How are you? Just wanted to say HI and update you on all that has been happening!!
As I previously written, I am not doing well at all. I knew something was wrong because of the way that I have been feeling. I have been having more difficulty than ever in just even getting off the couch and being mobile, and that is why it has come to the time that I need to get a wheelchair/motor scooter. Unfortunately I am getting too sick and weak to be walking around on my crutches. To think… I was so amazing on them too, as I could outrun anyone on them and carry items with them as well. If there was an Olympic track and field event that dealt with using crutches, you can bet your dollar that I would have won GOLD!
But it has gotten to the point that I am too weak and sick now to even keep going on the crutches. I never wanted to think that I would end up in a wheelchair or have a motor scooter. I always tried fighting it no matter what because I knew that if I gave in (even one time), it would be too easy to give in the next. But it has gotten to the point where I am just too tired to keep going anymore. My body has had enough.
I knew something has been happening lately in my body. Something wasn’t feeling right. I have been feeling weaker than usual and in more pain than usual. I am bleeding more and even having a more difficult time going to the bathroom. I have been getting worst killer stomach pains in the world that I feel like I am going to die. I also have been getting severe edema in my legs. My legs are so swollen that you can’t even see the anklebones anymore. I am also having an extremely hard time to breathing and my heart is feeling weak.
Well it just proves when I say that something is “wrong” with me… I definitely know what I am talking about because when I went for my bloods today I learned that my bloods have dropped. As bad as my bloods have been lately, they have dropped even more. I am really nervous because I know how easily my heart can stop and go into cardiac arrest at this level. It is so easy to have an arrhythmia or something. I really belong in a hospital, but unfortunately we don’t have the funds to go to a hospital. We can’t just go to a “local” hospital either because they don’t know how to treat me. I need to go to a hospital that knows my condition because it isn’t just a matter of giving me IV or a transfusion or something else. There is an underlying cause that is causing my bloods to drop and until it is corrected… I am going to be having this problem.
Therefore, it is imperative that I get the help that is needed, but that can only be done in certain hospitals, which are not located in the area. I really need to get to California or Mayo Clinic, which of course is not around the corner and of course will be expensive. Of course best answer would be to go to Mexico, but that is even further and even more expensive. Since we can’t afford any of these places, I am kinda out of luck. I know some people might be saying to just go to “any” hospital and they can help me or at least stabilize me, but that isn’t the case. They really don’t know how to treat me and will only make things worse. In fact, the times I have gone to the hospital, they have even discharged me with knowing how bad things are and saying that they cannot treat me because I am beyond their scope of knowledge. So I am just holding on and hoping.
It makes it even more difficult when I can’t really tolerate my heart meds anymore. I have special meds that are in ice pops in addition to the ones that I take by mouth in pill form. However, since I am having such a hard time eating and drinking, I am even having a hard time getting down even the simple things like ice pops. Therefore, the amount of ice pops that I should be taking in daily has diminished, which means less heart meds for me. We don’t know what to do because I just can’t tolerate the pops anymore.
In addition, my autonomic dysfunction has been completely out-of-control. I keep breaking into cold sweats. I also keep getting extremely overheated, but unfortunately I can’t sweat because I don’t have the ability to do so. It really stinks. I even get to the point where parts of my body are so overheated whereas other parts are so freezing cold. So I don’t know whether I am freezing or hot at times. Sometimes I think that the autonomic dysfunction is just as bad as the pain or even the worst part of this entire thing. The slightest thing such as an extra glass of water or a change in temperature because I can’t regulate my body temperature will set it off. When my autonomic dysfunction starts… my entire body goes into havoc as I start not to be able to breathe, I can’t tolerate clothing on me, I can’t tolerate anyone or anything touching me, I feel worse than ever, I get all prickly, etc. It really becomes a nightmare and there is nothing that I can do to stop it. Once it starts… it doesn’t stop and it lasts for such a long time!
Besides my illness contributing to this autonomic dysfunction, the weather isn’t helping either. I hate this time of year because of this problem. I mean… I love how it is starting to get warm out and the flowers are starting to bloom and the sun is shining and everything else, but in terms of my illness… it is wreaking havoc on me. I can’t enjoy opening the windows like normal people usually do during this time of year and enjoy having fresh air in the house. Instead, I have to have the windows closed at all times because I can’t tolerate the texture of the air. Not only can’t I regulate the temperature, but also the air feels so “thick” and “dirty.” It really makes it horrible to breathe and it really makes me swell up and such. The air feels so heavy! I think it is because I am so hypersensitive that I can tolerate the very slight bit of humidity and therefore, I need to have the windows closed so to keep the humidity out of the house.
In addition, I can’t regulate body temperature and when the windows are open you can’t really regulate the temperature. We literally go from heat to a/c because I can only tolerate a temperature of 74-76 degrees. I am literally like a human weather station, as I can feel the slightest change in temperature. So at least when we have the a/c and heat on… it makes it so it constantly maintains that temperature. Maybe one day I’ll b able to enjoy a nice spring night with the windows open!
The doctors are running out of options. My doctors would love to put me on marijuana, but unrtunately it isn’t legal in New York. They did think about putting me on a drug that is like having Marijuana called MARINOL, but I haven’t really taken it as of yet because I just can’t manage naymrore pills. I already take over 50 pills daily and enough pills to kill a horse. In fact, the doctors are fascinated actually that I can tolerate all these pills because a person that is like 300 pounds wouldn’t be able to handle them. They think that my liver metabolizes the pills really fast and that is why. Anyway… I would take the Marinol if they knew it would help guaranteed, but it isn’t real Marijuana. MARINOL Capsules contain man-made dronabinol (THC). THC is the naturally occurring component of Cannabis sativa L. (marijuana).
In the meantime, I also heard about a new drug being released called Linzess. It works by increasing the movement of contents through the GI tract and by blocking pain signals in the intestines. In studies, patients taking linaclotide experienced improvement in multiple symptoms including pain or discomfort, bloating, and bowel function. My GI doctor is on vacation this upcoming week, but I have the very first appointment with him on Monday morning at 6:30 AM when he gets back… so I am definitely going to ask him about it. After all… it can’t hurt. I’ve tried everything else out there already anyway.
I have just been getting worse and suffering more than ever. We were supposed to be leaving for Mexico to receive the lifesaving Coma that I desperately need in May. However, despite all the hoping and trying to raise money that I have been doing, it has not been enough and as a result, it as caused us to force us to cancel our trip and postpone it to a later date. We are now looking at going in July, but the doctors are really fearful that I won’t make it that long. I am only hoping that I will be able to make it the extra two months and it will be enough time to raise the money because this treatment is extremely expensive and something that we cannot afford by ourselves. Unfortunately it will cost us $100,000 at least and it is something that I desperately need because without it I will die and die soon! So if you can please pass the word that HELP is needed or can think of any way to raise money, please let me know.
In the meantime, I have been going for my ketamine treatments here in New York. Of course they are no way as potent and helpful as the one that I will be given in Mexico, but it is definitely something I look forward to because it is the only time I get to “escape” this Hell. When I go for this Ketamine treatment, I finally get to be spared the pain and agony of this disease, which I suffer from 24/7 from. If I can live in a ketamine coma/infusion forever until I get to Mexico… I probably would because I am so much in pain and I honestly cannot take it any longer.
However, I must say that we really had some complications the last time we went for the treatment. I guess the weaker my body is getting, the more complications that I am going to have. That is another reason that I need to get to Mexico as soon as possible because I need to be as strong as possible for it because I need to be able to come off the machines and lines that they will be putting me on. I am so weak already and the doctors are already scared that when they put my on complete bypass (I will be surviving completely on machines while I am in the coma in Mexico), I will weaken further and when it is time to extubate, they will have trouble getting me off the machines.
During my last ketamine treatment the machines kept alarming because of how low my heart rate, pulse, and oxygen were all getting. They think it is because I am getting so weak and my organs are shutting down. Therefore, I am not breathing and having the circulation as I should be having. My heart rate literally was in the 30s and my oxygen content was like reading 90. If that wasn’t enough… to make matters worse… we then came home to a letter from one of my doctors saying how worried they are about me and how I am going to “die” and “not make it much longer.” Can you imagine a doctor mailing you such a thing? Like we aren’t trying everything to get to Mexico to get well… it isn’t my fault money doesn’t grow on trees. If we had the money… we would be getting the treatment I need in a heartbeat!
Even though the trip to Mexico was changed to July, we also ended up scheduling another trip to California in June. We are going to see a doctor for my severe Gastroparesis since I cannot eat or drink and I am basically dwindling down to nothing. We are going to Cedars-Sinai Hospital. I always wanted to go to Los Angeles, so I am kinda really excited. Maybe I will see some famous people. I can hope, right? After all… it is Hollywood, right? I just hope that we have the money to go. We really need to go because they are talking about doing a multivisceral transplant on me, which entails getting a new stomach, small and large intestine, pancreas, and liver. There just is never a dull moment. There is always something going on.
I wanna get better so badly. I would do anything to get well already. I want to be normal in the worst way. I want to be like everyone else. I want to be able to “work out” and exercise. I want a career. I want to become a doctor so that I can help others so that they don’t have to end up like me. I want to be able to have a social life. I want to be able to have FUN. I want to be able to have a friends, a social life, as well as a family with a husband and kids. There are so much that I want, as I was robbed of everything that you can imagine and forced to live a life that basically was isolated from everyone.
Sometime I feel like “Rapunzel.” Just like Rapunzel, we both got to live a life until we were locked away. We were also both beautiful when we were growing up, as we both had long golden hair. However, just when Rapunzel reached her twelfth year, the enchantress shuts her away in a tower in the middle of the woods, with neither stairs nor a door, and only one room and one window. When I reached my 12th year in school, I became in a similar situation, as I basically got locked in my house because of my illness. Then… we are both thrown into a situation to fend for ourselves and we need to depend on ourselves in order to stay alive. After Rapunzel gives away the “prince” to the enchantress, the enchantress in anger cuts off Rapunzel’s hair and casts her out into the wilderness to fend for herself. I am thrown into the fire of my illness because it has come down to the very issue of me being able to afford the treatment that I need in order to be able to survive and stay alive.
I only hope that I will have the same happiness at the end of my story as Rapunzel did. Rapunzel ended up living happily ever after despite all that she went through with her prince, as she found him wandering and then restoring his sight. He then leads her and their children to his kingdom, where they live happily ever after.
On a better note… I am having a director come to my home in the morning to get my story known. I am really excited to have this done because not only do I want my story known, but also I want to really make a difference in the world. The documentary is all about making people think and bring awareness. The hope is that people will stop focusing on drama and focus more on helping others, which is what the message is to be about with your interview/segment.
In addition, the director is thinking about coming with us to Mexico as well to capture the entire Coma and document it. It would make a really amazing video and I really hope that works out well so others can see exactly what it is like. Not only would I love to have his support with me down in Mexico while I undergo this lifesaving procedure that very few people have undergone, but I would love for others to know exactly what I went through and what all their donations have contributed to and how this Coma was such a “Miracle” for me. It really is what is going to SAVE my life. That is why I need so much help in getting to Mexico!! Please help!
On that note… I guess I will be going. I am getting tired and weak and I am in too much pain to write more. Just want to remind you that bracelets are still available for $5. If interested, please inbox me at Femirsky@gmail.com. They come in pink or blue and say HELP FALLON FIGHT! All money goes towards helping to pay for my medical expenses.
Thanks again for all your support.