Just wanted to wish you a HAPPY SPRING even though the weather outside isn’t so springlike. I can’t wait for this weather to change because I certainly have had enough of this cold. This winter has been like no other winter that we have had, as it has been unbearably cold. However, I know that now that Spring has sprung, I am really going to have a hard time adjusting and a few hard weeks ahead of me.
As much as I love spring, I hate the change of weather because it wreaks havoc on my illness. My body doesn’t do well with “changes” and therefore, I will be in extreme pain even more (if there is such a thing) because of the change. My autonomic dysfunction will also worsen as well.
Speaking of my disease worsening, I can’t really take advantage of springtime weather like others do. Most people love springtime because they can have the windows open and enjoy the fresh air going through the house. However, I can’t have that in my house because of my illnesses and autonomic dysfunction. I am too hypersensitive and therefore, I need the perfect weather and perfect temperature of like 74 degrees with no wind whatsoever. The windows can’t be open because there is too much of a wind that will come through it and it will wreak havoc on me. In addition, just the texture and the humidity of the air will bother me as well. Therefore, at least when the heat or air conditioning is on it is on a set temperature and the heat or air-conditioning will turn on or off in order to maintain it. When the windows are open, there is no way to maintain the temperature. For me, I can’t have it too cold because I can’t put clothing on because anything that touches my skin gives me horrendous pain, and I can’t have it too warm because I can’t cool myself off or sweat.
My dad jokes around saying how I need to be in a “bubble.” He says it because not only do I need to be in it because it will be a way of protecting me so I don’t injure myself, as my disease spreads through trauma, but this way I can be in the perfect environment for me. I did tell my dad though that if I ever got better… he can be certain that I am building a “bubble” because I am not going to chance having this illness ever come back because there will always be a chance of it coming back if I ‘injure’ myself or have a traumatic event. No way can I go through this again!
Springtime is such a wonderful time. It is a time to be happy and cheerful, which is something I definitely need… especially lately. I wish I could stay in my dream world! I think about times when I am going to be married, be a doctor, be socializing and hanging out, etc. But then reality strikes back and I realize I am back in the real world of this horrible disease filled with unbearable pain and in a world where even the gentlest touch is painful.
I have been suffering so horribly lately and I just wish I was better and had my life back. I see others enjoying life and doing stuff…whether it is just going out to eat, going for a run, working, going to school, hanging out, texting each other on the phone, having friends, having fun, etc.… and I want that so much. It bothers me that I can’t do any of those things! To be quite frank with you… I don’t even know why I have phone because it isn’t like anyone calls me anyway? The only people who calls me is the doctors. All I can really do is spend countless days isolated in my house and in pain. I feel like I am cut off from the world because I can’t do anything.
Mexico is quickly approaching, as we are supposed to be leaving May 15th and I hate to say it but I don’t know if it is honestly going to happen. I need this Ketamine Coma more than anything in the world because I am rapidly deteriorating and yet, I don’t know if it is going to be a possibility because we really don’t have the money for it. I don’t know what is going to happen if I can’t undergo it at that time because I am not going to make it much longer. I am rapidly deteriorating and suffering immensely.
Yet, this Coma is going to cost me over $100,000 and I am no way close to having that amount. Plus, I need to put down a deposit in the next 2 weeks or so of about $40,000 and I don’t even have that. I really keep praying and hoping that we will find the funds somehow and that I will be able to go, but I know deep down that it isn’t going to happen. This is one dream and wish that is not going to happen despite all the “trying” I have done to raise the money.
My dad constantly keeps telling me to “Not to worry” and that we are “definitely going to make it to Mexico.” But to tell you the truth, I don’t know how on earth he is going to pull that off especially when we don’t have the money to do so. I know he wants me to get better more than anyone and would do anything at all to have that possible, but I don’t think it is in his powers to have it done.
To make matters worse, I am so scared because I don’t even know how we are going to be able to go for the Coma either because we literally are flat broke. We don’t have a single cent. Therefore, I don’t know how my dad is going to be able to go to Mexico with me and then work as well at the same time because without him working, there will be no income to be made. It isn’t like we have any “backup” money either to fall back on either. So I don’t know how we are going to survive with my dad not working and him being in Mexico with me. We already can’t afford to pay the mortgage, utility bills, phone bills, etc. We have a hard enough time putting just food on the table. Never before did I think that my life was going to turn out like this. I don’t even know how my dad’s company is going to exist without him being there to run it for the amount of time that he is going to be away. There is just nothing left to fall back on.
I just want to get better so bad. I hate what it has done to my family as well because they don’t even have money because of me. We are really suffering and they don’t need to be suffering at all because of me. You know? Meanwhile… we can’t go out, go on a vacation (haven’t been on family vacation in like almost 10 years), can’t buy anything, can’t even go out for a simple dinner, etc. My family had to literally give up everything because of me and are working harder than ever because of me. Everything that they once had is now lost and even if they wanted to “retire”… they can’t because they can’t since they lost everything. Everything is just maxed out and we are at the point where we never even know what the next day is to bring. We can’t afford our health insurance, mortgage, heating, electric, utilities, phone, etc., which are all necessities in order to live. I can’t believe what our lives have turned into. Never in my life did I think that my life was going to be like this.
To make matters worse… we now have to put a tire on the car, which will cost more money and we all know putting tires on cars are not cheap. Yet, we have no choice because without tires there is no way that the car can take us to my appointments or any other place I need to go. It just never ends. It seems like everything revolves around money. Everytime you try to save it… you need it for something else.
Things are really not good here. I am trying to keep up my spirits, but to be honest… it is really hard. I feel all “alone” in this battle and I am solo scared. I am suffering so much, and I never been so sick and in pain before. I hurt from the very surface down to the very core of my bones. My intestines constantly feel like they are leaking and I know that there is something wrong with them in the sense that there is a “twist” in them or a blockage because not only has it shown up on an X-ray, but I can feel it. It has really been getting worse because I spend the entire nights and days in pain with my intestines and I can literally feel my intestines “oozing” and “leaking” inside. It is freaky and annoying and painful.
Not only am I suffering physically in pain, but also emotionally I am not doing well either. I feel like an ogre. My skin literally sags on my bones because there is no muscle tone. It really bothers me especially because I love to take pictures, as it is a favorite hobby of mine, but I am now so fearful and hate taking them because of the way that I look. That is why I end up taking so many pictures of my pets. I love to take pictures, but I am so self-conscious about what I look like. I am so embarrassed and see myself looking like an “Ogre.” Therefore, I literally end up airbrushing every single one and touching each one up before I let them to be seen. But even with the airbrushing and touching… it still looks horrendous. I hate the way I look. I am so scared that even if I should get better… the ogre will remain.
Not only do I look like an “ogre,” but I had to even cut my hair because of this illness. I would do anything to have long hair. However, due to my illness and medications, it has wreaked havoc on my entire body from my bones to my muscles to my organs to my nerves to even my hair. It has literally taken over my entire body. In terms of my hair, I used to have such wonderful gorgeous blonde hair. However, the disease and medications have now caused my hair to thin and fall out. It has gotten to the point where my hair has become so thin that it had to be cut short in order to actually look soughta thick. I hate myself in short hair, but what other choice did I have?
I really belong in a forest because of the way that I look. It doesn’t really matter either because it doesn’t feel like I have a person in the world to lean on. I can’t even talk to my parents because of the stress they are under. I literally have nothing going for me, as I can’t work, have no friends, can’t go to school, have no money to get well, etc. I spend all my days basically cooped up in my house looking at the four walls because I am too sick to go out. All I have is my cat and dog as “friends!”
I have ketamine tomorrow (Friday), so I am excited for that. At least I will have one day of rest… well the hours when I am under. I only wish I can stay under ketamine forever. But just like everything else… all good things have to come to an end! But hopefully everything will go smoothly.
Well I have bloods in the morning. I wonder how bad they can be because they seem like they are never good. It is at the point that the lab literally calls my doctor’s office and tells them that my bloods are not just “low” but I am listed as “critical”!
So much needs to be done, but I am at the point where I have exhausted all my resources in the area. The only thing I can do is travel to other places because they are more equipped to handle my condition. I need to get to places that can better handle me like the Mayo Clinic in Minnesota, Stanford in California, and definitely Mexico. However, going to these places aren’t exactly “around the corner” and they aren’t cheap either. I am having a hard enough time paying for my medical expenses already; it is even harder when you have to pay for traveling expenses as well. Plus when my dad and I travel, it is time my dad can’t work and as a result, no money is being made.
Doctors are always saying that I am a “time bomb waiting to go off.” I know that I am worsening. I know that I definitely need something to be done sooner rather than later. That is why I need to get to Mexico. I have a meeting tonight or tomorrow with my doctor from Mexico to further discuss everything, but it is getting to the point where they need a deposit and unfortunately, I don’t have that money as of now.
I am really hoping to go to Mexico. But like I said before, I am still far from my goal. I know that you are extremely busy and I know that I am asking a lot, but I was wondering if there was any other ideas that you can think of that I can do to “fundraise”. I am so far away from my goal of raising enough money to go to Mexico and to be honest with you… it is basically around the corner that I leave for Mexico and I can’t afford not to go. I know that many people have helped out already and believe me… I can’t tell you how much I appreciate it, but I was wondering if you might have any other ideas about fundraising or if you were able to help me on any way possible. Anything that you can do would be greatly appreciated. If you have any suggestions, please email me at Femirsky@gmail.com. I can’t tell you how much all that you have done means to means and how thankful I am for all that you did. You are forever in my heart.
I also want to remind you that the “Help Fallon Fight” bracelets are continuing to be sold. They are $5 each and come in blue or pink. If interested, please email me at Femirsky@gmail.com or send me a message on Facebook.
In the meantime, I am still trying to keep my spirits up. I am busy reading James Patterson’s book called “First Love!” I am really hoping to be able to finish another book, which will be a great accomplishment for me.
But, reading isn’t going to get me to Mexico or get me well. I really need help from other in order for it to happen because I need medical treatment that we can’t afford. Please say a prayer, spread this post, and donate at www.gofundme.com/fallonmirsky. Please help NOW because time is of the essence and I don’t have a lot of it left!!
Thanks again for all your support.