I am writing tonight because I am hoping that this time next week… I will be hopefully all packed and getting ready to leave for the Cleveland Clinic with my dad. I need to go so desperately because I am rapidly deteriorating and yet, we still don’t know if this trip is going to be possible because we don’t have the magical ingredient to make this all-possible… money. It is amazing how this stupid five-letter word rules the world and makes the ‘impossible’ happen. As P.T. Barnum once said, “Money is a terrible master but an excellent servant.”
Henry David Thoreau said it best when he said, “Wealth is the ability to fully experience life.” Gosh… when you don’t have money, it surely puts limits on everything no matter how hard you might want something, dream of achieving it, and try getting. The bottom line is that without “money,” nothing in life is possible. That is why I am so desperately for the help of others. I desperately need donations because without the help of their donations, I won’t be able to receive the much-needed life-saving treatment that I need to save my life. I am really deteriorating and need desperate help. However, it is so unfortunate that my medical treatment is too expensive and my family can’t afford it on our own.
So I am hoping and praying that we get the money somehow to send me to the Cleveland Clinic. We are scheduled to leave this time next week and hopefully we will be on that flight because my life depends on it. I desperately need to get there and then again on February 1st so that I can get the surgeries to save my life. I am only 32 years old and I am not ready to see the curtains close and for me to die yet. So I am keeping my fingers crossed, as I pray and hope that I will receive donations to allow me to go. If you would like to make a donation or if you can please spread my website link, please do so because the more people that are aware of my situation the better. The website of course is www.gofundme.com/help4Fallon.
I know this website might look a bit different than the previous website that was once was given, but the truth of the matter was that I changed the website because I figured it might do better if people realized the truth that we really don’t have any money whatsoever raised for my medical treatment. Yes we did raise some money on the last site, but it all went towards my medical treatment. We really wanted it to go towards a huge procedure like the ketamine coma in Mexico, but unfortunately it didn’t work out that way because the amount of money we received occurred over the course of 3 years. Through the course of three years, the amount of expenses that we had to put out far outweighed that amount and as a result, we could only use that money for the current medical treatment at that time to buy time. In other words, the money came in drips and drabs and as a result, we never had enough money at one time to do something that would cost a lot of money. Therefore, we were only able to put little Band-Aids on problems in hopes that it would help, but unfortunately, you can’t prevent the inevitable. If I am going to really honestly get better, we really need to take drastic measures and get to the root of the matter. But in doing so, we need the finances and they can’t come in drips and drabs over the course of 3 years. You know?
So I am hoping that this website will be the start of a successful fundraising campaign that will end up saving my life in the end. Please remember this new website and please spread word of it because I need this treatment to save my life. Please remember that the only place SUCCESS becomes before WORD is in the dictionary, so it is going to take some work in order for this to be accomplished. So please help me.
I am still pack and planning on going to Cleveland Clinic, as my father and I are hoping to make it to the Cleveland clinic on Tuesday but it’s still very dependent on funds but honestly… It’s getting to be a matter of life and death at this point (like you don’t already know that). But unfortunately I wasn’t born with a silver spoon in my mouth and since it is very expensive… I’m kinda out of luck and just hoping and praying that the much needed funds come in. We are making the preparations though that we are going because we are hoping that it will be a ‘go’ and all will go well with the trip but in reality… Who knows until the very last minute?
Even though we will only be going this time for about a week, we still need plenty of funds because we need to pay for traveling expenses, hotel, doctor appointments, copayments, living expenses, and testing copayments. Everything that I have done at the Cleveland Clinic, whether it is a test (i.e. blood test or an x-ray) or even seeing a doctor will encompass paying at the very least a high copayment, which will clearly add up. The plan when we I go down this time to Cleveland Clinic was to meet with all the top specialists and to finalize everything, go for final testing, etc. so that we can return on February 1st for at least 7 weeks so I can have multiple surgeries to save my life.
But unfortunately, I have really been deteriorating and getting worse and it is at the point that my father and I are honestly scared that once we get there this time that they are going to end up keeping me there. We know that I am getting a lot worse and even though February 1st is not that far away, we don’t know if they are going to let me home or keep me to do “emergency” surgery. Not only have I been suffering in pain more than usual, but know that something happened inside to my colon because of what the doctors here are seeing and from the symptoms I am experiencing. The doctors want me to go for an x-ray to find out definitely what has occurred as they think I have a huge blockage or a twist, but I refuse to go. We already know that I have intussusceptions and blockages in my colon but thankfully in a way my colon has been so “dead” and dilated that I have been able to live with them whereas a normal person would need emergency surgery. So, I refuse to go and get the x-rays to know definitely what it is until we get to the Cleveland Clinic because I don’t need to know ahead of time bad news. We know there is something definitely wrong. Knowing exactly what it is will not change anything except state that there is something else going on that needs “emergency surgery” and if I can’t afford it, I don’t want to know that I have something added to my list of other problems that need help desperately but I can’t get the necessary life-saving treatment because we can’t afford it. So I will just wait until we get to the Cleveland Clinic because I know that whatever is happening is going to need surgery and the only place that is going to be able to occur is at the Cleveland Clinic.
In the mealtime, I went to the ENT doc today and didn’t get good news. To begin with… The doctor didn’t like the way I looked. Then again what doctor does? He said that he could see that I was extremely ‘malnourished’ (like we didn’t know that already) because he could see al the muscle wasting in my face as well as everywhere else. But he said that when you see the muscle wasting in the face like I have… It means it is really bad. I honestly don’t see a good part to it, as I think any malnourishment and muscle wasting is bad. But he said that I need urgent attention and that I need help desperately. He was honestly shocked that I was still even walking around. But then again so are most other doctors.
They don’t know how I am surviving, but somehow I am. I guess I am invincible. Lol. But this person is running out of time and I can honestly feel a huge difference from how I was before and how I am now. The doctors keep saying how I am a ‘time bomb waiting to go off’ but with what is occurring lately and how I’ve been feeling… I think I’ve been detonated. I need help and help now because I’m not going to make it much longer. I keep telling doctors that I am the “Energizer bunny rabbit” and that I just “keep going and going and going” but the truth is that my batteries are being depleted. I really honestly don’t know how much longer that I can hang on. I am so tired from the physical and emotional pain. I just can’t take it anymore.
Anyway, of course I had wax in my ears (like I didn’t know that already). But the amount of discomfort was of course much worse than the amount of wax that was in my ears, but you know that’s to be expected because of my illness and how I am so hypersensitive of everything. The slightest thing is such a MAJOR thing for me. It stinks.
Not only did I have wax, but the doctor has difficulty getting it out too. It turns out that since my body is so deteriorated and so ‘dried out’, the wax was really stuck in the ear canal and it wouldn’t loosen up. So you can just imagine how much pain I was in when he was trying to use his tools to grab the wax and basically tear it off the canal because it refused to come off. I was definitely not a happy camper.
The doctor told me that since I am so dry in my ears that he wants me to put mineral oil in them. Have you ever heard of such a thing? I am a little skeptic of putting anything in my ears, but he says it is necessary to keep them very well lubricated because they were extremely dry and that’s why I was so uncomfortable and why the wax was getting stuck and not coming out easily either.
To make matters worse he looked at my nose because I was complaining about no feeling in the left nostril and difficulty breathing in that nostril as well. I thought perhaps there was a pimple or something in the nostril that was causing some irritation or something but the doctor said that he couldn’t see anything. All he said he saw was be same problem that was in the ears, which was that it was extremely dry and crusty. So he said that I needed to lubricate that as well. So he gave me Aquaphor to put in my nose, which I was really surprised because I always brought of it being a body moisturizer or hand lotion. I never thought it was possible to use it in your nostrils. But whatever works, right?
The doctor did notice though that I drooled a lot. It’s something that I have been extremely self-conscious about and didn’t know why that was occurring. He said that the reason that this was occurring was because of the ketamine. He said that besides the autonomic dysfunction, ketamine is notorious for causing excessive salvation. So at least I know why I am drooling so much. After all… I get so much ketamine in me that there’s no wonder I drool. I have the weekly infusions/comas of ketamine and then I have the ketamine that I take at home in the nasal spray.
I even asked the doctor, “if my mouth is so moist and I am drooling because of the ketamine, why am I so thirsty? In addition, if I am given bags of IV 2 days a week because I am given it when I go for the day when I have the ketamine infusion/coma and then when I go for the intestinal cleaning, why am I so thirsty?” he told me that it was because I am basically all dried up. He said that even though my salivary glands are producing the drooling because of the ketamine, I just can’t quench my thirst because I am extremely dehydrated and all my organs are suffering.
I also told him about the fact that I can’t clear my secretions anymore especially the more that I drink. I am literally drowning in my own fluids. The doctor told me that drinking is the hardest thing for my body to process. He said that in order for me to drink I can ONLY have thick fluids such as slushies and such. But even with that… it just continues to get worse. I a m just too tired of suffering already.
The doctor was also very scared for the upcoming surgeries at the Cleveland Clinic. He knows how very taxing it will be on my body and how my body is not even up to “surgical condition.” These surgeries that I will be having are one of the most dangerous, radical, and intense surgeries that a person can have especially since they don’t deal with just connecting nerves. These surgeries entail connecting so many vessels within the body and it also encompasses dealing with an area where bacteria flourishes. These surgeries are so complicated that they only do surgeries like the multivisceral transplant in like 6 hospitals throughout the United States.
Well in the morning later today I have the cardiologist. I need to have my heart checked out because it isn’t doing too well also. I am seeing a top-notch heart doctor when I go to the Cleveland Clinic next week. However, I still need a cardiologist in the area in case I am in New York and something happens. I already have severe heart issues that already run in my family such as heart disease and everyone in my dad’s family having sever heart attacks (except him thankfully). I already have coronary calcifications that have to be removed from the coronary artery and severe bradycardia. In fact, my heart rate gets so low that I am always setting off the machines when I go for procedures and everything. Even when I am hospitalized, they have me sleeping with the paddles by my bedside because my heart rate drops so very low and they are so afraid. So we will see what this appointment has to bring. At least by going for this appointment I won’t be in for too many surprises when I see the cardiologist in Cleveland.
Then on Wednesday I have my surgery to clean out my intestines. However, this time is going to be a little different than the previous ones. First of all, I won’t be having my usual GI doctor doing it. I am having his partner do it instead because of the scheduling time. I am kinda happy about having a his partner because it is a new face and brain to go inside me and therefore, maybe he could see something or discover something that my current GI doc was missing… you know? But I am also nervous because since I am so fragile and anything can happen, he doesn’t really know my body and how it reacts to everything like my GI does. After all, I do have the autonomic dysfunction and the slightest thing sets it off. I am sure though that it will be ok and that my current GI doc has told him everything, but I am still nervous.
I am not only getting my intestines cleaned out so that I don’t hopefully rupture them or go into sepsis, but I am also having an endoscopy and having my esophagus looked at as well because my entire GI system is basically dead and I have been having issues especially with my esophagus lately too. Since my esophagus doesn’t move, pills do not usually dissolve in the stomach where they should be dissolving. Instead, they end up being dislodged in my esophagus and dissolving there, which is extremely painful. In fact, there are so many times that the doctors have to literally go inside me and actually push the pills down because they see that they are stuck in the esophagus and not moving. So, I really don’t know if it is because of this factor but I am having a really hard time swallowing because it burns going down. It literally feels like my esophagus is burnt to a crisp. So the doctors want to see what exactly is going on.
So there is never a dull moment. Thursday is New Years Day. I will be spending it as I always do. I will probably be in my bed watching the ball drop with my cat, Missy. It is just another year, but hopefully this will ne the upcoming year that I will get well and get my life back.
Speaking of Missy, she has been getting hilarious. Her new thing now is that when she wants to eat in the morning she will keep nudging my dad until he gets up. However, if he doesn’t move fast enough, guess what she ends up doing? She will end up biting his nose. I think it is so funny.
I also have scheduled another ketamine coma before I leave for Cleveland. Hopefully I will be able to go on Friday instead of when it is originally scheduled, which is Monday. I really hope I will be able to change it because not only am I suffering and need it ASAP, but it will be really hard to undergo ketamine and then get on a plane the following morning to go to Cleveland. After all, even though I love to go under ketamine and it really does help me, the after effects are not really al that pleasant and my body kind of “pays me back” too for messing around with it.
Plus… it takes a few days for my body to acclimate back to the way my body usually is after Ketamine. Even though I feel so much better under ketamine, when I come out of ketamine, I end up feeling a bit worse for a while because of the autonomic dysfunction and everything and it takes a while for my body to stabilize. However, I have an appointment in Cleveland with the top doc for my disease, as there are only very few doctors that are knowledgeable about my illness and he is one of them, and therefore, I want him to see the true disease and everything so that he knows how best to treat me. I know that there has been talk of having brain surgery so that they can put a machine in my brain, as well as other things, and that is why I think it is important to see how I am on a typical day with this illness and not when my body is fluctuating and trying to re-stabilize itself after having the ketamine. You know? Plus, it means also one more day for my dad to take off and it makes it even more difficult especially since it is exactly the day before we leave.
My dad keeps saying that he is only bringing a week’s worth of clothes. I told him that I am doing the same. If anything, he is going to learn how to do the wash. He laughs over this. To see my dad actually doing the wash… it would be funny actually.
So that appears to be all that is happening. I really don’t know how to pack or what to expect because even though I am only supposed to be going to Cleveland Clinic for the week, which is just to see some specialists, finalize some things, and do the final tests so that when I come back February 1st I will be able to undergo the surgeries that I need to save my life, I am so afraid that they will end up keeping me there now because of what is happening in my intestines. Part of me says that no matter what that they will save it until when I come back in February because they need to do the heart surgery first so that the central line can be put in and this way they will not only have central and emergency access into me, but they will also have a way of administering TPN into me under ketamine directly into my heart and making me stronger hopefully for the surgeries so I can better survive it. But then on the next breath I know something is seriously wrong because it feels like I am kicked on the side and I can’t get up from it and nothing is moving through… not even gas, so it is kinda an emergency. So…. Everything is just a plain mess! So I guess we will have to see what happens or if I get further information from Cleveland as we get closer because I plan on speaking with them as well and seeing what they say prior to going down.
So it has been a long week already and it will be a long and tiring week until we hopefully leave, which I am hoping and praying that we do. I desperately need to go because I am getting so bad. I can’t even manage to get out of bed anymore. I literally go to bed at 9 PM and can’t get out of bed until noon the next day. By the time I get up, it is time to take meds, eat, vomit, and the cycle starts all over again. This isn’t a life to have. I would do anything to have my life back. I can’t take the suffering anymore… both physically and emotionally. There is not a second that doesn’t go by that I don’t suffer except when I am under anesthesia or ketamine, which I wish I could live under permanently. I have to literally change my bed sheets every day because I keep spitting up blood all throughout the night and when I wake up my bedding is covered in blood, as well as drool. I
My dad keeps promising that he is “not going to let me die” and that he is going to get me to Cleveland. But he and I both know it is not in his hands. I know that if he could do anything that he would. I know that if he could take this illness away…even for a second… he would, but unfortunately he can’t. He wouldn’t be able to handle this illness anyway. After all, I don’t wish this on my worse enemy. It is the worst thing you can ever imagine. I hate seeing the pain in my father’s eyes because he wants so desperately to help me and yet… he knows that no matter how much he wants to and how hard he tries… he just can’t. He even works so hard to try to get me the money so I can get the needed lifesaving treatments and he can’t even do that. So I know it is really taking a toll on him. I am so afraid that something is going to happen to him with all this stress. If something would ever happen to my dad… I would never forgive myself. After all, he is my dad, my superman, and my best friend. I would be lost and never even be here today if it wasn’t for him.
I hate ruining my parents lives because they can’t do anything because of me and they have no money because of me. They are working harder than ever and have nothing to show for it because of me. The are in such financial debt because of me. They should be at a point in their lives where they should be enjoying themselves. Instead… they are suffering and working harder than ever because of me. I know it hurts them that they can’t go out and how they see other couples going out, other families going on vacation, going out for dinner, doing fun things, etc. and we cannot. I just wish that I could make it better for them.
Well, in the meantime that I am awaiting to go to Cleveland Clinic, I have been on a movie frenzy. I have been in so much pain and since I can’t really do anything out-of-bed, I have been watching plenty of movies. I have seen GONE GIRL (which was very good), ANNIE (which was pretty good but kinda childish), THE INTERVIEW (only wanted to see it because of the big deal over it, but it really stunk), JUMP STREET 22 (very good), and THIS IS WHERE I LEAVE YOU (absolutely loved). I am awaiting to see INTO THE WOODS. I can’t wait to see that movie. That was actually the first play I ever saw on Broadway.
I have also tried doing some reading. I am reading Sophie Kinsella’s new book called “SHOPAHOLIC TO THE STARS!” I love this author. She writes really great books. I just actually found out that one of her books, CONFESSIONS OF A SHOPAHOLIC was made into a movie. I am going to have to check that out.
I have also made my dad a FACEBOOK page finally. He has been joining the 21st century slowly but surely. It has taken him awhile and he has been fighting it tooth and nail, but each time he does something, he loves it so much and can’t stop using it. It took him forever to get an iPhone and now that he has one, he can’t keep off of it. It’s like he best thing to happen to happen I to him. So check out his new profile on Facebook (Perry Mirsky) and add him as a friend.
Well… I guess I wrote enough for tonight. Please honestly help me raise money so that I can get the lifesaving treatment I that I need so badly. Any help that you can give me, I would really appreciate. If you have any comments or questions on how you can help, please contact me at Femirsky@gmail.com. If you can, please spread the link of my fundraising site, which is www.gofundme.com/help4Falllon because I desperately need help and all donations are appreciative. Even the littlest donation makes a difference because that makes it less that we have to come up with and makes it closer for us to get to Cleveland. As Theodore Roosevelt once said, “Believe you can and you are halfway there!” I really believe that there are nice, generous and caring people in the world who would be willing to help me by giving me a thoughtful donation so that I can get the lifesaving treatment that I desperately need. It is so sad how Money alone sets all the world in motion!
We are also still selling bracelets that come in pink or blue for $5 each. They say “HELP FALLON FIGHT” and they are the ‘livestrong” bracelets that you usually see people wearing. If interested, please let me know at Femirsky@gmail.com.
Thanks again for all your encouragement and support.
Hope you had a great Holiday season. Happy a happy and healthy New Year if I don’t write again beforehand.