I know it has been awhile since I have written, but the truth is that I have not been well and lots have been happening so quickly that my head has been spinning. If I had written what was happening, it probably would have been totally different by the time you read what I had written. So between not feeling well and how fast everything has been happening/changing, I just haven’t been able to write.
So much has been happening lately and I am not doing well at all. I am rapidly deteriorated and I am so scared that I am not going to make it through this. I am so scared because I know how desperately I need certain treatments and medications, but unfortunately it is all contingent on the amount of funds that we receive. So essentially, the truth of the matter is that staying alive and being able to “live” is really out of my hands. All I can do is hope and pray that people will be generous and sympathetic as they hear about my situation and as a result, hopefully they will donate. It really stinks that staying alive and receiving treatment is not in my control but rather in the control of the world.
I hate begging and pleading for donations because I hate sounding like a broken record. No one wants to keep hearing the same story over and over again, but the truth of the matter is that I just want to get better so badly that all I can do is plead for funds. I see all the time people getting help on TV and through the media, but unfortunately, I can’t get the same aid that they do no matter how hard I try. I have tried countless times to reach out to the media, celebrities, etc. but I have learned that just like everything else in the world… it isn’t “what” you know in the world, but “whom” you know and unfortunately I don’t know anyone. So…. I am kind of out of luck in that area.
In addition to asking and hoping that I will receive aid from these letters, I am also writing these letters to hopefully bring awareness to my condition so that people don’t have to suffer the same horrible suffering that I am going through. Unfortunately, I am suffering from a very rare, life-threatening and debilitating disease that not many things are known about. Just as I am a guinea pig to hopefully find a treatment that will work, I am hoping that I am also serving as a way of showing the world what this disease really is all about and how you can still make a difference and survive even if you are “sick.” I am here to show you what a true “fighter” really is and how even if you are stricken with a debilitating disease… you don’t have to just crumble up in a corner and die. I have always wanted to make a difference in the world and society from when I was a little girl. I always had the ambition to become a doctor so that I can help others. Yet, even though I never got to achieve my actual dream, I really hope that I can still achieve my goal and dream of making a difference in the world.
Being sick is not easy and one of the hardest things in life is to gain support of others. As if finding a knowledgeable and caring doctor wasn’t difficult enough, finding caring and supportive friends, as well as compassionate people to be around can be even more difficult. Most people are simply not capable of understanding, unless they have the misfortune of an “illness” of their own.
So many people take to so much for granted like simply washing their hair, eating, walking, or paying the bills. People even take their health for granted because they are used to going to a doctor, receiving a magic pill, and instantly they are better. They don’t remember that before that pill, they were exhausted, achy all over, and could barely get out of bed. Burt fortunately, the illness passed and they were able to get back to their old self and usual activities. Yet, think about if that wasn’t the case. Think that if everyday you had to hobble around on crutches, was extremely tired as if you have not slept at all, and was in the most excruciating pain that you can imagine while you performed every single task you had to do throughout the day. Think how you had to feel this way throughout going to work, school, doing regular tasks such as washing your hair, and even watching TV. Tasks that you were able to do easily would become nearly impossible. It is stressful, exhausting, and depressing. Yet, you can’t just shut it off and tuck it aside. The person suffering from all this has to face it 24/7 and doesn’t get a millisecond of escape from it. Even all dreams that you dreamt of, as well as everything that you worked and strived for, ends up getting robbed and taken from you.
As my dad always tells me, “Health is wealth and when you have your health, you have everything.” We have really lost everything and never did I think my life was going to be like this, as this illness has really caused a HUGE financial burden on our family. I always lived a “comfortable” lifestyle growing up, as we weren’t rich and we weren’t poor. Yet now, everything is snowballing out of control. The bills are piling up and we have exhausted all our funds so there is nothing left to pay for the lifesaving treatment that I desperately need to survive. We have not been on a vacation in 10 years, we can’t afford the bills, we can’t afford the mortgage, and even going out to eat has stopped. Putting food into the house is something that we also struggle with. Yet, I continue to suffer and deteriorate because nothing is “free” in life and unfortunately I need very expensive treatments and medications, as well as money to see doctors across the country.
So if you are getting tired of seeing these ‘pleads’ or my blogs or anything else, please know that I am doing them not only so I can hopefully receive donations so that I can afford the lifesaving treatment that I desperately need, but so I can hopefully make a difference in the world. I may not be able to be my doctor now and “cure” the world, but I still hope my story will make a difference in the world because not only do I want to bring awareness to this rare condition, but also I want to show that you don’t have to just “give up” because you are ‘sick’. As you have seen throughout my battle of this illness, I have fought tooth and nail to stay alive. No one can say that I haven’t tried my hardest. But unfortunately, I have learned that no matter how hard you try, some things are just beyond your control.
So when you see these letters, please know that they are coming from a person who is writing because I want to live so much. I have so much to offer the world and I only wish that I can receive the lifesaving treatment that I so desperately need so that I can go on and enter the medical field so that I can further help others. I have suffered both physical and emotional pain that nobody should ever endure. I don’t wish this on my worst enemy. So I am only hoping that one day I will be “free” from this life of suffering, but I know it is out of my hands and in the hands of the rest of the world because we can’t afford the necessary treatments that I need on our own.
That being said… let me tell you a little of what has been happening. Even though everything is “booked,” it is all contingent on whether we receive enough funds. We are crossing our fingers that it will all work out because I am not doing well. The doctors are even seeing how rapidly I am deteriorating and getting very fearful that I am not going to make it much longer. If the doctors could have their way, they would have me at the Cleveland Clinic tomorrow. But unfortunately they don’t have to worry about the financial issues and paying the bills like we do.
One week from tomorrow, we are supposed to be leaving for the Cleveland Clinic. We are supposed to be meeting with some doctors and finalizing everything with them I am also having preoperative testing because surgery is in December. There is quite a lot on the agenda when we go there. But, the doctors have promised me that I will be able to go home on Thanksgiving so that I can spend Thanksgiving dinner as a “family” since my dad and I are the only ones going and my mom is staying behind. So we are taking the ONLY flight home on Thursday and as long as the weather holds up, we are coming home Thursday so that I can be with my mom and we can be a family for Thanksgiving.
It is very important for me to be here for Thanksgiving because we will not be celebrating the holidays this year. My dad and I will be at the Cleveland Clinic for the holidays because I am supposed to be having mega surgery. My mom will be staying behind to watch the house and keep the business going as much as possible. We all can’t afford to go to Cleveland and close everything up, so we have to split up. We probably won’t see my mom for at least 6 weeks. It is also very important to celebrate this holiday because the doctors feel that if something isn’t done to “help” me, this will probably be my last thanksgiving too. So I want to celebrate it as family and be with both my mom and dad during this time.
I just hope that we will be able to have Thanksgiving dinner because of the expenses. My parents were talking about not having Thanksgiving because of how much money it costs and everything. However, I told them that I don’t care how much it costs; this is one thing that I definitely want. If something has to give to make this happen… then so be it. My family has suffered so much as it is, they deserve to have one happy holiday… especially Thanksgiving when it’s a family holiday and it is a day of giving “thanks!” After all, I am very thankful that I have two of the best parents in the world. I told them that I don’t care how little we make the dinner, but we are definitely having Thanksgiving. I just hope the weather holds up because you never know anymore with this weather.
We are supposed to be heading back to Cleveland on December 14th because I am scheduled to have heart surgery on December 16th. They are supposed to be taking the calcium calcifications out of my coronary heart, as well as putting lines into my heart as well. They are putting in a central access line so that they can use it for an emergency, as well as for upcoming surgery that is taking place 2 weeks later, as it will be a massive surgery and they need an “emergency” access port. They are also going to try to administer TPN through this port because they want to try to make me as strong as can be for that upcoming surgery. I only weigh in the 60s and I have no reserves if something should happen. This surgery is extremely dangerous and risky, but in my state… it is really a disaster. So they are trying to prepare me and make me as strong as can be for it.
The next surgery is December 30th. They are going to be removing my colon at that time. My entire GI tract is “dead” and nothing is passing through. Therefore, I need to have a multivisceral transplant, which includes receiving a new stomach, small and large intestine, pancreas, and liver. However, we are first worrying about removing the colon because I am becoming intoxicated by everything sitting in it. Since nothing is passing through it, whatever is getting into the colon (such as the drugs and the little food that does get in) ends up rotting and the toxins entering my bloodstream and going to my organs. As a result, my organs and brain are becoming intoxicated and my entire body is dying because I am being poisoned. When the surgeons take out the colon, we will know how urgently the transplant will be needed because it depends on the small intestine and how it looks.
So I will be having some massive surgeries ahead of me. I will be in Cleveland for about 6 weeks and therefore, I will be celebrating Chanukah, Christmas, and the New Year in Cleveland. I won’t be home until the middle to later part of January. I am really scared because I know how dangerous these surgeries are in general… let alone someone in my condition. I am just hoping that everything works out and since the surgery is December 30th, I am hoping that this will mean that I will be starting 2015 as a brand new and healthy person. My dad is dreading the 6 weeks there because he can’t imagine staying in a hospital for 6 weeks. He says he is going to go “insane.” I probably will end up killing him because he can’t even sit still in the hospital for like 1 day… let alone 6 weeks.
All I know is that I am going to miss my mom and my animals. I really wish I could take them all with me. But unfortunately they can’t come. I tried to get my mom to come for even the surgery especially because it is 2 days before the New Year and the business is closed for the New Year, but we just can’t afford it. But, we have our IPhones and that means the Facetime will be going like crazy. So… even though she won’t physically be with us, she will only literally be a phone call away and we will be able to still see each other.
In the meantime though, I have been really deteriorating and as a result, I have been undergoing ketamine comas/infusions every week. This past week I even had a blood patch transfusion to the brain because I am getting pressure changes in my brain. I wasn’t expecting that to happen, but when I went for the ketamine, I learned that it had to be done. It was so painful and I am still suffering from the pain of the needles.
During a blood patch transfusion, they literally drain your own blood and use it by putting it back into you through your spine. They did it while I was under the ketamine so I wouldn’t feel it so badly, but apparently I really felt it still because my dad told me that he could hear me screaming down the hall. He told the doctor that “she better not remember any of that from the way she was screaming!” I only hope that it worked!
I have also been going every Friday for surgery on my intestines. They have been ‘cleaning’ them out as best as can be because of the fact that the toxins are spilling into my bloodstream and intoxicating my organs. They are hoping to buy me time by doing this. They are also hoping that this will alleviate the intestines perforating or me going into Sepsis.
The doctors are also talking about having me go for brain surgery. There is a very well known brain surgeon who is interested in my case and he is in the process of reviewing my case with my doctors. They want to put a machine in my brain because they think that it will really help and make a difference. I wonder what they will think of next.
So… that appears to be all that is happening. So as you can see… I have a lot on my plate to deal with. However, it is all contingent on funds and therefore, we are only hoping that we receive the funds that we need so it all works out. So if you can please spread the word that HELP is needed and please pray that we get the help that we need so I receive the lifesaving treatment that I desperately need, we would really appreciate it.
Well… I guess I wrote enough for right now. I have wanted to start my new book written by Sophie Kinsella called “Shopaholic to the Stars.” Maybe I will do a little reading tonight.
Thanks again for reading and taking the time to support, encourage, and pray for me. Remember that donations are very much welcome at www.gofundme.com/FallonMirsky. If you have any suggestions for fundraising, they are much appreciated as well and can be sent to Femirsky@gmail.com