FALLON MIRSKY

Please help SAVE MY LIFE!

May 29, 2014

1669742_10101154736934910_5958108861925486837_oMaking a difference in the world… that is what I really wanted to do with my life. It was my goal in life to leave an everlasting mark on the world. You know the quote that states, “Some people come into our lives and quickly go. Some stay for a while, leave footprints on our hearts, and we are never ever the same”? Well… I still want to achieve that goal even if it wasn’t the way I originally intended it to be.

However, I really need your help if I am going to get better. I am really not doing well though to be honest. I am jovial and spunky who is trying my hardest to keep up a happy demeanor, but it is definitely not easy during this long journey. We are just hoping that I will be able to make it to Cali because things have gotten really bad. We are really short on funds and without the money… we don’t know if we are going to be able to go. Everything is booked and ready to go… it is just a matter of hopefully coming up with the money to pay for it. It really stinks to know that there is a treatment out there and you can’t get it because you just can’t afford it. It is like when you tease a dog with a bone by wagging it in front of its face and then you don’t give him the bone after all that. The hard part, and we are not the type of people to ever express personal family matters or ask for help from friends and/or strangers, is that financially we are not able to afford the cost of traveling to and from New York to California, nor are we able the current medications or treatments that I need here in New York. We don’t even know how we are going to afford all these medical bills, which is another expense entirely. We are out of our minds with worry and do not know how we are going to make this all happen financially.

Medical bills are piling up. I need so many medications and unfortunately we can’t even afford to get them. Very few are covered under insurance and the ones that are still have extremely high copayments. The others are not even covered by insurance… so it is completely out-of-pocket.

We are in desperate needs of help. We are asking for ANYTHING that anyone can do to help out. Please, we are begging for assistance. Please help us in raising funds. Share with your friends and family on Facebook! Send a link to this site in an email! Any little bit helps.

Of course prayers are also needed. As I am continuing to worsen, I am really asking to be added to your individual prayer lists and any other church or group prayer lists you may know of. Even if you can’t afford to donate, we welcome your prayers!

I am just continuing to worsen. I am getting severe edema in my legs and even when I spend the nights with my legs elevated, it doesn’t make it better. My heart just isn’t functioning as sufficiently as it should be. My heart rate and blood pressure are continuing to drop. I am getting weaker by the day. When I breathe I can feel and you can hear gurgling in my lungs. I am so thirsty and yet, each time I drink I end up drowning more and more in my own fluids. My poor little fragile body can’t take the vomiting anymore and I barely can eat anything anymore. Even the littlest things such as ice cream and egg whites and my ice pops are getting to be extremely difficult to get down.

My weight continues to dwindle, which is something I cannot afford. When you weigh in the 60s, even losing an ounce is a major deal. The doctors told me already that I am not allowed to have any fat or sugar in my diet. My body cannot handle it anymore and will only make the gastroparesis and neurological disease wore.

My legs are so swollen and they are red like fire. It even gets to the point that I can’t even wear pants on my legs because the burning is so intense. It is like I have gasoline poured all over my body and I am on fire. I am also constantly feeling like I am getting spasms and knots throughout my entire body. The cramps that I get in my feet are so intense that I just want to scream. They are the ones that you want to jump out of bed and walk on because you can actually see your limbs twist and contorting in all different directions.

The autonomic dysfunction is just completely horrendous and out of control. The slightest touch is so painful and the slightest change in temperature is wreaking havoc on me. So you can just imagine how horrible I am feeling with the weather being the way it is.

I am so very weak. I barely can get off the couch during the day. I spend the entire day on the couch resting for a good 1-2 hours to be up with my family. Then after those 1-2 hours, I suffer even more for it because I exacerbated my illness. I can’t go to the bathroom and I am so blocked up. Even walking to the actual bathroom when I do have to go is getting to be too much to bear. I really need help and help badly.  I really need to get to Mexico.

10379579_10101154735128530_9979472875057676_oI can’t remember the last time I slept at night. I spend the nights in pain and there is not enough medication that I can take to even dull the pain even a tiny bit. Thank goodness I have Missy, my cat! She is my little babysitter and buddy. We spend all night together. In fact, I actually taught her how to talk because whenever she comes into the room she announces that she has arrived by actually “talking.” It really is something. Even when she comes into the room and I say “Hi Missy”… she actually talks back!! Missy is really some great cat!!

In the meantime since we cannot afford my miracle trip to Mexico, I have to undergo the next best thing and have to buy time and therefore, we have to head to California. We are leaving for California hopefully on Father’s Day to have all the presurgical testing and all the exploratory surgery to figure out exactly what is the best way about going through with the surgery. Another huge trip that is going to take a great toll on a tired, frail, and exhausted body. However, we really need to buy time til then and therefore, the doctors have me going for surgery every Friday to get as much mucous and stool and other stuff out of my GI tract because I cannot get them out on my own. My colon is officially dead and needs to be removed and therefore, whatever goes into my body and is not vomited will end up “rotting” and “fermenting,” which can lead to further problems. So it really is essential to have this surgery done because we can’t afford for my intestines to perforate or rupture. As it is, the colon is extremely dilated and there is so much pressure on my organs already (especially in the pelvic region) that they are shutting down.

Originally, we were going to hold off the surgery and go for the ketamine coma/infusion instead, but since the doctor said I was so bad during the surgery last week, we decided to have the surgery again tomorrow and put off the ketamine for Tuesday or Wednesday. I desperately need some housekeeping on my GI tract, as I need to be vacuumed and suctioned out. It is so very bad inside because of the gastroparesis and the doctors are very worried that I am going to perforate something or go into sepsis.

When I had the surgery done last week, it was so bad inside that the doctor was thinking about admitting me into the hospital and leaving a tube inside 24/7. However, after careful consideration, the doctors decided against this because the hospitals here really aren’t equipped to handle my case and they are so afraid that the nurses and doctors are going to make my illness and condition worse because they are unfamiliar with me. After all, I am extremely hypersensitive and can’t be treated like a regular patient. In addition, I am extremely weak and fragile and therefore, the doctors don’t want to also risk me picking something up in the hospital because that is the prime location to pick up an infection.

Yet, the doctors are thinking that there is a further obstruction in the intestines that they aren’t seeing. The doctors are prevented from seeing it because I have too much “smutz” inside. They are also afraid to blow me up with air too much because I can’t expel it. In order to see higher up in the colon, they would have to blow it up even more, which is not good considering my circumstances. But after the week that I have had… they are going to try to do some more Friday.

So it looks like tomorrow will be another day of Surgery. One day I won’t have to worry about going for surgery. One day I will be able to say TGIF and it will really mean something to me because Fridays and the weekends are supposed to be filled with FUN!! At least when I do go for surgery here at Mount Sinai, they all know me there already since I have surgery every week. They know how to treat me and when to start the IVs and how to handle me because like I said before, I can’t be treated like a typical patient. It is good that they know all this because it can be really exhausting “standing guard” so that no one touches me or bumps into me because the slightest touch is extremely painful or having to keep explaining to them about my disease and condition and the nature of it. It is even exhausting having to reassure them that “everything is ok” when the monitors show differently because my blood pressure is so very low and the pulse ox is low too that that the machines are literally going off stating that I am in an “emergency” state.

I never thought that my life was going to turn out the way it is now. I was such a happy child and wanted to make such a difference in the world. I don’t know what I did to deserve this horrendous disease and I don’t know why I continue to suffer from it. But I do know something… I still want to make a difference in the world and leave an everlasting mark in the world. After all… Life is not about the steps you have taken but the footprints that you have left behind.

In addition, Even though tonight I happened to be in a lot of pain (which is no different from my usual self), I was very entertained by a YouTube video of a concert that the music department put on. As I laid in bed watching the Middle School Orchestra perform their spring concert, I kept remembering the days when I was able to play the violin and when I was actually able to perform in concerts too. It took me back to the times when I was in middle school and high school… when I was the one on stage performing in the orchestra. I remember how well I used to play the violin and how happy I was. I remember how I used to be Concert Mistress and how I even received a perfect score on the highest level at NYSSMA.   As I watched the concert perform tonight, I couldn’t help but remember my past and wonder where all my ‘happy’ times went. What I would do to be able to turn back the hands of time and to go back. I long for those days when I was in school, playing the violin, being a competitive figure skater, having fun, having friends. Who would have ever thought that I would end up the way that I am now? Who would have thought that would have ended up having that all taken away from me, as I no longer can play the violin, skate, have fun, and even have lost all those wonderful and dear friends?

In fact, tonight when I told my dad how much I miss the younger years and when I played the violin, my dad said to me that I better get back to playing the violin because after all we still have it here waiting for me.   Me playing the violin was the only thing that used to put my dad to sleep. He loved when I would play it.

One of the worst parts of this illness is that it really takes over my memory as well. I don’t remember all that has happened to me in the past. It really is horrible because I have a hard time remembering all the pleasurable things that I once did. Many times when my parents reminisce about past activities, it is like I am hearing about it for the first time because I can’t remember them. I guess that is a good thing that I have always been a photo crazy person because at least I have plenty of photos to look at. And to think… people used to make fun of me because I would take so many photos. It pays off now. I just wish I could remember all the good times that I had could be remembered. Sometimes I wonder if it is the disease or the drugs that I am on. Sometimes I wonder when I am “cured” if it will all come back. In fact, a great fear of mine is that none of this stuff that I have lost will ever come back. But just as I am hoping that I will be helped and cured… I am hoping and praying that all will come back as well.

Footprints… They tell you where you have been, but not where you are going to go. So as I continue to remember my past, I am even more determined to follow my dream, which is to make a difference in the world. I don’t know if I will be able to make a huge difference in my own life, but if I can help someone else… then I really accomplished a lot. Maybe my blogs will help someone understand my illness, maybe someone else going through my illness will read these blogs and feel that they are not alone, maybe my perseverance will show others that you can do anything that you put your mind to.   But I really do truly want to make a mark in the world before I leave. All my life I wanted to be a doctor so that I could help others. However, being afflicted with this illness has really complicated that goal and it might even prevent me from achieving it. Yet, even though I may never become that doctor that I always dreamed that I would be and make a mark in society in that aspect, maybe I can still make that difference that I so want to make!!

Lao Tzu once said, “The journey of a thousand miles begins with one step.” As I lay here suffering from this horrendous and most painful condition that can exist, I am determined not only to help others understand this horrible illness, but I am also determined to help others who are afflicted with this illness to maybe get some relief or better be able to ‘cope’ with having it. If I can prevent someone from suffering the fate that I have been suffering… then I have really achieved more than I could ever have hoped for.

I have been really trying to figure this illness out. Being unable to do anything and isolated because I am so hypersensitive to everything… it gives you a lot of time to be by yourself and think. So I thought that I would try to see if I could come up with an “answer” to this illness and maybe try to understand it better so that doctors can cure it. So… I have been doing a little research here and there that I wasn’t going to share until I got enough evidence that what I had could be “something!” After all the research that I have done and from even experimenting on myself… I think my theory is kinda right and therefore, I think it is time to bring to light some of my thoughts. I don’t know if I am right in all my thoughts so I don’t want people to go running and thinking that I am making claims on things. Let me reiterate that these are just my thinking.

When I did my research, I saw that this disease really was genetically based. It was genetically based because the people that got it really for the most part were very quite similar in genetics. I am not a geneticist so I don’t know the real fundamentals, but I do know how easily “stressed” these people are and how the people that get this illness all tended to be perfectionists and high strung. All these people were great achievers who went beyond the call of duty to do something if asked. So already I saw how this illness affected certain people and not others and why certain people were prone to it.

This disease is a disease of the nervous system. It is a disease of the sympathetic nervous system, which is one of three major parts of the autonomic nervous system (the others being the enteric and parasympathetic systems). Its general action is to mobilize the body’s nervous system fight-or-flight response. It is, however, constantly active at a basic level to maintain homeostasis. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain. So essentially when you get this disease anything that relies on this nervous system is afflicted and that is why your entire body goes haywire.

When people are afflicted with this disease, the fight-or-fight response kicks into overdrive and never shuts off. As a result, everything in the body that relies on the nervous system and that gets affected and stimulated when the fight-or-fight response goes into gear gets affected and this, the homeostasis is then thrown off in the body causing all the other illnesses such as gastroparesis.

As you have seen with me, this disease is extremely painful and life-threatening because it causes havoc on the entire body. It shuts down organs, and wrecks the homeostasis in the body, which is so essential for a body to have in order for it to survive. However, there is no known cure at this time.

Yet, I think I might have found an answer. In order to cure this illness, you have to basically shut down the nervous system. All the nerves are being stimulated in the “fight-or-flight” response and unless you find a way of shutting them off, there is never going to be a cure from this illness or the other illnesses that are associated with it such as the gastroparesis. Essentially… if you cure the autonomic dysfunction… you cure the gastroparesis and everything else.

The first line of treatment is nerve blocks. Nerve blocks are given to patients when they are first diagnosed because the disease usually is confined to one particular area. After the nerve blocks are done, a patient usually feels better because it “puts the nerves to sleep.” Yet, these nerves blocks are only temporarily. People stop them because they start to feel better and such, which only leads to progression of the disease because like I said before the blocks are only temporarily. Yet, if people continued to get doses of nerve blocks and flooded the area with anesthesia to put the nerves to sleep and essentially to “rest”… then I really feel that after a sufficient amount of times… they will stay asleep forever.

Yet, for people like me who have it everywhere and have other issues as well such as the extreme gastroparesis, there needs to be a more intensive procedure. That is why ketamine needs to be used. This is the reason why I need to get to Mexico so badly. Ketamine is an NMDA receptor that can put the nerves to sleep and reboot the body. However, the amount of ketamine that the body needs in order for this to happen is astronomical and cannot be given in a single dose or even in a dose that is FDA approved. That is why the ketamine coma in Mexico is the right way to go.

Only by going to Mexico to get the full ketamine coma will patients that are suffering as bad as me can be helped. It is only Mexico that will be able to give enough ketamine that will shut down the nervous system and reboot it. It will receive enough anesthesia during this time to officially “quiet” the body down and stay that way for a longer period of time because in Mexico you are given the ketamine in such a high dose around the clock for about 2 weeks. It is at such a high rate that you need to be fully intubated and totally on machines because your whole entire body is essentially in a “coma.” Only by giving your body this significant amount of time of REST will the nerves quiet down and you will be cured of this illness. Of course boosters are going to be needed afterwards every so often so that the nerves don’t reawaken.

By quieting the nerves down, I truly believe that a person can be cured. Anything that stirs up the inflammatory process (i.e. caffeine, processed foods, stress, etc.) is no good because it only adds to the nerves already being on edge. So… I truly believe if you cure the autonomic dysfunction, you will cure this whole entire problem including the gastroparesis too, which would enable me to eat everything again.

I know that what I say is true as well because I do know that when I am stressed more than usual or aggravated or have anything that might “inflame” my body, my illness is worse. I will bloat more, the pain will be worse, the gastroparesis will be worse; I won’t be able to have any mucous pass, etc. However, if I am totally tranquil and there are no stresses that I have in my life, it is much better and there can be a huge difference seen.

Could I be onto something? I don’t know. There is more to this also, but I am still working out the kinks. I don’t know exactly if what I even wrote is readable or understandable. But maybe one day when I finally get everything organized and situated… I will be able to have it published. I just wanted to share a little of this info with you now.

Well… I guess that is about it. I am reading a new book called “The Cuckoo’s Calling” by J.K. Rowling. She wrote this under a different name. I loved the “Harry Potter” books and therefore, I decided to read this one too. She is coming out with the following book in June (I think) and therefore I want to definitely read that one too.

10333749_10101156581957470_4946205092979766233_oWell… now that the summer is here “America Got Talent” is back on TV. So of course I will be back to watching that show. One of my best friends happened to get me an autographed shirt from Howie Mandell, Heidi Klum, Howard Stern, and Mel B.

Thank you again for all your help. Any donation of any amount is much needed and so appreciated.

Love,

Fallon

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May 24, 2014

10403826_10101150288823960_5421187661875855259_oHi-

Not having a very good night tonight. It has been a long, miserable, and torturous day today that continues throughout the night. I am writing not only to update you on all that is happening, but to also with you a very HAPPY MEMORIAL DAY and also to hopefully take my mind off this miserable pain and agony that is going through my entire body as we speak. I don’t know if it is possibly because of the weather outside or because of the surgery I had this morning… or even if this is just the way things are… but things are just unbearable tonight.

I am having one of those nights that you just want to climb the walls or just sit there screaming your head off in pain. In fact, as I sit here writing this tonight, the tears are flowing down the face because of the pain that is persisting all throughout my body. The throbbing, aching, burning, twisting, agonizing, etc. pain that I am feeling is nonstop but it persists in a way that goes from the surface of my skin to deep down to the core of my bones. There is no escaping this pain.

There isn’t enough medication that I can take to “kill” this intolerable and wretched pain. I have tried all that I can, but it still persists. So there is absolutely nothing left. I honestly need to just endure it now because that is all that is left. To think… there is possible treatment out there to help me and to free me from this horrific life if only I had the money to do so. I pray and only hope each night and day that I will receive enough donations so that I can be freed from these chains of torment that have me locked away!

Recently I have really wanted to make a huge “change” in my life. I was thinking of changing my appearance, as well as my name. I thought that by doing so, it would allow me to leave my current “Hell” and allow me to live fresh and anew and allow me to live normally… like maybe leaving this current life and body would allow me to live a life that would enable me to accomplish all my dreams and desires, as well as to allow me to forget about all the Therefore, I tried to change my hair color and style. I thought about changing my name to “Kylie,” but in reality… I will always be “Fallon” and no matter how much I try to change myself… I can run, but I can’t hide from all that is happening. There has to be a reason why this is all happening to me. I must be getting tested for something!

Anyway… I guess I should let you know all that is happening. First off… the trip to Los Angeles, California, is again officially booked. We leave Father’s Day and we are expected to spend about a week there. I have to undergo various presurgical testing and procedures so that the doctors and surgeons can know exactly what is needed. As it is when we went to California the last time it was discovered that I don’t need surgery just to remove my colon, but it appears that I need surgery on my esophagus as well because it looks like I am suffering from Achalasia to so many other ailments. Achalasia is when the muscle ring in the esophagus does not relax as well. Therefore, the normal muscle activity of the esophagus (peristalsis) is reduced. This could be one of the contributing factors as to why I am aspirating so much.

However, it is all contingent on whether we receive enough donations. That is why I am pleading and begging for your help. If you can do anything to help make this happen, I would really appreciate it because I desperately need to have these surgeries and in order for them to take place… all this is necessary. So if you can please spread the word that HELP is needed or even if you have any additional fundraising ideas, I would appreciate any help in any form that you can give me. Even if all you can do is just spread the word of my website (www.gofundme.com/FallonMirsky) and say a prayer… anything and everything will be much appreciated.

In the meantime, I just came home from the hospital today because it was another day spent getting “cleaned” out. Soon enough I hope to really get to appreciate the saying “TGIF!” Yet, Fridays to me only means going to the hospital to have surgery. What I would do for a “normal” life.

This surgery that I had today was definitely a real “battle” today. Even the doctors said, “We tried but were defeated.” Unfortunately, when the doctors went inside, I was so bad with all the stool and blockages that it was basically a losing battle. They did as much as they could, but the doctors said that it really was impossible to do much because it was just “way too bad” inside.

Right from the beginning we had problems. I haven’t been feeling well and the doctors even had a huge amount of trouble placing the IV into my arm. The traveling from this past trip to California really took a huge toll on me and affected me greatly. It really worsened and exacerbated my condition, as well as triggered off my autonomic dysfunction. I was in so much more pain and more hypersensitive than usual that I couldn’t even sit still to even put the IV into my arm.

I even had words with one of the nurses after I woke up from the surgery. Everyone at the hospital knows us already and knows how to treat me since I am there basically every single week. I am not like a ‘regular’ patient and therefore, I cannot be treated like a typical patient. However, for one reason or another when I was in the recovery room I happened to get a nurse that I never had before. Due to the nature of my illness, I really cannot tolerate IV lines let alone the fluid that goes through them. So you can definitely forget about me getting an IV at a fast rate because it is like shattered glass going through my veins because I am so hypersensitive. I am so sensitive to the slightest amount of solution going through my veins that the nurses and doctors know that the IV has to be taken out immediately when I wake up and if does have to be run, it has to be run at the slowest rate. However, since my blood pressure was very low (and it has even been lower than usual because of my deteriorating condition), this new nurse was really freaking out. She didn’t know how to handle me since I can’t be treated like a normal patient and therefore, she opened up the IV lines to give me tons of fluid to try to increase the pressure. I kept begging and yelling for her to stop the IV, but she kept insisting that it was for my own good because my blood pressure was too low. It wasn’t until my dad finally came back to the room that it was able to be stopped because he had confirmed what I said was true in that this was my “normal” blood pressure.

The doctor also paid us his usual visit after the surgery like he always does to let us know how it went. That is when he told us how awful it was inside. I was in a lot more pain than usual and he said it was expected because he had to fill me up with a lot more air because of how horrendous it was inside.   He told me that I really needed to go into the hospital at this point to be drained because of how bad it has gotten. Even though he had tried to suction our and vacuum out as much as he could so I could be decompressed and remove all the stuff that is just “sitting there”, it really was too great of an amount. He said it was like a “losing battle.”

As a result, I am now looking at going into the hospital as soon as possible to be “drained” out. I need to have a surgery done to have a tube placed in me so that they can drain out the mucous and stool for an extended amount of time because just doing this brief surgery wasn’t good enough. I really needed to be drained for a good 24-48 hours at least because of how much there was inside. It really needs to be done as soon as possible as well because this is all added pressure that is getting put on my organs and it can also cause my colon to perforate and rupture. It can also cause me to go into sepsis. However, the problem is that it is the weekend and it is also a long holiday weekend and therefore, nothing can really be done until afterwards because we all know that nothing really gets done on weekends… let alone holidays!!

The doctors were hoping to avoid putting me in the hospital to have this treatment and hoping that we would be able to just be able to control the situation by having the weekly surgeries. They didn’t want to put me in the hospital because of the chances of me getting sick from an infection in the hospital increases since I have no immune system and they were also concerned with the way I would be “treated” because I cannot be treated like a “typical” patient. I need special TLC and they really didn’t want to risk having any nurses or doctors exacerbate my condition. So… the doctors decided this time that when I go into the hospital and admitted, my dad will have to remain with me as way to remain “watch” over me. He will have to help out because with all that will be occurring, he will have to make sure that nothing that the nurses or doctors do will exacerbate my condition. So even though I know that my dad really can’t afford to take any additional time away from work, I am really thankful that he will be spending the entire time that I am there in the hospital with me. At least I know when he is around that nothing “bad” can really happen!

So I just got to hang on and get this all done by the time we leave for California, which is June 15th. In addition, in the meantime we have been in constant contact with the doctors in California. The doctors in California are so great because they actually get back to you and actually get things done. They have been busy getting things situated there for me and getting special preps for me because I can’t be treated like a typical patient.

The doctors in California had also changed my medication regimen. I already take so much medication and they have increased it more. I take over 50 pills daily along with injections and to be honest… I take more pills than can kill a horse. The doctors even wonder how I can actually manage taking all these pills because someone that is like 300 pounds would not even be able to tolerate it. Yet, here is little me weighing in the 60s and I can tolerate all these meds. What can I say?? I guess I am just talented!!

Well the doctors increased the dosage of some medications and they also added another pill. The doctor wanted to add one particular pill, but they are waiting on it because I cannot afford it. It is not FDA approved and therefore I cannot get it in the United States. It is a very expensive pill too, as it will cost me about $5 a pill and I will need to take it about 3 times a day. So it really would be quite expensive… something that we can’t really afford.

In the meantime though, the doctor is trying another new pill though called CREON. It is a prescription medicine used to treat people who cannot digest food normally because their pancreas does not make enough enzymes due to cystic fibrosis or another condition, swelling of the pancreas that lasts a long time (chronic pancreatitis), removal of some or all of the pancreas (pancreatectomy), or other conditions. After all, the pancreas makes proteins called enzymes that help break down food into nutrients and helps to get the nutrients it needs. This new medicine is supposed to be like enzyme replacement therapy and therefore, it break down food so you can digest food and nutrients. So we are going to see if it works with me especially since all my organs are failing. It is like the one med that we haven’t tried.

The only thing is that you will never guess what this medication is actually made of. Guess! Well… this pill made from the pancreas of pigs, the same pigs people eat as pork. Can you imagine? I am a vegetarian to a point in the sense that I only eat Chicken and Turkey and therefore, I don’t eat pork. This pill really reminds me of the pill that they made for women with their placentas. What they can make pills of nowadays. It boggles the mind. But I guess if it works… that is all that matters!!

I also don’t remember if I told you in a previous email, but I am not allowed to have any FAT whatsoever anymore. It turns out that this actually goes against my entire system and makes things so much worse. It sounds really weird especially considering how small and how little I weigh, but the fact of the matter is that I can’t have that in my diet anymore. The doctors say I desperately need to gain weight and yet, I need to do this all without having FAT in my diet. They said that I should focus a lot on protein to do this. You know how hard that is going to be to gain weight because I can barely eat anything and the stuff that doesn’t have FAT barely has any calories whatsoever. I can’t eat so much to make up for the missing calories. I would never think that I would never be able to tolerate FAT in my diet. Even my parents thought I was mistaken until they heard it themselves from the doctor.

Well… I guess that appears to be all. There are so many new books out lately that appear so worthwhile to read. But, I am still in the midst of reading James Patterson’s book called “NYPD RED.” I am determined to finish this book before starting a new one especially since reading is so difficult for me. To think… I was an A+ student and had photographic memory before this illness took over. It just kills me how much this disease has robbed from me. Even the simplest things that I always took for granted like reading, eating, walking, etc. were taken from me. Just shows that you never should take anything for granted and that you should always appreciate everything that you have because you never know when it can be taken from you. Now I have such difficulty reading, as it is so hard for me to remember what I even read and retain. By the time I finish reading one page, I forget what I even read in the beginning. It also takes me forever to read something, as I used to be able to read a book in no time. Besides the recent book that I finally accomplished finishing, I can’t remember the last time I even finished a book. So I am determined to finish this “NYPD RED” book as well. I keep trying to read as much as I can and want to finish all the books from now on because I want to try to “strengthen” my brain by doing this. I am hoping it will get me stronger and back to my old self with my photographic memory and my great reading ability with me reading more and more. After all… there is the saying “if you don’t use it, you lose it” and therefore I am hoping that the more I “use it, the more that I gain!”

Finally, I finally accomplished receiving a parking meter permit. I already had a Handicapped-parking permit for both the state and the city, but I never had a Parking meter permit that would allow me to park at a meter without putting money in it. I can’t believe what “fighting” I had to go through in order to actually get it. I fit the criteria perfectly, but because so many people are abusing the fact that they have handicapped permits when they don’t even need it, it is ruining the chances of people who really require the permits. They were giving me a hard time getting the permits saying that “how can people not put money in the meter and park 3 blocks away and be able to walk to their destination?” or “how can they not put money in the meter because they cant and yet they can walk hours in the mall?” They also said “How can people not be able to walk around the car to put money in the meter and still be able to drive?” I kept informing them that I am not like the people that do this and are capable of walking distances. Also… where do you compare sitting in a chair and driving to standing up with crutches in hands and putting money in the meter? Do they realize ho difficult it is to use crutches and hold money and all other items at the same time? What hands do they want me to put money in the meter with if my hands are busy with the crutches? After all, I can’t even use an umbrella or anything f it rains because I use both my hands for the crutches. Sometimes I wonder where people’s heads are. In addition, if there isn’t a spot located right outside the place I need to go. I can’t stop. If the weather is not ‘perfect’ outside, I can’t go out. I can’t go out and waste time putting money in the meter because the extra time just spending outside with the wind hitting me causes me tremendous pain since I feel absolutely anything and everything. I told them that if only they should see my social calendar. I can’t even go to the mall. My calendar is filled with doctor appointments rather than social events. After constant displaying my case to them and fighting, I finally won my case. I just can’t believe what I had to go though in order to receive a permit that I desperately deserved and needed. What obstacles I had to overcome. Now that I have it though, I only wish that I could put this along with the other permits to good use and be able to go “out” and have some fun without just being isolated in my house or just using them when I go out because I have an appointment with a doctor. It is amazing what “normal” people are ruining for the people who really need it!

Well… gonna get going. Please continue to pray for me and please continue to help me in anyway possible. Please spread word of my website, as I am in desperate need of funds so that I can pay for the very lifesaving treatment that desperately need and so that I can get to California and Mexico… especially to California though because I am scheduled to go on June 15th. Thanks again for everything. Have a very happy Memorial Day Weekend.

Best,

Fallon

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May 21, 2014

10371977_10101143208213560_2369429091654651577_nHey-

It has been brought to my attention that I haven’t recently been “blogging” as frequently as I once was and therefore, I kinda have been out of touch. Sorry about that but as the time has progressed, I am sad to say that things have taken a turn for the worse and I am really getting sicker than ever. Things are down falling at a pace faster than I never have ever seen. It is like the harder I try… the harder I fall. Whereas before I was steadily declining, I am rapidly declining now. After all, it is only so much a person can take. It is only so much stress a wire can take without snapping. I really think this wire has frayed enough and it is at the point where it is snapped. I need help now because I am freefalling downward and if nothing is done and done soon I am definitely not going to make it. I have no parachute anymore to save me.

I am not going to lie and pretend that everything is “peachy” psychologically and that this illness isn’t affecting me mentally. I really have to admit that as much as this illness is taking a toll on my body physically, it is also taking a toll on me psychologically and mentally. I am not only physically exhausted, but I am mentally exhausted. Not only is my body ready to “give up,” but I am also ready to give up “mentally” as well. I just honestly don’t know how much longer I can take this. I can’t take the pain and suffering. It is nonstop and I have been doing it for too long already. I am trying to hold on and hope that I am going to get better, but the truth is that I am starting to give up.

I know that there is a “miracle” out there and a great chance that I can get better and will get better… but I also know that I cannot attain that on my own. I know that the chances of getting my life back and being able to receive the very lifesaving treatment that is necessary to save my life is out of my hands but rests in the hands of the rest of the world. I hate knowing that I am not in the driver’s seat of my own life. I hate knowing that I am so dependent on others in this world and I need others soooooo desperately in order to get better and get well.

I hate knowing that there is a potential treatment and possibility of getting better and resuming a life out there, but the only way of getting it is by others coming to my aid because my family cannot do it alone. It is like I am being teased in life because I see this possibility being held right in front of me and yet, I am unable to grasp it. It is like teasing a dog with a bone. I am sitting there much like a dog salivating and waiting so desperately waiting for it… and yet it keeps being taken away from me. I only hope that I don’t have to endure this much longer because the truth of the matter is that I am a time bomb that is detonating and it is going off very soon!

I need help so badly! As I said before, I am falling faster than ever. For one thing. My body is shutting down faster than ever because it is now officially feeding off itself. My blood pressure is falling, which is something that was already very low (80/60 so it didn’t really have that much room to fall to begin with), my heart rate is slowing, my bloods are falling, my weight is plummeting, etc. It just can’t get any worse. In addition, even though I was I was extremely thin and had a very low BMI and we all knew that I was malnourished and stuff, I was not technically “malnourished” according to my bloodwork before because at least I had a normal amount of proteins. However, it is now at the point that my proteins are very falling, which is extremely dangerous. When a blood test reveals that your total protein and albumin levels are low, this can be an indication of certain underlying health conditions.

It is no wonder that I am feeling so horrible. I am weaker than ever and it all goes in hand with what my bloods are showing. Protein is essential for tissue repair and muscle building. If your protein is low, your muscles can begin to deteriorate. This contributes to weakness, which is most often the first sign of a protein deficiency. It also results in muscle cramping, and as the degradation of your muscles progresses, simple tasks like walking might leave you winded, while climbing stairs seems unfathomable. I basically just spend my days on the couch because I am unable to move. It is at the point that we don’t even know if I am going to make it through a day or night.

I am trying so hard to keep my bloods up and to keep myself a “good” as can be. But it seems the harder I am trying to keep myself going, the faster I am falling. My teeth are rotting and my osteonecrosis on my jaw is worsening at a faster pace than ever. I desperately need also root canals and dental work, but due to the cost of that… there is no way that we can afford it. So I just sit here suffering and trying to deal with everything instead of actually “remedy” the problem because I just can’t afford it.

In addition, I desperately need medication to keep me going. However, my medication is extremely expensive and I take quite a lot as well. In addition, not all these meds are not covered by insurance, as they are bought out of the country because they are not FDA approved. If they happen to be ones that are able to be purchased in the country, they are so incredibly expensive even though I just have to pay the copayment because they happen to be in the highest tiers and of course there are not generics. In fact, I take more medication than a person that weights 300 lbs. I literally take over 50 pills daily… not including injections. So we desperately need to raise money because most of the money goes towards my medication… something I can’t live without.

I am really asking and begging for help. The call finally came in that I need to go back to California for pre-surgical testing for the huge surgery for my colon and esophagus, as well as for procedures. I desperately need to get to Mexico to have the Ketamine Coma, but since it costs at least $100,000 and we don’t have the funds at this time, we really need to do something to ‘buy’ time in the meantime, which means that we need to go to California to have surgery on my colon and esophagus. Unfortunately due to my complicated nature of my circumstances, there really isn’t any local area or doctor that can perform these operations.

I need to get to California because I need to have surgery to remove my colon since I have severe gastroparesis and it is literally ‘dead.’ It is severely dilated, causing blockages, and the doctors are fearing that if something isn’t done quickly that it could become perforated or ruptured or that I can go into sepsis. As nothing moves through the colon, anything that remains in my body such as all the medication and food that I take and don’t throw up ends up rotting. So I can easily get a life threatening infection like sepsis especially if the colon ruptures or perforates.

So I need to have surgery to remove the colon, but the doctors are wondering on how best to proceed with this operation. They are hoping to be able to proceed with the operation without having to do a ileostomy and give me a bag, but they don’t know if it will be possible. So they want to do some testing on me to further get a clearer picture as to what exactly is needed and needs to be done. They want me to come back to California to come for tests so that they can see if possibly they can hook up my GI tract in a way as to avoid the bag. In addition, since I have never been to this hospital before, they want to get a very CLEAR picture of my entire GI tract and therefore they want to do some additional testing to further determine that they are not ‘missing’ anything.

The doctors also noted that my esophagus doesn’t work because of the gastroparesis either. Therefore, they want to do additional testing on that as well because they told me that I need surgery on that as well. I need to have surgery in order to help me to swallow because as of right now I am having extremely hard time swallowing things. It is a HUGE problem because not only is it making it impossible to eat anything, but also it is causing me to aspirate into my lungs. It is extremely life threatening to be aspirating into your lungs and I can easily get Pneumonia or die if I aspirate. As it is… I am already filling up on fluids and aspirating. When I breathe you hear all the fluid buildup in my lungs. It is really freaky. It really impacts my breathing as well and makes it extremely difficult to breathe. Whereas before I was able to manage to clear my airway to a point by coughing, it is not possible now.

10258285_10101143417718710_1868465021078892476_oWell… the call finally came in today that the time to go to California for all this testing and such is scheduled for the week of June 15th. Ideally they would like to have it sooner because it is really an emergency, but unfortunately there is one or two tests that don’t have an opening until that time and they don’t want to have me coming back and forth. It really is too much on my body. So there really wasn’t any choice but to wait until all the tests could be arranged. After all, California isn’t exactly “close!”

So we leave on Father’s Day for California. I just hope that we will be able to afford to go because I know how expensive that this trip is going to be. Los Angeles is really expensive and I know how expensive this past trip was and it was not nearly as long as this upcoming trip will be. So I am really hoping that even though I need to have to get to California as soon as possible, I am hoping that at the very least it will give me time to raise some money for the trip since I have to wait until Father’s Day to go. But I can’t do this without your help. So if you can please do anything to facilitate this… whether it is by fundraising, sharing my website, etc. I would really appreciate it.

The doctors have arranged to have all these different tests and procedures performed on me. However, since I am not their ‘typical’ patient, I cannot have the same prep or care as the regular patient. So they really had to take their time with me and come up with a unique plan. They really don’t know how they are going to get me to empty my GI tract enough to get a thorough look of it, but they are working on it.

In the meantime, I have surgery every week here to be vacuumed and suctioned and therefore, I have it this upcoming Friday. What a life this is. I also have my ketamine infusions to endure, which I would take in a heartbeat because that is the only thing that saves me from this Hell. I wish I can just stay in a ketamine sleep forever because I just can’t take the suffering. The pain is just unfathomable.

I would do anything to get well. I can’t wait to be able to resume my life. I am only hoping that I get that chance. I know though that I am really running out of time. But I am only hoping and praying that by the help of others I will be able to get to go to Mexico and California and receive the lifesaving treatment I need to save my life. After all… I so desperately want to become that doctor I want to be, have a husband, have kids, make a difference in society, enjoy life, etc. I have lost so much because of this disease and I don’t want to lose anymore.

10330413_10101142982276340_8811492113079657494_nIn the meantime, it is just about holding on and hoping. I try to keep myself positive with my cat, dog, and turtle!! I recently made a book of my past trip to California with my dad.  I love taking pictures.  I take pictures of literally anything… much like my dad.  When my dad gets his hands on a camera… he takes pictures of anything and everything as well.  In fact, when I wake up from a procedure, I never know what I can find in the camera because he will literally take tons of selfies, pictures of his teeth, eyes, dirt, IV bags, bugs, etc.  So I know who I take after.

So I like to make these photo books that actually look like “real” and “published” books.  I don’t like regular photo albums because the pictures can just fall out and become lost.  I like when they look like “real” books because this way they can last forever and the pictures can never disappear.  It also looks so professional and I can decorate it and make quotes and descriptions.

On that note… I guess I will be going. I am getting tired and weak and I am in too much pain to write more. Just want to remind you that bracelets are still available for $5. If interested, please inbox me at Femirsky@gmail.com. They come in pink or blue and say HELP FALLON FIGHT! All money goes towards helping to pay for my medical expenses.

Thanks again for all your support.

– Fallon

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May 15, 2014

10257784_10101143417349450_6402387131502407967_oHi-

Well… I finally made it to Los Angeles and I had my doctor’s appointment so I have lots to tell. I would have written yesterday when we arrived, but like always, I was too ill when we arrived to write because the travelling really took a HUGE toll on my fragile body. I really wish that I didn’t have to travel across the country to get help, but unfortunately, it appears that the only help that I can receive is NOT in New York. It seems strange considering the fact that I live in New York and New York is supposed to be notoriously known for their great hospitals. But, I guess they aren’t willing to take as many ‘risks’ or anything as much as other places. So I really have no other choice but to travel to places out-of-state if I am going to save my life and get the help that I so desperately need.

It is so funny that the one state that I always wanted to live in all my life is the actual state that I am getting medical help in. All my life I wanted to live in California. In fact, I wanted to go to college in California, but my parents said that it wouldn’t be a ‘good’ idea because it was across the country and if anything should happen… there would be no family nearby. I guess they had ESP or something that something was going to happen that I would need family nearby me more than ever as I got older because there would have been no way whatsoever I would have been able to live in a place by myself. If I didn’t have the help of my family, I would have been dead a long time ago! Thank goodness I have them! But… I do have plans that once I do get better, I am definitely going to resume my life, become the doctor that I always wanted to be, and to live out my life in California like I always wanted!

But I still have time for that because the main thing right now is that I get my health back on track because without my health… nothing is going to happen. People don’t realize how precious your health really is and that “health is wealth.” When you have your health, you really have everything in the world because you are capable of doing anything and everything you want; the world is your oyster. However, when you are ill, you are at the mercy of everyone else. You can’t make a living, you can’t pay for things, you can’t enjoy yourself, you can’t do what you want, you lose people, you can’t live out your dreams, you can’t travel, etc. Believe me… I speak from experience. If there is one thing you should never take for granted, but always appreciate… it is your health!

During this trip I have learned one important thing. I learned that “if you are depressed you are living in the past, if you are anxious you are living in the future, and if you are at peace you are living in the present.” It is a famous quote by Lao Tzu. I have had so much happen to me during this trip that I learned that to truly enjoy myself and be at “peace”, I really need to just live in the current moment. We often spend a lot of time ruminating on the past or agonizing over the future. Instead, we need to take a deep breath and try to be present as much as possible. Don’t let your past and future lives get in the way of the wonderful life you’re living right now. We need to live life to the fullest at the current moment and take advantage of every single thing you experience because you never know when it can be taken from you. I have truly learned this the hard way.

Knowing that I am really running out of time and not knowing how much time I have left, I have learned to appreciate everything in life no matter how small they may be. I also don’t take anything for granted anymore and that is why I like to see and do as much as possible because I never know when I might never get that chance again. That is why when I traveled to California… I begged and begged my dad to please take me to see LA because I never have been to LA before and it was a place I always wanted to see. Thank goodness my dad listened to me and this trip wasn’t just filled with medical appointments. I finally had some happiness in my life, as I got to smile and feel kinda like a normal person in a way for the past few days.

737351_10101141920903340_6125556515126608943_oAfter a long 9 hours, we finally made it to California. It was a very interesting trip from the beginning though because even from the very start of our journey from leaving LaGuardia airport, we had an adventurous time. To begin with, we had the people from DANCE MOMS on our flight that went from LaGuardia to Chicago. It was really awesome to meet them in person. I first saw Jill and I was like “it can’t be!” But then when I saw the other ‘dance mom’… I knew that it just had to be!!

However, the adventure didn’t just stop there. When we got to Chicago, we were fortunate that even though we had a stopover, we didn’t have to change planes. Yet, when we went to takeoff for our final leg to Los Angeles, we had to turnaround and go back to the gate because of “technical difficulties.” We were delayed for about an hour while they figured all these problems out. Turns out that they had to add more fuel and to the plane and do some other workings on the plane. Made you wonder how this plane made it to Chicago in the first place without any problems.

When we got to Los Angeles, we were totally zonked from the trip. Traveling 9 hours is not easy. It really exacerbated my illness, which was expected because it always does. So even though I was really excited to be in Los Angeles and wanted to do something, we really were unable to do so because I was feeling too ill to do so. However, we met with the Concierge person and did set up a “private” tour for the following day because not only was I going to get to be able to see Los Angeles and Hollywood, but I was in for a treat because a great friend was coming to visit me as well.

I was really shocked when we got to the hotel on how nice this hotel was. It was simply gorgeous.  I felt so underdressed compared to everyone else that came because they were constantly having galas with actors, producers, etc.  There was always red carpets out and everything.  Apparently this was “the hotel” to be at.  When I did ask security who was coming though, they said, “We can’t really tell you because we don’t even know ahead of time because of security reasons.”  Even our room was gorgeous.  It had a little balcony and it overlooked the HOLLYWOOD sign even though it could only be seen in the distance.  It also had a huge bathroom and it had a window into it that you had to “fog” out in order to use it because otherwise you could see into it.  I felt like a princess in this hotel because it was just simply one spectacular hotel from the way the people treated you, to the way it looked, to even the way the beds felt! We only stayed at this hotel because it was closest to the hospital.  We are so afraid to spend any money here whatsoever that my dad literally walked across the street to CVS to get sodas because there are no soda machines here and he doesn’t even eat meals except for dinner.

However, disaster struck as soon as we got to the hotel.  When I went to take my ketamine because I was in so much pain, we realized that my entire ketamine bottle basically leaked out during the trip.  I had basically nothing left. I was literally freaking out because not only was I in severe pain, but the ketamine is basically the ONLY thing that works.  Plus, it isn’t so easy to get and I can only get it in New York at a special pharmacy because they have to compound it and everything.  Also, it is so expensive as well because it is certainly not covered by insurance.  Luckily, I was able to have someone pick it up for me so that I will have it when I returned home, but that didn’t help me now.  I also was stuck paying another $200 when I just paid for it a few days prior.  The next day though when we were getting ready, we turned the bag over and we saw that the bottom of the bag was covered in “white” stuff.  My dad was like “Well we know where all the ketamine went!”

Even though we came here because of my health and to see doctors, I was really fortunate and lucky to have one of my best friends come and visit me. For once a smile was put on my face and a trip was not going to be filled with all “bad” news. At the very least, I was going to have some kind of happiness. I couldn’t believe that my BEST friend was traveling 4 hours each way to come see me. Now that is what I call a GREAT friend. Even though she lived so far away and there has been great fires in California (forest fires that people have had to be evacuated from and there is even one literally five minutes away from her home now), she and her sister loaded up the kids and came to Los Angeles to see me. I couldn’t believe it.

So we all got to spend the morning together before I endured my doctor’s appointment and went on a private tour of Los Angeles. It was simply the best because the tour was catered especially to us and we got to see everything that we wanted. It was 3 hours of blissful happiness. In fact, it was a great experience for all because even though they live in California, they were never in Hollywood or Los Angeles either.

10257033_10101143416650850_8567188890227842041_oGosh… If I could live anywhere in this world… I definitely would want to live in Los Angeles. I would do anything to live actually in Beverly Hills. It is so nice and there are so many places to see and so many things to do. When I get better, I am definitely going to resume all my goals and become that doctor that I always wanted to be… all while living in California. It is simply beautiful here! I love it here as the people are amazing and so is the weather. It doesn’t get better than this!

We had an excellent tour of all the studios, the homes of celebrities, Rodeo Drive, The Hollywood sign, the Walk of Fame, and more. Gosh… These celebrities really know how to live it up. We saw the Playboy Mansion, Simon Cowell’s House, Janet Jackson’s House, Dr. Phil’s House, David Beckham’s House, Leonardo DiCaprio’s House, the Spelling Estate (which is HUGE), etc. In fact, when the gates opened at Christina Aguilera’s house, we were hoping that she would be coming out, but instead it was just someone that was servicing the house. Oh well!

10344314_10101143416995160_7005429830781015489_oWe also got a really close look at the HOLLYWOOD sign. We went to a special spot to get this look. It was really cool and we even got pictures of us ‘trying’ to holding up the sign!! I found it really strange though that a sign that was a landmark and as magnificent as this was not lit up at night though but only visible during the daytime.

10169382_10101143010295190_2744381616892164775_nWe also got to see the whole Walk of Fame of Stars, which consists more than 2,500 five-pointed terrazzo and brass stars embedded in the sidewalks along 15 blocks of Hollywood Boulevard and three blocks of Vine Street. Yet it is only at Chinese Man’s Theatre that you can see the actual handprints/footprints of actors. Since my mom wasn’t able to come with us, I made sure that I took pictures of the stars belonging to her favorite singers… Ringo Starr and Paul McCartney.

I couldn’t believe how my dad took to my best friend’s nephews. He really played around with the kids. Even when the littlest didn’t want to smile when we were taking the group shot, my dad picked him up and tried to get him to smile and such. My dad is such a wonderful person.

10371977_10101143208213560_2369429091654651577_nWell… like all other things… it had to end sooner or later. I had to go to the hospital for my appointments, so of course I couldn’t stay in my “fantasy” world forever. So I said goodbye to my friends and proceeded to Cedar-Sinai hospital for my appointments.

Everyone told me that when I go to the hospital that it would be very easy to bump into a “star” or someone famous.   Now I understand why all the rich and famous people are taken to this hospital when they say they are taken to a hospital for “rest” or for a “drug overdose” or something. This hospital is not only like top in the nation (it is ranked #5 in gastroenterology), but it is simply gorgeous. It really far surpasses any hospital I have ever seen in my life. The hospital is also HUGE.

The doctor was simply amazing that we saw. In fact, he was not feeling well and was thinking about calling in ‘sick’ today. Yet, when he saw that I had an appt for today and that I was coming all the way from NY, he knew that he was not cancelling under any circumstances. He took his time and spent about 3 hours with us. He was very knowledgeable about my condition, and he was extremely gentle. He explained everything to us as well and answered all of our questions.

The doctor said that I am a HUGE mess and I desperately need HELP ASAP! According to him time is of the essence, and I definitely do need emergency surgery.  However, he wants to do some further testing so that they know how to best proceed because they noticed a few other things that were not told to me earlier. In addition, they want to look into a few other things that can hopefully help me in not to have to have a bag. Unfortunately money doesn’t grow on trees and we cannot stay while we wait for all the tests and procedures to be planned and everything because those are all wasted days that we will have to pay for hotel, food, and other expenses unnecessarily.  It is also days that my dad is missing out on working.  With just testing and procedures, we will need a solid week at least, and therefore, we cannot afford to take more time away than already is needed because the more my father stays away from working… the more bills are not being paid and we cannot have that happen.

So… unfortunately we will have to return in another 2 weeks for about a week or so for testing because everything will be planned together.  But it is for the better because there is so much that has to be done before proceeding.  The only thing that stinks is that we need money to do this.  So I am hoping that we will really be able to raise a lot of donations during the next two weeks so that we can afford to come back because not only will the trip be expensive, but so will the testing.  The doctor also wants to put me on a new medication that is not covered by insurance, which is extremely expensive, and we will not be able to afford it by ourselves.

The doctor also knows how I don’t really want a bag. Therefore, he is trying to avoid having me get one and therefore, they are trying to access whether they can make a stomach pouch, then remove the colon and part of the small intestine, and then hook the rectum directly up to a very small piece of the small intestine that would remain. But of course that is all dependent on the results of the tests.

So when I return, I will be undergoing many tests. He wants me to go for an esophageal manometry test, an anorectal manometry test, gastric emptying study, even a special exploring colon study that is done under anesthesia, and more. He is already alerting the team and hospital about how “complicated” my condition is. This doctor is really amazing because instead of having a nurse or another member perform the test, he actually does it himself.

The doctor also wants to put me on a new medication. However, it is not FDA approved and therefore, I will have to get it out-of-the country and it will definitely not be covered under the insurance plan. But the doctor said that it really is necessary to try this drug because I am really on my last options and I am going to die. Yet, this pill is almost 10 dollars a dose and I will have to take it about 3 times a day. So unless I can get some help paying for it, I don’t know how it is going to be possible to use it.

The doctor also told me that I have to really watch my diet. I know it might sound strange but I cannot tolerate any fats whatsoever anymore. The doctor wants me on high proteins, but no fats or sugars. So I really need to be careful in what I eat because I definitely need the calories and such, but I just can’t have them in the way of fat or sugars. So I have to make sure that my ice cream that I live on is fat-free and sugar free.

So a lot has been happening. I don’t know the exact day that I am returning, but it should be like in about 2 weeks, and of course it is contingent on the funds. I am really hoping that you will be able to help me spread the word that help is needed and to ask people to please donate at www.gofundme.com/FallonMirsky or at the very least to say a prayer for me. The doctor said that I really need to hang in there because he knows how difficult it is for me, but I have to hold on as long as possible. He said that he would love to jump into surgery, but he doesn’t want to go in “blindly” and he wants to do what is BEST for me as well.

10330413_10101142982276340_8811492113079657494_nSo I guess I am going to have to hold onto all the strength that I have. My friend when she came to visit bought me a key on the tour that said “STRENGTH.” I am really going to have to keep that close to my heart and hopefully be able to hold on as long as possible. I am going to need all the support and encouragement that I can get because it is definitely not easy.

I also want to add that I am $90 away from hitting $25,000.00 from when I first started my fundraiser at www.gofundme.com/fallonmirsky.  I really hope that I will be able to hit that number!  Unfortunately though even though it is great that I raised that amount of money, it has taken since the day before Christmas in 2011, to raise this amount and as a result, the medical expenses that have occurred have far outweighed that amount.  It would have been great if I made that amount in a ‘short’ time like the time I have been asking just for Mexico.  However, even though it does state that I raised $25,000.00, unfortunately it was from before I had the trip to Mexico and some of the funds had to go towards medical expenses to pay for past surgeries, medications, etc. that existed prior to Mexico.  If only I could raise this money in a shorter amount of time, it would really be great.  Don’t get me wrong, I am really thankful that I raised that large amount, but it really isn’t that great of an amount when you take into consideration how expensive my medical illness costs me and how much I paid during the 2 years that I raised it.  If only I can raise this amount in a shorter time.

I am hoping and praying that through the help of others that I will be able to get well and be able to get the necessary treatment to save my life.  However, in order for that to happen I of course need plenty of donations.  Even $1 is one less dollar that I have to come up with and is very appreciative.  So if you can please help spread the word, I would really appreciate it.  Hopefully I can raise another $25,000.00 really soon and it won’t take me another 2 years to do so because I will never make it.

I want to thank everyone for supporting and getting me this far. I will definitely keep you posted, but as for now… I better get going because I gotta start getting dressed. Our flight leaves shortly to go back to NY. When I know more, of course I will write more.

Best,

Fallon

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May 10, 2014

1397813_10101138400897460_3743550488138515747_oHi All-

Just wanted to let you know that I made it home from the hospital. But unfortunately, I don’t know how long that will last. I have had lots of complications with this surgery and I even learned about a complication that arose the other day when I had the ketamine infusion/coma. Gosh…. I really need to get help and help fast. I really need to get to Mexico before it is too late. As of right now though, our main concern is to get to California to buy time so that I can at least make it to Mexico. We are scheduled to leave in 4 days to California to see doctors at Cedars-Sinai Hospital, but like usual, it is all dependent on the availability of funds.

I really need to get to Mexico to have the radical Ketamine coma performed or at the very least to get to California to have my colon removed as soon as possible because I don’t know how much longer I can undergo this new way of life. Since my colon has stopped working, I am forced to undergo surgery every week to vacuum and suction out my colon and intestines because there is so much liquid in them and there is no place for it to go. I cannot move it through and as a result, the colon is all dilated and it is filling up the pelvis and exerting pressure on all the organs in the abdominal cavity (especially the pelvis region) and causing them to shut down. The doctors are extremely worried that the colon is going to perforate or rupture, and that I am will go into Sepsis. If that should happen, I most likely will die.

I am really fortunate to have such a loving and caring dad who is able to take me to all my appointments, procedures, treatments, etc. on top of working so hard to try to provide for the entire family as well. We have so many bills to pay and money isn’t the easiest thing to come by. Not only are we having great difficulty paying for my medical expenses, but also we cannot pay our mortgage, utilities, food, etc. But my dad is working harder than ever to try to make ends meet and provide all that he can. I feel so bad because no matter how hard he works, it just isn’t enough. The bills are just snowballing out of proportion and I still can’t receive the essential lifesaving treatment that I need and the bills just can’t be paid, as they should be.

My disease has really taken a toll on the entire family. Yet, all my dad continues to say is “I am not going to let you die” and he is determined for that not to happen. But he doesn’t realize that it is not in his hands. I just hope that he doesn’t also kill himself in the process because he is working so hard and he is no youngster. I need him more than anything and if anything should ever happen to him, I would NEVER forgive myself. I already feel bad for all that I have done to him because he is at the age where he should be enjoying himself. Yet, he has given up his entire life and financial gains (i.e. retirement funds, insurance policies, etc.) to help me get well. He is working harder than he has ever worked to get me well, but I just don’t want to see him get hurt in the end. I do know that if anything would happen to me, he would NEVER be able to handle it. Talk about being a “daddy’s girl,” he only gets 4 hours sleep because he spends the rest of the day working… constantly on his feet… trying to make money so that I can receive the imperative treatment that I desperately need as well as try to pay the bills so that we have a home to live in. My dad is really the most awesome person that can exist. He is like a superhero!

Like always, my dad was there today to hold my hand and get me through another surgery. Thank goodness he was there because I wouldn’t be able to undergo any of this without him. He is not only my dad, but he is my very best friend. Even though this disease has wreaked havoc on my family, one positive thing that it has done was bring my dad and me so much closer. It created a bond that no one can break!

1397799_10101138400148960_6087084783664292847_oAnyway, I was so glad that my dad was there today during the surgery because it wasn’t an ‘easy’ one. I am getting worse in my condition and surgery, which is already dangerous, is getting riskier and risker. I am very weak and fragile and to be honest, I don’t know how much more my little body is going to be able to take. My blood pressure and pulse are so very low that it even amazes the doctors how I am still functioning. When they took my blood pressure today, they were shocked to find out that it was only reading around 65/35 with a pulse of 43. That is extremely low even for the fittest athlete, who is supposed to have low blood pressure and a low heart rate. To think also that these is my “awake” values too and that when I am sleeping or sedated that it drops even further. It really doesn’t have room to drop because they are so low already.

I also learned today from the doctors talking with my dad that there was a crisis that occurred the other day when I went for the Ketamine coma/infusion. I found out that I needed intervention because I wasn’t getting enough oxygen. My dad is used to hearing the machines alarm because my blood pressure and pulse drop very low at times, and therefore, when the machines alarmed the other day when I went for the ketamine, he didn’t think anything of it. However, when the doctors came in and saw that the oxygen level was dropping and only reading in the 70s, they knew that it wasn’t just a matter of it just being the “usual” drop or having the usual low blood pressure readings or something. There was a real problem going on.

Apparently I wasn’t getting enough oxygen while I was under the Ketamine because I had collapsed my trachea. Therefore, it caused the oxygen content to drop to in the 70s, which of course is extremely dangerous. The doctors literally had to unfold my trachea and prop me up with pillows because it appears that my trachea is losing its strength that when I tilt my head, it collapses. It no longer has the strength to remain open. So the doctors unfolded my trachea and fixed it because it was basically collapsed and then propped me up with pillows so that my head would not droop again and cause the trachea to collapse again. As soon as the doctors unfolded my trachea, the oxygen content did go back up, but I definitely wasn’t out of water. You can still see how hard my lungs are working and how difficult it is for me to actually breathe because even though I was getting more oxygen than before, I was still gasping for air. My dad told me that I was making the “weirdest noises” and basically looked like a “fish out of water.” He said that I was literally gasping.  It is amazing what you learn afterwards.  If it wasn’t for going for this surgery today, I wonder if I would have every found this info out.  I definitely would have wanted to know the other day when it happened, but I guess they didn’t want to alarm me.

So I am really weakening over all, and it really doesn’t honestly surprise me how much difficulty I had breathing when I was under the ketamine. I have been aspirating even more than usual lately, which has been making it impossible to breathe even at home. So no wonder it is getting worse when I am under the Ketamine as well. But this just means that I need to get whatever surgery that I need and definitely the coma in Mexico as soon as possible because they are already worried that my lungs won’t be able to come off the respirators. As I will be on the respirators during the Coma, they are scared that they are going to have difficulty extobating me because my lungs will further weaken when I am on the respirators. My lungs are not strong to begin with and therefore, we can’t afford for them to weak much more. Something really has to be done because the longer we wait… the more dangerous the actual procedures are getting, which are already extremely dangerous!!

The staff at the hospital though is so nice though and they really know how to handle me. As I can’t be treated like the “typical” patient because I need special care and such because I am extremely hypersensitive to everything including the slightest touch, they all are aware of my special needs. They are all very attentive and they make special arrangements so that I will be as comfortable as possible.

I am so lucky that the hospital works with me and tries to make me as comfortable as possible because they know how difficult surgery is on me. They usually start my IV in the operating room and do everything right before I go “under” anesthesia instead of prepping me beforehand. They usually prep patients prior to being taken to the OR and they usually have other nurses do the prepping, but I have the actual doctors prep me, start my IVs, and have it done right when I am going into the OR because even the IV causes me significant pain. So the doctors really go out of their way to stop what they are doing and to take care of me whereas they expect all the other patients to be ready and waiting for them so that when the OR opens up for them that they are “ready to go!” They also go extremely slow and explain everything to me that is being done, as they are especially careful not to do anything that might exacerbate my condition or disease because they know that even the slightest touch causes me significant pain.

In addition, they also give me special medication to help with putting me to sleep because even the intravenous drug that they inject you to put you to sleep, which is Propofol, is extremely painful to the normal patient. Since I am extremely hypersensitive and cannot even tolerate saline to run through my veins, it is like having razor sharp glass running through my veins and I want to literally have my arm cut off. So they usually give me a mixture of drugs beforehand along with Lidocaine to help ‘dull’ the pain.

The doctors also allow my dad to come into the actual operating room with me and he gets to stay with me until I am sleeping. No other patient really gets this treatment, so I am thankful that they allow me to have him tag along because I really feel more comfortable with him coming and being there when I close my eyes to go under. I always feel that nothing can go wrong when my dad is there so I am so much more at ease when he is there.   Even though my dad cannot remain in the OR during the procedure, they make sure he is in the recovery room as soon as I awaken.

My dad is so funny though because ever since I got him an iPhone, which he was the last person on the planet to switch from a flip phone and join the technology age, he literally does not stop using that phone. It is constantly in his hands and he loves checking his mail, going on the Internet, etc. For someone that had absolutely no interest in a “smartphone,” he really can’t get enough of it. Besides having his obsession with his phone, I guess boredom must also set in because what else can he do when I am ‘sleeping?’ Therefore, he usually takes his phone and takes pictures of anything that he can. You can’t imagine the pictures that I have seen him take because not only do I get pictures of me “sleeping” and under anesthesia and everything, but I have seen pictures of IV poles, machines, dust, etc. I even have seen selfies of him that include him of his teeth, his bald spot, his watch, his eyes, him making faces at the camera, etc. My dad is a real “winner!” I never know what I am going to wake up to see! So when I am out… unfortunately I can never be too careful because he is there to snap pictures of everything!

I just hope that I don’t end back up in the hospital tonight or that something else isn’t wrong. I don’t know if it is something to worry about or if it is because that I am just really thin, but I have a huge bulge in my lower abdomen where my colon is. I don’t know if it is because I am really thin and you can see everything that they did or if there is something really wrong with my colon or intestines such as if they are perforated or something from being “blown up” and suctioned.   The doctors literally had to go inside my colon and intestines and “blow them up/dilate” them to go inside. Then they went inside and vacuumed the liquid/mucous out. I am so scared that there is something wrong because there is this bulge. Yet, I don’t know like I said if there is something to worry about because I see like my intestines bulging out or it is just because I am just extremely thin that you can see everything that they did still and the intestines are still dilated. After all, I only weigh in the 60s and therefore, you can imagine how small my abdominal cavity is… so who knows if there isn’t something to worry about. I called the doctor and I am awaiting a call back. I am just crossing my fingers that there is nothing to worry about.

The doctor did say that there was lots of mucous and liquid when he went inside. They did do a bit of vacuuming/suctioning, but of course it is only temporary. That is why I have to undergo it weekly. There is only so much that they can do because it is so much and so thick that it even keeps clogging up their machines.

I just hope that everything is OK and that I don’t end back up in the hospital because like I said before… I am hopefully leaving on Tuesday for California. It is going to be a long trip there, and I am really fearful about the traveling because traveling is definitely not easy on me whatsoever. It really severely weakens me and exacerbates my condition, and I really can’t afford it at all because I am already doing so badly. Yet, I am hoping it might not be so bad because even though we do have a stopover… at least we don’t have to worry about changing planes. But it still is a huge trip across the country. We are leaving about 6 AM and we won’t get to LA until about 1 in the afternoon (California time). So essentially I will be traveling close to 9 hours. I am just hoping that I get to see some Hollywood stars or something. This is the first time I am every going to Los Angeles and I have all these expectations of Los Angeles. I have always wanted to go there and I wonder if it is just like it shows in the movies. In such a place like Hollywood where there are so many stars, I am hoping to run into at least someone. That would really make my day if I met someone famous.

In the meantime, I just gotta hang in there until Tuesday and hope and pray that I get the funds available to go to California. It is basically almost here so I am crossing my fingers that I will receive some donations in the next few days so that I will be able to put it towards my trip.

I have also been trying to do some reading. I have just started a new book from one of my favorite authors. The book I am reading is called NYPD RED 2, and it is written by James Patterson. I have tried to read almost every single book of his, but it hasn’t always been successful. I guess when you have written as many books as him, it is hard to have all books to be interesting and bestsellers. But it is amazing how many books that he has written and he just keeps on going. It is like every month he comes out with another new book. He is just a writing machine!

1614121_10101110500759560_1428136961348406310_oMother’s Day is also approaching, as it is tomorrow. Mother’s Day is usually associated with gifts, flowers, and breakfast in bed, but unfortunately, I can’t give this to my mom. I feel so bad because Mother’s Day should be a day of rest and pampering! It should be a day where my mom will be showered with flowers, jewelry, sweet cards, and breakfast in bed. Yet, instead of being able to do all this for my mom, it continues to be just any “ordinary day,” as I can’t give her all that she deserves or take her to places or restaurants or even buy her gifts like other daughters can. It is just the “Same Old Crap Day” in our house unfortunately. So I hope that you don’t mind if I take this time and opportunity to talk a little about my mom and tell how wonderful my mom really truly is because I not only have her to thank for giving me life, but her love and kindness have truly made each day very special to me. To me… Mother stands for: Magnificent, Optimistic, Trust-worthy, Heroine, Entertaining, Romantic. When I think of my mom, I can only think of one word… “Angel!”

I can’t thank my mom for all that she has done for me, and I only wish that I could make her day “special” for her by taking her out to dinner or by buying her something special. But due to lack of funds and the inability for me to go out (especially for me to go out to eat), it really is an impossible feat. I feel so horrible that I can’t take my mom out to dinner and treat her to a nice dinner at a beautiful restaurant like other mothers, but not only do I not have the money to do so, but I cannot eat there either. I feel so bad because she has given up her life for me and she shouldn’t have. We haven’t been on a family vacation in about 10 years, we don’t go out to eat, we don’t go out and participate in any “social” activities, she never gets to buy new clothes or anything else nice for herself, etc. My mom has literally spent the last years cooped up in the house taking care of me. Even when my dad and I travel to appointments, my mom is the one who is left behind to take care of the business, house, and all the other stuff that needs to be done. She is really one terrific mom and I can’t thank her enough for all that she has done for me throughout the years.

My mom has played such a crucial role in why I have made it so long. She has always been there for me, and that is why I love her so much. Mothers are like angels on Earth, as my mom has always been there to cheer me up when I am sad, make me happier than I ever could be, take care of me when I am sick, and be there to always support me. My mother’s love is unconditional, unbreakable, and unforgettable. She is always there to make me feel “loved” and to make me smile… whether it is by receiving cards, letters, balloons, flowers, stuffed animals, or just by simply talking to me. My mom always sacrificed a lot for me and always put my happiness ahead of her own.  My mom has stuck behind me and was with me in good times and in bad… never leaving my side. Even though I always surrounded by an immense amount of pain and the struggle to survive, I am so thankful to also be surrounded by my loving mom.

My mom is one terrific person, and her presence is so precious to me. Her bravery is and courage does not go unnoticed, as she never shows her fear, despite being filled with it. She constantly shows great strength even though her body is purely exhausted. She is always there to meet my daily needs with caring hands, and she is always telling me I am a “little trooper,” and that my will to live was stronger than my illness. My mom understands me when no one else does.

In 1914, U.S. President Woodrow Wilson officially recognized Mother’s day as a national holiday. One hundred years later, the holiday has become a global celebration to honor the mothers who made sacrifices to raise generations of children and support them through adulthood. This day should exist more often so that we stop to celebrate the most beloved, the most trusted, and the most sought after women in the whole world. I just want my mom to know that I love her so much and I would not be here today if it wasn’t for her. As the Jewish proverb goes, “God could not be everywhere and therefore he made mothers.” I would never want any other mom in the world. Most of all the other beautiful things in life come by twos and threes by dozens and hundreds. Plenty of roses, stars, sunsets, rainbows, brothers, and sisters, aunts and cousins, but there is only one mother in the whole world. Throughout the years, my mom has always been by my side. I couldn’t have had a better mother to look up to. I only hope to get better so that one day I can become a mom just like my min as she has set the best example for me to follow and look up to

Well… I am going to get going. I had a very trying day and I am not feeling well. I just wanted to update you and let you know all that has occurred. I am planning on writing again prior to leaving to California, but if I am unable to do so, I will write as soon as I know anything.

I also want to add that I am $90 away from hitting $25,000.00 from when I first started my fundraiser at www.gofundme.com/fallonmirsky.  I really hope that I will be able to hit that number!  Unfortunately though even though it is great that I raised that amount of money, it has taken since the day before Christmas in 2011, to raise this amount and as a result, the medical expenses that have occurred have far outweighed that amount.  It would have been great if I made that amount in a ‘short’ time like the time I have been asking just for Mexico.  However, even though it does state that I raised $25,000.00, unfortunately it was from before I had the trip to Mexico and some of the funds had to go towards medical expenses to pay for past surgeries, medications, etc. that existed prior to Mexico.  If only I could raise this money in a shorter amount of time, it would really be great.  Don’t get me wrong, I am really thankful that I raised that large amount, but it really isn’t that great of an amount when you take into consideration how expensive my medical illness costs me and how much I paid during the 2 years that I raised it.  If only I can raise this amount in a shorter time.

I am hoping and praying that through the help of others that I will be able to get well and be able to get the necessary treatment to save my life.  However, in order for that to happen I of course need plenty of donations.  Even $1 is one less dollar that I have to come up with and is very appreciative.  So if you can please help spread the word, I would really appreciate it.  Hopefully I can raise another $25,000.00 really soon and it won’t take me another 2 years to do so because I will never make it.  I really want to be around to celebrate the next Mother’s Day with my mom!

Thanks again for all your support and encouragement. I can’t thank you enough for it because it has been getting more and more difficult to push onward. Yet, it is through your support that I am able to conquer each hurdle and keep moving forward.

Best,

Fallon

 

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May 9, 2014

1614197_10101132445357410_7155549106939053448_oHi!

I just wanted to write a brief update on all that is occurring because I will be leaving in a few hours for the hospital. I will be undergoing another surgery in a few hours. Aren’t I the lucky one? Hopefully it will be successful.

Well, like I just said… I am off to the hospital in a few hours for another surgery. It appears that this is going to be my new routine now until something is done. The surgery that I am having is that they are going to go into my intestines and colon and try to vacuum as much liquid out as possible. As I stated in a previous update, my colon has totally stopped functioning and as a result, I need to have it removed. It is extremely urgent that it happens because the doctors are worried that the colon is going to perforate or rupture and that I am even going to into sepsis. The colon is so “dead” that nothing is even making it into the sigmoid colon and the rectum is not working as well. Everything in my GI tract is a very thick liquid and it is just remaining in there with no place to go. I am constantly leaking “mucous” that looks like chicken fat and smells like rotten eggs because I am literally “rotting” inside because anything that is inside me such as the meds that I am taking or the food that I am taking in and not throwing up are not moving through. Therefore, the doctors are so afraid that I am going to go into Sepsis and die.

I really need my colon out ASAP. However, the problem is that there is really no hospital in the area that is equipped to handle my overall condition and do this highly risky surgery. So I need to go someplace else to have it done such as California or something. We are scheduled to leave on Tuesday for California, but it is all contingent on the funds available. Unfortunately our hands are tied and my health really lies in the hands of the rest of the world because we no longer can afford my medical expenses. We have paid for them for so long that the “well” has to dry up sooner or later. You know? So since my disease is so expensive especially since treatments aren’t always covered by insurance, we have exhausted all of our funds and can no longer pay for the much-needed treatments that I need. We sold whatever we could, made cuts wherever we could, but we still cannot afford the much-needed treatments that I require to save my life.

I really need to get to Mexico ASAP. That is the best place for me to be. It would be the answer to everything because it would get to the root of all problems since all of my problems stem from the neurological disease and autonomic dysfunction. When I go to Mexico, I will be the 38th patient to be placed into a rare and radical ketamine coma that is saved for patients who are the worst cases in the world and are unresponsive to other modes of treatment.

During this procedure in Mexico, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.

However, even though it is a miraculous treatment, it is quite expensive and we cannot afford it at the current moment. It will cost us at least $100,000 and despite all the fundraising that I have done, I am still very short on the funds. But I desperately need to get there because I am running out of time and without this treatment, I will die. Doctors have already stated that I am a ticking time bomb that is going to detonate really soon. In fact, I have gotten so bad lately that we think that time has even come. I have no other choice but to go to Mexico to receive this treatment because since 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. We are scheduled for this coma to take place in July, but we honestly don’t know if I will make it that long because I am really getting bad. It has gotten to the point that we take each day as it comes and even making it through a day or night is not a guarantee anymore. Yet, I continue to push on hoping that I will be able to have those funds so that I can get the Coma in July and get better.

In the meantime though, we really need to buy time. I am drastically declining and unless something is done, I am definitely not going to make it to Mexico. My entire GI tract has shut down and as a result, I am suffering from severe Gastroparesis. I ideally need a multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, liver, and pancreas, but it is a very risky and dangerous transplant. Only 6 hospitals in the country perform this transplant and it is the most dangerous transplant you can have. The doctors have said that it is has gotten to the point that I desperately need this transplant, but I am also so sick that they don’t even know if I will be able to survive it.

Therefore, the doctors are trying to work with what they have and what they are dealing with and as a result, I need to have my colon removed. Yet, in order for this to happen, I need to have it in a place that is situated to deal with my overall condition because it will easily exacerbate my underlying neurological condition and autonomic dysfunction. Any bit of trauma makes my disease worse. I am also in no state to be operated on because I am very high risk, as I only weigh in the 60s and have a BMI less than 10.8. With all my complications and organs shutting down, it is a real risk to undergo a huge surgery like taking out the colon and therefore I need to be in a hospital that is best equipped to handle my overall condition and me. I at least need to be in a hospital that will be able to give me ketamine around the clock because ketamine is the only drug that will hopefully stop the disease from spreading because we all know that when I have the surgery that the disease will spread because of the traumatic experience that will be occurring.

So we are off to California on Tuesday to Cedar-Sinai hospital in Los Angeles. This will be the first time that I will ever be in LA. I am really excited to go because I am hoping that they will be able to help me. I also am hoping to be able to see some real movie stars. I have this vision in my head of what Hollywood is like and I can’t wait to actually get to experience it. I only wish I was well enough to actually enjoy my trip and do some sightseeing.

If I was well and this was a “vacation” instead of a trip to the hospital, I would probably have the time of my life by going to LA. I can’t wait to see everything that LA has such as Rodeo Drive, the sign that states HOLLYWOOD on the mountain, Disneyland, Santa Monica, all the movie stars, seeing the Stars on the sidewalk, etc. California, especially LA, seems like the coolest place. The hotel said to me that since I can’t really get around to do anything that they will give me a room overlooking the Hollywood mountain that has the sign that says HOLLYWOOD. So I am really excited. I told my dad that when I get better… We are definitely going to Disneyland before we go home because that is one dream that I have.

So we are all set to leave on Tuesday, May 13th, for California. I just hope that we get enough funds to go because I desperately need this trip. Like I said before, I am drastically declining and definitely need something to be done to ‘buy’ time until we can get to Mexico. I really need to have my colon removed especially before something else happens because it is already over dilated and filling up my pelvis.

Since my colon has gotten so bad, I am now going to be forced to undergo surgery every week now until I have the colon removed or a better option becomes available. That is why I am going to the hospital in a few hours to have the operation. They are going to be vacuuming out the mucous and liquid that is in me because otherwise they are scared it is going to perforate and rupture. They are scared that I am going to go into Sepsis, and that will be the end to it.

However, this surgery isn’t easy on me at all. What stinks too is that it isn’t permanent. They can only vacuum so much out because the mucous and liquid that is in me is so much and way too thick. In fact, the doctor told me that it keeps clogging up his tubes and they have to keep unclogging it. In addition, even though they do vacuum it out, it only comes back and that is why I have to keep undergoing the surgery over and over again.

Thank goodness I have the best dad in the world because he has been taking me everywhere. I can’t thank him enough for all that he is doing. I am so scared though that something is going to happen to him because he is no youngster and he is so overworked. He only gets about 4 hours sleep a night and he is so tired. It isn’t even where his job is a ‘desk job!’ He is constantly on his feet, as he is exerting himself constantly. He basically puts in full days worth of work, he takes care of me at home, he takes me to all my appointments, he takes me to all my treatments, etc. I just don’t know how he does it. I just wish I could make it better for him because he definitely doesn’t deserve this life.

I know that it hurts him so much to see me like this. There is nothing that he wouldn’t do to help me. That is why he is working so hard. He is trying so hard to help me and to get me the medical treatment that I need, but despite all his trying… it just isn’t working. He keeps telling me “I am not going to let you die,” but I keep telling him “it is not in your hands.” I know that if he could… he would get me the medical treatment that I desperately need. I know it hurts him tremendously to know that I need this treatment and especially to go to Mexico where I can essentially be cured, but I get it because we can’t afford it. He works harder than ever to try to be able to afford my medical expenses, but it is like a “no win” situation. Between my very expensive medical illness and the bills of the house, it is just snowballing out of control. I never thought it would have gotten so bad. We can barely pay the mortgage, utilities, etc. You can’t imagine how even putting food on the table has become a huge task as well. We haven’t even celebrated birthdays or the holidays including Thanksgiving or Chanukah or anything because we have no money to do so. It really is a shame how bad things have gotten.

Everything is dependent on the funds that we raise. It stinks that my life basically rests in the hands of the world because we cannot afford it ourselves. We can’t afford to go to the doctor appointments, treatments, medications, etc. There are so many times that I don’t even know until last minute if I will have enough money to go to an appointment to see a doctor. Even the medication or treatments that can help to “alleviate” the pain even a bit like the wonderful ketamine that I take at home has to be curtailed because we cannot afford it. So all that is left is to suffer.

I can’t thank you enough for trying to help because it is so much needed. My health has taken the biggest downturn and is failing in the biggest way. I just wish I could close my eyes and sleep forever because I am suffering so much. I wish the tightrope would just break already instead of leaving me out there to straggle and suffer because I just can’t take it anymore. The “suffering” is the worst part. I can’t take it physically, medically, emotionally, psychologically, etc. anymore. Sometimes I just wanna die already because the suffering is too much to bear.

Dad and I know deep down that I am never going to probably get well or get to Mexico because the amount of money that we need for that to happen probably isn’t going to be attained and we cannot afford it ourselves, yet we keep hoping and praying while we sit and watch me deteriorate.  That is why I not only plead and beg for donations. Not only do I not only want to get well so that I can regain my life and become the doctor that I have the desire to be or to be able to be “normal” again, but I want it also for my dad.

Sometimes I think how “easy” it would be to get the needed treatment considering how many people exist in the world. I mean there’s so many people and if they would just donate even $1 (which we all know would clearly not kill them… It’s a matter of not spending 100 Pennies or not buying a pack of gum or a cup of coffee or something) then I would easily have the money to b able to go. As of March 26, 2014, it is estimated to number 7.161 billion by the United States Census Bureau and therefore, getting 100,000 people to donate that little $1 should be no big deal. You know? Sometimes I really wonder where the problem actually lays or what is wrong with society that people can’t help others?

If something should happen to me, I don’t think my dad would ever survive it. I wanna have him see me become a doctor, I want him to walk me down the aisle, I want him to have his life back, I want us to have “fun” again, I want to be able for us to be a “normal” family again so that he can enjoy his retirement (if he can ever do that because with the debts that we occurred… I doubt that will ever occur). My dad is such a special person and certainly doesn’t deserve this.

1956814_10101132444184760_5849905728521388588_oIn the meantime, I have really been lucky to receive two special gifts. One gift that I received a shirt that was signed from all the hosts of AMERICA GOT TALENT. I am an avid fan of that show and a very dear friend got me an autographed shirt. I couldn’t believe my eyes that she actually got me a shirt from them!! It really made my day!!

Then in the same day I also received a great gift from another friend. She organized a collection of rainbow loom bracelets and charms because I am collecting them. I am decorating my room and hospital room with them so that it doesn’t look so dreary. It also makes the IV poles and machines that are so ugly and scary looking look a little more “fun”. I am also hoping that if I collect 1000 of them that a miracle will happen. I thought of this after reading “Sadako and the Thousand Paper Cranes.” In this book, after being diagnosed with leukemia from the radiation, Sadako spent her time in a nursing home folding origami paper cranes in hope of making a thousand of them. She was inspired to do so by the Japanese legend that one who created a 1000 origami cranes would be cured by the gods. 10014405_10101132443595940_7040939011484196128_oHer wish was simply to live. However, she managed to fold only 644 cranes before she became too weak to fold any more, and died on 25 October 1955 in the morning. Her friends and family helped finish her dream by folding the rest of the cranes, which were buried with Sadako. So not only did I receive the loom bracelets, but I honestly was surprised to receive paper cranes as well. So I am off on my journey to make 1000! Thanks for all the contributions.

Well… gonna get going. Gonna go rest for the next hour or so before we leave for the hospital. Talk to you soon. Remember… donations are much needed. Every $1 is one less than I need to come up with and really does help!

Thanks again for everything.

Best,

Fallon

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May 2, 2014

737125_734391376591211_5168618130208749911_oHi!

Just wanted to write tonight before the big day tomorrow. Going into the hospital tomorrow for surgery, so I wanted to get in one last post beforehand.

Although we are learning more and more, there are still too many unanswered questions. So many people and even myself constantly wonder what exactly is wrong with me. I suffer from rare and life threatening illnesses known as Reflex Sympathetic Dystrophy, severe autonomic dysfunction, severe gastroparesis, osteonecrosis, and a pituitary brain tumor. Doctors have also diagnosed me with mitochondrial disease, otherwise referred to as simply “mito”. Mitochondria are responsible for producing most cellular energy, and when they do not function properly, Mito develops.

I continue to push onward. Many people wonder how I ended up the way I did. I mean it is quite rare that you meet someone afflicted with all these diseases? Who would think that someone could be struck with so much? I guess I just had the luck of the draw.  However, although we are learning more and more, there are still too many unanswered questions. But right now the predominant hypothesis as to why and how I possibly acquired this, um, impressive collection of rare diseases is this: 
Most likely I have had some genetic abnormalities my entire life. As a child my mild stomach troubles, hypermobility, and abnormal healing may have been early evidence of this. When I was 19 years old, perhaps the stressors of the surgery that I had triggered an over-exaggerated immune response and things got crazy, setting off my mito, RSD, digestive tract paralysis, and all of the symptoms that go along with them. But we continue search for a way to save my life.

I have had very harsh treatments to give me any chance of survival, and I seriously need your help in order to continue to be able to live. I desperately need to get to Mexico to undergo that radical Ketamine Coma, but it will cost me $100,000. I am scheduled to go in July, and I am only hoping that I will have the funds available and I will be able to hold out until then.

I have really been deteriorating and worsening lately and unless something is done now, I will not make it much longer. Doctors weren’t kidding when they said I was a “time bomb waiting to detonate” because I think the time has finally come that I am going to detonate. As a result, we are hopefully going to be heading to California on May 13th to see doctors at Cedars-Sinai Hospital because I desperately need help ASAP. However, even though this trip is so important and quickly approaching, it is also contingent on the fact that we have the funds available in order for us to go. I am only hoping that we receive enough donations so that we will be able to afford to go because the medical expenses that we have now have really snowballed out-of-control and as a result, we can no longer pay for any of my medical expenses (whether it be appointments, medications, surgeries, etc.) without help. We have exhausted all our funds because my disease is so extremely expensive and we have paid for so many years. There just isn’t anything left. So essentially… my life rests in the hands of the rest of the world. So I am only hoping and praying that I will be able to continue to go to California on May 13th as planned.

It is really imperative that we go to California because I definitely need something to be done as soon as possible. Not only do I need something to be done for my neurological disease, but also my GI tract has completely shut down and I really need a multivisceral transplant, which incorporates getting a new stomach, liver, pancreas, small and large intestine. However, this is a mega and dangerous transplant, as it is the most dangerous transplant you can have and we are trying to avoid this. The best option would be to hopefully go to Mexico and have the Coma because it has the potential to help this area as well, but since we don’t have the funds available ($100,000) as of now, we have no other choice but to make other arrangements and take care of the GI issues separately.

Since the transplant is very risky and I am very sick, the doctors are trying to avoid the transplant and “buy” time. They need to get me stronger to get the transplant because they don’t know even if I will be able to even survive the transplant. Therefore, I desperately need to have my colon removed and have a NJ tube placed in me. However, the priority is to have my colon removed first, as nothing is going to work unless that happens first. My intestines are completely dead, and as a result, it is causing blockages and the intestines to dilate. It is putting so much pressure on my organs that they are also shutting down. The doctors are worried that my colon is going to perforate and rupture. They are also worried about me going into Sepsis because whatever is in my intestines is just remaining in my intestines with no place to go.

As such, the doctors really want me in the hospital as soon as possible to have my colon removed. They also want me to be in the hospital to have a tube placed in me because this way they will be able to “suction” and “vacuum” everything out. However, this is only a temporary fix because once the tube is removed, I will only be back to square one. So essentially I would have to remain in the hospital because the only way I can have the tube is in the hospital and that is no place for someone to spend their days. I don’t want to spend whatever time I have left in a hospital with a tube coming out of me just because there are no other options and I just need to have this tube to vacuum everything out of me. To make matters worse, there really is no hospital equipped to handle my overall condition. Although there are hospitals in the area that can remove colons, I also have all those other conditions that make it extremely risky to operate. I am extremely high-risk and therefore, I need special attention. Not many hospitals and doctors are equipped to handle my situation because they are not knowledgeable in dealing with my diseases, as I cannot be treated like a “normal” patient. I am very hypersensitive, need potent medications, need ketamine around the clock, need doctors to think ‘around the box because I don’t follow the typical plan’, and lots of things that you don’t expect to happen always happen. I only weigh in the 60s and have a BMI of 10.8 or less and therefore, operating on me is extremely crucial as I am very fragile. That is why it is imperative that we travel across country to places like California because only certain institutions are capable of dealing with conditions like me. So hopefully I will be able to go to California on May 13th because my life is depending on it even though it is going to be one exhausting trip because I have to literally travel across the country. It is a shame that I have to travel all the way across the country to get treatment, but I have no other choice. There is no other way.

In the meantime though, I am going into the hospital tomorrow for surgery. That is why I really wanted to write tonight. I wanted to alert you that I am going into the hospital for surgery just in case something should happen. I never count my chickens before they hatch, so I always like to be ‘prepared’ just in case something should take place. I am having surgery to try to further ‘explore’ what is happening and to help further help to buy me some time until I can at least get to California because even May 13th is too long to wait.

The surgery tomorrow is really not that major to a normal person, but to me… it is really major because anything that I undergo is magnified. A simple needlestick, for example, is like someone sticking a huge knife in me. During this surgery they are going to be doing some exploration to see if they can further diagnose and see what is happening, as well as doing some biopsies to see if they can further get an understanding as to what is happening. In addition, they are going to try to vacuum/suction some of the blockage/stool out of the colon, but it definitely won’t be as successful as if I were to remain in the hospital with a tube coming out of e. In fact, the doctor doesn’t even know if the suctioning/vacuuming will even work because the mucous can be too thick and too high up to come down in the brief window that he will be able to put the tube in. Plus the tube that will be placed in will be different than the one that would have been placed in me if I was to be in the hospital for days and therefore, they don’t even know if this tube will be capable of doing anything. They are just hoping! But they also told me that it is only going to be a temporary fix because once they take out the tube… of course everything will be back to where we began. Yet, they are hoping that they can alleviate at least some of the pressure and they are hoping that they can decompress me even if it is for a bit.

So we are on our way in a few hours to the hospital. I will let you know how it all goes. In the meantime though, I went to the surgeon today for my osteonecrosis and that has been getting worse as well. Two more pieces of my bone from my jaw came out and it is killing me. When I went to the surgeon, I brought the two pieces of bone with me because they had fallen out this past week and therefore I put them in a cup for him. I knew that he would want to biopsy them!

Well… I just wanted to write and share all that is happening. I will share more when I know more. Wish me luck tomorrow. I also just wanted to remind you that there is a fundraiser going on that will be ending in a few days. A dear friend is trying to raise money for me and therefore, she is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online. Please add all of your Facebook friends onto this party AND please post about this on your wall with the link so people can make purchases. If you have friends or family outside of Facebook and they would like to make a purchase to help raise money for HOPE FOR FALLON email them this link with an explanation of the fundraiser.

http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467 The more purchases…. the more money we can raise!!!! The deadline to this fundraiser is May 5th, so please get your orders in!! There are only a few more days left of this fundraiser!!! Please help and support me!! Every order counts… Please get your orders in ASAP!

Thanks again for all your help and encouragement. I would never be able to make it through this without the support of others. Please continue to pray for me. Please continue to spread the word that donations are desperately needed because every donation counts especially when time is of the essence.

I just want my life back. I don’t want to die. But like I said previously, it all depends on the funds and therefore my life is kinda resting in the hands of you and the people in the world. I just hope people find it in their heart to donate because essentially all I need is 100,000 people to just even donate $1 and I will be set because the Ketamine coma in Mexico that I desperately need costs $100,000. I don’t even think that is an impossible feat because for 100,000 people in the world to donate, it is really not a lot because the world is so overly populated. In fact, all I am asking is for 100,000 people in a world that is so overly populated. As of March 26, 2014, it is estimated that the world population was 7.159 billion by the United States Census Bureau. All it takes is $1 from each or 100 pennies.

Please continue to pray and send those positive vibes!

Best,

Fallon

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