. We are keeping our fingers crossed.

I am having such a difficult time eating. Even the very few things that I was able to enjoy beforehand are not able to get down now. I basically just live on ice cream and egg whites… and even that is starting to get impossible to get down. Even medication is horrible to get down, so in a way I am kind of excited to get the Central Line because it will save me from having to swallow all those pills because they are getting so difficult to do so. Even drinking is getting to be impossible as well. I can only drink liquids that are made into slushies. The reason is that it slows the rate that it enters my body and the amount. Even the slightest amount that is too much or consumed too fast for my body will cause extreme havoc on my body and cause exacerbation of the autonomic dysfunction.

If all goes well, I will be having my colon removed on February 18th. It is a massive procedure and the doctors honestly can’t wait to get that colon out of me. It is causing me a lot of harm because it is not only ‘dead’ and extremely dilated, but it is causing food, drugs, etc. from not to pass through and as a result, I am getting toxins to spill into my bloodstream from the colon and it is poisoning my organs and brain and shutting them down. I am essentially dying because of my colon being so ‘dead’ and these poisons being spilled into my bloodstream.

That is why I have to go every week to the hospital to have surgery on my colon to get them ‘cleaned out.’ We do this to hopefully buy us time until we get to Cleveland and as a way to keep me more comfortable as well. Since nothing passes through the colon, this is the only way of removing whatever is in the colon and hopefully limiting the amount of toxins that are entering my bloodstream. My colon is also extremely dilated because nothing passes through and therefore it has to be decompressed through this procedure as well. The doctors are fearful that if I am not decompressed that I will end up rupturing my colon and going into Sepsis. If that should happen, I will die.

The doctors can’t wait to see what this colon actually looks like. It is so dilated and floppy that it actually takes more than one doctor to navigate through my colon. We usually need multiple people in the room to help the doctor because the colon is so floppy. Thank goodness in a way though I have such a ‘dilated’ colon because I have lots of intussusceptions and normally a person cannot live with them. However, due to how dilated my colon is, I have been able to live with them up until now. However, it has gotten so bad recently that I can no longer put it off and it just has to come out.

So we are hopefully heading to Cleveland for the mega surgeries February 1st. But in the meantime also we are supposed to go to Cleveland for the week of January 6th to meet with some doctors and finalize everything for surgery. I have to meet with the heart doctor, GI doctor, pain doctor, etc. So we really are hoping to receive donations for this as well because we really need help with everything.

It is a long exhausting road, but unfortunately I have no other choice but to undergo these treatments. I am severely sick and desperately need your help. The doctors are even talking about brain surgery and putting a machine in my brain. Yet, in order for any of this to occur and for me to continue receiving treatment, I desperately need the help of others because we are so financially burdened from my medical bills that we can no longer afford my medical expenses. Since no one does anything for free, I am only hoping that other people will understand where I am coming from and help to donate whatever they can so that I can receive the very lifesaving treatment that I need, as well as continue to receive the current medication regime that I am taking, which isn’t cheap either.

Christmas came today and I was hoping for a Christmas miracle. We really haven’t celebrated any of the holidays this year. We couldn’t afford to. I can’t remember the last time my family and I did anything FUN anymore. I feel so bad for what I have done to my family because they have also been suffering and going through this with me. They may not have had the physical pain of this illness, but they have had the emotional pain and suffering, and they have been by my side from the very beginning. I feel so bad because they are working harder than ever and they have nothing to show for it. No matter what they do, they can’t help me because it is way beyond them. We haven’t been on a vacation in so many years, I can’t remember the last time we went out and did a family activity, I can’t even remember the last time we had dinner out, etc. This illness not only wrecked my life, but the lives of my family as well.

10869539_10101372143280850_8677436708977895777_oSpeaking of family… thank goodness for my pets. They really have been my best of friends. To think… I used have so many friends before I got sick. But you know how the saying goes… “You know who your true friends and family are when you are sick!” The amount of people who actually stuck by my side can basically be counted on one hand. It is said that I was always a person to be there for others and now that I need the help… I have no one. But at least I have my animals. They are especially special to me because since I don’t really go out, they are great to be with. 10553812_10101379387862650_5816219398568856490_oMy cat, Missy, spends the nights with me and literally ‘babysits’ me. She awakens my parents and alerts them to anything that might be happening to me. My dog, Max, is a great cuddler too as he spends the days on the couch with me. I also have a turtle named George who stays in the corner of his cage and watches me. My dad says that he stays in the corner so he can ‘watch’ me and also ‘watch’ television. Even though I take care of my animals, it really is amazing how well my animals take care of me too. I am really so lucky that I 10547208_10101225746620930_8296315936193166401_ohave them.

Please help me because I am running out of time. The doctors have said I am a “time bomb just waiting to explode.” It has gotten really bad recently, as I don’t really even have my “good” days anymore. I used to have a few good days every so often…not many but a few. But now… I am not even bouncing back at all. I just continue to go downhill and there are so many times that we don’t even know if I am going to make it through a day or night. Yet, we can’t even go to any hospital or see any doctor because there are very limited doctors and hospitals that are familiar and capable of handling my situation. If I go to a hospital or see a doctor who isn’t fully knowledgeable about my condition, they can really make me worse.   I can’t be treated like a typical patient, as everything is “magnified” for me. A simple needle stick is like someone sticking a knife through me. A simple cold is like getting the flu for me. Any wrong move can really set off my autonomic nervous system, which can really end up causing further problems and even killing me. So we are forced to travel across the country to seek the help of specialists at places such as in California, Cleveland Clinic, Mayo Clinic, Florida, and Mexico.

In addition, even getting up is getting to be impossible. Although when I am around people, I try to look my best because I like to try to conceal my illness as much as possible, it literally takes everything out of me to get out of bed lately. I have literally been sleeping the days away because I am too weak to get out of bed. I basically am in bed by 9 PM and I don’t get out of bed until noon the next day. Then its medication, eating, vomiting, etc. and before you know it… the day is over already. Even though I was sick before, it is as if I have had all my energy zapped from me nowadays.

I don’t know what is up but it is scaring me because not only am I feeling so weak, but it is getting even more difficult to breathe as well. I have been aspirating like crazy and you can hear the mucous in my lungs every time I breathe. My dad tried to bring up the oxygen machine in order to try to help me to breathe, but nothing is working. I am just so uncomfortable and no matter what I do… I can’t ever feel better.

I am not going to lie that I am not scared for all these treatments. But for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!! I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.” My goal is to one day become a doctor. I will be a great doctor because when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”

Well… I just wanted to really introduce a little what is happening and ask for your help. I have tried various ways of fundraising already, but they haven’t really worked. I tried contacting the media, writing on Facebook, etc. but you know how it goes… it isn’t what you know but who you know … and unfortunately I don’t know anyone. So I am kind of out of luck in that area and would appreciate it immensely if someone can please help me out. I really need as much help as possible and I am hoping that you will be able to help me whether it is by spreading this link to others, saying a prayer, or even making a donation. Remember… all donations are appreciative and no donation is ever too small.

Any help would be much appreciated. I have an ongoing blog with pictures at http://www.FallonMirsky.wordpress.com and fundraising site at http://www.gofundme.com/help4Fallon. A YouTube video is found at http://youtu.be/tRyEp1V6IGs and http://youtu.be/aDxDpsMck4Q.

1602127_10101039391692700_874790554_oI am also selling “livestrong” bracelets that are custom made to my disease as a way of helping to raise money and awareness for my illness. The bracelets come in two sizes (youth and adult) and in two colors (pink and blue). Each brackelet is $5 and all money goes towards my medical treatment. The bracelets say “Help Fallon Fight” along withmy website. If interested, please contact me at Femirsky@gmail.com

Happy Holidays and Happy New Year.



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December 20, 2014


I just wanted to write a quick blog and say HAPPY HOLIDAYS to everyone. I would like to wish each and every one of you all the very best in this holiday season and I only wish you to have a very Happy and Healthy New Year. I hope that 2015 will be a better year for everyone… including me!

Even though it is the holiday season and it is supposed to be a very “happy” time of year, it isn’t so very happy for me. Unfortunately, we aren’t really celebrating the holidays this year because we don’t have the money to do so. I should have been in Cleveland right now getting the lifesaving surgery that I desperately needed, but unfortunately we couldn’t come up with the needed funds and since no one does anything for “free”… we had to delay our plans for February. So we are only hoping and praying that it will all work out that I will be able to receive these lifesaving surgeries then because I really desperately need them and I don’t know honestly how much longer I can last without them. We don’t honestly even know if I will even make it to February, but I am strong-willed and I am going to hold on until then.

I can’t say that these last couple of weeks has been “easy” or even the same as what I have been used to. I am really in a rapid downhill fall. I am rapidly deteriorating and unless I get these surgeries really fast, I am not going to make it much longer. It pains my parents that they can’t get me the treatments that I need to save my life. I see it in their eyes in that they want to help me so badly and their hands are tied. We have done everything that we could do, but unfortunately our finances are strapped and we cannot afford my treatments any longer. The bills have grown like a wildflower all over the place and we can’t even pay our mortgage and can’t even put food on our table. You know it is bad when we are scavenging around trying to think about how we are even going to get money to pay for the food for the week. Gosh… I never thought that this would happen to me. I never thought for once I would ever be at a point in my life where I would be at risk of losing everything. Not only has this disease taken everything personally from me such as eating, walking, friends, family, etc. but also now this disease is even taking over and affecting my family in ways that is beyond belief. It is causing my family to literally have at risk the house being taken away because we can’t afford so many bills that are necessary to be paid in order to live. We can’t afford the mortgage, food, even a down payment for a new car because our old Altima’s lease is up. My dad is working harder then ever and is busy taking care of me and also taking me to all my appointments. He is like superman but I am so afraid that something is going to happen to him because even though he tries to be a superhero, he is getting old and he is working so hard. Between the work and stress… I am so worried that he’s going to have a heart attack or something. After all… He is not only my dad but my very best friend and hero. He lasts jokes with me (except he isn’t joking) that he is superman and nothing can stop him and will be fine as long as no one gives him kryptonite.

But the bottom line is that I desperately need treatment and since my treatment is not free… we desperately need help from others in order for me to get the lifesaving treatment that I desperately need. Right now things have gone from really bad to even worse. I am barely hanging on, but I am still trying to hold on because I still have that hope that I will be able to get that treatment that I desperately need and it will save my life. I still have that glimmer of hope that I will be able to regain my life and all this madness will be able to disappear and I will be able to become my dream of becoming a doctor so that I can help others. I keep closing my eyes and dreaming that I am going to become that doctor and that “normal” person again. I dream about the day when I will be able to have a social life and a family. I dream of the day that I will have a LIFE to enjoy.

If only these dreams will come true. I know it is the holiday season, and the best gift of course that I can be given is that “miracle” of being cured. But lets be realistic because I know that is not going to happen. Miracles like that don’t happen. But I do know that the second best gift that anyone can give me is a donation. It doesn’t matter how small the donation it is, but all donations are definitely appreciated because even that $1 is one less dollar that I have to come up with and it will help pay for my medication, treatments, etc. which I wouldn’t be able to get if I didn’t have it. You know? So as this season is known as the “season for giving” and if you should find maybe a dollar lying around… please think about donating it to my fund because that little amount can go towards saving my life, which could be making such a huge difference in my life!! You can help make something so little become something that can potentially make such a difference because you will essentially be helping me get my life back…. Which is the best and biggest gift that anyone can ever receive. Plus… if you can pray for me and spread word of my website (www.gofundme.com/FallonMirsky) I would really appreciate it. Like I said before… any help is definitely appreciated!!

Suffering with a rare and life-threatening illness that is extremely debilitating, I am really deteriorating. As I have said before, I suffer a severe neurological disease known as Reflex Sympathetic Dystrophy, severe Autonomic Dysfunction, severe Gastroparesis, Osteonecrosis, and a pituitary brain tumor. I never thought that someone who was an “A” student and a competitive figure skater and a top violinist would suffer from something like this and have my entire body fall and succumb to this illness and fail me like dominos. I desperately need help before it is too late. You never realize how lucky you have it when you have your health. “Health is definitely wealth” and if there is anything that I have learned through this disease is that you should never ever take ANYTHING for granted… even if you think it is trivial and wouldn’t make a difference. For instance, I never thought I wouldn’t be able to eat, walk, shower, and stay out in the sun, etc. especially at the age of 32 years old. I am too young for this.

I need your help so I can get the funds that I need so I can get the funds for the surgeries that are scheduled for February. Until then, I have to hang on, which is getting harder and harder. The doctors are even getting even more fearful that I am not going to make it because I am getting weaker by the day.

I spend most of the time in bed nowadays. Most of my energy is zapped from my body. I guess it is to be expected because I have been fighting so long and I only weigh in the 60s. I am literally in bed by 8:30 at night and I can’t get out of bed until after 12 in the afternoon. It just takes so much energy for me to even lift my head up. I even fret when I have to go to the bathroom, which is right next door to my bedroom because it entails getting up out of bed and walking. I just don’t have the energy to do anything.

Thankfully I have my pets to stay with me. My cat, Missy, has been my very best friend. She stays by my side and stays in bed with me from the moment I go to bed at night until I get out of bed in the morning (well actually afternoon). My parents call her my ‘babysitter’ because there are times when I am not doing well and she alerts my parents about me. It really is something. I am so lucky to have her. I don’t know what I would do without her.

By the time I get up finally out of bed, the day just basically encompasses eating, taking meds, and throwing up. By the time that is all done… it is time to go back to bed. I get so exhausted and I get so much weaker after I eat and throw up. I constantly wonder if I am going to make it through another night. Even my parents are leery about that. I gurgle when I breathe and have extremely difficult time breathing. My dad keeps asking me if I want to go to the hospital and I really do, but the problem is that there really isn’t any place to go.

I would really love to go to the hospital. We all know that I definitely belong in a hospital. But unfortunately no hospital around here can help me. If I went to a hospital around here, it would only hurt me because I can’t be treated like a “normal” person. I need specialized treatment and since my diseases are so rare and everything… I need to go to a hospital that is situated and knows how to deal with my disease. After all, I need a multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver, and there are only 6 hospitals in the country that do this. Thankfully the Cleveland Clinic is one of them.

I desperately need to get to the Cleveland Clinic ASAP because that is where I am supposed to be having the upcoming surgeries and where they are familiar with my illness. However, it isn’t that easy because we don’t have the funds to do this. I will have to be there for at least 2 months, and that also means my dad will have to be with me as well. The doctors have already stated that I can’t be left there alone and therefore, my dad won’t be able to leave and go back home to work. So we don’t know how on earth we are even going to make money to pay the bills especially when we can’t even afford them now. So that is why it is so desperately needed that we get the funds to help us out now.

In the meantime, since we are scheduled to have the surgeries in February, we have to get me to that time. It is getting harder and harder though because I am deteriorating. It is getting harder and harder to even go to the bathroom. Everytime I go to the bathroom, I end up vomiting because I have severe gastroparesis and as a result, my intestines are completely dead. I have even already passed out and my dad has found me unconscious on the bathroom floor because I am unable to go to the bathroom. The toxins are just spreading because things are just sitting in my intestines and colon and I can’t get them out because my entire GI tract is essentially ‘dead.’ So my body is becoming intoxicated and being poisoned!!

I was going every Friday for my intestines to be cleaned out, but with the holidays and everything, it is not able to occur anymore. The doctors are very fearful of what is going to happen now because I can’t move anything through and these surgeries on Friday are the only things that “help.” Not only does it help move things along so that it doesn’t remain in my GI tract and it helps prevent the sepsis from occurring and my intestines from rupturing, but it also makes me feel better. I used to really look forward to this day because of how much better I felt after the procedure but now since it is the holidays nad everything… the doctor has no time to do it. So I have really been suffering and there is nothing the doctor really can do about it. He is trying his best though to fit me into the schedule or to have one of his partners do the procedures on me. Hopefully something will be able to work out because I won’t make it without it.

In addition, I have to make an appointment to see the cardiologist ASAP. My heart is not doing well and I am gurgling like crazy. We know that I am aspirating because of the severe gastroparesis and that my heart is greatly being affected by the autonomic dysfunction, but the doctors want me to see the cardiologist ASAP because things are getting so bad. Even though we are scheduled to have the major surgeries in Cleveland in February, we are supposed to be headed to Cleveland Clinic for about a week in January (January 6th -9th) to finalize everything and to see specific specialists. One particular specialist that we are supposed to see is the cardiologist who is supposed to be very well known. He is listed under the 50 best doctors that Cleveland Clinic ever had and he was also trained under the legendary doctor named Sones. Sones was a great cardiologist that discovered a way to form a road map of the heart for medicine and surgery. He 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. Sones’ innovation made possible, for the first time, accurate diagnosis of coronary disease and set the stage for the modern era of cardiology and cardiac surgery. So you can just imagine how great a doctor this doctor I am seeing is. However, I still need a doctor in New York in case something happens in an emergency and with everything happening, my doctor literally told me today that he wants me calling the new cardiologist first thing Monday morning and making an appointment.

I just need help and need help fast. We always knew that I had an intussusception in my colon, which is a twist that is life-threatening if not treated. However, thankfully (if you want to say it like that) my colon was so dilated and floppy that I was able to live with it until now. However, it has gotten so bad now that I have to get it taken out right now. It is now in an emergency state that I have to get it taken out NOW!

The doctors are worried that the longer we wait the worse things are getting. They are worried that more and more organs are being affected and are going to need to have surgery on them and/or be transplanted. So it is really necessary to get this surgery done ASAP.

In the meantime, I have also been getting my usual ketamine treatments. Of course the best thing would be if I could get to Mexico and get the radical ketamine coma that I really desperately need, which would ‘cure’ my entire neurological disease and autonomic dysfunction, but it costs over $100,000, which is something we definitely don’t have. I would do anything to be able to go to Mexico to have that radical ketamine coma. I truly believe that would be the answer to all this. But unfortunately, it costs too much money and we can’t afford it.

So in the meantime, I have been undergoing the ketamine comas here in New York. Of course they are no where in comparison to the one that I would be getting in Mexico because the one in Mexico is one that I would be given so much ketamine that I would literally be on life-support and totally dependent on machines and ventilators. The amount of ketamine to do that is not FDA approved and therefore, it cannot be performed in the United States. 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.

For many of the patients that underwent this treatment, the treatment has been miraculous. I would be the 38th patient to undergo it.

But since I can’t get it currently, I have to rely on my ketamine comas here that is much less than that.   I wish I could live in those ketamine treatments because I can’t take this suffering anymore. At least when I am in the ketamine comas… I am not feeling any suffering. It is my “vacation” away from this illness and horrendous life until I wake up. I have been deteriorating and worsening so much lately that medications have not been helping me. Therefore, the doctor has raised the ketamine done another 50 mg.

Well… I guess that takes care of everything for right now. Just gotta hang in there until I get the surgeries. Just gotta pray that I get the necessary funds so that I can get the surgeries. I am hoping also that we have enough money to even go for the week to Cleveland to meet with the doctors that I need to meet with.

We are scheduled to leave February 1st for Cleveland and have heart surgery the 2nd. Then I will have my colon removed on the 18th. Depending on how that goes, it will determine how urgently the multivisceral transplant will have to follow. I will have to be there at least 6 weeks at this time, which also happens to be when my birthday is. What a way to celebrate a birthday! But I don’t care as long as I get better!!

10848906_10101373225312450_1821375345711225956_oMy brother surprised me today with a bear and a big box of chocolate truffles. He works as a social worker and one of the rehab/nursing homes gave him some stuff… so of course he gave it to me. The chocolate truffles look so yummy. Maybe one day I will be able to enjoy them.

Well… have a happy holiday and please remember my website. Please remember to pray for me and pass my website along. Remember… even a $1 can make the hugest difference in my life!! If you have any other ideas how to raise money, please let me know… all ideas are greatly appreciated. Please email me at Femirsky@gmail.com. Donations are very much appreciated at www.gofundme.com/FallonMirsky.

Happy Chanukah, Merry Christmas, Happy Kwanzaa, Happy New Year.

– Fallon

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December 13, 2014


Sorry I haven’t written in quite some time, but I have not been feeling well. To be quite honest, I am really not doing well and really deteriorating. As time is proceeding, I am getting weaker by the day and it is getting even harder to make it through a day or night.   It takes me quite a while now to build up the energy to do something so even simple tasks like writing my blog is getting too difficult to do and that is why I haven’t really written as frequently as I once did. I desperately need treatment and need it NOW, but unfortunately we can’t afford it and we are in extreme need of the help of others so that I can get the lifesaving treatment that I need.

I figured that since I haven’t written in a while, I would write and update you on all that has been happening especially since the year is coming to a close and I am only hoping that 2015 will be better. Plus, I am in need of so much help that I am hoping that through this blog, you might realize how much help I really do require to stay alive and therefore, perhaps maybe you might be able to help in someway… whether it is by donating, spreading the word of my website so that others can know about it and be able to donate, say a prayer, give some fundraising ideas, etc. I am really hoping that something can be done because without any help, I am not going to make it much longer.

As it is, we had to cancel the lifesaving surgery that I was scheduled to receive this upcoming week at the Cleveland Clinic. Due to insufficient funds, we had to cancel and it was something that we really couldn’t afford to do because I am literally hanging on by a “thread” and that thread is snapping already. We did reschedule it to a later date, but even the doctors are skeptical about how much longer I can hang on and if I can honestly make it to even another month for when the surgeries are now scheduled. In my state right now… even day counts and makes a difference.

I desperately needed to get to Cleveland Clinic this week because I was supposed to have heart surgery as well as have my colon removed. I was supposed to have heart surgery not only to remove the calcium calcifications in my coronary artery, but also to put lines and catheters into my heart to serve as a port, emergency access, a place I can receive TPN, etc.

This heart surgery was very important because I desperately needed the lines placed in me. Not only did I need it for the massive surgery to remove the colon, which would follow because it would be an “emergency access” port into me since it was a central line and go straight to my heart, but it would also have other purposes as well. With this port, I would be able to give given medication and would be a huge relief because of the amount of medications that I need to take and because I can’t absorb the medications as they need to be either since my either GI system is basically dead and doesn’t function. If given meds through this access, they would be far more potent and would hopefully help me better both in pain and in general. In addition, as I take so many pills daily that according to docs would “kill a horse” and a 300-pound man would never be able to take because it would even kill them, and it is extremely difficult for me to get them down. I have to take literally over 50 pills daily and with this port I would not have to worry about swallowing any of them anymore. Even the injections that I need to keep poking myself for wouldn’t have to happen anymore, as this port would prevent me from receiving injections and being constantly stuck with needles to give me both medication and draw my blood and everything.

Finally, one of the major reasons I need this port is for TPN. As I only weigh in the 60s, I have no ‘reserves’ to help me fight anything should I get sick and for when I undergo surgery. I definitely would need this to help me ‘heal’ especially from major surgeries that I will be undergoing.

So everything is just at a standstill right now because we have no funds to send me. Not only do I need help even paying for my medical treatments at home, and medications and everything, but there is absolutely no way we could pull off this trip. I would need to spend at about 6-7 weeks in Cleveland, which would amount to a lot of money. So we are just praying that help will come and arrive in time for February because that is when the surgeries are rescheduled. We just hope I will make it that long as well.

Whereas it was hoped that I would be going for the surgeries this month and this way I would be starting the New Year as hopefully a brand new person, it is obviously not going to happen. Now I am scheduled to leave February 2nd and I have heart surgery on the 3rd and then my colon is being removed on the 18th.   I will literally be going to Cleveland as an extremely SICK 32 year old, but hopefully coming back as a healthy 33-year old because I will be celebrating my 33rd birthday there. What a way of celebrating your birthday, right? But hopefully there will definitely be something to celebrate this year because hopefully we will be celebrating receiving the lifesaving treatment that I need and the start of a brand new healthy life. That would be the best birthday gift of them all.

Technically speaking it is kind of better that I have the surgery in February rather than now in December because there will be more days being able to be dedicated to the TPN than if I went now. Since I suffer from this painful and rare debilitating illness, I can’t tolerate anything ‘foreign’ in me and therefore, we don’t know how my body is going to be able to tolerate these lines going into my heart. I can’t even tolerate IVs. In order for me to get my colon out and have that massive surgery, I need to have at least 10 days of TPN. If I went this month, we would have to use every single day and wouldn’t be able to miss one day acclimating to the tubes. Yet, now that I am going in February, we will have more time to go ‘slowly’ and hopefully get my body to work with us. As it is, they will be having me heavily induced on ketamine during this time so hopefully I won’t be bothered by the central lines. I am so malnourished and deprived according to the doctors that we are going to need those extra days to go slowly. So in a way it is better.

However, even though we will be going to Cleveland for the massive surgeries starting February 2nd, we still are planning on making a trip to Cleveland on January 6th for a few days. It is important that we do so because we have to meet with some doctors and go over a few things. We need to see at this time the heart doctor, endocrine doctor, GI surgeon, neurological doctor, etc. It is extremely important to see the neurological doctor because he is one of the very few doctors in the world that is knowledgeable about my illness and has actually done research on it as well. This way the team will know exactly how to care for me during this operation because I cannot be treated like normal patient and even the slightest surgery, needle stick, tube placement, etc. will stir up my disease, cause havoc on me and my autonomic dysfunction, and cause my illness to spread.

So that is another reason why it is kinda better that we rescheduled to February as well. If we went for the operation during this month, I wouldn’t be able to see this neurological doctor prior because he was off on vacation this entire month. In fact he is actually ‘retired’ and not seeing patients at all. Yet, he is still willing to see “past” patients once a week and thankfully I have been a patient of his years ago and therefore, he is willing to see me as now too. So at least I will have the ability to see one of the best and knowledgeable doctors to talk to and we can know exactly what to do. After all, my illness is so horrendous and spreads like a wildflower that the slightest thing sets it off. I don’t wish this disease on my worst enemy. The pain is so intense and the autonomic dysfunction is just simply insane. One time in California, I had a tube placed in me by just going up my nose, and dragged into my intestines as way to see if they could feed me by bypassing the stomach. However, not only was this a failed procedure, but it stirred up the illness so badly that I immediately couldn’t talk. They immediately put me into the ICU and gave me high doses of ketamine and thankfully, it worked and I regained the ability to walk with the crutches.

So if I undergo anything, I always have to have ketamine. Not only is it used as a pain reliever, but also it is a way of suppressing my illness. That is why I need to get to Mexico and why I have the weekly daily coma. When I get those comas, it is the only time I am not suffering. But unfortunately I can’t live in them 24/7 and that is why I only wish that I could get to Mexico so that I can receive the ketamine coma that I really require that would “cure” me. Even though I do go for ketamine every week here, it is only a temporary relief and it no way would ‘cure’ me or anything. We pray that it is even helping a little in stopping the spread of the disease even though it is spreading like a wildflower, but we don’t know how much faster it would be spreading without the ketamine.   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. 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.

I really need the Mexico coma 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. Since the amount of ketamine that I need is not FDA approved and the only place to receive it is in Mexico, but unfortunately I can’t get it done because of insufficient funds. They want over $100,000 for the surgery and it can easily be more than that. Yet ketamine is my only hope because it will hopefully ‘cure’ my underlying neurological condition, which is the basis of this condition.   This ketamine procedure is very radical and rare, and I would be the 38th patient to undergo it. Yet, it is for the people that have exhausted all other 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.

So… in the meantime my body just continues to suffer like the domino theory and continues to shut down. This disease has caused so many other problems such as the severe gastroparesis, autonomic dysfurnction, etc. However, since my entire body is affected and it is causing all these other problems in my body, I need to do things that will buy me time and fight what this illness is doing to me. That is why I need to go to Cleveland Clinic.

10658991_10101343538989080_9076926901184874673_oIn addition, now when I go to get my ketamine every week, I just don’t get ketamine. I have been getting vitamin bags too because of how sick I am and how we are trying to prevent me from getting and catching anything… even a cold! Everything is magnified for me and a simple cold is like getting the flu to me and can really literally kill me. Since I can’t take the FLU shot because the doctors have stated explicitly that could easily kill me and it is the time of the year where germs are prevalent because everyone is getting sick, I have to be extremely careful because I have no immune system and can catch everything. Even my dad has been joining me in taking the Vitamin bags. The doctor has been giving it to him because he can’t afford to get sick either. Not only can’t he afford to get sick because he needs to work and take care of me and everything, but he can’t get sick because then I can easily get sick since we live together.

You know… between getting constant IV when I go for ketamine and when I go for the surgeries to clean out my intestines every Friday, you would think that I wouldn’t be dehydrated. But due to my illness, I am extremely dehydrated. No matter what I do… I can’t quench my thirst. It is so annoying. I just can’t understand it.

This illness has taken a huge toll on my GI system and caused me to have severe gastroparesis. It has forced me to basically have my entire GI tract become dead, as nothing moves… from the esophagus to the stomach to the intestines. I literally can’t eat and I weigh only in the 60s. I am in need of a multivisceral transplant, which is a complete new GI system or in order words I need everything underneath the hood replaced except for the engine. With the multivisceral transplant, I would receive a new stomach, small and large intestine, pancreas, and liver. It is one of the most dangerous surgeries you can have and has been known to be the most dangerous transplant that you can have. It is extremely rare and in fact, only 6 hospitals in the country actually perform this transplant with Cleveland Clinic being one of them.

I need to have this transplant as soon as possible and especially get this colon removed because since nothing is passing through, everything (whether it is meds or food or anything else) is just sitting inside my body and rotting. The doctors are extremely worried that my intestines are going to rupture and that I am going to go into sepsis. As it is, my colon is spilling toxins into my bloodstream and these toxins are traveling in my bloodstream to all my organs and brain and poisoning them. So essentially I am also being poisoned to death.

I also need to have surgery done as soon as possible because intestines are literally twisting and having Intussusceptions. They are literally strangling themselves and it can be extremely fatal. I have had it for a while and whereas a regular person would need surgery immediately to correct this situation, I have been fortunate (if you want to call it that) to be able to live with it because my intestines are so dead and over dilated that they are so BIG and floppy. In fact, when the doctors go into my intestines, it literally takes a whole team to navigate my intestines because of how big and floppy they are. It will take them pushing on my stomach and holding my intestines in place. Just to get to my cecum, it can take over an hour, which is an extremely long time. Therefore, even though I have Intussusceptions and twists, I have been able to live with it. But now it has gotten to the point where I can’t live with it anymore and it is now VERY life threatening to me. I can’t even produce any stool anymore except for this mucous that is really weird.

So it is essential that I get to Cleveland Clinic because it is the only place that I can have these surgeries. It is the best place for me because not only do they have the best surgeons there and are ranked as one of the best hospitals in the country, but they are one of the very few hospitals that even do this transplant. Plus, as I stated before, I need to have ketamine whenever I have something done and that is one of the very few places that will keep me on the ketamine for that length of time so that I can hopefully be able to tolerate the TPN and get the surgeries that I need. So we just hope and pray that I will make it there and that we receive funds so that it will be able to happen.

In the meantime, I guess I just have to keep up with what I am doing to hold on. I have to go every Friday to the OR so that I have my intestines cleaned out. After all, I can’t afford to have these toxins build up in my colon because if my intestine ruptures, then I can easily go into sepsis and die. Plus, an added benefit of this surgery every Friday is that it makes me feel better because it helps to remove everything that is just ‘sitting’ in my body.

So that appears all that is happening with Cleveland. Speaking about cleaning out my intestines though, I was originally scheduled today for the doctor to clean out my esophagus as well. However, when I went to the hospital today to have it done, the doctor all of a sudden refused to do the esophagus and just wanted to do the intestines. I threw such a fit because I knew that something was stuck in my throat like a pill because as I said before… my entire GI system is paralyzed, which includes my esophagus. Therefore, nothing goes down and pills end up getting stuck in my esophagus. It is extremely painful because not only is something stuck in my esophagus, but it is absorbing in the esophagus rather than the stomach, which is extremely painful.

So I ended up fighting him on this procedure and the doctor said to me that if he did the procedure and there was nothing there, he would “never” do another procedure on me again. Even the anesthesiologist made a comment of how ‘persuasive’ I am. I didn’t care what they said because I knew that something was wrong and that I needed it. So I told the doctor that I don’t care what he says, I need him to do it.

But guess what? When I woke up in the recovery room, the first thing that I did was grab my chart to see what they found when they did the procedures and guess what? I was totally right. There were pills stuck in my esophagus that they had to remove. So who was right? I know my body and I knew that something was wrong. I couldn’t wait to see the doctor to rub it into his face because he was so adamant before about not doing it and how he wasn’t going to do another procedure if there was nothing there. Look who was right and who was wrong. He usually comes to see me and my dad after I wake up to explain everything that happened, and I was just waiting for him because I couldn’t wait to give him my piece of mind.

So that appears all that is happening right now. I am so sick and I desperately need help. Therefore, I really pray that someone will be able to help me and that you will help me pray that I will get well, as well as send out the link of my fundraising site so hopefully I will be able to raise enough money so that I can receive the lifesaving treatment that I desperately need. Even besides the surgeries in Cleveland, I need medications and even medical treatments here that we can’t afford. I hate to sound like a complainer or a beggar or anything, but we are basically ‘broke’ and can’t afford anything. I desperately want to live and unfortunately we don’t have anything to help me get well. It kills my parents that no matter how hard that they try… they just can’t get me the treatments that I need. The bills that have just snow blown out of proportion. Not only are my medical pills extremely high, but because we have been dedicating all our funds to paying for my health, which we can no longer do, we can no longer even afford our regular bills, which have also built up. We can’t even afford our mortgage and we can’t even afford food on our table. I never thought that I would be so grateful on the days that my mom is able to go food shopping and we are able to have food on the table. As of last year, we didn’t celebrate any holidays and I know that it will be the same this year.

So if you can please do anything, I would really really really appreciate it. I would appreciate any donation whatsoever because even $1 is one less dollar that we have to come up with. If you can think of any ideas for fundraising, I would really appreciate it. If you can spread the link and really help get my story out so I can get the help I need, I would really appreciate that as well. If you need to contact me, please feel free to do so by contacting me at femirsky@gmail.com.

We are just totally out of funds and totally out of ideas. Dad thought possibly of even when I go to Cleveland that he would leave me there and travel back and forth. Despite the fact that it wouldn’t be the ideal situation and I wouldn’t want to be left alone in Cleveland, we thought that at least this way we would possibly ne able to save some money because would could save some days on the hotel stay because he would ne traveling home and we could also have him work as well some days because to not to have him work while I am in Cleveland, which will be for about 6-7 weeks, it is going to really kill us. We will have no income during this time and we can’t even afford the bills now that he is working. We can’t imagine what it will be like when he won’t be working. We don’t even know how we are going to manage. However, this idea was clearly put down and is not even an option because when we spoke to the doctor about this, the doctors at the Cleland Clinic expressively said that he had to remain with me the entire time or they will not be able to do the surgery. They said that I need to have a family member with me at all times or they will not do it and therefore, it gives my father no other choice but to stay with me or I will not be able to have the surgeries. So… that is more reason why we need fundraising and donations. We won’t be able to have any funds or any income for 2 months, which is such a long time. Our bills, especially my medical bills, are exuberant. There is no way we can afford not to work especially when we can’t even afford them when they are working. So if there is anything that can be done… please help. Sorry to sound like a broken record, but I am desperate. I am going to die without this surgery and all our funds are depleted and we sold everything that we could. Please help!!

I guess in the meantime I just need to try to keep up my strength and to try to keep going. I have my animals that are my best friends and I also am reading. I have the new SHOP-A-HOLIC book called SHOPAHOLIC TO THE STARS. So I plan on reading that.

Well… I hope that all is well with you. Thanks again for all your help. When I know more information, I will write again. In the meantime, have a happy holiday.

Love always,


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November 15, 2014


I know it has been awhile since I have written, but the truth is that I have not been well and lots have been happening so quickly that my head has been spinning. If I had written what was happening, it probably would have been totally different by the time you read what I had written. So between not feeling well and how fast everything has been happening/changing, I just haven’t been able to write.

So much has been happening lately and I am not doing well at all. I am rapidly deteriorated and I am so scared that I am not going to make it through this. I am so scared because I know how desperately I need certain treatments and medications, but unfortunately it is all contingent on the amount of funds that we receive. So essentially, the truth of the matter is that staying alive and being able to “live” is really out of my hands. All I can do is hope and pray that people will be generous and sympathetic as they hear about my situation and as a result, hopefully they will donate. It really stinks that staying alive and receiving treatment is not in my control but rather in the control of the world.

I hate begging and pleading for donations because I hate sounding like a broken record. No one wants to keep hearing the same story over and over again, but the truth of the matter is that I just want to get better so badly that all I can do is plead for funds. I see all the time people getting help on TV and through the media, but unfortunately, I can’t get the same aid that they do no matter how hard I try. I have tried countless times to reach out to the media, celebrities, etc. but I have learned that just like everything else in the world… it isn’t “what” you know in the world, but “whom” you know and unfortunately I don’t know anyone. So…. I am kind of out of luck in that area.

In addition to asking and hoping that I will receive aid from these letters, I am also writing these letters to hopefully bring awareness to my condition so that people don’t have to suffer the same horrible suffering that I am going through. Unfortunately, I am suffering from a very rare, life-threatening and debilitating disease that not many things are known about. Just as I am a guinea pig to hopefully find a treatment that will work, I am hoping that I am also serving as a way of showing the world what this disease really is all about and how you can still make a difference and survive even if you are “sick.” I am here to show you what a true “fighter” really is and how even if you are stricken with a debilitating disease… you don’t have to just crumble up in a corner and die. I have always wanted to make a difference in the world and society from when I was a little girl. I always had the ambition to become a doctor so that I can help others. Yet, even though I never got to achieve my actual dream, I really hope that I can still achieve my goal and dream of making a difference in the world.

Being sick is not easy and one of the hardest things in life is to gain support of others. As if finding a knowledgeable and caring doctor wasn’t difficult enough, finding caring and supportive friends, as well as compassionate people to be around can be even more difficult. Most people are simply not capable of understanding, unless they have the misfortune of an “illness” of their own.

So many people take to so much for granted like simply washing their hair, eating, walking, or paying the bills. People even take their health for granted because they are used to going to a doctor, receiving a magic pill, and instantly they are better. They don’t remember that before that pill, they were exhausted, achy all over, and could barely get out of bed. Burt fortunately, the illness passed and they were able to get back to their old self and usual activities. Yet, think about if that wasn’t the case. Think that if everyday you had to hobble around on crutches, was extremely tired as if you have not slept at all, and was in the most excruciating pain that you can imagine while you performed every single task you had to do throughout the day. Think how you had to feel this way throughout going to work, school, doing regular tasks such as washing your hair, and even watching TV. Tasks that you were able to do easily would become nearly impossible. It is stressful, exhausting, and depressing. Yet, you can’t just shut it off and tuck it aside. The person suffering from all this has to face it 24/7 and doesn’t get a millisecond of escape from it. Even all dreams that you dreamt of, as well as everything that you worked and strived for, ends up getting robbed and taken from you.

As my dad always tells me, “Health is wealth and when you have your health, you have everything.” We have really lost everything and never did I think my life was going to be like this, as this illness has really caused a HUGE financial burden on our family. I always lived a “comfortable” lifestyle growing up, as we weren’t rich and we weren’t poor. Yet now, everything is snowballing out of control. The bills are piling up and we have exhausted all our funds so there is nothing left to pay for the lifesaving treatment that I desperately need to survive. We have not been on a vacation in 10 years, we can’t afford the bills, we can’t afford the mortgage, and even going out to eat has stopped. Putting food into the house is something that we also struggle with. Yet, I continue to suffer and deteriorate because nothing is “free” in life and unfortunately I need very expensive treatments and medications, as well as money to see doctors across the country.

So if you are getting tired of seeing these ‘pleads’ or my blogs or anything else, please know that I am doing them not only so I can hopefully receive donations so that I can afford the lifesaving treatment that I desperately need, but so I can hopefully make a difference in the world. I may not be able to be my doctor now and “cure” the world, but I still hope my story will make a difference in the world because not only do I want to bring awareness to this rare condition, but also I want to show that you don’t have to just “give up” because you are ‘sick’. As you have seen throughout my battle of this illness, I have fought tooth and nail to stay alive. No one can say that I haven’t tried my hardest. But unfortunately, I have learned that no matter how hard you try, some things are just beyond your control.

10636935_10101341138928820_7591228196755472629_oSo when you see these letters, please know that they are coming from a person who is writing because I want to live so much. I have so much to offer the world and I only wish that I can receive the lifesaving treatment that I so desperately need so that I can go on and enter the medical field so that I can further help others. I have suffered both physical and emotional pain that nobody should ever endure. I don’t wish this on my worst enemy. So I am only hoping that one day I will be “free” from this life of suffering, but I know it is out of my hands and in the hands of the rest of the world because we can’t afford the necessary treatments that I need on our own.

That being said… let me tell you a little of what has been happening. Even though everything is “booked,” it is all contingent on whether we receive enough funds. We are crossing our fingers that it will all work out because I am not doing well. The doctors are even seeing how rapidly I am deteriorating and getting very fearful that I am not going to make it much longer. If the doctors could have their way, they would have me at the Cleveland Clinic tomorrow. But unfortunately they don’t have to worry about the financial issues and paying the bills like we do.

One week from tomorrow, we are supposed to be leaving for the Cleveland Clinic. We are supposed to be meeting with some doctors and finalizing everything with them I am also having preoperative testing because surgery is in December.  There is quite a lot on the agenda when we go there.   But, the doctors have promised me that I will be able to go home on Thanksgiving so that I can spend Thanksgiving dinner as a “family” since my dad and I are the only ones going and my mom is staying behind. So we are taking the ONLY flight home on Thursday and as long as the weather holds up, we are coming home Thursday so that I can be with my mom and we can be a family for Thanksgiving.

It is very important for me to be here for Thanksgiving because we will not be celebrating the holidays this year. My dad and I will be at the Cleveland Clinic for the holidays because I am supposed to be having mega surgery. My mom will be staying behind to watch the house and keep the business going as much as possible. We all can’t afford to go to Cleveland and close everything up, so we have to split up. We probably won’t see my mom for at least 6 weeks. It is also very important to celebrate this holiday because the doctors feel that if something isn’t done to “help” me, this will probably be my last thanksgiving too. So I want to celebrate it as family and be with both my mom and dad during this time.

I just hope that we will be able to have Thanksgiving dinner because of the expenses. My parents were talking about not having Thanksgiving because of how much money it costs and everything. However, I told them that I don’t care how much it costs; this is one thing that I definitely want. If something has to give to make this happen… then so be it. My family has suffered so much as it is, they deserve to have one happy holiday… especially Thanksgiving when it’s a family holiday and it is a day of giving “thanks!” After all, I am very thankful that I have two of the best parents in the world. I told them that I don’t care how little we make the dinner, but we are definitely having Thanksgiving. I just hope the weather holds up because you never know anymore with this weather.

We are supposed to be heading back to Cleveland on December 14th because I am scheduled to have heart surgery on December 16th. They are supposed to be taking the calcium calcifications out of my coronary heart, as well as putting lines into my heart as well. They are putting in a central access line so that they can use it for an emergency, as well as for upcoming surgery that is taking place 2 weeks later, as it will be a massive surgery and they need an “emergency” access port. They are also going to try to administer TPN through this port because they want to try to make me as strong as can be for that upcoming surgery. I only weigh in the 60s and I have no reserves if something should happen. This surgery is extremely dangerous and risky, but in my state… it is really a disaster. So they are trying to prepare me and make me as strong as can be for it.

The next surgery is December 30th. They are going to be removing my colon at that time. My entire GI tract is “dead” and nothing is passing through. Therefore, I need to have a multivisceral transplant, which includes receiving a new stomach, small and large intestine, pancreas, and liver. However, we are first worrying about removing the colon because I am becoming intoxicated by everything sitting in it. Since nothing is passing through it, whatever is getting into the colon (such as the drugs and the little food that does get in) ends up rotting and the toxins entering my bloodstream and going to my organs. As a result, my organs and brain are becoming intoxicated and my entire body is dying because I am being poisoned. When the surgeons take out the colon, we will know how urgently the transplant will be needed because it depends on the small intestine and how it looks.

1599757_10101341137666350_380621460210707426_oSo I will be having some massive surgeries ahead of me. I will be in Cleveland for about 6 weeks and therefore, I will be celebrating Chanukah, Christmas, and the New Year in Cleveland. I won’t be home until the middle to later part of January. I am really scared because I know how dangerous these surgeries are in general… let alone someone in my condition. I am just hoping that everything works out and since the surgery is December 30th, I am hoping that this will mean that I will be starting 2015 as a brand new and healthy person. My dad is dreading the 6 weeks there because he can’t imagine staying in a hospital for 6 weeks. He says he is going to go “insane.” I probably will end up killing him because he can’t even sit still in the hospital for like 1 day… let alone 6 weeks.

All I know is that I am going to miss my mom and my animals. I really wish I could take them all with me. But unfortunately they can’t come. I tried to get my mom to come for even the surgery especially because it is 2 days before the New Year and the business is closed for the New Year, but we just can’t afford it. But, we have our IPhones and that means the Facetime will be going like crazy. So… even though she won’t physically be with us, she will only literally be a phone call away and we will be able to still see each other.

In the meantime though, I have been really deteriorating and as a result, I have been undergoing ketamine comas/infusions every week. This past week I even had a blood patch transfusion to the brain because I am getting pressure changes in my brain. I wasn’t expecting that to happen, but when I went for the ketamine, I learned that it had to be done. It was so painful and I am still suffering from the pain of the needles.

During a blood patch transfusion, they literally drain your own blood and use it by putting it back into you through your spine. They did it while I was under the ketamine so I wouldn’t feel it so badly, but apparently I really felt it still because my dad told me that he could hear me screaming down the hall. He told the doctor that “she better not remember any of that from the way she was screaming!” I only hope that it worked!

I have also been going every Friday for surgery on my intestines. They have been ‘cleaning’ them out as best as can be because of the fact that the toxins are spilling into my bloodstream and intoxicating my organs. They are hoping to buy me time by doing this. They are also hoping that this will alleviate the intestines perforating or me going into Sepsis.

The doctors are also talking about having me go for brain surgery. There is a very well known brain surgeon who is interested in my case and he is in the process of reviewing my case with my doctors. They want to put a machine in my brain because they think that it will really help and make a difference. I wonder what they will think of next.

So… that appears to be all that is happening. So as you can see… I have a lot on my plate to deal with. However, it is all contingent on funds and therefore, we are only hoping that we receive the funds that we need so it all works out. So if you can please spread the word that HELP is needed and please pray that we get the help that we need so I receive the lifesaving treatment that I desperately need, we would really appreciate it.

Well… I guess I wrote enough for right now. I have wanted to start my new book written by Sophie Kinsella called “Shopaholic to the Stars.” Maybe I will do a little reading tonight.

Thanks again for reading and taking the time to support, encourage, and pray for me. Remember that donations are very much welcome at www.gofundme.com/FallonMirsky. If you have any suggestions for fundraising, they are much appreciated as well and can be sent to Femirsky@gmail.com



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