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.