I just wanted to update on what has been occurring since a lot has occurred in the past few days. I am not doing very well and it is making going to Mexico and California more urgent than ever. Yet, we are unable to afford either of the trips. We are at least hoping to be able to go on Sunday to California because at least my Gastroparesis will be helped even though the real “cure” to my neurological disease and autonomic dysfunction is located in Mexico! In addition, since we cannot afford to go to Mexico at this time because it costs $100,000 we are hoping to ‘buy’ time by going to California because even though it will still be costly, it will cost less than the $100,000 that we need for Mexico.
I am really begging and pleading for help. I need as much help from others as I can get because to be quite frank and honest with you… we cannot afford my medical treatment by ourselves and if I don’t get to Mexico and California, I will definitely die. I am like a time bomb ticking away and it is at the point that I am actually “detonating”. I have never been so scared before. I know I sound like a “broken record” already with telling you how bad I am doing and asking for “help” but I just can’t do anything else but do this and hope that one day my wish will come true that I will receive enough funds so that I can get the appropriate treatment that I desperately need to save my life. We can’t even afford any of my medication anymore! I know how difficult it is to survive in today’s world with the economy being the way it is, but I know if everyone would donate even just one dollar ($1), I would be able to receive my wish. I am not asking for much. Any help whatsoever would be much appreciative. After all… one dollar is one less than we have to come up with.
I have been doing really poorly lately. I have seen things going wrong with my body lately that I have never seen before. When I questioned my doctor about “why all of a sudden is this occurring and being so bad?” My doctor replied to me by saying, “You are deteriorating and what is happening has to start to show somewhere and in some way.” So… now I am seeing just how bad this disease is actually getting instead of just “feeling” and seeing the numbers!!
To begin with, I am totally scared about my legs. They are so swollen. I call my legs “elephant” legs because they are so bad. They have the worst case of pitted edema that I have ever seen. When you touch them you can actually leave fingerprints in them. They are so filled with fluid and even when I raise them or elevate them, the edema doesn’t dissipate like it should. The more liquids that I drink… of course the worse it gets. So you can imagine by the end of the day how swollen my legs, ankles, and feet really are.
In addition, I have been having a really hard time breathing… worse than usual. It kind of is no surprise when you look at how much fluid is building up in my legs. I am aspirating really bad into my lungs and just as my legs are filling up with fluid, so are my lungs. It literally feels like I am drowning in my fluids. In fact, when I go to the doctor, the doctor can even hear how “noisy” it is inside of me.
I spent the entire day today going to doctors. I had to get my bloods taken and I also had to go to the kidney doctor as well because my kidneys aren’t doing so well either. I am having a very hard time urinating, as I am having a hard time “emptying” my bladder completely even though I frequently go to the bathroom.
To begin with, my bloods came back and they are not good at all. Well… I can’t remember the last time they were “good,” but these bloods were worse than usual. To begin with, my glucose is really low and they are scared that I can go into a coma. I usually have really low glucose, but it never really was this low. The absolute lowest it should be is 70, but mine was reading like 37. It is dangerously low. My body really can’t process sugars and fats, so it isn’t really good. In fact, to tell you the truth, I am not even allowed to have fats in my diet because of my severe gastroparesis.
I also found out that my clotting is really off. It is usually off too, but it is off more than usual. Therefore, it makes going for surgery even more risky. This is definitely not a good thing especially when I go for surgery every Friday when I get suctioned and vacuumed out. I already have internal bleeding somewhere too and with this clotting problem, it really makes it harder to clot. I also have to have that upcoming surgery to remove my colon and such. But with this clotting factor being so irregular, it really complicates things even further.
In addition, of heart bloods are off as usual that can cause a severe arrhythmia and cardiac arrest. My electrolytes are extremely low and therefore, it really can be troublesome especially when my heart is not functioning well to begin with and I am taking the medication that I am already taking.
It is like I am in a no win situation because I desperately need to be on these medications for my illness and yet, these medications are causing added complications to my heart. These medications that I am taking are causing extra stress to me heart on top of the stress that my heart is already having by having low blood values and my illness working on it. It is really not a good combination and yet, I have no choice but to stay on these meds though because it is for my illness and I can’t come off of them. I just got to hope that it doesn’t really come together and add up to cause one real great devastating problem and cause a real devastating outcome.
This is just one more reason why I really need to go to Mexico. Not only do I need to go to Mexico to get better because of my illness, but also I have to get off these medications. There is no other way I will be able to get off the meds but if I go to Mexico. I can’t come off them because I am on such high amounts and so dependent on it. I also have the severe autonomic dysfunction and therefore, it really is a huge problem. Even going down the slightest amount causes severe problems. That is why I need to be in a coma when I am “detoxed” off these drugs. So at least when I go to Mexico and go into the Ketamine Coma I won’t just be “cured” of this illness, but I will be detoxed off these drugs too. So it will be a win/win combo. I just got to be able to afford it. U know? I got to get there ASAP!!
I also went to the kidney doctor today because my kidneys aren’t doing well. Not only did I go to the kidney doctor to see if maybe it was contributing to the edema in my legs, but I also been having problems going to the bathroom in the sense that I keep having to go! The doctor also discussed with me how he is afraid that as the disease progresses and the autonomic dysfunction worsens, he is fearful that the disease might cause me to have to catheterize myself each time I have to go to the bathroom. I don’t even want to ever think of having to do that. I really hope it never has to come down to that.
Having low blood pressure, as my blood pressure is only usually about 70/30, causes me a lot of problems. To begin with, the doctor wanted to put me on a diuretic for the edema and because I am having difficulty emptying my bladder and such, but unfortunately it isn’t possible. The doctor told me that I would literally die if I took a diuretic because my blood pressure is already too low to begin with and if I took it, it would drop even lower, which is something that I cannot afford to happen whatsoever. Even the slightest drop in blood pressure can be detrimental to my health because of how low it is already.
Speaking of blood pressure being so low…I have been having the worst problem with breaking into cold sweats right before I have to go to the bathroom. I get extremely hot… almost like a hot flash except I can’t sweat really because of the autonomic dysfunction. I get so hot that I even get a prickly feeling all over my body. Yet, once I do go to the bathroom, I instantly turn in the reverse feeling and begin to freeze. I get so cold that I have to put a sweatshirt on. So I actually go to wanting to tear off all my clothes right before I go to the bathroom to wanting to be completely covered afterwards in a matter of just going to the bathroom. It happens right away.
The reason that this happens is because my blood pressure is so very low and I am so hypersensitive with the autonomic dysfunction that the slightest amount of stress on my body causes it to really go out of whack and sets off the sympathetic nervous system to produce the hot flashes. My blood pressure going up from having to go to the bathroom is so much because my blood pressure is so very low to begin with that it causes these feelings. Yet, after I go to the bathroom, my blood pressure of course drops and that is why I freeze so much. That is also why I get so dizzy and sometimes can “black out.”
In addition, as I can’t regulate temperature because of the dysautonomia/autonomic dysfunction, it can be extremely deadly to me because I can have a reaction to the heat that can range anywhere from mild/uncomfortable to deadly. Some individuals go into cardiac arrest at temperatures ranging from 72º up. Changing from temperature to temperature can also trigger dysfunctional autonomic responses, as the dysfunctional autonomic nervous system overloads or just fails to accommodate. That is why I need the temperature to be completely regulated at about 72 degrees and we cannot have the windows open. We have to make sure that the temperature is maintained at that specific temperature because anything that deviates can be detrimental to my health.
Finally, the doctor stated that he could tell how ‘dehydrated’ I am. No surprise there because I am so very thirsty. However, I can’t drink anymore than I am already drinking because my body only allows me to drink a certain amount and even if I drink an ounce more than it is “allowing” me to drink, it will instantly set off the autonomic dysfunction and it will be a disaster. So I really don’t know what to do. Sometimes I think that the autonomic dysfunction is the worst part of this whole entire illness because it is so bothersome. It really drives me crazy because I can’t tolerate the symptoms that it causes.
I only wish that this autonomic dysfunction could be cured. Autonomic dysfunction can kill. Everything that I do affects the autonomic dysfunction and causes severe problems. Yet, if I went to Mexico and had the Ketamine Coma, I would be able to have that happen and I will no longer have to worry about drinking that ounce to much or breaking into hot flashes and feeling “prickly” before I go to the bathroom or everything else that occurs when the autonomic dysfunction takes off.
Not only would I not have to worry about those unpleasant and uncomfortable feelings, but also it would also essentially SAVE my life because this autonomic dysfunction can and will eventually kill me. This autonomic dysfunction is actually wreaking havoc throughout my entire body (including organs and everything else).
So it has been a very LONG day today. As you can see there is a lot going on and we are really hoping to find a way to get to Mexico and California so that I can get the HELP that I desperately need. We are supposed to be leaving Sunday for California, but of course it is dependent on the finances.
No matter what…at least I will get to spend Sunday with my dad. I am so very glad that I will get to be able to spend another Father’s Day with him because he means the world to me. I am so thankful and grateful that he is my dad. If he wasn’t here, I know I definitely would never have made it this far. He is not only my dad, but he is my best friend and knight and shining armor. There is nothing that he wouldn’t do for me and that is why it hurts him so much that he can’t get me the help that I need or take the disease away from me and protect me from all this pain and suffering.
My dad never treats himself to anything and never buys himself anything. So for Father’s Day even though money is extremely tight, I saved up enough money to buy him a nice shirt. I figured that not only could he use it because he doesn’t buy himself any clothes whatsoever, but he also can use it because he needs clothes when we go away. My dad will literally wear the same clothes over and over again, and he will even take a black sharpie and color in missing black patches or faded spots on his black pants if it means him saving money. My dad refuses to spend a cent on himself because he knows how much we need the money for other purposes.
Well… I am going to get going. Please continue to pray for me and please spread the word the help is desperately needed. The treatment cost is at least $100,000, which is why are fund raising. We have been researching whatever options we could find including trials, but as of now my best “cure” is in Mexico and I need to get to California for treatment as well. We are praying for a miracle and hope I am going to be able to get to Mexico soon so that I can get my life back and live the life that I was robbed of. After all, I was destined to be somebody great and I have the great ambition to become a doctor so that I can help others.
Not just me, but my entire family, appreciate any and all help. Thank you so much!
P.S. 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.