FALLON MIRSKY

Please help SAVE MY LIFE!

October 24, 2014

10665733_831516499301_2597049599461351384_nHi!

I wasn’t going to really write tonight, but I figured that I would write at least a little because there is so much happening right now that honestly my mind is spinning so fast that I am surprised it hasn’t came off my shoulders already and also because I never know where I am going to be anymore. I am also writing because I want to tell you how urgently I need some financial assistance through donations because I am really deteriorating. I thought that we would have at least a little bit of time to try to raise the much-needed funds to try to get me the life-saving treatment, but unfortunately, things aren’t going according to plan. But before I begin, let me begin by bringing awareness and help to my condition. October is known as DYSAUTONOMIA month

ANSchartDysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” 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 various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, digestive tract operation, sweating, breathing, and in severe cases, death. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.

I am at the point that I don’t know about anything anymore. We were originally scheduled to leave for Cleveland Clinic on November 23rd to see some doctors and to get all the final pre-operative testing that would be needed for the upcoming huge surgery, which would be taking place in December. I was scheduled to have because not only am I suffering from dense calcium calcifications in the coronary artery that can easily give me a heart attack and/or stroke, but also the doctors want to also put ports/lines in to my heart so that I can have a central access into me. I am in desperate need for the central access because the surgery that will be taking place afterwards is extremely dangerous and risky and they will need all the access that they can get. Also, with the way I am deteriorating, they don’t want to keep giving me needles and such because my veins can’t take it. The doctors also want to try giving me TPN again even though I have failed it many times in the past due to the autonomic dysfunction because I am severely underweight, as I only weigh in the 60s and my BMI is like 10.8. Therefore, I desperately need the TPN because the upcoming surgery will be very hard on my body and I will need all the help in getting me strong and being able to recover from it. This surgery is extremely dangerous and hard on a normal person, but in me it is a hundred times worse. Everything is magnified for me and I have no reserves to help me in through the recovery process. God forbid I get an infection or something… I am a goner.

The surgery that I am having after the ports and lines are placed in my heart is extremely dangerous and risky. However, my GI tract is completely dead and nothing passes through and I really have no other choice at this point. I have toxins spilling out of my GI tract (especially my colon) and going into my bloodstream, which is then affecting my other organs in the body and brain. I am literally being intoxicated and poisoned because of my GI system and if something isn’t done fast, I will die. Therefore, the doctors have been scheduled to have my colon completely removed after having the heart surgery and receiving 14 days of TPN.  I will be there for quite some time, as I will have to be in Cleveland basically all of December and January and therefore, it is really important I raise a lot of funds because it is going to cost a lot of money and that is also going to be the time that dad won’t be able to work and bring any income in because he will be with me.

So on December 23rd, I am scheduled to have my colon completely taken out. I figured that even though this is an extremely and life-threatening surgery, I felt that nothing really bad can happen this time because it is 2 days before Christmas. Santa wouldn’t let the holiday be ruined. I also felt that I would start 2015 as a healthy individual and leave all my sickness in the past and in 2014. Not only will 2015 be the start of a new year, but I am hoping that it will be the start of a new me. However, I also do need a multivisceral transplant, which entails receiving a new stomach, small and large intestine, liver, and pancreas. Depending on how bad the small intestine is affected when they remove the colon, it will determine how urgently I will have to have the multivisceral transplant.

The multivisceral transplant is known as being the most dangerous transplant that you can have. It is more dangerous than heart, lung, etc. In fact, only 6 hospitals in the country really do this transplant, but thankfully Cleveland Clinic is one of them and the surgeon that I am having is one of the best. In fact, he has done the most multivisceral trnasplants ever, so that makes me feel a lot better. But we do know that this is not going to be a “walk in the park” because not only is the surgery extremely dangerous and risky, but the recovery is not much better either. The survival rate from this operation isn’t too great, but I am at the point that I have no other choice. It is either that I go through with this operation and transplant and have a chance of life… or I basically throw the towel in and that is the end of it.

So as much as I know that I have a very long road ahead of me, I know I still want to live my life. My illness has robbed so much of my life from me and I have yet to experience so much. I want to travel, go gambling in Las Vegas, go to England, go to the Bahamas, go to Disneyworld, etc. I even want to become the doctor that I always dreamed to be so that I could make a real difference in the world and help others so that they don’t have to go through the same thing that I went through. So… even though I know that it will be extremely difficult, I really want to do all this and hope that I make it.

When I was younger, whenever I set my mind to do something… I accomplished it. I was a straight “A” student, got into New York University, was a competitive figure skater, performed at Rockefeller Center, received a perfect score on the highest level on NYSSMA (which is a New York Music competition) on the violin, achieved to get into Long Island Strings and All-County (which are 2 very elite orchestras), was Concert Mistress of my orchestra, was “Spirit Homecoming Queen,” etc. Whatever I wanted to accomplish, I succeeded in doing. Yet, this is one thing that no matter how hard I am trying to overcome this illness, I just can’t do it.

Sometimes I wonder what I did to get this disease. This disease is so horrendous that I don’t even wish it on my worst enemy. I never smoked or stole or did anything bad. So sometimes I wonder why I even got this disease in the first place. However, I know that I am a very strong person, but I honestly don’t know how much more I can take. I am so physically and emotionally exhausted. My parents say that “God wouldn’t give me anything that I couldn’t handle” and that I am “being tested for something big!” With all that I am going through, it better be something BIG because this illness is the most horrible thing you can imagine. No one can understand this disease unless they are actually experiencing it. My dad always tells me that he would “take away the illness from me if he could.” But I always tell him that he wouldn’t last a split second in my shoes. I never met something that you never ever get a break from. I just totally suffer 24/7. There is never a millisecond that I am not suffering unless I am under ketamine or propofol. Those are my “vacations” from my Hell!

Before I got sick… I was so….Normal. I was your typical girl with everyday problems who loved to socialise and soak up life’s best offerings (including cocktails). I was going to school to complete my studies in psychology and was hoping to follow up with going to Medical school so I could become a doctor. I had the strong desire to study medicine and even though I have been not able to physically attend classes allthe time, I have somehow managed to complete a number of subjects online. I guess for now I’m still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of completing this dream of becoming a doctor.

10687244_10101311604056940_1586248655489897400_oMy family are my rock. They’ve all endured so much as a result of my illness. I am certain I could not get through this without each of them. All parents help me everyday to keep hope and belief that things will get better. My dad is an inspiration and an amazing man. He has managed to take me to all my appoitnments no matter if they are local or throughout the country. He does this all while working full-time in a high pressure job and is always on the go. I actually don’t know how he does it all. He is my knight and shining armor, my superman, my best friend, and my dad!

For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come…

But I really need help and help now because I don’t know honestly if I will be able to make it to December to have the necessary surgeries. Therefore, we are in desperate need of funds now so that we can go ASAP because to be quite frank… we are BROKE!! I hate to say it and complain, but it is the honest truth. It pains me to say that and to plead for money, but you have no idea what it is like to know that you are dying and your life is literally hanging on the line. You have no idea what it is like knowing that there is a potential treatment that can help you but unfortunately you can’t attain it because you don’t have the money to get it. It is like being a dog and someone is holding a nice delicious dog bone right in front of your face and you aren’t allowed to have it. Sometimes I feel like this is all a big tease. I am only praying that I am going to find the funds to go to Cleveland Clinic so that I can get the lifesaving treatment that I desperately need because I can’t live this long anymore. I am also praying that I even make that long to get it.

Things have really gone from bad to worse. The doctors have always said that I am a “time bomb” waiting to detonate and to be quite frank, I think the time has come that it is happening. It is at the point we don’t even know where we are going to be from one day to the next or even if I will make it through the night or day. I am basically just falling apart.

To begin with, I ended up getting into a car accident last week and fracturing my ribs and sternum. Unfortunately though there is nothing that can really be done to correct this because what really needs to be done cannot be done on me because of my illness. For a typical person, they would have needed surgery and screws and plates placed into them. However, in my condition, that is not even an option. I am too fragile and too hypersensitive for that to happen. Plus, since I weigh only in the 60s, there really aren’t even any places to put the plates and screws. So in the meantime I just keep hurting especially when I breathe and cough. It even hurts worse when I eat because since I can’t keep food down and end up vomiting, you can imagine how much that hurts. I also keep feeling a cracking and clicking in my chest, but I guess that is normal considering all that is happening to me and comes with the territory.

In fact, we kind of ran into a similar problem when I broke my hip a couple of years ago. I really ideally needed surgery but due to my condition, it really wasn’t an option. Therefore, I was bed rested and I basically had to be carried around for 12 weeks. Can you imagine? The doctors and us just prayed it worked because if it didn’t we didn’t’ know what else to do because surgery was definitely not a good option. Thank goodness though, it had worked and I healed.

My bones are just so fragile and weak. In fact, I desperately need a bone infusion that cannot be done in New York and that is one more reason why I am going to the Cleveland Clinic in November. I am going to be having it done there because the doctors are so scared that I am going to have a life-threatening fracture and that is going to be the end of it. But there is also the problem with this bone infusion supposedly causing more osteonecrosis, which I am already suffering from. So the doctors are also scared to give me this bone infusion because I am already suffering from the osteonecrosis and they don’t want to make it any worse.

Speaking of the osteonecrosis, I ended up having surgery on my jaw and teeth a few weeks ago because I had a very bad infection in my jaw and because of the osteonecrosis. The doctor ended up removing part of the jaw and three teeth. However, I am still in so much pain and even though it has been extremely difficult to eat and drink beforehand that all I could eat was extremely limited stuff because of my GI paralysis, it is even less now. I am basically only able to eat ice cream and egg whites. However, I do need to have these medicated ice-pops since they my heart isn’t too good, and unfortunately I can’t have them with this jaw surgery now. It is causing me so much pain.   Just for me to even eat a single morsel of food such as ice cream, ices, or egg whites, I have to take more pain medication to try to ‘numb’ the pain.

I am in so much pain from that surgery on my jaw still. I told the doctors that if I knew how bad this was going to be, I would have never had this surgery and would have let the infection takeover. Not only am I in such severe pain in general, but also I can’t eat or drink anything. In addition, the jaw where he removed part of the jaw and teeth is now coming through the gum as well. More of the jaw has even been dying off too. It is like there are razor sharp bones coming through my gums. It is almost like I am a little kid and instead of having my permanent adult teeth growing in, I am having these razor sharp bones come through instead. It is extremely painful and the doctors have no idea what to do. They are scared to do anything because they are worried that if they did do more and remove more of the dead bone, it would only make things worse. So… in the meantime… I am suffering so much.

There is something going on strangely with my head. I don’t know what it is, but there is this really weird thing going on. If I touch my forehead it basically spasms up and it makes it feel like I am going in the opposite direction that I am touching. It is really weird. Plus it has this weirdly numbing feeling. Something just doesn’t feel right.

My intestines aren’t even doing as good as they have been doing. In fact, they have deteriorated a lot as well. It feels like they have completely become lax and over dilated. I cannot go to the bathroom at all and it is really uncomfortable. Gas isn’t even passing through anymore.

So in the meantime I have been going for my weekly surgeries to clean out my intestines. The doctors are having a difficult time starting the IVs because my veins are collapsing and not as strong as they once were. The doctors have also noticed that I am in a lot worse of shape even though I still have been having these “cleanings” once a week. I need to have my intestines cleaned out because if I don’t, then anything that I take in and I don’t vomit (whatever food and medication remains) will just sit and rot in my colon. The doctors are afraid that it will cause my intestines to rupture and if that happens, I will end up having sepsis and end up dying. In addition, I am having all those toxins pouring out into my bloodstream, which are essentially shutting down my organs and poisoning and intoxicating me.

In addition, I have also had the doctors constantly looking down my esophagus as well and it appears that more stuff than ever is getting stuck. The doctors literally have to push down all the pills that I take because they are getting stuck up in the esophagus instead of going into the stomach. So this is also causing me discomfort because instead of dissolving in the stomach where they are supposed to dissolving and where there is stuff to make you more comfortable, I have it burning up and choking me in me esophagus. The doctors also noticed that my stomach is filling up even more than before so the paralysis is even worse than ever.

I don’t even recognize myself anymore. I used to be the type of person that would try to take the least amount of pills possible because I hated taking pills. Now… I just don’t care anymore. I am willing to do anything and everything just to get out of the pain. It is the most horrendous pain you can imagine.

The doctors have noticed how bad I have gotten and have increased the ketamine done that I am receiving. I used to get the ketamine coma/infusion every other week besides taking the ketamine at home, but now since things are so bad, I am now taking the ketamine infusions/coma every week. Even though I need a much higher dose because the dose I really need is not FDA approved and can only be given in Mexico, at least this lower dose still helps with the pain and we are hoping that it is “containing” the illness as much as possible.

10478804_10101319579204680_6220219074548887699_oHowever, the last time I went for ketamine we ended up having some complications. However not all complications are bad… especially not this one. It turned out my veins collapsed in my arm and I became bloated and filled up on ketamine because the ketamine was no longer going into my veins. Therefore, My arm became all swollen and everything. The doctor had to switch arms so that I could continue having the ketamine, but in the meantime I had so much ketamine in my left arm because it was so swollen and everything that I would be getting ketamine all throughout the night as well because it would take time for the swelling to go down and the ketamine to enter the cells. You know? I didn’t even know all this had occurred because I was under ketamine when it happened. When I came home and saw the bandage all wrapped around my arm because the doctor wrapped up my swollen arm with a bandage and such, I asked why I had that and why my arm looked so fat. It was only then that I found out what had happened. My dad has a habit of keeping things ‘quiet’ until it has to be known. up that was filled all up with ketamine, but I couldn’t believe taI So even though we ended up having that complication, it wasn’t all bad because I at least got a longer dose of ketamine. You know?

So in the meantime… all I can do is hang in there. My doctors want me to head to Cleveland Clinic as soon as possible especially with everything that is going on. I spoke to the doctors at the clinic and they are having a meeting about me to see what is going to happen. I should know tomorrow or on Monday as to what the plan is. Between what is happening with my heart, body, and my head… I am really not doing well. Things are happening to me that have never happened to me before. I am also aspirating like crazy and I am having an extremely hard time breathing. The autonomic dysfunction is totally out of control and the slightest hot thing will overheat me and the slightest cold thing will make me freeze. All I know is that it is urgent that something be done and done fast.

Even though the surgery is scheduled to later on, we don’t think I am going to make it that long especially with all these other things happening. We are thinking about going through the ER to get into the hospital because of how bad things are. But we will still have to have money and funds behind us if we were to do that. So if you can please help me raise funds whether it is by spreading the word, fundraising, or anything else you can think of, please help me. I am really desperate. Please spread the word of my site, which is www.gofundme.com/FallonMirsky. If you really need to get in touch with me, you can always contact me at Femirsky@gmail.com.

On a better note, my favorite author came out with her newest book finally. I haven’t started it with everything going on because I have been too weak to do anything. But I am looking forward to starting it soon. The book is called SHOPAHOLIC TO THE STARS. I read all her other books and they are great.

10680022_10101295230679320_4427613861236313306_oHalloween is quickly approaching and this used to be my favorite holiday of all times. I used to really deck out our house with decorations and I must say that we had one of the best looking houses on the block. We had corn stalks and decorations and skeletons, etc. It was awesome. I also had a blast cutting open the pumpkins, carving faces on them, cooking up the pumpkin seeds, etc. I even loved handing out candies to the kids and everything else that went along with the wonderful holiday.

But I don’t know what it is but now that I am so sick and not feeling well, I don’t have the same enthusiasm that I had for the holiday. I really can’t be bothered with the holiday at all. I have not decorated at all, not excited to give out candies to the kids, not even excited to carve the pumpkins, etc. The only reason I will carve the pumpkins probably is to get the pumpkin seeds out and give them to my family. After all, nothing tastes the same as fresh pumpkin seeds from the pumpkin. I don’t know why but they never taste the same as when you buy them in the store. The same thing goes with apples. Even when you buy them “off the tree,” it doesn’t taste the same as when you actually pick them off fresh off the tree yourself. What would Halloween be like if I didn’t have pumpkin seeds for my family? So I will probably do it on Sunday since it is close enough to Halloween so it shouldn’t mold and make it to Friday and this way my Dad will be around to help.

I guess I should take advantage of this Halloween too because I love pumpkin muffins, seeds, etc. If all goes well and I have surgery and everything, who knows what I will be able to have. I already know that when I am on TPN that I won’t be able to eat anything. So I only hope that I get the multivisceral transplant and it is successful so that I can eat like a normal person again.

Well… I guess that is it for right now. I think I wrote a lot. I want to rest a bit because got to get up in a bit for the hospital. After all, it is Friday and it means that I am going to get my intestines cleaned. Hopefully I will hear from the Cleveland Clinic or the doctors for my jaw and we will know what the next plan of action will be because I can’t take it much longer and all these weird things are happening that never happened before. But in the meantime, please help me raise as much money as possible because without it, none of this is going to be possible. Thank you so much for all your help. I can’t tell you how much I appreciate it. No help is every too little.

Love,
Fallon

2 Comments »

October 15, 2014

10610771_10101234715552120_1201871962943722958_nHi-

I know it has been quite a while since I have written, but a lot has still been happening and I haven’t been well enough to write. I also didn’t want to write until I knew all the information completely because I didn’t want to give you any wrong information. So I figured that since there is so much to know, I would at least try to give it as much as possible.

I guess I should start by saying how I am rapidly deteriorating and desperately need help. I guess that goes without having really to be said already because I say basically the same thing in every posting. However, each time I think that it can’t get any worse and that I suffered enough… It continues to worsen. I just keep spiraling downward and deteriorating. I cry all day long and even cry all night long as well. It is so unfair that no matter what I do, I just continue to suffer. I don’t get a moments relief. I just honestly don’t know how much more I can take.

I know I say that all that time and I am still plugging away, but to be honest… I am so tired. It is at the point that I am getting even too tired to fight. I am losing my will to fight because no matter how hard I try, I just keep hitting brick walls and continue to suffer. I suffer physically, emotionally, psychologically, etc. This is definitely not a life a 32 year old should be living and I don’t even wish this life on my worst enemy. I feel like a dog when they are teased with being given a bone because I feel that I am being teased with treatments and medications being held in front of my face that can possibly help me and yet, I can’t even try them because we can’t afford them. Its just so unfair that I am suffering so much and there could be something out there to help me and yet I can’t even try it to alleviate my suffering because we can’t afford it on our own and unfortunately we aren’t receiving the donations that we desperately need in order to attain these life-saving treatments.

To begin with, I have to still find a way to raise money for the Cleveland Clinic because we are going to be heading there for surgery and it is going to be extremely expensive. We are leaving in November for a week so that we can meet with the doctors and finalize the testing that is needed for the upcoming surgery that will be taking place in December. Luckily, the doctors are allowing me to come home on Thanksgiving because they know how important that holiday is for me and how much I want to spend it with my “family.” The doctors know how important it is for me because this can be my vey last “thanksgiving” since I am not doing well at all and I am rapidly deteriorating. The doctors have already clearly expressed that if something isn’t done fast and quick, I will not make it much longer because I am a time bomb that is detonated and going to explode. Plus, the treatments that I am going to need and undergo are extremely risky and dangerous. That is why I very few hospitals perform these treatments and I have to travel across the country (even to Mexico) to seek these treatments and top specialists because there aren’t many knowledgeable specialists in the area. You would think that living in New York would give me all the needed opportunities I would need to get well, but that is definitely not the case at all. So besides the money needed for the treatments itself, the medications, the appointments, etc. I also have to worry about the traveling expenses as well.

Besides going for the pre-surgical tests in November at the Cleveland Clinic, I will also be seeking the expertise of the endocrinologist because I need a bone infusion that cannot be given in the New York area. I desperately need this infusion because my bones are extremely weak and they are scared that I am going to get a life-threatening fracture.

I am also going to be seeking the expertise of the heart surgeon. One of the surgeries that I will have to undergo in December is heart surgery because I need to put lines and ports into my heart. I will also need to put a central line into my heart to serve as an emergency access port into me for the massive surgery that I will be having later on that month when I have my colon removed. They also are going to be using those ports for TPN because since I am so weak, fragile, and only weighing in the 60s, they are going to try to make me as strong as possible to recover from this surgery to remove the colon as well because it is massive surgery. In addition, the ports will serve as lines to put medications and take bloods from me because I am constantly being stuck with needles, which can easily cause a massive infection on top of everything else… not to mention the pain I am enduring each time that can be alleviated by having this done.

But I also need to see the heart surgeon as well because it was discovered that I have dense calcium calcifications in my coronary artery. So since I have these blockages now, the doctors have to also take care of this as well because I can easily have a heart attack and/or stroke because of it. Never a dull moment.

I am also going to be seeing one the top specialists in my neurological illness. There are not many doctors in the world who are really knowledgeable and can say that they are a “specialist” in my illness. Yes they might be ‘familiar’ with my illness, but there are only about 3-4 doctors that are really specialists in my illness who have been doing research, writing papers on it, and experimenting with different surgeries, and talking about it at conferences. So the doctor that I am seeing happens to be one of them and in fact he doesn’t even see “new” patients. Fortunately I have seen him in the past and therefore, he will be seeing me again.

It is very important to seek the expertise of this doctor because I have really worsened and need desperate help in this area especially since I can’t get to Mexico right now to get the radical intensive ketamine coma in Mexico, which is the treatment that I ultimately need but costs over $100,000 and we can’t afford it.   I have developed severe spasms throughout my entire body that need help as well. I was also told that with everything that is happening, I am also in need of brain surgery.

Yes… you heard right. I am in need for brain surgery. Now on top of everything else I need brain surgery. I feel like a guinea pig and a huge science experiment. Yet, the doctors have discussed it and I need the brain surgery because they think that this is the only way to help my neurological disease besides having the expensive ketamine coma in Mexico, which we can’t afford. Not only will the brain surgery hopefully help my neurological condition, but hopefully it will also help my severe gastroparesis as well.

Since I am in need of brain surgery and brain surgery is one major surgery that you want the ultimate best doctors performing, we are planning to have the surgery also at the Cleveland Clinic because they are known as being one of the best hospitals. During this time, they will be undergoing very rare, risky, and extremely dangerous surgery. They will not only be operating in my brain, but they also are going to be putting a machine in my brain that will hopefully help me deal with the illnesses and alleviate it.

The brain surgery has been saved for the rarest cases. In these cases, it has been successful in the sense where people are able to not be as paralyzed as they was prior to the surgery, the pain is reduced, is able to eat, etc. All of them have experienced some benefit in both pain and mobility from the treatment. They will be operating in my motor cortex area.

As stated before, I am scheduled for surgery in December. I am going to definitely be having the heart surgery to have the ports and lines placed on December 8th. I will then undergo 14 days of TPN to try to make me stronger. On December 23rd, I will then have my colon removed. Depending on how bad it is when the colon is removed, it will determine how long I have until I need to receive multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, spleen and pancreas.

So in the meantime I gotta hang in there. I have been doing so badly that they increased the amount of ketamine comas/infusions that I receive in New York to a higher dose and to a weekly basis. Although I was taking the ketamine at home every night, I was only having the ketamine comas in the hospital every other week. But since it has gotten so badly, the doctors have switched me to every week.

The doctor also increased some of my meds and placed me on Klonopin. It has been doing me the best help at night because it has been “knockin” me out most of the time. This medicine is better than the others because it is also supposed to help with all the anxieties that I am feeling, as it wouldn’t be normal not to feel overwhelmed with all that I am going through. You know? In addition, this medicine is the one medicine that has the least impact on my GI system and the least addicting out of all the other meds that I am on. This is a good thing because I don’t want to be on such addicting medications or medications that will further harm me and further ‘paralyze’ my GI system.

However, my miracle drug still happens to be my ketamine and if I could remain in the ketamine coma 24/7… I would. Even taking the ketamine at home is the best thing out of everything. The only problem is that this ketamine is extremely expensive and we can’t afford it. It is the ONLY medicine that gives me relief throughout the illness. But, like I said before, it is not a drug that is easily affordable. You can’t even get it at a regular drugstore. I have to go to a special pharmacy so that they can especially compound it for me.

So not only are we having difficulty paying for treatments, going to appointments, traveling, etc. we can’t even pay for medications that I desperately need. I desperately need my meds in order just to get by. My medication is extremely expensive and I don’t take a little amount either. In fact, I take over 50 pills daily and the amount of medication that I take is enough to kill a horse. Doctors have already said that a 300-pound man wouldn’t be able to handle the medication that I take on a daily basis.

But my medication is so very expensive and it isn’t even all covered by insurance. For example, a little bottle of ketamine costs me about $200 and it will only last me about 1- 2 weeks (if I am lucky). So… if you can please help me raise money so that I can at least receive the medication that I desperately need to be somewhat comfortable, I would appreciate it.

In addition to all that has been happening, I also recently got into a huge car accident. The car accident was so massive that the air bags went off and I was really hurt badly. This stupid huge Yukon truck hit us in the back and then plowed us into the car in front of us. We really had no place to go because it happened on a roadway that was over water and if we went to the left, we would have hit the cement guardrail and therefore had no place to go, and if we went to the right we would have went off the overpass and into the water. What makes it worse though is that the YUKON truck took off! Despite all the witness seeing the accident and trying to get the license plate number, he got away. In addition, the car that was in front of us that we hit ended up having no license or insurance. What a day that was.

Between all three cars, our car was the worst perhaps because we were the car in the middle of the sandwich. The whole car had to be totaled because the airbags went off, the car is crumbled with the engine being all twisted, and the hood is in the driver’s seat. The frame of the car is even cracked. They even said on the scene of the accident that the car was “totaled!” It is really horrible.

I was also the one that was hurt the worst perhaps because I am the most fragile and weak. However, there was no treatment that could really be done because with my illness, there are very limited things that can be done. What really stinks though is that my disease makes me extremely hypersensitive so a simple needlestick is like someone sticking a knife through me. So the pain that I am receiving from this accident is astronomical because a normal person would be in tons of pain from it… so you can imagine how much worse I am. In fact, as the days go on, I am feeling worse and worse throughout my body instead of actually getting better. I know it is somewhat normal for this to happen, but my disease doesn’t help this. My disease literally spreads through trauma and will cause complete chaos if something occurs in my body… especially a traumatic even like this!

I am in so much pain from the accident despite all the medications that I am already on. I am already on Methadone, morphine, Dilaudid, Motrin, ketamine, etc. … So if I am in this much pain with all these drugs, I don’t want to feel what I would really be feeling without them. I am surprised my stomach hasn’t exploded yet because I have been living on Motrin, which is something that I am not supposed to really have, as the doctors rather me have Tylenol instead. My ribs ache and they think I severely bruised and fractured my sternum and ribs. My heart hurts and my ribs hurt to breathe as well. As I constantly aspirate and can’t breathe, you can imagine how much pain I am in when I have to go and clear the secretions out of my chest. I just hurt all over.

But hopefully today will be better because I am going for another ketamine coma. Like I said before… ketamine is the only thing that really makes a huge difference. It has the power to stop the pain and even reverse the disease if given a high enough dose. However, I need a dose that is so high that only can be given in Mexico because it isn’t FDA approved. But obviously since I can’t get to Mexico because of the insufficient funds, I have to take what I can get and pray that the lesser amount of ketamine will still make a difference.

Finally, it appears another surgery will be needed for my jaw. A couple of weeks ago I had a severe jaw infection and needed to have surgery on my jaw to remove the infection. During that surgery, the doctor removed not only bone but also three teeth as well because of the infection. However, since I suffer from osteonecrosis, I now found out that I have to undergo another surgery in my jaw ASAP because more of my jaw has died. This really stinks too because more surgery on my jaw means more money out of pocket because it isn’t covered under insurance, which is definitely something we can’t afford. I have been having such difficulty with this jaw surgery ever since I have had it, both with the recovery, pain, eating, etc., that I have already told the doctors that if I knew how bad it was going to be… I would never have had it even though it was so desperately needed.

Everything is just dying and giving out on me in my body…. From organs to bones to everything else. My body has always the ENERGIZER BUNNY who has “kept going and going,” but it no longer can do such a thing. My batteries are dying and they aren’t being recharged.

I desperately need help and help soon. In the meantime, all I can do is hope and pray that I will receive the necessary funds and donations so that I can receive the desperate treatment that I need. I just want my life back and just want my suffering to end already. I can’t take this anymore and I can’t do it much longer either.

On a better note, my parents’ anniversary is approaching. On October 19th, my parents will be celebrating their 39th anniversary. I wish I could do something special for them because they certainly deserve it. I am so fortunate to have such loving parents. Some couples are cute together. Others complete one another. But rarely do you have the privilege of seeing two people who seem so perfectly well suited for one another than my parents. I only wish I could make it better for them. For many years, my parents both have always cherished one another with every passing moment (whether they were good or bad). I only hope that this anniversary brings many more, and turn into endless joy of love, laughter, and peace. I cannot begin to describe how blessed I am to have amazing parents in my life. Seeing true love through them makes my heart happy. I love them both in more ways than I can ever tell them.

I am also counting down the days until Tuesday because my favorite author of all times is releasing her newest book. I just love Sophie Kinsella and she is releasing it then. Too bad she only releases one or two at the most a year. She really writes light, funny, and great reads!!

Well… I really must be going because I am leaving for the hospital. It is just another Wednesday, as Wednesdays are filled with ketamine comas. Fridays are always filled with the colon surgery because they need to desperately clean out my colon because my entire GI system is dead and nothing moves. The doctors are afraid of me going into sepsis or something because the medication and whatever food is in me just sits in me and “rots.” So… I have no other choice but to be cleaned out every Friday. In fact, when I go into the OR for the surgery, the doctor always makes me state my name and why I am there and what type of procedure I am having. I always tell him “housekeeping” because that is basically what we are doing!! We are cleaning me up!

Well… thanks again for all your support and encouragement. If it weren’t for your support, I would have never made it this far. Please continue to pray for me. If you have any ideas in how to raise funds, please don’t hesitate to Facebook me or email me at Femirsky@gmail.com.

Thanks again for everything.

Love,

Fallon

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October 3, 2014

10612742_10101294405652680_3437940944953348918_nHi-

I just wanted to write an update since I haven’t written in awhile. It is honestly getting harder and harder to write these blogs and that is why I don’t write as frequently as I would have liked. I am really deteriorating fast and trying to hold on, but to be honest… it is getting to be impossible.

Any activity that utilizes energy is getting to be an impossible task. It really scares me and upsets me because I was never like this. I was the person to always push… push…. And push more. But I finally have gotten to the point where my body is just “done” and can’t be pushed anymore. It is as if my body finally ran out of batteries. I always thought I would be the “Energizer Bunny” that kept going and going and going. But unfortunately, my batteries are depleted and I can’t get them to get recharged. I never thought it would get this far.

I never thought I would get to the point where I am too tired and weak to do anything. Even the simplest task of making dinner, which is something that I loved to do is basically impossible to do anymore. Even typing my blogs is getting impossible. I can’t even give my mom her injections anymore for her multiple sclerosis. I was the one who every day gave her an injection to combat her MS, but I am getting to weak to do even that. Everything that I was and did… this disease has taken from me. It is so unfair. Yet, I am still hoping that this will still turnaround and I will be able to be “helped” and be able to resume a normal life. I am still hoping to become that doctor that I was hoping to be since I was a little girl so that I can help others.

I would never think that this disease could have taken so much from me. Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, 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.

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.

The pain I feel is indescribable and all attempted treatments have not even come close to relieving all my suffering. I have seen many, many doctors, undergone numerous painful tests and procedures, has been prescribed over 50 medications, and has been hospitalized frequently including being intubated and on a ventilator. As a result I now need to have surgery to remove my colon (a complete colectomy), as well as a multivisceral organ transplant, which will encompass receiving a totally new digestive system (new stomach, small and large intestines, pancreas, and liver). 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!

Yet, I still love life and want to get better. I am still hoping that through the efforts of others that I will be able to get well. I don’t want to be sick. But unfortunately, I am deteriorating and getting sicker at a markedly fast rate. I hate knowing that in order to get better, it depends on other people because we can no longer afford the very lifesaving treatment that I need to survive. I wish I were independent and only had to count on myself. But unfortunately, my life depends on the help others. So I am hoping and pleading that you help me. I don’t want to be sick and I have so much to offer the world. I can’t take the suffering anymore. The toll this illness has taken on my physically, medically, psychologically, emotionally, etc. is unimaginable. I desperately need help and in order for that to happen I really need help from everyone to make that happen because unfortunately we cannot afford the very lifesaving treatment that I need.

It’s a shame how money dictates so much of how the world functions. But unfortunately it does. So unless I raise some money through donations and fundraising, I don’t see how I will be able to get the very imperative treatment that I desperately need. If you can please help me in any shape or form, I would really appreciate it. No donation or help is ever too small and all is extremely appreciated. Please help me get the treatment that I need because I am not going to make it much longer. I am literally hanging on by a thread. I would be forever grateful for any contribution that you can make.

Unfortunately, we had to cancel this past trip to Cleveland Clinic that we had scheduled because of lack of funds. It was a very important trip too, but since we were unable to come up with the needed funds and no one is going to do anything for “free,” we had no choice but to cancel the trip.

As a result, we now had to reschedule everything and it is all planned out what is needed to occur. It is very imperative that I get to these appointments because I will literally die without them. The doctors are even afraid that I won’t even make it until then, but they don’t know me… I am going to hold on and make it.

We are scheduled to go to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. Although it is a little while off, I am hoping that it will give us enough time to raise enough money because we are definitely going to need it. The upcoming medical treatments and trips are going to be very expensive and therefore, I am hoping that I will be able to use the next few weeks to raise enough money to help us out so that this all can happen.

I will be seeing so many doctors when I go down that week. Among them includes an endocrinologist because I need a bone infusion that cannot be given to me in New York as well as one of the most knowledgeable specialists in my neurological disease. I am also seeing the cardiologist because my heart is not doing well and I will also be getting all the final clearances done so that I will be able to have all the necessary surgeries that I need in the following weeks.

I need to see the Endocrinologist at the Cleveland Clinic because my bones are so very weak and I can easily get a life-threatening fracture. I desperately need a specific bone infusion that cannot be done in New York and the specialist in Cleveland can only do it.

I also need to see the specialist in my neurological disease because there are VERY few specialists that are very knowledgeable about my neurological disease. A lot of doctors may claim that they know “something” about it, but there are only about 3 doctors in the world that actually are fully knowledgeable in my neurological disease and actually doing research on it. This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it. However, the doctor that I am seeing in Cleveland is one of the most knowledgeable doctors in the world, as he has published and spoke about my disease in depth. Since I am one of the worst cases that have ever been seen, it is extremely imperative that I seek his expertise.

In fact, the doctor in Cleveland is actually not seeing patients because he is considered “retired,” but we are very fortunate that he will see me because he continues to see past patients and since I have seen him many years ago, he will see me again. There is not many treatments or stuff known about my illness and not only is it important to seek his expertise because I am suffering from this illness in itself, but I am also going to be undergoing mega surgery and my illness spreads through trauma, which includes surgery. As a result, it is very important to seek his expertise because since this illness does spread through trauma and surgery, we need to know best how to “control” this illness and best how to help me during these upcoming surgeries. After all, this illness spreads like a weed and it is the most painful disease that you can imagine. In fact, it is the most painful disease in medicine, as it ranks higher than Natural Childbirth, Amputation, Cancer, etc. on the McGill Pain Index.

I suffer from pain 24/7 and never get a break from it. The only time that I can say that I am at “peace” from this illness is when I am under ketamine, which is why I really need to get to Mexico so that I can undergo that radical ketamine procedure that will reverse the disease and put the disease officially in remission.  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 Ketamine Coma shows great promise as a treatment for severe RSD. However, even though I do get ketamine here in the United States, the amount of ketamine that I need and is required for this procedure is not FDA approved and can only be attained in Mexico. However, this procedure is extremely costly, as it will cost over $100,000 and we cannot afford it without your help.

In addition, I will also see one of the top cardiologists when I go to Cleveland as well. My heart is not doing well and it was discovered that I have dense calcium calcifications in the coronary artery. I will be undergoing heart surgery to put ports and lines in because the doctors need central and emergency access into me for the surgery to remove the colon as well as because I am doing so poorly, but the doctors are also concerned that I will need further surgeries now because of these dense calcifications in the coronary artery.

The cardiologist that I will be seeing is really supposed to be the best. Fifteen of the top 50 cardiologists are working at Cleveland Clinic and ranking in the top 15 is the cardiologist I will be seeing. I will be seeing the legendary Dr. Irving Franco, who joined and worked at the institution since 1971. He trained under the legendary Sones and subsequently trained two generations of the Clinic’s cardiologists himself. Sones is considered the father of “coronary angiography” and credited with one of the most important discoveries in the history of cardiology, as he discovered a way to form a road map of the heart for medicine and surgery. 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 I am really hoping that Dr. Franco will be able to help me because I am a very difficult case. With my autonomic dysfunction, my poor bloods, etc. my heart is suffering a lot.   Not only will I need heart surgery to put the lines and ports in at the very least, but heart disease and every member of my dad’s family has had a heart attack and open heart surgery. Thank goodness my dad has been the only one so far in his family who has not had a heart attack or open-heart surgery, but it does run in his family. In fact, his younger brother just got out of the hospital this past week from a heart attack and quadruple bypass.

I will also be undergoing medical clearances so that we can come back 2 weeks later to have the necessary surgeries that I will be having. However, I am fortunate that the doctors are going to allow me and get me home for Thanksgiving. I was very fearful that I wouldn’t be home for Thanksgiving because I really wanted to spend it with my mom because Thanksgiving is family time. Plus, with the new upcoming surgeries, I will be missing the holidays, which includes Christmas, Chanukah, and the New Year.

So the even though I am going to Cleveland Clinic in November and will have many appointments, the doctors promised that I would be able to go home for Thanksgiving. Therefore, we are scheduled to leave Cleveland to go home on the actual day of Thanksgiving. There is only 1 flight out the entire day and we are on it. So at least we will be home for some turkey dinner. The doctors feel that with everything that I am going through that it would be an excellent idea to have me home for Thanksgiving and be able to celebrate it as a “family!”

We will get to stay home for only a little bit because we are scheduled to return to Cleveland on December 7th. I will be undergoing surgery on the very next day to put the ports and lines into my heart. The doctors need to do this because not only do they need central access and emergency access to me when I have the surgery, but they also need a way to give me TPN.

The surgery to remove the colon is very intensive and the recovery will be very hard on me. Therefore, they want me as strong as possible. I am so very ill right now that it is extremely dangerous to undergo any type of surgery let alone a very complicated and dangerous surgery to remove the colon. So the doctors are going to be giving me 14 days of TPN before removing the colon.

Even though TPN hasn’t worked on me before because I am extremely hypersensitive and I can’t take anything “foreign” in my body, they are going to try to keep me as comfortable as possible by giving me pain medication as well as keeping me a ketamine drip. Hopefully through all these medications and the ketamine, I will be able to tolerate it because removing the colon is going to be extremely hard on me.

I am then scheduled to remove the colon on December 23rd. It is going to be a very long day when I have that surgery. My mom won’t be there for the surgery, but my dad will be there. I am very scared, but it is something that desperately has to be done. My colon has to come out because it is ‘dead’ and toxins are spilling into my bloodstream and going into my organs. I am literally becoming intoxicated and poisoned because of this. If the colon is not removed, I will literally die.

I will need a multivisceral transplant, which incorporates getting a new small and large intestine, stomach, pancreas, and liver, but it is all dependent on how bad the small intestine is when they go into me and remove the colon. If the small intestine is very badly affected, it will mean that I will need this transplant faster. It is the most dangerous transplant that you can have and only 6 hospitals in the country actually perform this transplant.

I won’t be able to go home until after the New Year. I am a little upset that I will be missing the holidays and won’t be able to see home for so long, but at least I will be starting the New Year as a “new person!” Helpfully I will be able to start the New Year as a HEALTHY person and brand new person! I just hope that nothing bad happens during any of this time because I don’t want to ruin the holidays for my family.

Well… that appears to be the schedule of what is going to be happening. It is going to be a very difficult time until we see 2015. But hopefully it will all be worth it.

I am just scared because I don’t know how I am going to last all this time though in Cleveland. We are literally going to be in Cleveland at least 5 weeks when we go back after Thanksgiving. I don’t know how we are going to be able to afford this because we dad won’t be able to work because he will be with me and we cant even afford it now with him working. That is why I am hoping that these next few weeks will hopefully bring in some much needed donations and hopefully I will find a way of raising the money that I need so that I can receive this life saving treatment.   So like I said before, if you can please help me in any shape or form, I would really appreciate it. Any help would really go a long way!

In the meantime, I really must hang on. I am really not doing well and in fact, the doctors have really increased my meds because they are not helping or holding me anymore. In addition, the amount of times that I have the ketamine comas/infusions is being increased as well. I usually have them every other week in addition to taking ketamine at home. However, now that I am deteriorating and nothing is really working, they are now going to give me the ketamine infusions/coma every week. Thank goodness because at least I don’t suffer when I am under the ketamine.

I am also still continuing the weekly surgeries for my intestines. I have to go for “cleanings” of my intestines because since nothing really passes through my colon, it literally stays in my colon and rots. It can easily perforate my colon and cause me sepsis. Never a dull moment. But not only does it help me medically and help me “buy” time because without these cleanings I can literally die, it also makes me more comfortable as well. I really look forward to Fridays and having this surgery because it really makes a huge difference in how I feel.

I don’t know why but besides getting so weak, I am even having a very difficult time eating… even more difficult than ever. I constantly feel something is stuck in my throat and nothing goes down. Even the littlest things that I used to be able to get down like the ice-pops and egg whites and ice cream are getting to be impossible to get down. To be honest, the only thing that feels somewhat ok or better than other things is gummy worms. I know… sounds weird, right?

I can’t believe that it is already October and the holidays are basically around the corner. I think that I heard that Christmas is less than 100 days away. Gosh… I hope it isn’t going to be a bad winter like it was last year. I can’t take the cold.

10680022_10101295230679320_4427613861236313306_oThis month is Halloween, which used to be one of my favorite holidays. I used to love cutting open the pumpkins, decorating the house, and giving out the candy to the kids. However, as I got sicker and sicker the “fun” of this holiday kinda disappeared. I used to deck my house out with all the decorations and stuff, but nowadays I don’t really decorate. I only cut open the pumpkins because I make the seeds to eat for my family because what would Halloween be without pumpkin seeds? No pumpkin seeds taste the same as when you get them fresh out of the pumpkin. It is like apples… no apple tastes the same as when you freshly pick them from the tree. So I bought a pumpkin that really caught my eye because it has all this stuff all over it. I thought it looked really cool so I bought it. Maybe when I get better next year my love for decorating and celebrating the holidays will come back

So… I guess that sums everything up. I will write more when I know more. My parents’ anniversary is approaching quickly, as their anniversary is October 19th. I only wish I could get them a present or send them out to dinner, but unfortunately with everything happening, I can’t. They deserve so much. They have been married for 39 years. I am glad to call them both my parents and I only wish I have “love” like they do some day. I cannot begin to describe how blessed I am to have such amazing parents in my life.

Well… I am going to get going. Thanks for keeping me in your prayers and for all your encouragement and support.

Love,

Fallon

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