What a week I have had. Sorry I haven’t been in contact lately, but things have been awfully bad. It has been a really difficult week (I am not going to lie), but knowing that I have the support of others has really made a huge difference. It is very difficult going through what I am going through. I want to give up many times, as I am suffering so much and I feel sometimes like I am in this battle alone.
Unfortunately it hasn’t been a good week. I have been rapidly deteriorating and things are really getting bad. I would have written about it and alerted everyone, but to tell you the truth… it is getting to the point where even writing my blogs is getting to be impossible because it is really hard to do anything with this illness. I am awaiting to hear what the next step is going to be, as the tightrope that I am walking is finally ready to snap and I just hope I get off of it or something is done before it happens. I desperately need the surgery for the osteonecrosis and such, but the truth is that they are having difficulty because I am not covered on my insurance plan. We have no idea how we are going to pay for this, but this is something that has to be done and done quickly.
In addition, I desperately need the transplant more than ever. I have even spoken to my GI doctor tonight and he is also very scared and not liking what is going on. He said how I am really in need of this transplant more than ever. My GI tract is completely paralyzed and the only real help that can be done will be the transplant. But like I said before… since we had to wait so long because of insufficient funds, it turns out that I am way too sick now to get the transplant and I desperately need something to make me stronger immediately in order to provide a window that will enable us to get the transplant. This is also much easier said than done because the only thing that can really be done is going to the hospital and getting TPN and other tubes, which my body keeps rejecting and such. They want me to go to Mayo and to Stanford, but unfortunately, I will not be covered on my insurance either. So…. I really need to find a way of paying for the hospitals because the hospitals that I need to go to don’t take my insurance and it is really impossible to go to another hospital that could possibly take my insurance because they won’t treat me due to my complicated medical condition and what I need (i.e. the ketamine and everything else). So I am really in the middle of a tough situation and my time is really running out in the meantime.
Yet, in the meantime, I am really running out of time fast. My body is shutting down fast… faster than ever. I am aspirating worse than ever and I can barely lie down because I am drowning in my fluids. It is literally impossible to eat or drink anything because the slightest amount makes the aspiration worse. Every time I breathe, you can hear gurgling and such. It is so scary and I am so uncomfortable. To make it even worse, I am so very thirsty and despite how much I am drinking, nothing is quenching my thirst. They think that I am so thirsty because I am not absorbing anything because of my inability of digestive system to absorb anything and for my GI system to even work. In fact, even if I take my medications, I can literally take pills in the morning and when I vomit at night over 12 hours later, I can literally throw the pills up and they will still be “whole” and now absorbed. So I am not even absorbing the pills either. But since I am so thirsty, nothing I am taking to drink is quenching it… even if I take Gatorade. To make matters worse, the more that I drink, the worse the aspirations are getting and the more difficult it is to breathe. By the end of the day, I literally can’t breathe at all. I have machines at home to try to ‘help,’ but they really don’t help. I have to constantly have someone and have myself as well try to clear the secretions, but it is literally impossible.
There really isn’t much that the doctors can do and that is one I the reasons why they said that they want me to stop eating and drinking immediately. However, even though they no longer want me eating or drinking because they believe it is contributing to making everything worse, I really don’t have any choice because you have to eat and drink in order to live…. even if I am throwing it up and having difficulty with it. That is only more reason why I need to get to a hospital immediately such as the Mayo clinic or Stanford because I desperately need to get the tubes and TPN so that I won’t have to bother eating or drinking anymore. But like I said before… it all comes down to the issue with money and unfortunately we don’t have the money to have the operations and the medical treatment to have the tubes placed in me or to seek treatment at the necessary hospitals, so it kinda puts a stop to that and makes me end up suffering and hoping and praying that I will be ok.
My body is literally fermenting and rotting away. Since nothing is passing through my body because my GI tract is paralyzed, everything that I have in my body is just sitting there. As a result, the doctors are worried that I am becoming sicker and such because of all the toxins of the food and medications that are just sitting in my system since I can’t get rid of them. In fact, I have been producing a lot of mucous and it smells like “rotten eggs” (not to sound disgusting). Yet, when I told the doctors about this, they said that the reason that it smells so foul is because I am literally ‘rotting’ and ‘fermenting’ inside. It is definitely not healthy to not be able to pass the medications and food and such that you are taking in. As a result, all the toxins of them are just continuing to build up.
In addition, my bloods are really taking a downfall as well. My bloods have not been good for the longest time, but they are worse than ever. The other day, the hospital called my doctor and alerted him that my values were extremely low. They said that I was in extreme “critical” condition and needed urgent attention. My values are extremely low that any little thing can put me into cardiac arrest and easily put me into an arrhythmia. In addition, besides my bloods getting worse that can easily put me at risk for cardiac arrest, I am also having difficulty clotting. We don’t know why but my clotting factors keep becoming abnormal. They are just getting worse and worse and we don’t know why. Whereas the upper limits should never exceed about 36, mine is reading over 40, which is extremely dangerous. It is really dangerous because when I bleed, I am having a difficult time clotting. In addition, it is really a big issue because since I need so many treatments and procedures, it is something that will pose a great problem when the doctors do anything because I can easily ‘bleed out.’ I really need help and help now because of how bad things are.
Yet, there really isn’t any hospitals in the local area that can handle me because of my condition and therefore, I really would need to go to hospitals such as the Mayo Clinic and Stanford, which are not located around me in order to get help. So since they are not really located near me and they will also cost me additional money because of the traveling expenses and how they are not totally covered on my insurance plan, we really cannot afford to seek treatment there. It is a shame that I need such expensive treatment, but I can’t get it because we cannot afford it on our own. It is a shame that when it comes down to it, but life comes down to money and it is the green dollar that is more important than my actual life. You know? So I am really hoping that nothing is going to happen and that my bloods will possibly improve. Even though I was told that I was supposed to go immediately into the hospital because my values were extremely low, we decided to try to hold off and do a ‘wait and see’ attitude to see possibly if it would go up if I maybe increased my heart meds and took more and such. Even though I can’t really absorb because of my impaired GI system and how my GI system is totally paralyzed, we thought it was worth a shot. I know deep down we are probably fighting a lost cause, but we really have no other choice especially since we really can’t afford going to the hospitals and receiving the treatment that I really desperately need.
Unfortunately if my bloods get any lower, we are not going to have a choice about whether I will be able to remain out of the hospital. They are already way too low and honestly I should definitely be in the hospital with these values. I am like playing “Russian roulette” with my life, but I really don’t have a choice when it comes down to it because when you don’t have money to pay for things… it really makes a big difference. I have been fortunate for my parents to be able to afford what they have been able to for this long. Yet, the well had to run ‘dry’ sooner or later and unfortunately it I had to happen now. My parents can no longer afford the very expensive treatments that I require, as I need very expensive procedures, medications, and appointments with doctors, traveling expenses, etc. They walk about the house and feel so bad because they want to help me so badly and yet their hands are tied. They are literally watching me deteriorate and die and there is nothing that they can do as much as they are trying to do anything and everything to get me the needed treatment that I need. Even though we have made so many cuts in our lives and even in the treatments that I am receiving, it just isn’t enough. I drastically need help from others if I am going to survive. I only wish others would see it that way.
I have really been hoping that possibly I would be able to raise some funds so that I can receive treatment. I am extremely thankful for the funds that I have already raised, but they are definitely not enough. Even though I have raised this much money already, it is literally like raising nothing because it has taken me this long in duration (over years) to do so and therefore, the amount that we had to pay during that time and continue to have to pay… far exceeds that. Therefore, even though it appears that I might have raised a lot by the actual number on the surface, it really is “peanuts” because the expenses that I had to already pay and still have to pay is far to much. If I would have raised that much money and it was only within a few weeks or even a few months, it would have been great. But since it has stretched out to being over a years, it really hasn’t helped much because the amount of money we have had to pay during this time has far outweighed that amount by far.
As such, I really have tried everything that I could imagine that could help me. I have posted blogs, wrote to the media, made posters, posted on Facebook, pleaded with people on Facebook, etc. but nothing really has happened. It is really sad that despite all this that I didn’t really get the results that I needed. I turn on the TV and such and I see other people receiving aid in the media. Yet… it hurts so much that since I don’t know anyone that really has ‘connections,’ I can’t get the same help. It really stinks that it is not “what” you know in this world but “whom” you know in this world,” and unfortunately, we don’t know anyone. I have posted and pleaded for help on Facebook so much and I hate to be known as a beggar. Yet, I really don’t have a choice because my life depends on this. It is a shame that even with all this pleading that I really haven’t brought in a single donation. It doesn’t take much for someone to donate a single dollar, as if each person even donated a dollar… it would definitely add up. People also don’t realize that even each dollar would make the biggest difference, as it is one less dollar that we have to come up with.
I also can’t believe how people can’t even take the time to spread the word of my link. Very few people have taken the time to “share” my site and it is literally just done by a click of a button and is ‘free.’ If I can’t get the media’s attention, I really depend on everyone else to hopefully spread the word that I need “help” because that is the only way others are going to be made aware of the fact that I am desperately in need of this lifesaving treatment. I am only one person and only can reach out to so many people (because I only know so many people). I really need as many people to reach out to others as possible. However, even though it will only take a second to do this and is free, I am really surprised to learn that not many people can do this.
It really hurts me because I know how much my life is at stake and how much I need this lifesaving treatment. I know how much I need others to help me in order to receive this treatment. I really don’t mean to be a complainer or be unappreciative or to bash the people that have been very nice and willing to help me out, but I am just upset with how certain things are just so easy to do and people just can’t be bothered. Sometimes I wonder what it would be like if the shoe was on the other foot. You know? I hope you can understand. If you are a person that has given me money, supported me, spread word of my site, etc. please know I am not upset with you and that I am extremely appreciative of what you have done. It is just that I am at my wits end and I am so upset with how people can just disregard someone’s pleas to get help… whether it is by donating the smallest amount or even just by spreading word that help is needed (something that doesn’t cost a cent).
Like I said before, I desperately need help and my bloods have really fallen. I am scheduled to go in the morning for a retake of my bloods and to see what they are. I only fear that they will be worse because if that is the case, I will have no other choice but to go straight to the hospital. Like I said before… I am really supposed to be in the hospital now, but we are trying and hoping that we will be able to do this “out” of the hospital because of the lack of funds. Yet, if they drop any lower… it is going to be impossible. They are already too dangerously low. I am even lucky to be alive with the way they are right now.
So I have an appointment first thing in the morning for bloods. The doctor is actually meeting us at 7 AM because I am supposed to be having a ketamine coma afterwards. I have to be at the hospital to have the ketamine by 8:45, so I am very lucky to have a doctor to meet me at the office at 7 AM. I am really excited to be able to have the ketamine tomorrow because it will give me a day of having a vacation away from this horrible disease and life. Things are getting so bad that if I can honestly live in a ketamine coma every minute of the day, I probably would do so. The pain is out of this world and I can’t take it anymore. I am literally crawling the walls and it is literally impossible to hold out any longer. I am collapsing everywhere and the slightest innocuous touch is so very painful. I just can’t do it anymore.
So thankfully I have the ketamine coma tomorrow, which will hopefully give me a day’s vacation from this disease. I never get a second away from all this pain and misery unless I am under the ketamine. But unfortunately, as soon as I come out of the ketamine, all the good stuff goes away and it is back to my miserable life. It is back from being in “heaven” to living in “hell.” If only I can receive the dose of ketamine that I really need. I desperately need a dose that is far too much than is FDA approved and I really need to go out-of-the-country to get it. Only then do I have the chance of this disease actually to completely disappear. But unfortunately that would cost an enormous amount of money, which is something that I don’t have. So, right now it just remains a dream that I hope will come true before time runs out. In the meantime, I just have these other doses of ketamine that I know won’t be long-lasting, but at the very least it gives me a day’s worth of rest from this disease (and when you are suffering the way I am… you would take any relief you can get) and hopefully it will stop or at least slow down the disease progression. I am seriously hoping that I can at least possibly go to another doctor to receive a higher dose of ketamine within the country so that it would be more helpful than the dose I am getting now, but it will also be out-of-pocket and something that we can’t afford as of now. But at least it will still be cheaper than the one that is “out-of-the-country” and therefore, if I can’t get the potential cure ketamine amount that is out of the country, I am at least hoping to get the increased amount that is with another doctor within the states. But like I said before… my treatment rests in the hands on others and I hope that I am able to get it before my time runs out.
So tomorrow will be a very interesting day. We will see how it will go because not only do I have the ketamine coma tomorrow (which is great thing), but then on the other side of the coin… I have an appointment with the doctor to get my bloods taken again because my bloods are so very low. I wonder when I come out of the ketamine coma where I will be headed. I know I will definitely be headed home (as long as everything goes ok with the coma/infusion), but the question will be will be if I can remain at home. If my bloods happen to come back that they have went down even more, I probably will be vacationing this weekend in the hospital (my doctor already got the call that I am in the real “critical” values and I am already supposed to be in the hospital but hoping we can delay it). I can’t stay in the hospital that I am already getting the ketamine in because they won’t be able to help me. Instead, we will probably be off to Hopkins, mayo, or Stanford. So I will keep you posted. Hopefully it won’t come down to that.
I also need my flu shot. I desperately need the shot because if I were to get the flu, I would never survive it. The doctors are already saying how even the simplest cold would kill me. Yet, I have been too ill lately to get the flu vaccine and since I have been sicker than usual, the doctor has been hesitant to give it to me. Even though the flu vaccine is supposed to be ‘harmless,’ you aren’t supposed to get it if you are feeling ill and especially with my illness and such, the doctor doesn’t want to take a chance with me. I have no reserves and all vaccines and injections are hard enough on my body as it is. They want to make sure that I am at full strength (or as much strength as possible) before they give me something like a vaccine because you still need to kind of ‘fight’ this because you are given a passive bit of the flu virus. I really can’t afford to get the flu and they really didn’t want me to have any complications from even the vaccine. However, since we have waited to get it, the doctor has ran out of injections and he is waiting for the next batch. My dad is starting to freak out because he is afraid that I won’t get the vaccine in time because between how my body is not ‘allowing’ me to get the vaccine and how the vaccine is not available, he is afraid that I am going to get the flu because it takes time to even become ‘vaccinated’ and ‘immune’ to the flu once you are given the injection.
Finally, I am awaiting to hear when I am going for the emergency surgery for the osteonecrosis. Like I have told you in the past, I need to have emergency surgery for the osteonecrosis and because of the issues with the bones and my teeth rotting and having all the nerves of the teeth exposed as a result of everything. Even though I won’t have to travel out of the state for this surgery, it is still not covered by the insurance, and therefore, I will of course have to find a way of paying for this as well. It is amazing how insurance is great when you don’t really need to have to use it. I pay so much for insurance too and as much as it does cover… it really doesn’t cover much. Yet, I can’t imagine what the cost would be if I didn’t have insurance whatsoever because it would be soooooo much worse. So I guess I should be thankful for the little things. I just think for the cost that I am paying for this insurance plan, I should be given a lot more.
Anyway, I need this surgery more than ever and fast. I am in so much pain because of all that is happening because of this. However, it is a complicated surgery for me… much more complicated for me than for the regular patient because besides the usual risks for surgery, I am in extremely critical condition and extremely hypersensitive. I also suffer from autonomic dysfunction so the slightest thing can throw my entire system into haywire. The doctors are busy planning everything out because they don’t want to go in blinded. They want to know everything about my condition prior because they said that the worst thing that can happen is for something else to go wrong with everything else that is happening. So…. they have been having meetings and trying to get the entire team and such on the same page and such. I should have a set day for the surgery by Monday. Of course I will let you know when I know for sure.
I also went for hyperbaric yesterday. Even though we can’t afford the treatments, the place that we are having it is willing to just take what they can get under “no fault” and not charge us anything further. Thank goodness for that because I desperately need those treatments. I have been having a hard time with sores not clotting and sores not healing, especially on my worse leg. It is really dangerous for me to get any sores and especially on my left leg because my circulation is so bad and such that it is very possible for it to get infected or something and have to get amputated. The doctors are always afraid of something happening especially since there is such a lack of blood flow in the left leg. My disease causes vasomotor changes and restriction of blood flow and in combination to these sores… it is not a good sign. As it is… the doctors don’t know if I will have to have an amputation after all this because my limbs and other parts of the body actually go ‘black’ because of my disease. When they go ‘black’ it means that tissues are being deprived of oxygen and as a result, they are dying. The doctors are even saying that even if I am ‘cured,’ I still might have to have an amputation because the tissues have been deprived of oxygen for so long already that it probably did a lot of damage already. But I am hoping that never has to happen because I never want to lose my legs.
But like I said thank goodness I am now able to go for the hyperbaric again. Especially with the hard time of me clotting and such, it is extremely helpful. It is extremely helpful too because of how not all parts of my body are able to get blood flow, as I told you that I keep discoloring. At least when I am in the hyperbaric, I am getting oxygen to every part and hopefully enabling the tissues to survive. In addition, even though it isn’t proven that hyperbaric is a proven treatment, I am hoping that it will also help me with my overall disease and GI system because I am suffering so much already and need so much treatment that I can’t get because we can’t afford it. I am hoping that this hyperbaric will really make a difference and hopefully help especially since I can’t get the treatment that I really need. After all, hyperbaric has been shown to stimulate the release of substances called growth factors and stem cells, which promote healing among other things. Hopefully it can rejuvenate my GI system and nervous system and help me!
Well… I guess that appears to be it. I am going to get going because the pain is too much to bear right now. The pain lately has been so intense and too much to bare that I haven’t been even able to do anything. I have also been so weak that I have been able to do anything either. As a result, I haven’t even been able to watch TV or anything. Thank goodness for DVR because it is filled with like almost 2 weeks of programs because I have been too sick to watch anything.
Wanna hear something funny? I bought my dog his own bra. He loves running around with my bra so I figured that I would do the next best thing since he isn’t allowed to have mine. I figured I would go out and buy him his own. So I found a bra that squeaked (because he loves squeaky toys) and he absolutely LOVED it. He wouldn’t put it down. However, he loved it so much that he ended up ripping it like in 2 hours. O well… I guess it was good while it lasted.
Well… thanks again for all your support and encouragement. I can’t tell you how much this all has meant to me. Please continue to follow my story at http://www.FallonMirsky.wordpress.com and at gofundme.com/FallonMirsky. I really can’t thank you for all your support. I definitely wouldn’t be able to be where I am today without the support of others. Until next time!