FALLON MIRSKY

Please help SAVE MY LIFE!

October 26, 2013

boo2_0Hi-

Well… it has only been 24 hours since I last wrote, but so much has happened.  I really wanted to write to you and let you know now because I don’t know what the future entails and I didn’t want to have it snowball until it is way too much to write and for you to read.  Plus… since I just had my ketamine coma/infusion today, I am more than wide-awake now because I am now suffering from the after-effects of the procedure.  I am also very nervous about what has occurred today and I thought maybe it will sought a few things out by putting it on paper (or computer… however you want to look at it).

Anyway… ever since I had the ketamine (even though I was in heaven while I was under), I am having severe problems now that it is over with. Not only am I having a reaction to the ketamine, but also my body is paying me back for ‘messing’ around with it.  That is the thing with this illness… it hates to be ‘messed’ around with.  If you start with it… you better be prepared to suffer afterwards.  My autonomic dysfunction really starts up afterwards and my body always gets so much worse afterwards until it goes back to its regular ‘badness.’

Besides my usual pains that I always get, I am also getting a few more things.  I don’t know why but my eye keeps twitching and pulsating. I had some complications when I had the ketamine today that resulted in me having to get additional medication (which I will explain later on), so I don’t know if possibly it had to do with that as well.  But all I know is that it is really bothering me because my left eye keeps pulsating and twitching.   I also am having severe pain in my neck and spine. I always get this pain in my spine and stiff neck afterwards and we never know why.  However, if I press on my spine that is at the very utmost top (right in the base of the head), it makes it feel kinda better.  I never had that sensation before.  I tried contacting the doctor tonight, but I have not heard from him as of yet.  I contacted him after 10, so he probably was sleeping because he usually is so good at getting back to me.  So I guess he probably will call me in the morning or something.

But people always wonder why I go through with the comas and such if my body does this…. I go through with it because anything is worth getting a relief from the pain that I suffer from.  So to escape my hell for the day…. it is worth it.  I may curse myself afterwards for going through with it, but at least for one day… I get some vacation. You know?  So now I am in pain times 100 and I am also suffering from the side effects of the ketamine as well.  I am also having twitch.

Well… I guess I should start at the very beginning.  Before I went for the ketamine coma/infusion, I had to go to the internist today for my bloods to be drawn because like I explained yesterday, my bloods are not doing too well.  I got back my  results the other day and it stated that I was in very ‘critical’ condition and honestly should be in the hospital.  It stated that I was at very high risk of having an arrhythmia and cardiac arrest.  It was also seen that the values for my clotting was too high, which meant that I was having a great deal of trouble clotting.  However, I really didn’t have the funds to go to the hospital because the hospital that I really needed to go to is not local, as I would have to go to a hospital like at Stanford in California, Mayo Clinic in Minnesota, or possibly Hopkins in Maryland.  I have a very complicated condition that many doctors are not familiar and not able to able to handle.  I need to go to hospitals that are best able to handle my complicated condition, and even these hospitals aren’t too aware are capable of handling me.  However, they do have more of the instruments necessary to helping me such as the access to doctors that are more knowledgeable about my condition, ketamine, and special procedures such as the multivisceral transplant (stomach, small and large intestine, pancreas, and liver) that I am hoping to receive as soon as I am able to.

I really need to go to a hospital that isn’t around here in New York because they can’t really offer me anything in a hospital located around here I really need to travel to a hospital like Stanford, Mayo, or Hopkins.  I desperately need TPN or something.  They might be able to do it in New York if I wasn’t too complicated, but due to all my compilations and all my needs, they can’t do it.  I need ketamine because of the intense pain that II am in and how it will hopefully stop the progression of the illness (this procedure can easily exacerbate my illness entirely and spread it).

I also need to have my bloods raised, so they can give me IV with the appropriate medications as well.  I can’t really absorb medications or food anymore because my GI tract is basically gone… so at least by getting them though IV… they would be able to help to a point.  You know?  They also would hopefully be able to keep me hydrated because I am so dehydrated.  I can’t absorb and even though I keep drinking… It just isn’t working.  I drink and drink, but I can’t quench my thirst despite drinking Gatorade or anything on that sought.  I am just so thirsty and to make matters worse… the more that I drink… the worse the aspirations get.  So… it is like I am drowning in my own fluids as well and only compounding the problems.  the doctors want me to officially never eat or drink again, but of course that can only happen if I get the tubes and central lines and TPN.  But since I can’t get that and you need food to survive, I have no other choice but to chance my odds and keep eating despite the aspirating and not absorbing. Hopefully even though it is causing all this bad stuff… it is doing something ‘good.’  You know?

Plus… since I can’t absorb I really are not absorbing all my meds really. By being in the hospital, they might be better able to manage my pain because I will be able to get all IV stuff and everything.  However… it isn’t so easy because I won’t be in my own environment, which really can hurt me.  I am really hypersensitive and the slightest deviation can hurt me.  So since everything can’t really be technically catered to me because of other patients and how they have needs too such as the exact temperature and such… it can hurt me too.  Also… nurses and doctors aren’t so familiar with my illness and such so they can’t really treat me like a typical patient.  They don’t always realize that and therefore the slightest thing that they do that they think is OK because it is generally OK for a typical patient… it can really hurt me.  That is why when I am in the hospital, my dad usually stands guard and watches and tells the nurses what they can and can’t do.  He usually posts on the wall that they can’t touch me really …. especially my legs… because the slightest touch (even the most innocuous touch) will send me up the wall screaming. They don’t realize that and they don’t realize that even the gentlest breeze or even putting the covers on me kills me.  They have to be careful about everything because even just bumping into me or touching me with the stethoscope or putting a syringe or gauze pad on me will cause problems.

Plus… the hospital is known for infections and with me not having any reserves… it is a haven for me to get sicker.  The doctors are so afraid for me to catch anything because they said that if I catch anything… even the simplest cold… I would never be able to fight it.  So they are really afraid if I would have to go to the hospital because there are so many infections looming there and a perfect place for me to get something.  You know?  Plus… with me… I am so hypersensitive and everything is magnified… so the simplest cold is like getting the flu to me.  So you can just imagine if I were to get something like the flu… I would be dead in no time.?

So even though it was best if I went to the hospital, we really couldn’t afford it because besides the cost of the actual traveling, the cost of the treatment too would also be too great. Unfortunately my medical treatment is so expensive that we cannot afford it by ourselves.  Even when things are covered by our health insurance plan, we still have to pay a copayment and it clearly adds up to be astronomical quickly especially if I was to be hospitalized.  Just being hospitalized will cost me a copayment of $150 per day, $100 per blood test or procedure or radiological test, etc.… and that is if they take my insurance at all.  I can never catch a break, as not all my treatments, medications, doctors, etc. are even covered by the insurance and therefore, it isn’t just the ‘copayments’ that I have to worry about.   So we decided to see if we could manage my condition a few more days at home by raising my meds and see if possibly we could avoid the hospital.

However, we knew that we were really playing with fire and taking a very BIG risk.  But honestly… we really didn’t have a choice because unfortunately we were quite strapped for funds.  It is a shame how this world is so dependent on the green paper.  I sometimes wonder what it would be like if money didn’t exist.  Anyway… I knew that if my bloods dropped today further, I would pretty much have no choice but to go to the hospital tonight because there was no possible way the bloods could drop any more.

im-sad-smileyWhen I went to the doctor though today to get the bloods drawn, I found out some information that I didn’t know.  It appears that not only am I having trouble clotting, which is extremely dangerous, but also it now appears that I am showing the beginning signs of liver failure.  I can’t believe it.  I can never catch a break.  Now another thing is failing me… my liver!!

I am really upset about my liver failing me and I am really scared.  I really don’t know what is going to happen to me.  I really wonder how much more my body can take.  My BUN level is also extremely elevated.  The BUN measures the amount of nitrogen in your blood that comes from the waste product urea.  Urea is made in the liver and then passed out of the body in the urine. I have been showing symptoms for awhile such as the edema and such, but we just never picked up on it.

I am really worried about my liver, but maybe in the long run that this liver failure isn’t such a ‘bad’ thing.  I know it sounds weird to be saying that, but let me explain why I am saying this.  The multivisceral transplant is extremely rare and risky.  They say that the survival rate of the transplant isn’t the greatest  and to make it the 5 year mark is really amazing.  They say that this transplant is like the most dangerous transplant that you can ever have.  However, they found that people did much better and lived longer if they did get the liver when they got the other organs during the transplant.  Yet, before I got this news today, I was not able to get a liver when I was going to have the transplant because there wasn’t anything technically wrong with my liver and they aren’t just going to ‘give’ a liver to someone even though a person would do better with a transplant if they got that organ along with all the other organs.  So… it might not be such a bad thing now that my liver is giving me problems because at least now I will be able to get a new liver along with my transplant.  This will greatly help me in the transplant.  So, I guess things have a way of working out, right?

Besides finding out about the liver, we also spoke about the upcoming surgery for the osteonecrosis as they had a meeting about me.  I was told how they want to perform the surgery as soon as possible, but they need to get everything organized and set up so that no surprises are met.  They said that the last thing that they need is for something to ‘pop’ up especially when they are dealing with enough complications already.   So they want me to go see my cardiologist and have an echo, as well as my pulmonary doctor as soon as possible because they really have to get everything noted.  They also want to see exactly what to do about the aspirations because it is a huge problem in general and to have that as an issue especially during surgery… it really is a big deal.  So I am hopefully going to see the cardiologist on Friday and I am supposed to hear from the surgeon on Monday about the exact day that the surgery will take place.

Before I left the doctor’s office so that I could go for the ketamine, I asked if I could have the flu shot because it is almost flu season and if I were to get the flu, it would certainly kill me.  I can’t afford to catch anything because the simplest thing will really kill me.

I then proceeded to go for ketamine.  What a time we had there.  Usually while I am having the ketamine coma/infusion, I usually have an additional procedure where I get injections into knees because I am in extreme pain in the knees especially every time I bend or extend my knees.  I also keep getting bursitis there and I have severe arthritis too.  My disease really has taken a toll on them.  Anyway… they usually do some injections into my joints of the knee while I am under the ketamine because I can’t tolerate the injections at another time without the ketamine.

It turns out that the doctor had to switch the injections to something else today because the current injections that I was getting were giving me an allergy in my knees.  I was getting all these additional sores on my knees where he was giving me the injections and when I showed him, he said right away that it was due to the injections.  So… he had to change the injections that he was giving me and as a result, I ended up having additional problems.

I didn’t tolerate the new medication too well and therefore, I was in a huge amount of pain when I woke up.  I was screaming so much and I had pain all throughout my legs and up to my butt.  The doctor immediately came in and tried giving me something through the IV, but it wasn’t helping.  I was just in so much pain.

In addition, when I had the ketamine today, all my lines filled up with blood and they don’t know why.  They thought maybe it had to do with the more intense pain that I was in because of the injections and such and it was causing the spikes of my bloods pressure, but they don’t know for sure.  They think it possibly had to do with my autonomic dysfunction as well.  They also don’t know if it has anything to do with the fact that I have my clotting off and my blood work shows that it is difficult for me to clot. It was definitely something that happened that never happened before.

Anyway…want to hear something hilarious?  I can’t believe that my dad actually did something like this.  My dad needed to get into my phone and my phone can either be unlocked by putting in the code or my fingerprint.  The code is the easiest code to know… but of course if you don’t know it… you are out of luck.  I am surprised after all these years living with me and such, my dad doesn’t know it because I basically use the same code for everything and I use the same principal for choosing my code as he does for the code he chooses for his stuff. You know?  Like father, like daughter, right?  Anyway… when you can’t talk… he is kinda out of luck, right?  Well… I was under the ketamine coma and of course he was out of luck of getting into my phone because I couldn’t tell him anything.  So you know what he did?  He literally came over to my hand… took my finger… put it over the scanner… and unlocked it that way!! Who would have ever thought he would have done something like that EVER?  Who says my dad isn’t a good problem solver and thinker?  LOL.  Only my dad would have done something like that.  I can’t believe the actually did that to be honest with you.  You would think that fingerprints are supposed to enhance the security.  I guess they never thought about what to do if a person is unconscious or something and how easy it would be for someone to then unlock the phone.

Halloween is around the corner, which used to be my favorite holiday.  I know I am getting ‘sick’ because I used to go all out on this holiday and couldn’t wait for it to come.  I used to love decorating the house, which was something that my brother and I did together, and the house came out looking totally awesome. I must say that we had one of the nicest and coolest looking houses.  Not only was the house so decorated, but also we would go and look for the biggest pumpkins and even bought a really huge pumpkin that would weigh over 50 pounds to put on the outside.  Of course that huge pumpkin wouldn’t be carved but would remain outside until after thanksgiving, but that had to stop after awhile because it got too expensive.  After all, those big pumpkins are expensive.

images-1I also loved cutting up the pumpkins to get the seeds out, carving it to make the coolest jack O’lantern, giving out the candy to the kids, etc.  But now I couldn’t really care less.  I couldn’t really care if the holiday came or not.  I haven’t decorated my house, cut open the pumpkins, and I honestly wish that I can lock the door and have no kids ring my bell.  I really just can’t be bothered because I am so uncomfortable and in pain.  I can’t keep getting up and down and be bothered by kids to answer the door.  Even decorating the house just takes too much out of me.  I really am not feeling well and all I can really do is stay on the couch.  I am just so weak.  I will probably end up cutting open the pumpkins tomorrow morning because it is a ‘tradition’ and because I have to get the seeds out for eating.  After all, my family really looks forward to that and you can only have them once a year.  Nothing tastes the same as fresh seeds from the pumpkin. It is like when you go apple picking… nothing tastes the same as a fresh apple from the tree; you can never match the apple in a store even though it says ‘from the tree.’  My family will literally fight over the seeds and try to steal each others because they love it so much.  They will finish it so quickly, so I probably will get 2-3 pumpkins.  Hopefully they will have a lot of seeds.

Well… I guess that takes care of everything.  I think I am going to get going because I really am not feeling well.  I just wanted to write and let you know what is going on.  Hope you have a great Halloween if I don’t talk to you before.  Thanks again for all your support and encouragement.  I would never be where I am today without it.

Until Next Time,

Fallon

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October 25, 2013

1239068_10100911206232390_248991222_oHi-

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.

1150507_10100873419951400_307099440_oI 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.

1397316_10100935294509290_88869118_oWanna 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!

Love always,

Fallon

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October 17, 2013

615295_10100921868230660_1015638793_o-1Hi-

Just wanted to update you on the latest because got some really bad news yesterday.  I also wanted to write because I wanted to let you know what is happening because it seems like things are going downhill so fast and I never know from one day to the next where I will be or what is going to happen. But even though things are getting really bad, I am still trying to hang in there as much as I can. Maybe it is getting so bad and scary because it is the month of Halloween and it is supposed to be a very spooktacular month!  Please bear with me… I gotta try to keep my sanity some way or another and try to make some ‘light’ of things.  I hope you can understand where I am coming from.

Boy did I have a day yesterday.  I don’t think that I received actually any good news whatsoever.  I am really deteriorating and I really need help.  However, the help that I need is way out of my hands because I need treatment and help that I can’t afford on my own.  That is why I am desperately pleading for others to please help me whether it is by donating or simply by even spreading the word of my donation sites.  The more people that are aware of my donation site, the more chances that I will be able to receive the necessary funds that I need in order to receive the very lifesaving treatment that I need to live.  I fear that if I don’t receive this treatment soon, I am not going to make it much longer.

I really need so much help.  My health even though it has been going downhill for a while is now plummeting faster than ever.  I think the parachute that was kinda ‘saving’ me for a bit has finally broke and I am freefalling down now without any safety equipment.  I am really going to slam into disaster soon at the pace I am going. I desperately need to get to Mayo Clinic and Stanford for my GI problems and have immediate surgery here for my severe osteonecrosis.  I also need have that very intensive ketamine coma that would probably benefit me most of all that takes place out-of-the country.  Let me explain what has been happening.

imagesI have been having really bad unexplained fevers.  Not only am I spiking high fevers between 102-103, but also they are even worse for me because my body temperature is only usually about 95 degrees.  So for me to go up that high, it is way out of the norm and really really really too high for me.  In addition, everything is magnified for me because of my illness.  Therefore, a simple cold or fever is like having the worst possible fever and the severe flu for a normal person.  I also don’t have an immune system and I don’t have any ‘reserves’ to fight anything.  The doctors were always afraid and are afraid that I am going to catch something like an infection or something along those lines because I would never be able to fight it.  My body is just too weak and does not have the endurance, strength, or capacity to fight anything anymore. The doctors have proclaimed how I am on the ‘end of the rope’ and I really need something to be done fast because I can’t go on much longer.

Well, in addition to this unexplained fever, I have also been having trouble breathing.  I am gurgling like crazy and you can hear wheezing whenever I breathe.  It is so much worse when I lay down, which really makes it more worrisome because they say that when it worsens when you lay down, it could be your heart or something along those lines.  I have been having such difficulty breathing because of so much fluid buildup that I literally feel as if I am drowning in my fluids. As much as I try to clear my throat or airway, it is literally impossible.  We try to clear the airway by banging on my back and such, but it really doesn’t do much. To make it worse… whenever I eat or drink (which is of course a necessity), it makes the choking, wheezing, and inability to breathe so much worse.

That being said, I went to the doctor today in order to check into what the deal was with that because I was having extreme trouble breathing and with the high fevers and everything, we were worried that perhaps I was getting pneumonia or something.  Well, I went to the internist and he heard exactly what I was saying was occurring and he said that an x-ray was needed immediately as well as a trip to the pulmonary doctor.  So, I called my pulmonary doctor and within 30 minutes, I was sitting in her office looking into what was going on because this was something seriously wrong.

Turns out that it isn’t Pneumonia.  It turns out that my GI system has deteriorated so much that the aspirations have gotten so bad that it is literally drowning me in my own fluids. I desperately need help in my GI system area because if I don’t receive it soon, I will die.  It turns out that all this inability to breathe and such is because of the severe aspirations that are occurring. Even though I have been having aspirations for a while, they have severely worsened.  This could also be causing the fever.  The aspirations are so bad too that they are worried that I am going to get Pneumonia because Pneumonia is a very serious illness for anyone, let alone me. If I would get Pneumonia, it would be devastating because I would never be able to fight it.

The doctor said how I really need to get help fast.  She said how I desperately need to get the transplant because the aspirations are just a symptom of how bad my body is failing me due to my GI system completely not working.  I am filling up with fluids like I explained because of this and literally ‘drowning.’ However, I cannot get the transplant right now because I don’t have the funds and since we waited so long, I am not strong enough either.  Therefore, I really need to have the tubes placed in me so that they can try to ‘buy’ time and to try to make me stronger.  The hope is that the tubes will hopefully provide that goal and when the window opens up that I am strong enough, we will have the funds to be able to undergo the transplant.  But of course that will only be able to happen if I receive help from others because there is no way my family is going to be able to afford this all on our own, as the cost of the multivisceral transplant (stomach, small and large intestine, pancreas, liver), the immunosuppressant drugs, and everything else that this transplant will require (such as the accommodations and how I will have to literally live at the hospital for like 3 months at least), etc. will cost.  It is just astronomical.

images-1In addition, like I just said, I also need to have tubes placed in me as well as gastric surgery because of what is occurring in the meantime before the transplant.  Not only do I need the tubes, but also my colon is twisted and has an obstruction that should have been removed a while ago.  I have been fortunate to be able to live with the obstruction though because my colon is so dilated, but it is getting to the point where my time is running short with that.  However, I really need help from others if I am going to be able to undergo those treatments as well because they are also very costly.  I cannot just go to any hospital, as I have to go to a hospital that will be able to do this procedure and handle my complicated illness and such.  I really need to go to the Mayo Clinic in Minnesota or Stanford Medical Center in California.  However, the Mayo Clinic doesn’t take my insurance and even with Stanford taking my insurance to a point, the cost will be astronomical because the amount we have to pay in copayments and traveling expenses is just so much.  Just in copayments (and that is with the insurance paying), it will cost us $150 per day in the hospital, $100 for each test, $100 for each procedure, $100 for each x-ray/image taken, etc.  It will clearly add up because when I go to the hospital, they take so much blood, do so many procedures, and take so many x-rays.  Plus, I will be in the hospital for a while, so I will have to pay for that, as well as hotel expenses for my dad and such.  But even so, the Mayo probably would be a better place for me and they barely even take my insurance whatsoever.  I don’t know is going to happen.

The aspirations are just getting so horrible and it is really preventing me from breathing.  The doctors want me to stop eating and drinking because it is only killing me more by compounding the problem and killing me more. However, eating and drinking is a necessity in life and if I don’t do that, I will surely die.  Therefore, that is another reason why I need the tubes now.  I need the tubes because this way I won’t have to eat or drink anymore.

When I went for the x-rays today, they also noticed how distended and how filled up with ‘air’ my colon and abdomen is.  They saw how much my GI system is literally dying off and how much added problems it is causing my putting added pressure on all my organs including my heart and lungs.  Since nothing is moving in my GI tract, I am literally being poisoned.  I can’t expel anything including the medications and food that I am taking and therefore, the food is continuing to rot and ferment in me and the medications are continuing to just remain in my bloodstream instead of being flushed out.  The doctors are extremely worried about this because it is building up so many deadly and poisonous toxins in me.  Even when I go to the bathroom, you can literally smell the mucous fermenting (not to sound disgusting).

Since all this is occurring, this could be what is causing the fevers as well.  It is very dangerous and something really needs to be done and done fast.  The doctors told me how urgent it is that I get to the Mayo Clinic or Stanford to get help, but like I said before, I can’t afford it on our own.  In the meantime though, the doctor is trying to help me as much as possible to be as comfortable as I can be as well as to ‘buy’ time and not have me drown in my fluids.  Therefore, she has put me on a lot of new medications as well as a huge nebulizer machine.  I was on one on the past, but this machine is much more intensive. The only thing is that this machine is so big.  I really wanted to get the smaller one because it was easier to use and more portable, but it was more money than this bigger one (I guess they charge for convenience).   Even this bigger machine was not cheap.  But, when you are strapped for cash, I had no choice but to really go with the bigger one.  But, I am planning on saving up for the smaller one because there is no way I can bring this bigger one with me when I travel to hospitals and doctors.  Gosh… everything just costs so much money in the world that can help a person.  Whatever happened to a person’s life being the most important thing and people being worried about that above all else?  Even this bigger

Witch-halloween-holiday-witch-smiley-emoticon-001150-largeI also had to see the surgeon today for the osteonecrosis because I am in horrible pain.  I never have been in such pain before.  My jaw and teeth are killing me and it literally radiates throughout my jaw and travels right to my brain.  It makes it literally impossible to eat or drink absolutely anything, and even when my tongue touches it in certain spots… it sends me through the roof.  We knew that this was really bad and how much surgery was very much warranted.  The surgeon knew that from the last time I saw him that it was ‘bad’ and how I needed it ASAP. However, it is now at the point where the surgery needs to be done now.

When I went to the surgeon today because I called him yesterday because the pain has gotten so bad, he said that I really need surgery immediately. He said that he doesn’t know how much longer this can actually ‘wait.’ He took more x-rays and scans and just in 5 days, there was a drastic change in the osteonecrosis and the teeth.  I knew that something had to be wrong because I was just in so much pain.  It feels as if I have brain-freeze (like when you eat something really cold and you get that cold sensation in your teeth that shoots up to your brain that you can’t stand) and won’t go away.  It is like when an electrical current strikes you when you are touching something metal and you get stuck on it. You want to come off the metal and stop touching it, but you are like plastered onto it with the intense painful electrical current going through your body.  Well, that is what is happening to me.  It feels like I am being plastered with the electrical current going through my jaw and teeth and I can’t get it to stop no matter what.  To think that I am feeling all this and I am on all this pain medication too such a morphine, dilaudid, methadone, ketamine, nucynta, etc. I don’t even wanna know what it would feel like without meds.  In fact, the doctor said how he wises he could give me something, but I am on everything already.

Just in the 5 days, the doctor couldn’t believe how much things gotten so bad. I developed even more death in the teeth and the whole entire roots in the teeth and such are all inflamed and such.  The doctor said it is just simply horrible and something needs to be done immediately.  But just like everything else that needs to be done and urgently done, the surgeon isn’t on our insurance plan and this type of surgery can’t be done by just ‘anyone.’  It is a specialized surgery that I will not be covered for no matter who I am with. So, we really don’t know how we are going to afford this surgery either, but this is something that needs to be done immediately because not only am I in severe pain, but the bones and teeth are literally dying.  The jawbone and other bones are literally protruding right through my skin and roof of the mouth.

The doctor is having an urgent meeting in the hospital on Monday to see when they can fit me in. He wants to get me in as soon as possible because of this.  It can easily cause a massive infection that can literally cause even more problems and kill me because of it causing more problems with my other illness. He also wants to take care of it so urgently because the pain is literally causing me to ‘pass out.’  They are fearing that I am suffering from having a vasovagal response, which they are very worried about.  After all, I am hypersensitive as it is, so I can feel literally anything whatsoever… no matter how minute.  The doctor said that people that suffer from my condition where the nerves are all exposed and inflamed the way it is occurring with me say that it is so excruciating and worse than childbirth and cutting off limbs.  So if that is what a normal person feels, you can’t imagine how bad it is in me because I am so much more hypersensitive.

The doctor also wants to get me into the operating room as soon as possible and get this taken care of because I really can’t eat or drink.  I am not in the healthiest weight nor can I afford to lose any weight whatsoever. The doctors are very scared that I am losing weight because of all this and it will also cause even more problems because I can’t afford to have this happen.  I only weigh in the 60s as it is and have a BMI 10.8, which is the lowest many doctors have ever seen before already.  So… between the pain, weight, the chance of a life-threatening infection occurring, the osteonecrosis getting worse, etc. … We really need to move.

Well… I guess that appears to be all.  The new book from Helen Fielding just came out and I can’t wait to start reading it.  “Man About the Boy” is the latest book from the “Bridget Jones” series.  I loved her other two books and the movies were really amazing too.

Well… gonna get going. If you can please help me by spreading word that I am in desperate need of donations, I would really appreciate it.  If nothing else, if you can please say a ‘prayer’ for me… it would be much appreciable, as prayers are free of cost and can really help bring about a miracle, which I am in desperate need of occurring.  Thanks again for all your continued support and encouragement.  I wouldn’t have made it this far without you.

Love,

Fallon

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October 13, 2013

1381915_580278195354225_1777906789_nHi-

Just wanted to briefly update you on all that is happening since so much has been occurring.  I haven’t been feeling well and therefore, I feel like I haven’t been able to keep you as current as I would have liked, but I am hoping to bring you up-to-date as of now.  Sorry about that. I just haven’t been doing well and I haven’t really been well enough to write a whole big update and such.  I am still not doing well tonight, but I wanted to gather some strength and update you as much as possible tonight before more things occurred.

Unfortunately I have not been doing too well.  I am at the point where I am going downhill really fast.  I am trying to keep as positive as possible and trying to keep hope alive that I am going to get ‘better’, but the truth is that I am really rapidly deteriorating and unless something is done fast, I don’t know if I am going to make it much longer. I know the end the holidays are approaching and the end New Year is just around the corner, but the way that I am going… I am afraid that I won’t even make it.   I never felt so horrible, and it is honestly really scaring me.

I have always been understanding and hopeful that no matter what, I still had ‘time!’  I was always appreciative on whatever treatment I may have had even though I definitely needed much more treatment that we couldn’t afford.  However, due to how costly my treatment is, we cannot afford it by ourselves and therefore, I have not been able to receive the very necessary treatment that I need to save my life because of insufficient funds. Even though I have been receiving treatment, we have had to make drastic cuts because unfortunately the funds are just not there.  Despite all my efforts of fundraising and bringing in donations, we are really coming up short for affording the lifesaving treatment that I need.  I need very expensive medications, ketamine infusions/comas, surgeries/procedures, and appointments with doctors, etc.  Money only goes so far and since we have been paying for my treatments for so long, the money has run out and the bills are just way too high that we just can’t afford them anymore.  That is why I have been so desperate and have been pleading and trying to raise as much funds and help as I can.  Without ‘help’, there is no way I can receive the very lifesaving treatment that I need.

I never put my parents back against the wall, but I told them for the very first time that something has to be done now or I am going to die.  I never said this before, and for me to say this… it meant things has to be bad.  I told them that I need treatment now more than ever.  I desperately need to get out of the country to get that ketamine coma that can reverse my entire disease.  Even though I do get ketamine in the United States every week/every other week, it is not nearly enough to get me ‘cured’ or to reverse the entire disease because the amount that I really need is not FDA approved.  The amount of ketamine that could do this is so much that they literally have to ‘kill’ my body.  The amount that I will receive of ketamine will be so much. They have to shut down my entire body, as my entire body will depend on machines to keep it alive for quite a while.  Hopefully by having this large infusion of ketamine, it will ‘reboot’ my entire body like a computer is rebooted and put this whole entire illness into remission.

However, the cost of this procedure is extremely expensive, as it will cost nearly $100,000. Yet, it is my only chances of really getting well.  Yes… it is very scary, but I am more afraid of being in the state that I am in currently. The only places that do this procedure are Mexico and Germany, and it really only has been done 73 times previously.  I am really hoping that I will be able to get it done, but of course it all depends on being able to ‘afford’ it.  But this really would be my best chance of living.

In the meantime, there are places in the United States where I can get larger doses of ketamine than I am receiving currently.  Even though it is not nearly the amount that will put the disease in remission or be the amount that can be given out of the country, it will definitely be a larger amount and a longer amount in duration (amount of days that I am given the ketamine coma/infusion).  However, it is definitely more expensive than the ketamine procedures that I am currently going for and I still definitely can’t afford it.  They will cost me about $40,000-$50,000.  Even though they might not be as high as needed as the ones out of the country, they would definitely benefit me and at least help me in a major way.  Yet, like I said before, I will no way be able to get this treatment unless I get help from others and my life is literally hanging in the balance.

In the meantime, I also require procedures and operations that could at least ‘buy’ me time. The disease is spreading and shutting down my entire body and therefore, it is affecting everything including my GI system.  As a result, I am unable to eat or drink anymore.  Even the few things that I used to be able to get down such as eggs and ice cream are getting to be extremely impossible to swallow. It is even worse when it comes to medications because I rely on the medications to at least get me through the day and I am having so many problems with not only swallowing it, but with absorbing it as well because of the GI problems.

I take more medicine that can kill a horse, as I take over 50 pills daily and they can range from everything from morphine, dilaudid, nucynta, methadone, ketamine, etc. They are so potent and it isn’t like they do any ‘miracles.’ They are just taken in hopes that they will help me get through the day!  Without them, I definitely wouldn’t be able to manage because I have tried to cut down on the medications in hope to save money on them because they are extremely costly and I also can’t get all my medications covered by insurance because they are ordered overseas since they are not FDA approved, but every time I try to cut down, it results in only severe withdrawal and exacerbation of my illness.  I really need the medications in order to survive.  Yet, it is getting harder and harder to take the medications because I can’t swallow.  I used to be able to get them down with carbonation, but now even my old ‘tricks’ don’t even work.

With everything occurring in my GI track, I desperately need a GI transplant.  I need a very rare and dangerous transplant that not many hospitals in the country perform, as there are only about 6 hospitals that do the transplant and there are very few cases done.  I need a radical transplant where I will receive a new stomach, small and large intestine, pancreas and liver.  However, this operation and the immunosuppressant drugs that I will need to take following the surgery are extremely expensive and there is no way that I will be able to afford it without help.

Since very few hospitals perform this very radical transplant and we have had problems affording it, I have become even sicker waiting for it.  Therefore, the doctors have said that I am basically too sick now to withstand the transplant and therefore, I need to have another emergency procedure performed if I am going to survive. The doctors are claiming that I am at the end of the rope, and I can either hang on or let go. I only weigh in the 60s and they have never seen someone with a weight or BMI as low as mine. I am severely weakening and deteriorating and they said that I desperately need to go to the hospital to have TPN or something to get me stronger immediately because without it, I will die

I am at the point that I am really too weak and my organs are shutting down way too much for me to live much longer.  My heart is really suffering and everything that is going to keeping me alive is going to my heart because we all know that once that goes, that is going to be it!  However, there is only so much a heart can take and we are hoping that something can be done before that occurs.  The doctors don’t want me eating or drinking anymore, as they think it is only making things worse and exacerbating my illness.  However, since a body needs to eat and drink to live unless they have another way of getting ‘fed’ such as with TPN, I really have no other choice. The doctors have stated how urgently I need some intervention such as TPN to get stronger or at least some nourishment because my body is literally starving to death and shutting down.

My bloods are worse than ever, as they are dropping like crazy and I am so at risk for an arrhythmia and cardiac arrest.  I am also now having an elevated level with my clotting and as a result, I am having an extremely hard time clotting.  Things just continue to worsen and get worse.  My organs and entire body are just shutting down and since my bowels don’t move, the toxins of all the drugs and everything that are in my body are affecting and creating very dangerous levels for my body because they cannot be eliminated.

1277120_10100921868350420_198831047_oI really need to get to a hospital and get TPN so that I can get a source of nourishment and to stabilize my bloods, as well as help to remove some of the toxins.  We also know that I have a twist/obstruction in my bowel that needs to be taken care of.  Fortunately my intestines are so dilated that I have been able to live with that obstruction/twist this long.  Yet, it isn’t as simple as just going to any hospital.  Very few hospitals are able to deal with my complicated illness and the ones that can are not located in the New York area.

I desperately need to get to the Mayo Clinic, Stanford hospital or even John Hopkins.  Even though the Mayo Clinic is really the preferred hospital, the other hospitals can do, but the top two hospitals that I really should be going to and that the doctors are best able to handle me at are the Mayo Clinic and Stanford (with the Mayo being priority).  However, even though they both take my insurance to some point, the cost of not only the traveling expenses to these hospitals will be enormous, but so will the actual cost of the hospitals.  We aren’t completely covered at the Mayo Clinic and even if we were, the amount that we have to pay towards copayments and deductibles is completely unbelievable.  Just in a regular hospital, it costs us $150 per day as an inpatient, $100 per procedure/x-ray/blood test, $50 for emergency room visit, etc. So as you can see it will clearly add up because I won’t be in the hospital for just one day and I won’t be just having one procedure or one x-ray or blood test.  The amount I will receive will be far too numerous than I can afford.  We just don’t honestly know what to do.

It surely stinks because we pay so much for health insurance and when it comes down to it, it really doesn’t help that much.  Even the new “Obamacare” won’t even help me.  It is like no matter how much they say that insurance companies are ‘there’ for the patient and there to help them out, they are really out for themselves and in it to make money.  I was already told to apply for financial aid for Mayo Clinic because we have previous bills from previous visits.  However, they told me that if I need surgeries and procedures there, I should just wait until after I have them done and apply then so that I am covered for everything.  I told them that I can’t do that because if I am denied the financial ‘help,’ there is no way that I can be stuck with any more bills, and if I am denied the ‘help’ then I will then be also stuck with this new surgery bill that could have been avoided.  They just don’t understand.  I just wish there was some way of paying for all this.  I just wish there was an answer to all this.  I keep wondering what would be if money didn’t exist.

To make matters worse, my osteonecrosis is also really worsening and my teeth are really getting worse too.  I need severe root canals because the osteonecrosis and my illness are causing the teeth to die and the roots of the teeth are all exposed.  The doctors have tried numerous procedures, but the truth is that they are limited because I can’t tolerate much and because of my complicated nature.  I can’t even be given novocaine really because it doesn’t do much for me. Even with 4 injections, it barely numbs me and will never give them a significant window for the doctors to do what is needed.  I am in tremendous pain not only with my body in general, but my mouth is killing me as well.  My jaw is giving me excruciating pain, as it is protruding into my mouth because of the osteonecrosis, and my teeth are constantly giving me electrocutory pain as it constantly feels like I am getting ‘brain freeze’ every time something touches the tooth whether it is when I eat or even drink anything whatsoever.  I am just in so much pain that I am literally climbing the walls.

Due to all the osteonecrosis and the nerves being exposed and the teeth dying and such, I desperately need surgery done.  However, the specialists that perform these kinds of operations are of course not on my insurance plan and to have it then done in the hospital, it will even more expensive.  Yet, I desperately need it done as soon as possible.  Thankfully, my current doctor is amazingly nice and although he can’t do the surgery himself because he isn’t a specialist, he has been going way beyond the call of duty and helping me out in any way possible.  Not only has he been talking to other doctors in the hospital about me so that the entire hospital is basically familiar and knowledgeable about my case, but he has sought out and tried to find the best surgeon and doctors for me to do this surgery on me because this type of procedure compiled with my difficult and complicated illness is no walk in the park.  I am also so fortunate because he has also went beyond the call of duty and tried to help me out as much as he can financially, as he knows how limited my funds are. He has done whatever he can do to help, which includes taking the necessary x-rays and such so that I will not have the other doctors charge me.  He is simply one of the most understanding and best doctors in the world.

That being said, I am scheduled to meet with the surgeon on Monday to finalize everything and to know when the surgery will be done, as well as all the specifics.  I really can’t wait because I am in so much pain.  I will keep you all posted as to what happens.

So that appears to be all.  Nothing really else seems to be happening.  I am just trying to hang in there as much as I can in the meantime.  I am just getting so weak though.  I am collapsing all over the place and I go to ‘bed’ earlier than ever because I just can’t move. Even though I can’t really ‘sleep’ per se because of the pain, I am literally just passing out because of how weak I am.  I keep breaking into night sweats and I can’t regulate my body temperature. I keep going from hot to cold in a matter of seconds.  My autonomic dysfunction (and not just the part that regulates temperature) is so out of control.  I keep freaking my parents out because I can literally collapse into bed and not be stirred for like 24 hours.  I keep having out of body experiences and I keep going into these really deep sleeps.  Something just doesn’t feel right.  I am scared because I know something is definitely happening.

Sometimes I wonder if I am going to make it through the night or even the day.  My heart has been feeling so weak and shaky.  It feels like someone is literally pulling it down from being hung on a shelf.  I have been so weak lately that I have basically been stuck laying on the couch and bed.  Even getting up to just go to the bathroom and to get something is too much to bear because of how weak I feel and how much pain I am in.  I still perhaps get a few hours (like 2-3 good hours in the morning… if I am lucky), where I can still do more than just ‘lay’ around, but I quickly get exhausted and weaken.  But no matter what I do… no matter what time of day… the pain just never leaves and it is getting worse than ever.

I have been trying anything to keep myself busy and to try to avoid feeling the pain and agony that I am in… even though that is basically an impossible feat.  I am basically maxing out on all my medications and even on Tylenol (even though that is like a baby medication for me) and sometimes I just wish I can just take more medication just to ‘knock’ me out because of all the pain that I am in.  Sometimes I just wish I can just close my eyes forever.  I love going for ketamine comas/infusions because if nothing else… at least I escape the pain for a bit. But like always… good things always come to an end.

It is at the point that I can’t do anything without crying because of how much pain I am in. I can’t sit on the couch, I can’t drive in a car, I can’t go outside, etc.  I can’t even wear pants because the slightest touch of the material is sending me up the walls and the autonomic dysfunction into severe problems.  I am just suffering so much. Since I really can’t do anything ‘out’ of the house and I am limited… thank goodness for the iPhone.  I have learned to play some really cool games on the phone to keep me busy.  It surely gets addicted.  In fact, I just got my dad into the IPhone from a flip phone about a month or so ago and he can’t put it down. Even he said that these things should come with ‘warnings’ like “these things are addicting… BEWARE!”  I can’t believe though how far he has come in learning how to use it.  He really has joined the technology age finally and is catching up with the world.

If you know any cool apps, please let me know because I only know a few. I am game for anything… whether it is a photo app, game, etc.  I have found some really cool things to do on the phone with pictures such as make really cool collages and such since I love taking pictures, as well as some really cool games.  The only thing that really stinks though is that even though the new iOS 7 version is terrific and such, it really is draining my battery like crazy. I don’t know why all of APPLE’s upgrades in their desktops for the laptops and phones end up killing batteries, but they do.  It really stinks because the batteries on the iPhones didn’t last very long before, but at least I was able to get through an entire day without charging it.  Now…I can’t even make it through a day without charging it more than once.  The battery really goes in this new version and especially if you are in a program or text messaging.  I see it go down like 1% every minute and when you live on it and depend on it because it is your only lifeline since doctors always call it… you can’t afford for the battery to go so fast.  That is why I am thinking about getting an extended battery case charger for it.  I really didn’t want to do it because I love my gold sparkly case and the extended battery chargers are uglier, bulkier, and heavier.  But… I don’t know what other choice I am going to have. I wonder if APPLE is going to fix this problem or even if there is a way of fixing it.

In the meantime, I have a defibrillator right by my bed just in case.  Dad is really nervous that something is going to happen to me and a good friend gave us a defibrillator because the cost of one is just too enormous for us to come up with.  I told dad that if I ever needed it, it would only lead to be a disaster because with all the commotion, my dad will not know what to do and be flustered.  So while he is trying to figure out what to do even though the machine literally tells you what to do, my mom will be touching me and when my dad goes to put the paddles on me, he will end up electrocuting my mom too because she will be touching me.  I just hope that we never have to really find out about that defibrillator and what will happen if dad needed to use it.

I can tell things are worse than ever because Halloween was always one of my favorite holidays.  I used to love decorating the house and such and couldn’t wait for to do it.  I used to deck it out with corn stalks, decorations, pumpkins, etc.  I really went overboard, but I must say that I really had one of the nicest houses when it was all decorated.  It was something that my brother and I did together.  We would even get this really big pumpkin that was close to 100 pounds and put it right on our lawn that we would keep until thanksgiving. I also looked and searched for the perfect pumpkins that I could carve and make the perfect Jack O’ Lanterns, as I couldn’t wait to carve open the pumpkin and would love making different faces on each pumpkin.  Even when the actual holiday came, I also loved to dress up and give out all the candy to all the trick-or-treaters.

However, all that has now changed.  Gone are the days where I wanted to decorate the house. I couldn’t care what the house looked like or if the house was decorated for Halloween at all.  When you pass my house now, people would never think this was the same house.  Gone are the days when I wanted to carve the pumpkins.  I don’t even care to get that big pumpkin or to even get the perfect carving pumpkin at all.  The only reason I will cut open the pumpkins now are to get the seeds out because there is nothing like eating pumpkin seeds.  Nothing tastes the same as home cooked pumpkin seeds and that only happens once a year… so I don’t want to give that up.  Plus… my entire family looks forward to eating those seeds and they actually fight over them… so I don’t want to disappoint them either by not making it for them.  Gone are also the days where I would dress up and couldn’t wait for the trick-or-treaters to come.  In fact, I would be much happier to tell you the truth if the doorbell didn’t ring at all because this way I wouldn’t be disturbed.  Just having to get up and down and hearing the bell is torment and causes me in more severe pain.  This is definitely not the same me that I once was. I miss the old me.

I also miss the old me that was able to eat anything and everything.  I have such trouble eating anything and it is so unfortunate because this is the time of year when ‘pumpkin’ stuff is made and I love anything with pumpkin. I love pumpkin pies, pumpkin donuts, etc.  Nothing beats a good pumpkin muffin from Dunkin Donuts… that is my absolute favorite.  To think… if I get the tubes, I will never be able to enjoy these items again because I won’t be able to eat or drink. That is why I desperately need to get better and have the transplant.  I desperately want to be able to eat and drink so that I can enjoy these yummy and delicious foods.

615295_10100921868230660_1015638793_oWell… gonna get going.  Just wanted to give you a heads up on what is occurring.  I received the nicest gift today.  I am so thankful for all the help and support everyone has given me.  I only wish that I could get the media’s attention so that I can possibly get more donations because I desperately need these treatments because my life literally is hanging in the balance.  I also want to personally thank two people that I have met and who have become my friends and great supporters because of the wonderful lovely gifts that I recently received.  I truly loved the basket that one of them sent me, and I was really touched and moved by the picture that was taken of her nephew’s football team cheering me on as well as dedicating their win (and every touchdown) to me.  I never expected any of this too occur.  You can’t imagine the smile that was put on my face especially when I have been going through all this pain and troubles lately.  I will cherish these gifts forever and ever.  I am so lucky to have people that care about me.

In the meantime, I also had my hair done and they tried to transform me.  I wanted to try to change my entire appearance and thought maybe a ‘new’ me would bring about a whole different person.  So I was fortunate to have wonderful people work on my hair and they really made me feel pretty… even though it was only for the day.  All good things I guess have to come to an end.  But at least I was able to feel ‘pretty’ and ‘normal’ for awhile.

Well… going to get going.  Until next time!

Love,

Fallon

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October 6, 2013

1239068_10100911206232390_248991222_oHi-

Just figured that I would write and tell you the absolute latest and give u the most up-to-date update!

Well, I went for that procedure on Friday that I explained in a prior message.  I had to go because the osteonecrosis is worsening so much that the jawbone is protruding through my mouth more than ever, and I am having teeth and the nerves of teeth being exposed and the teeth are also dying.  As a result, I am in a lot of pain.  Even though they can’t really do anything to stop or prevent the bones from dying, they were going to at least try to help the teeth because they were worried that it could lead to a severe infection and I was also in a severe amount of pain.

Not only are the teeth dying, but the roots of the teeth are all exposed as well.  Therefore, I constantly feel this gnawing and electrocuting pain that shoots from my mouth all the way up to my brain.  It isn’t like I can’t bite or chew.  It isn’t per se something thing wrong with the tooth itself, but rather it has to do with the tooth internally and the nerves.  You know?  Therefore, whenever anything touches the tooth or I drink or eat something, the teeth are extremely sensitive because the nerves are all exposed instead of being ‘covered’ like in a normal person.  Whenever I eat something or drink something, I will get the worst imaginable pain ever.  It will feel like I am getting a ‘tooth freeze/brain freeze’ and it will stay there for about an hour or so.  You know when you eat something that is extremely cold and you get that severe pain in your brain and tooth that you call ‘tooth freeze/brain freeze?’  Well… that is what is happening to me every time I eat or drink anything because the slightest change in temperature that hits the tooth or bone sends me running for the hills since the nerves are all exposed.

The surgeons decided that they would try to do a really intensive root canal because they wanted to hopefully try to ‘save’ the teeth from being surgically removed.  However, when I went to the doctor on Friday, it was determined that this cannot be the case. It really stunk too that they couldn’t do it because I really had to psych myself up big time to get it done and for me actually get myself to walk through the door.  But why shouldn’t I be surprised because things like this always happen to me. Nothing ever goes according to plan.

Even though the doctor was the nicest doctor in the world and would have loved to do the necessary procedure, it was determined that it was really not a possibility.  The doctor saw that it was a lot more complicated and intense than they originally thought, and it went far beyond just getting a really intensive root canal.  The doctor said, “What was occurring was not just occurring in the teeth, and it went beyond the teeth and into the bones (jawbone) as well.”  As a result, I would need a whole team of doctors to operate on me at once to take care of this problem.

In addition, the current anesthesia that they were giving me would no way be sufficient enough to hold me during the surgery that they needed to do.  They needed the anesthesia to last at least 2-3 hours and they were even having a hard time getting it to even take for this procedure.  They had the gas even turned up all the way and such, but nothing was really working.  They were worried about the novocaine as well because it doesn’t even dull or numb anything. So, for them to do what was really needed and for that length of time… I would need a great deal of anesthesia and a different kind than they were giving me at this time.  It was far more complex and went far beyond what they originally thought.

So I psyched myself up…went all the way for the surgery… and just when they got started, they realized it was going to be a NO GO!! All that for nothing and I am still in an enormous amount of pain!! All this and then it was discovered that it was much worse than originally thought and it was going to be one impossible surgery to do… one that is going to need to be done in the hospital with a whole team of surgeons and for me to be under for some time. So now I am here still in excruciating pain and awaiting the next thing to do. The surgeons now think that jaw surgery is especially warranted in addition to the surgery on the teeth.  They are just afraid because they don’t want to make the osteonecrosis worse.

So that appears to be the story.  I am here now waiting to hear the next plan of action.  They are supposed to be meeting on Monday and getting everything organized and hopefully I will know what is occurring then.  They are supposed to be getting me in for surgery as soon as possible, which I really hope is true because I am suffering so very much.

I am really nervous though because I am worried about how much this operation will now cost.  I know how expensive the operation was that I was supposed to have on Friday that was not going to be nearly as intensive as the one I am going to need and we were barely able to pull it off… even with all the discounts that were given. We are sure that this surgery is going to cost even more money because it is so much more intensive and complicated, as well as there is so many more doctors that are needed for this operation to take place because it goes way beyond just an intensive root canal. I just hope that it is going to work out.

It is reasons like this that I really beg and wish that I really had the media’s attention.  I really need as much help from other people as possible and if the media was able to know about my story and get t out, then so many people would be knowledable about my condition and perhaps able to donate.  However, the only way really able to get word out that I desperately need this ‘help’ is through word of mouth since I am not really fortunate to have the media’s help and I am really hoping that you will be able to help me spread it as much as possible.  I am extremely thankful for all the help that has already been given to me and the help that you have done, but I desperately need more help if I am going to get better.  I cannot afford this expensive treatment on my own and therefore, I would really appreciate it if you can do anything to help.  The more people that get wind of story, the more chance I will have that they will donate.  I need all the help that I can get and the slightest donation will definitely go a long way because it is 1 less dollar than I have to come up with.

In the meantime, I am also really worsening and deteriorating.  My stomach and GI system is really getting worse and it is at the point where I am basically passing absolutely nothing.  I can go over a week’s time where nothing will come out because there is a blockage or a twist in the colon. I desperately need surgery to correct this, but we have been holding off because this surgery cannot be done on the local area and we really don’t have the funds for this surgery as well.

But it is getting so bad and I am getting in such severe pain that something really needs to be done ASAP.  This is usually a life-threatening occurrence, but I have been fortunate that I was able to live with this blockage/twist of the colon because my colon is so dilated that I was able to ‘live’ with it this long.  But like everything else, all things run out of time and therefore, I really need to get help.  Whereas I was able to pass extremely limited things before even though it was extremely small and certainly not everyday, the time that it is taking to actually get something out now is basically too long and nothing is even coming out.  So… things are definitely worsening and it really can’t go on any longer.  My entire body is failing.

So we are in the process of trying to make plans for this as well. But like I said before, the funds aren’t there either, so we have to be careful with that as well.  That is another reason why we so desperately need help.  We are hoping though that by the time we get the treatment and the hospitalization planned and we go… we are hoping that the funds and donations might come in to help us.  We are keeping our fingers crossed.  After all, I desperately need the transplant in order to live, but I am too sick right now to even get the transplant and they need to get me stronger immediately so that I can receive the transplant so I can live, I can officially say never a dull moment.

In the meantime since funds are getting so limited, we had to make some more cuts in my treatment.  I desperately need this expensive treatment, but when there is no money… it just can’t be done.  I seriously wonder what this world would be like if money didn’t exist.   So many things had to be cut that I desperately need such as hyperbaric oxygen and unfortunately you can’t get blood from a stone.  I ma really hoping that I will be able to resume the treatments that I had to put aside, but of course it is dependent on the funds I raise.  I really hope that I get back the hyperbaric oxygen treatment because I really saw lots of progress with that.  I really also don’t want to lose my limbs and they were hoping that this treatment was going to hopefully stop the chances of that occurring since all the tissues are being deprived of oxygen and are dying.  Never dull moment, right?

In the meantime though, the pictures finally came back that we took with the photographer and they were absolutely gorgeous.  I received all the frames as well and I have been busy mounting all the pictures.  I surprised my parents by mounting all the pictures into a collage frame for them and hanging it in their room. I wanted to surprise them and I really hope that they like it.  This way they can always remember me.  I put one up in my room as well.  I also got individual frames for some special pictures for the desk of my mom and dad.  Those frames are really special and they are made especially for them because one is made that says #1 mom and the other one says all about how great my Dad is.  I also made my dad a frame of him holding me and me giving him a great big kiss so that he can put it right beside his bed so that he can see me whenever he wakes up and goes to sleep.

884374_10100911206960930_181406940_oI also wanted to of course have some pictures as well so I made a whole album of all the pictures.  I also had like two sets of pictures that were really cool because one of the two pictures was in color and the other was in black and white.  One of the sets of the pictures was that I had one color picture of me giving my dad a kiss while the black and white was an even closer up picture of this.  The other set of pictures was of Max and me.  One was a color version of him kissing me and the black and white version was me kissing him.  I decided to put them each in a spinning double-sided frame so that when you spun it, it would spin between the color and black and white version.  I thought it would be a really cool idea!

Well… other than that… nothing else is really doing.  I guess that sums everything up. I will keep you all in the loop of what happens and what the next step to the surgery is when I find out.  Thanks again for everything that you have been doing.  I just want to say how much I truly appreciate all the support and encouragement that you have been giving me.  You will forever be in my heart.

Until next time.

– Fallon

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October 4, 2013

894741_10100911206427000_2118294112_oHi-

I just wanted to briefly write and update you on what is happening because I am going in for an emergency procedure tomorrow (well actually later today).  I know I told you that I would keep you all abreast on all that is happening and that is why I am writing now.  I am extremely nervous and of course in pain, so I don’t know how coherent this will be… but I will try to explain all that is happening.

I have to go for an emergency procedure today because of so many reasons.  First off… the osteonecrosis is worsening so much that the jawbone is protruding through my mouth more than ever.  In addition, I am having teeth and the nerves of teeth being exposed and the teeth are also dying.  As a result, I am in a lot of pain.  There really isn’t anything that they can do because not only is the jawbone dying, which is the osteonecrosis, but the teeth are dying as well.  Something really needs to be done because not only can I get a really bad infection, but I am also in severe pain.

1239068_10100911206232390_248991222_oI have been in the worst pain imaginable because of all that is happening.  Not only are the teeth dying, but the roots of the teeth are all exposed as well.  Therefore, I constantly feel this gnawing and electrocuting pain that shoots from my mouth all the way up to my brain.  It isn’t like I can’t bite or chew.  It isn’t per se something thing wrong with the tooth itself, but rather it has to do with the tooth internally and the nerves.  You know?  Therefore, whenever anything touches the tooth or I drink or eat something, the teeth are extremely sensitive because the nerves are all exposed instead of being ‘covered’ like in a normal person.  Whenever I eat something or drink something, I will get the worst imaginable pain ever.  It will feel like I am getting a ‘tooth freeze/brain freeze’ and it will stay there for about an hour or so.  You know when you eat something that is extremely cold and you get that severe pain in your brain and tooth that you call ‘tooth freeze/brain freeze?’  Well… that is what is happening to me every time I eat or drink anything because the slightest change in temperature that hits the tooth or bone sends me running for the hills since the nerves are all exposed.

1277551_10100911206302250_914961909_oI have been suffering for a while, but it is at the point that it can’t be controlled anymore. Ideally, the surgeons would like to have me admitted into the hospital and have the teeth removed. That would be the best option.  However, I do suffer from osteonecrosis and they feel that if they were to do this, it would only worsen things and cause further problems.  They are so worried that I would never heal and they are worried that the bones would die even faster since I already have the osteonecrosis affecting me in those areas.  I have the most intelligent doctors in the world working on my case.  They are like world renown.  In fact, my doctor actually had a meeting in the hospital to discuss this matter to try to figure out what the best thing to do about this situation is with my other doctors that are supposed to be world renown in the osteonecrosis area.  So…. We are really hoping that we are going about this the right way.  So we are proceeding with doing a procedure that will be ‘keeping’ the teeth, but it doesn’t meant that in the end the end result might always be that the teeth will have to come out.  We are hoping it won’t come down to that because like I said it will make the osteonecrosis worse and such, but we don’t know in the end if that is going to be the end result after all.

1263805_10100911206471910_1723983606_oSince they cannot remove the teeth like they really wanted to do in the operating room, they are doing another procedure where they are going to be doing really intensive root canal.  Hopefully it will try to ‘save’ the teeth from being surgically removed, but they just don’t know if that will be the case.  I have already started part of it because they wanted to try to ease some of the pressure and pain until the actual procedure  (which is happening later today), but it has only worsened things.

1269614_10100911206506840_756671219_oI am one really complicated and mysterious person. The doctors thought that they would start the procedure the other day to try to relieve some of the pain and to try to give me some relief that will hold me until I had the actual procedure.  However, it really was filled with complications.  We found out that the gas really didn’t help that much and all the novocaine that was injected into me didn’t do really much either.  With my illness the way it is and how I am so tolerant to all these drugs and such, the gas basically did nothing and after getting so many shots of novocaine, it only gave them a window of like less than 30 minutes to work.  They thought that I would be kept comfortable by this procedure to a point that was more tolerable until I would have this procedure later today especially since I would be ‘numb’ because of the novocaine, but the novocaine just didn’t work.  In addition, even with the entire root that the doctor did remove and with him putting in the medicine to kill as much root as he could, no pain could be alleviated.  I was in really bad shape.  I was given so many injections that I really couldn’t be given anymore because he was so afraid that my mouth would literally explode.  After all, I am so small and he did give me so many already.  There is only so much fluid that a mouth can hold without ‘exploding,’ you know?  You can only fill a balloon up so much before it pops.  LOL.

884388_10100911206556740_1052381054_oThe teeth were so rotted and so dead that they gave off such an odor when the doctor went in and removed part of the root to try to alleviate some of the pain and to hold me off until I had the major procedure today.  My mom was in the room and she said that she never smelled something so horrendous.  It turns out that when you have a dying tooth or something, it gives off this distinct and horrendous odor.

886121_10100911206641570_1530306355_oIn addition, the doctor also packed up the tooth as well because the tooth was all drilled out.  However, me being the way that I am and being as complicated as I am ended up pulling out all the packing later that night as well.  So… I was even in more pain than ever.  I tried taking all the medications that I could… Tylenol, Dilaudid, Methadone, Morphine, Ketamine, etc. but nothing was making a difference.  The doctor told me that I would be feeling better that night and have some relief because of the procedure that he did earlier and how he injected some of the medication to ‘kill’ the root and how he took out lots of it as well, but to tell you the truth… it didn’t do anything. Not only that, but the tooth was draining and all the infection and medication was draining into my mouth and was making me nauseous.  I have severe GI problems as it is and suffer from severe nausea too as it is already… this only made it worse.

1264561_10100911206861130_1834442534_oSo I am off today to the surgeon to have this procedure done.  He is going to be removing all the roots of the teeth.  He is going to be going into every single canal with microscopes and such to remove whatever nerves he can find and such.  I am so very nervous because it is going to be so painful.  Everyone says that I will be in very good hands, so I am hoping they are right.  I am really freaking out though to tell you the truth.

I am really nervous though because to be honest with you, we really cannot afford this.  As I have told you in the past, my medical treatment is extremely expensive and we are having a really hard time affording it.  We have tried so many different ways to raise funds (i.e. Facebook, writing to the media, websites, hanging posters, YouTube, etc.) but nothing really has worked unfortunately.  We need help more than anything in the world because we definitely can’t afford my medical treatment on our own.  It is at the point where I really had to make drastic cuts in my treatment and have basically put a stop to certain aspects of my treatment because we cant afford it.  It is really jeopardizing my life a lot because I don’t have time to spare.  I am literally hanging on by a thread and the doctors said that if something isn’t done quickly, I am not going to make it.  Yet, it is impossible to afford all the treatment that I need by ourselves and unfortunately we are not receiving the necessary help that we really need.  I really wonder that it would be like if money didn’t exist in today’s world.

1267388_10100911206906040_1041920279_oI am really nervous because this procedure in itself is so very expensive.   At the very least, this will be costing me nearly $3000.  The doctors are giving us discounts, so I don’t even want to know how much it would cost without the discounts.  But even with the discounts, I don’t know how on earth we are going to find a way to do all this.  But this is something that has to be done.  I only wish that I could get the media’s attention so that I can get my illness and the much-needed attention that I need to raise funds.  I desperately need it.  The slightest amount of money will go such a long way because even one dollar is one less than I have to come up with.

To make matters worse, I really need to have tubes put into me ASAP in order to have TPN.  Like I said previously, I need a multivisceral transplant as soon as possible, which includes getting a new stomach, small and large intestine, pancreas and liver.  I need it more than ever because I am so sick.  However, it is at the point now that I am too sick to get it and if I was to get it… I would be dead within a week.  Therefore the doctors want to put tubes in me to get me stronger so that I can get the transplant as soon as possible because my life is literally hanging in the balance.  I desperately need something done because they never saw anyone so sick as me… someone as low in weight or in BMI as me.

884374_10100911206960930_181406940_oWith everything happening and my disease being so complicated, I really can’t just go anywhere to get things done.  I need to go to special places across the country because of how complicated I am. Not many doctors are familiar with my illness or are able to handle my illness.  However, one place that I need to go is to the MAYO CLINIC.  However, they don’t quite take my insurance and to go there it is quite expensive.  I went there previously and just spending a few days there ended up costing me at least $6000 in medical bills (and that is with the insurance paying a lot of it too).  There is definitely no way I can go back to have this procedure without help because it will be far more costly than that.  I really hope that it will work out though because my life is literally hanging out on a clothesline out to dry and it is ready to snap.  I need to get help there immediately because I am running out of time and that is the best place for me.  So I am hoping that things will work out, but I am being realistic that things might not.

Something has to happen though and happen fast because I am really weakening. I basically can’t get off the couch.  I basically am up in the morning and that is about it.  I collapse definitely by the afternoon and I am going to sleep earlier than ever.  My parents are having to just get me up nowadays to take my medication. I am just getting so weak.

In the meantime though… I guess all I can do is pray and hope that something happens.  I just have to hope and pray that I will be ok.  I really want to thank all of you though for helping me get through all that I am dealing with and for helping to spread the word of my website as much as possible.  I would have never made it this far without you.

This past weekend, we also had a photographer take pictures of my family.  It really meant a lot to me because I wanted to have my family have pictures of me with them if something happens to me because I want them to remember me.  I know how bad things are getting and it was really important for me to have them have these pictures.  I was really fortunate that a photographer known as David from “David Cerezo Photography” was willing to take pictures for us out of his goodness of his heart.  We had such an amazing morning with him and the pictures came out absolutely amazing.  I am definitely going to treasure these pictures forever and ever.

My mom and I got our makeup and hair done for the pictures and in combination of that with the excellent skills of the photographer… the pictures came out absolutely superb.  I can’t even believe how beautiful I look in the pictures.  If I didn’t know anything, I would never know that I was ‘sick!’ It is amazing what a little makeup and a great photographer can do!  I am really self-conscious about my face and the lines that I have because I really don’t have any muscle or ‘tone’ in my face.  However, I am so thankful that the photographer was able to touch up and able to hide all those lines because my face literally has lines because there is no tone or muscle underneath.

Max was such a good boy too.  He loved having his picture taken.  I gave him a bath the night before so that he looked his best too.  I couldn’t believe though how well behaved he was and how he love to have his picture taken.  However, I knew that he was ‘fat’ but I didn’t realize how fat he really looked until I saw the pictures. Gosh… that dog has to lose some weight!  After all, we basically weigh the same weight and he is a dog that is smaller than me.

1262991_10100914605704820_342627642_oNot only did we get excellent pictures of the family that I love, but my parents got the pictures that they wanted too.  My mom wanted a picture of a duck that we saw when we went to take the pictures at the park and David was nice enough to take the picture for her and send it to us. My dad also wanted his own picture preference of his touching my mom’s boob (which I am not going to show).  Why he wanted that, I have no idea! But you know my dad… he is such a kidder!  When I got back the pictures, both of them were looking for those pictures that they requested.

Since I have all these amazing pictures to cherish forever and ever, I decided to put them together and make a ‘collage’ for my parents.  It is also my parents’ anniversary coming up on the 19th and therefore, I was planning on giving them this wall frame of all the pictures for it.  I also got 2 frames to specifically put 2 of the pictures especially on their desks… one of me and my mom, and one of my me and my dad.  They are special “mom” and “dad” frames. I hope they like it and appreciate it as much as I do.

For me, I got this awesome spinning frame.  I have this picture of my dog and me that is in back and white and then another in color.  Since the spinning frame is double sided, I thought that I would put the color on one side and the black and white on the other side.  This way when it spins, it will look really cool.  You know?

I got all the frames now at home, all I am now waiting for is the pictures to come.  Hopefully they will be here soon!  I will show you the pictures below.

Well… other than that… nothing else is going on.  I am going to go and rest because I am not feeling well.  I also have a big day coming up.  I am planning on watching a movie after I come back from the big procedure.  My friend came over and we started to watch FROZEN GROUND.  So we are going to finish watching that and perhaps watch THE INTERN.  I really wanna see that movie.

I am really excited though because I finally got notice that my phone is being shipped.  I needed an upgrade on my iPhone and I have been waiting so long for the new iPhone to come out.  I really wanted the gold iPhone and I waited up all night to pre-order it.  I was literally the first one online to order it and would have been the first to get it when it was released.  However, when I was ordering it online, I realized that I didn’t have the gift certificate by me that I had so that I could pay for the phone (I had the upgrade and then an added gift certificate to pay for the difference… so essentially the phone came out to costing me nothing!! What could be better than that?) .  So of course I had to go and get it.  I was literally gone for like 5 minutes.  Within that time, the line to get the gold phone went to a week’s wait.  I was so upset because I was really supposed to be the FIRST one to get it when it was released and now I was going to have to wait.  But… I just received notice today that it has been shipped, so it should be arriving soon.  I really hope it arrives Saturday, but I have a feeling it won’t be here until Monday or Tuesday.  I can’t wait to receive it.  I really hope that it was worth waiting for because I could have gotten a different phone color, but I wanted the GOLD one.  People thought I was crazy because I could have gotten another phone at an earlier date, but I wanted the GOLD one.  They were like “you are going to put a case on it anyway, so why does it matter?”  I know that they are probably right because you won’t really see the gold since the case will be on it, but at least I will know it is the gold one.  At least also you will see the center circle bottom outlined in gold though.  There has to be something with this color because it is the hottest color phone out there right now and they are basically lines and lines waiting for them.  People can’t get their hands on them and the line to get them (even on the internet) is so long; you can get the other colors so much more easily.   So I will let you know if it was worth the wait.  I can’t wait to use the camera and the fingerprint scanner. I also can’t wait to hopefully have a better battery because since I updated my old phone to IOS 7, which is the newest software from APPLE, it is really draining my battery.  I had to get an extended battery pack just so that I can have my phone last me the entire day.

In the meantime, I am still trying to get my dad to learn the iPhone.  He is coming along… slowly but surely.  He is like addicted to this phone though.  He spends all his free time playing around with it and checking it out.  It wouldn’t be such a big deal if it wasn’t for every two minutes hearing “Fallon… we got a problem!”  For someone who never wanted anything but a ‘flip phone’… he surely is loving his iPhone.  I think I might have to enroll him in “iPhone anonymous” soon because he won’t put the thing down.  He has to touch and go into everything even if he went into the app 2 minutes before.  He is always afraid he is missing out on an email or mail or message or contact or something else.  He is such a riot.

Well… I will let you know all that happens with everything.  Hope everything is well and good in your area!  I just realized that Halloween and the rest of the holidays are basically around the corner.  Gosh… this year is flying by so fast!

–       Fallon

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