I know it has been a little bit since I written, but I figured I would write and catch you up on all that has been happening. A lot has been happening since the last time I wrote, but I have unfortunately been too ill to write. In fact, there has been so much happening that I don’t even know where to start.
I guess the best place to start is to say that I have spoken to my doctor in Mexico and the date for the Coma is pretty much set. We have two dates in mind, but I am leaning more towards the latter date because of the fact that I want to be here for Mother’s day. I want to be able to celebrate that special date with my mom because after all, this can very well be the very last holiday I can be celebrating because of the way things have been. Also, if things don’t go well in the Coma, I don’t want to ruin her special day either. I know it is just a “day” that can be celebrated earlier and on any other day, but she has given up so much for me already that I really want to make that one day special for her and I don’t want her to be “alone” on that day either since she won’t be making the trip to Mexico with me.
We have been given the option of two days to go to Mexico. The first day is to go to Mexico on May 8th and go into the Ketamine Coma on Sunday, May 11th, which is also Mother’s Day. The other option is to leave on May 15th and going into the coma on Sunday, May 18th. It is only a week later and to be able to be home to celebrate Mother’s Day, I really think I am leaning more towards the latter date.
In addition, I am going to need a second person to come to Mexico when I am extubated because I will need someone to stay with me 24/7 for about a week. The doctors say I need another person down there besides my dad because they said it would be way too much for him. So they will only go through with the Coma if I have someone with him.
Thank goodness my cousin will be coming to Mexico during that time to help out. It will be for about a week, but I am so fortunate for him because this Coma definitely wouldn’t have been possible without him. The thing is that when I am extubated, I won’t know anyone… I won’t know my dad, the doctor, not even myself! The ketamine will wipe out my memory and give me horrible hallucinations. Therefore I will need someone to say with me all the time (even sleep at the hospital) because I won’t be able to be left alone. They will have to help me get my memory back and be able to eat again.
But of course both dates are contingent on the fact that we are able to provide the funds to pay for the Coma. The Coma will cost us OVER $100,000 and although we did raise some money, we are far from our goal. We have to may a deposit of at least $50,000 by the end of this month and I don’t even have that much money. So I am hoping that I will be able to receive as much help as possible because unless I get the money to pay for the Coma and especially give them the deposit, I don’t think that this Coma is even going to be a possibility.
I need this Coma more than anything in the world and I really can’t wait any longer for it. I am really not doing well and really deteriorating faster than ever. Even the doctors say we can’t wait any longer. It has gotten to the point where I am extremely weak and I can’t really even get off the couch. I also cannot breathe and my organs are failing. I barely can even go to the bathroom. Eating is another task that is basically impossible and something that I can’t afford not to do because I weigh so little already.
In addition, the pain has been out of this world. The weather isn’t helping much, but the pain is uncontrollable that I am literally climbing out of skin. Nothing is working at all to control the pain. Even the lightest touch sends my pain soaring further. I have come to despise those three little words. I can feel the weather changing. Muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out. I feel like I am on fire…especially my legs and feet. It constantly feels like I am doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week. It is so bad that nothing is tolerable on it.
To make matters worse, I am having horrible edema especially in my legs. This is not a good sign because it can be a sign of heart failure, kidney failure, or liver failure, which are all organs that are giving me problems. My organs are not doing well and my bloods are very critical. Yet, even things that would perhaps alleviate the edema such as raising the legs won’t help.
Eating has been horrible, as I can’t eat anything. The slightest thought of food… even something so simple as my medicated ice pops make me nauseous. The only things that I can possibly get down are eggs and ice cream… and that is with a problem.
My intestines have been giving us problems as well. I can’t go to the bathroom for the longest time and it continues to worsen. I keep producing this mucous because I am so backed up that mucous keeps getting expelled. It really stinks because it basically can come out anytime… even when I am sleeping. The doctors and my parents have told me not to feel embarrassed because it isn’t anything I can really “control” but it still really bothers me when I “make” in my pants. After all… I am 32 years old and shouldn’t be making in my pants. When is this ever going to stop?
It just worsens and worsens. To make matters worse… not only are we having problems affording the lifesaving treatment that I need in Mexico, as well as the current treatments and medications that are not covered by insurance in the United States, but also now we have had the additional problem about having problems with our actual health insurance. To put it simply… we have had absolutely NO health insurance whatsoever. Therefore, I had no coverage to get medications, see doctors, receive treatments, etc.
People don’t realize it, but when you have your health… you have everything. Due to the expenses of my medical condition, we were a little late paying for the health insurance. Well, of course they didn’t want to wait for payment and were quick to take it away. I guess that stupid money was more important than helping to “save” my life. Therefore, my health insurance refused to reinstate our policy unless we paid the amount that we were missing for the month and they tacked on that we had to pay a month ahead. For us to come up with over $6000, it was basically impossible. So I went through a period of no insurance, which was horrible because it really complicated. Yet, we really had no other choice because we didn’t have money to pay the amount that they wanted. After speaking and pleading with them, they still wouldn’t give in to us. As a result, we had to literally scrabble for the money, sell whatever we could, etc. My mom even ended up selling her wedding band, which is something I never thought she would.
I have really been trying to keep my spirits up though even though it has really been difficult. I try little things like make a mug up saying things like “I am the best” just to make me feel better. I feel really worthless lately, as this disease really took away all that I desired to be. I had such goals of having a husband and kids, going to college and becoming a doctor, etc. but this illness has forced me into living a life that is confined to staying within the 4 walls of my home because of the pain and suffering it brings with it.
The only companions that I have felt that I have had throughout this are my pets. They make the best if friends because they are always there for me. They spend the nights and days with me and are my joys of life. I only wish I could bring them with me to Mexico. Whereas everyone walked out on me when I got sick because you really learn who your true friends are when you get sick, they have stayed with me throughout it all.
It is definitely not easy always being “alone”. Yet, having my pets make it a bit easier. But I really wish that this disease really didn’t rob me of my social life and didn’t take the FUN out of my life. Thank goodness for them.
I am also glad I have my animals because they have been my sources of comfort as well, as it has been very difficult to talk to my parents because they are under so much stress already that they can’t handle anything else. I really also don’t want to further burden them with my problems. My dad has really been trying to make ends meet. He has been working harder than ever, which is pretty hard considering how difficult he already works. But with the weather being the way it has been in the sense that the winter has been so bad and long, the economy has literally shut down and my dad’s business is really suffering. He works so very hard just to try to survive and make an income. It scares me so much because it isn’t like he is sitting in an office and doing deskwork. Yet, he is 60 years old and running around. Then he comes back and has to do the office work as well, as he is the owner and CEO of the company and has to make sure that everything is situated in the company and set up appropriately in order for it to function. He works basically 6-7 days a week and he’s up at 3AM to go to work and whereas he used to come home at 6PM, he now even goes out on additional inspections afterwards. He is so very tired. Yet, he does all this to help the family… not to mention all the running around he does for me when I have to see doctors, go for treatments, etc. Then when he comes home, he doesn’t rest either. Instead, he dedicates his time to take care of me. I only hope that my dad will be ok because if anything ever happened to him, I would never forgive myself. I know my dad considers himself “Superman”, but even Superman has to rest sometime.
On a better note, I finally finished a book. It was a real accomplishment for me because it was the first book I finished in such a long time… like over 5 years. It was written by James Patterson and called CROSS MY HEART. It might have taken me awhile, but at least I finished it. I am now reading another one of his books called FIRST LOVE! Hopefully I will be just as successful and finish that book as well.
I have been extremely thankful for the rainbow loom charms that I have received. I am planning on bringing them with me to Mexico and decorating my hospital room with them. This way when I am there (Since I will be there for sometime), it will look more comfortable. I am also going to put them on the IV poles as well to help bring some happiness to such a scary situation because they are so cute and make me smile. I am also using them as a way of “luck” because I read in a book when I was younger about this girl who was dying of Cancer and she was making 1,000 paper cranes for luck. So I decided to modify that and try to make 1,000 rainbow looms. It would be amazing if I receive that many. I would love to make it myself, but they look incredibly difficult and I have absolutely no idea even where to begin. They are also expensive and I can use the money for something else. But I want to thank anyone who will be willing to make them and send them to me… especially the person who is organizing this. At least they make me smile!
My mom also finally gave me a necklace that she wanted to give me for a while. She was holding onto it for some time… and she finally gave it to me because she thought that the time was right. I felt kind of guilty taking it though considering the fact that we are having all these financial problems and I could sell it or something to use the money towards my medical expenses, but my mom said that she wanted me to have it because it was a heart pendant that meant something to her. It really is truly beautiful and I am so lucky that she gave it to me. She gave it to me because she won’t be in Mexico with me when I undergo the Coma. This way I will have something with me around me neck to always remind me of her and to have her always right by my side. I love my mom!
Well… I have a busy week coming up. This week I have an appointment with another bone doctor because I need to have my bones made stronger and my old doctor is too afraid because of the osteonecrosis. Yet it is the consensus of my other doctors that something has to be done because my bones are so weak that all I need is a life-threatening fracture, and I will be in a worse situation.
I also have another ketamine coma/infusion on Friday. Thank goodness because I can’t stand this pain anymore. At least when I undergo the ketamine I get one day of relief when I am “under”. Too bad it doesn’t last.
I just want to get better so badly. I hate what my life has turned into. My life has really been turned upside down. I even hate to take pictures of myself. I mean I love taking pictures, but I just hate the way I come out. People don’t realize how bad I really do look because they don’t realize that every single picture I send and they see are “touched up” because I hate the way I look in them. Since I am so thin and have no muscle tone in me, my skin literally just sags on my bones. My face is just full of wrinkles because it has no fat to fill it out. So I airbrush all the wrinkles out and try to conceal all the stuff that I am ‘self conscious’ about. My parents keep saying that I am beautiful, but I feel like a hideous beast. Between the colorful changes this illness has given me, the swelling, how emaciated I look, etc., I really don’t consider myself beautiful anymore. I only wish that one day I would be beautiful again. It scares me though because I don’t want to chase people away based on how I look. After all, even though people don’t want to necessarily admit to it… appearances do mean a lot and go a long way. I can’t tell you how many stares I get when I change colors or because I look so emaciated. It really stinks.
I only pray that one day I will get my life back. I pray that all my pain and suffering ends. I pray that I get my dream of becoming a doctor fulfilled so that I can help others who are suffering. I pray that I will not be a burden on anyone… especially my family. I pray that I will be able to be “touched” without pain searing through my body. I pray that I will be able to have a family of my own with a husband and kids. I pray that I beat this and lead a long and happy life.
So I am just focusing on May and hoping and praying that I will have the funds to undergo the Ketamine Coma. I don’t know what will happen if we cannot do it because of insufficient funds. That is why I am begging for all the help that others can give me. Please help make a difference today! I desperately need your help to receive lifesaving treatment that we can’t afford. I need expensive treatment especially a radical ketamine coma in Mexico that’ll cost over $100,000. 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 continued support.