It has been brought to my attention that I haven’t recently been “blogging” as frequently as I once was and therefore, I kinda have been out of touch. Sorry about that but as the time has progressed, I am sad to say that things have taken a turn for the worse and I am really getting sicker than ever. Things are down falling at a pace faster than I never have ever seen. It is like the harder I try… the harder I fall. Whereas before I was steadily declining, I am rapidly declining now. After all, it is only so much a person can take. It is only so much stress a wire can take without snapping. I really think this wire has frayed enough and it is at the point where it is snapped. I need help now because I am freefalling downward and if nothing is done and done soon I am definitely not going to make it. I have no parachute anymore to save me.
I am not going to lie and pretend that everything is “peachy” psychologically and that this illness isn’t affecting me mentally. I really have to admit that as much as this illness is taking a toll on my body physically, it is also taking a toll on me psychologically and mentally. I am not only physically exhausted, but I am mentally exhausted. Not only is my body ready to “give up,” but I am also ready to give up “mentally” as well. I just honestly don’t know how much longer I can take this. I can’t take the pain and suffering. It is nonstop and I have been doing it for too long already. I am trying to hold on and hope that I am going to get better, but the truth is that I am starting to give up.
I know that there is a “miracle” out there and a great chance that I can get better and will get better… but I also know that I cannot attain that on my own. I know that the chances of getting my life back and being able to receive the very lifesaving treatment that is necessary to save my life is out of my hands but rests in the hands of the rest of the world. I hate knowing that I am not in the driver’s seat of my own life. I hate knowing that I am so dependent on others in this world and I need others soooooo desperately in order to get better and get well.
I hate knowing that there is a potential treatment and possibility of getting better and resuming a life out there, but the only way of getting it is by others coming to my aid because my family cannot do it alone. It is like I am being teased in life because I see this possibility being held right in front of me and yet, I am unable to grasp it. It is like teasing a dog with a bone. I am sitting there much like a dog salivating and waiting so desperately waiting for it… and yet it keeps being taken away from me. I only hope that I don’t have to endure this much longer because the truth of the matter is that I am a time bomb that is detonating and it is going off very soon!
I need help so badly! As I said before, I am falling faster than ever. For one thing. My body is shutting down faster than ever because it is now officially feeding off itself. My blood pressure is falling, which is something that was already very low (80/60 so it didn’t really have that much room to fall to begin with), my heart rate is slowing, my bloods are falling, my weight is plummeting, etc. It just can’t get any worse. In addition, even though I was I was extremely thin and had a very low BMI and we all knew that I was malnourished and stuff, I was not technically “malnourished” according to my bloodwork before because at least I had a normal amount of proteins. However, it is now at the point that my proteins are very falling, which is extremely dangerous. When a blood test reveals that your total protein and albumin levels are low, this can be an indication of certain underlying health conditions.
It is no wonder that I am feeling so horrible. I am weaker than ever and it all goes in hand with what my bloods are showing. Protein is essential for tissue repair and muscle building. If your protein is low, your muscles can begin to deteriorate. This contributes to weakness, which is most often the first sign of a protein deficiency. It also results in muscle cramping, and as the degradation of your muscles progresses, simple tasks like walking might leave you winded, while climbing stairs seems unfathomable. I basically just spend my days on the couch because I am unable to move. It is at the point that we don’t even know if I am going to make it through a day or night.
I am trying so hard to keep my bloods up and to keep myself a “good” as can be. But it seems the harder I am trying to keep myself going, the faster I am falling. My teeth are rotting and my osteonecrosis on my jaw is worsening at a faster pace than ever. I desperately need also root canals and dental work, but due to the cost of that… there is no way that we can afford it. So I just sit here suffering and trying to deal with everything instead of actually “remedy” the problem because I just can’t afford it.
In addition, I desperately need medication to keep me going. However, my medication is extremely expensive and I take quite a lot as well. In addition, not all these meds are not covered by insurance, as they are bought out of the country because they are not FDA approved. If they happen to be ones that are able to be purchased in the country, they are so incredibly expensive even though I just have to pay the copayment because they happen to be in the highest tiers and of course there are not generics. In fact, I take more medication than a person that weights 300 lbs. I literally take over 50 pills daily… not including injections. So we desperately need to raise money because most of the money goes towards my medication… something I can’t live without.
I am really asking and begging for help. The call finally came in that I need to go back to California for pre-surgical testing for the huge surgery for my colon and esophagus, as well as for procedures. I desperately need to get to Mexico to have the Ketamine Coma, but since it costs at least $100,000 and we don’t have the funds at this time, we really need to do something to ‘buy’ time in the meantime, which means that we need to go to California to have surgery on my colon and esophagus. Unfortunately due to my complicated nature of my circumstances, there really isn’t any local area or doctor that can perform these operations.
I need to get to California because I need to have surgery to remove my colon since I have severe gastroparesis and it is literally ‘dead.’ It is severely dilated, causing blockages, and the doctors are fearing that if something isn’t done quickly that it could become perforated or ruptured or that I can go into sepsis. As nothing moves through the colon, anything that remains in my body such as all the medication and food that I take and don’t throw up ends up rotting. So I can easily get a life threatening infection like sepsis especially if the colon ruptures or perforates.
So I need to have surgery to remove the colon, but the doctors are wondering on how best to proceed with this operation. They are hoping to be able to proceed with the operation without having to do a ileostomy and give me a bag, but they don’t know if it will be possible. So they want to do some testing on me to further get a clearer picture as to what exactly is needed and needs to be done. They want me to come back to California to come for tests so that they can see if possibly they can hook up my GI tract in a way as to avoid the bag. In addition, since I have never been to this hospital before, they want to get a very CLEAR picture of my entire GI tract and therefore they want to do some additional testing to further determine that they are not ‘missing’ anything.
The doctors also noted that my esophagus doesn’t work because of the gastroparesis either. Therefore, they want to do additional testing on that as well because they told me that I need surgery on that as well. I need to have surgery in order to help me to swallow because as of right now I am having extremely hard time swallowing things. It is a HUGE problem because not only is it making it impossible to eat anything, but also it is causing me to aspirate into my lungs. It is extremely life threatening to be aspirating into your lungs and I can easily get Pneumonia or die if I aspirate. As it is… I am already filling up on fluids and aspirating. When I breathe you hear all the fluid buildup in my lungs. It is really freaky. It really impacts my breathing as well and makes it extremely difficult to breathe. Whereas before I was able to manage to clear my airway to a point by coughing, it is not possible now.
Well… the call finally came in today that the time to go to California for all this testing and such is scheduled for the week of June 15th. Ideally they would like to have it sooner because it is really an emergency, but unfortunately there is one or two tests that don’t have an opening until that time and they don’t want to have me coming back and forth. It really is too much on my body. So there really wasn’t any choice but to wait until all the tests could be arranged. After all, California isn’t exactly “close!”
So we leave on Father’s Day for California. I just hope that we will be able to afford to go because I know how expensive that this trip is going to be. Los Angeles is really expensive and I know how expensive this past trip was and it was not nearly as long as this upcoming trip will be. So I am really hoping that even though I need to have to get to California as soon as possible, I am hoping that at the very least it will give me time to raise some money for the trip since I have to wait until Father’s Day to go. But I can’t do this without your help. So if you can please do anything to facilitate this… whether it is by fundraising, sharing my website, etc. I would really appreciate it.
The doctors have arranged to have all these different tests and procedures performed on me. However, since I am not their ‘typical’ patient, I cannot have the same prep or care as the regular patient. So they really had to take their time with me and come up with a unique plan. They really don’t know how they are going to get me to empty my GI tract enough to get a thorough look of it, but they are working on it.
In the meantime, I have surgery every week here to be vacuumed and suctioned and therefore, I have it this upcoming Friday. What a life this is. I also have my ketamine infusions to endure, which I would take in a heartbeat because that is the only thing that saves me from this Hell. I wish I can just stay in a ketamine sleep forever because I just can’t take the suffering. The pain is just unfathomable.
I would do anything to get well. I can’t wait to be able to resume my life. I am only hoping that I get that chance. I know though that I am really running out of time. But I am only hoping and praying that by the help of others I will be able to get to go to Mexico and California and receive the lifesaving treatment I need to save my life. After all… I so desperately want to become that doctor I want to be, have a husband, have kids, make a difference in society, enjoy life, etc. I have lost so much because of this disease and I don’t want to lose anymore.
In the meantime, it is just about holding on and hoping. I try to keep myself positive with my cat, dog, and turtle!! I recently made a book of my past trip to California with my dad. I love taking pictures. I take pictures of literally anything… much like my dad. When my dad gets his hands on a camera… he takes pictures of anything and everything as well. In fact, when I wake up from a procedure, I never know what I can find in the camera because he will literally take tons of selfies, pictures of his teeth, eyes, dirt, IV bags, bugs, etc. So I know who I take after.
So I like to make these photo books that actually look like “real” and “published” books. I don’t like regular photo albums because the pictures can just fall out and become lost. I like when they look like “real” books because this way they can last forever and the pictures can never disappear. It also looks so professional and I can decorate it and make quotes and descriptions.
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.