Please help SAVE MY LIFE!

November 30, 2013

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Well… it’s officially the holiday season with the passing of Thanksgiving.  I can’t believe that the holidays are here already.  Before you know it, we will be ringing in the New Year and it will be 2014.  But now that Thanksgiving has officially come and gone, the holiday season has officially begun.  Not only has Chanukah started already, which is much earlier than usual and will not be this early again until 2070, but I truly believe that once the turkey is eaten and the holiday has passed, it is now truly the “holiday” season.  That is why Christmas carols start to be played on the radio, Christmas lights start to get put up in addition to Christmas trees, and of course I change my ringers on my phone to fit the season as well.  I usually always have the same ringtone this time of year as always because I have this on favorite song that has been my favorite ever since I was in diapers.  I have been an avid fan of “Grandma Got Run Over by a Reindeer.”  I don’t know what it is about this song, but I just love it!

Now that the holidays are here, I want to be one of the first to wish you “Happy Holidays!”   I am not expecting much for the holidays because I know (and was also already told) that there are no gifts this season.  We just don’t have any expenses that can be spent on gifts. Buts that’s ok.  I really don’t want anything anyway.  I rather my parents use the money where it is much needed.

What I really want, I can’t really pay for anyway because it is just too expensive and just not attainable without the help of others. I am not asking for anything major …but I am just asking for 3 small gifts. All I want for the holidays is a chance to “live,” which means having just 3 simple things.  First, I need donations because the treatment I need to save my life is just so expensive that we cannot afford alone.  Second, I need kind people to spread the word of my site so that the word gets out!  Otherwise how else are people going to know about this?  Finally, I need prayers.   Life is like an ocean and sometimes a life preserver needs to be thrown out in order save someone overboard.  Therefore, I am hoping that through the prayers and donations, I may get the very best holiday gift that can exist!

I am really doing horrible and I really hope that my holiday wish comes true because if it doesn’t, I fear that I won’t make it much longer.  I am rapidly deteriorating and to be quite frank with you, I have just went to the doctor today and even the doctors are saying that even though they are taken back that I have managed to survive and linger this long, they think that my “luck” in this matter has ended.  They said there is only so long that a person can last like this (i.e. without nutrition) and my time is up.  My body is literally on its last breath of steam and unless it gets rejuvenated or something, they don’t think I am going to make it much longer.

I have been having a very hard couple of weeks, especially lately, and things just continue to worsen as time passes. I just went to the doctor and I didn’t even receive “good” news.  Then again… when do I ever receive “good” news?

1147700_10100974888846920_1307020085_oFirstly, let me tell you that I am one week out of surgery and I already have to go back into the operating room.  Of course I needed more surgeries besides what I had last week such as the transplant, surgeries for my stomach, ketamine comas, etc. but it turns out not that my jaw and teeth further crumbled.  As I stated in previous writings, I suffer from osteonecrosis, which is when the bones are literally dying.  Anyway, when I had the operation last week, I ended up having the surgeon fix my jaw, the osteonecrosis, 11 cavities, perform a root canal, etc.  It was over 6hours in length and it was not an easy surgery by any means.  Anyway, the day after surgery I started feeling another hole starting to occur. I told the doctor, but no one saw anything.  The thing with me is that I am so hypersensitive that I can literally feel anything and everything…even if it is microscopic.  I can tell you things that exist when it is not even visible to the naked eye and I really stun all the doctors by this because the stuff I feel because I am soooo incredibly sensitive is beyond belief.

Well, as it happened to turn out, I was right.  A few days ago… that little hole that I felt crumbled and now I have a huge gaping hole now that will be sending me back into the OR.  I can’t believe it.  Not only am I in excruciating pain because this has occurred, but it had to occur of course during a time when my doctor is on vacation.  Why does things always have to happen when your doctor is on vacation?  Thank goodness though that he gave me his cell number because even though he has been on vacation, he was still able to be contacted and therefore, when I told him what has happened, he told me that he want to see me first thing Monday morning (since he is returning then) and in the meantime he sent me to another doctor to perhaps see if something can be done in the interim to hold it up.  My mouth is literally disintegrating before my very eyes.

So… I will know Monday the exact plan of action, but it is more than likely (basically guaranteed) it is back into thee operating room for me.  To make it worse, I have just received my Chanukah present from the surgeon, as I received his bill alone from the surgery and it is astronomical. I don’t know how on earth I am going to afford it.  To think… now I need more surgery too, which means I am going to have more money on top of that too.  I don’t know how I am going to afford all of this.

To make matters worse, I am suffering worse than ever.  Not only has this surgery really impacted my illness and made it worse because it has been considered very “traumatic” to my body and anything traumatic has the potential to worsen and exacerbate my illness.  Therefore, my autonomic dysfunction has been totally out-of-control and I am suffering from severe fevers… not to mention the extreme pain to accompany it.  I never get a break from any of this, as it is nonstop 24/7.

The doctors are also afraid because not only have I had an exacerbation of my illness, but the fevers are worrying them as well because fevers are not a good sign.  They were always worried about the dead bone bacteria getting into my bloodstream and into my body because if I developed an infection or something, I wouldn’t be really able to fight it or anything.  Plus… with any little infection is something really major in me because everything is magnified.  So with me having this fever now, they are scared that the bacteria are spreading.  I have also been having chest pains a lot and they are scared that it could be attributed to this bacteria as well.  Instead of my throat feeling better each day afterwards after surgery because I was on a ventilator, I have only been feeling worse and worse.

So the doctors put me on an antibiotic to hopefully fight the infection, but they don’t even know if that is going to even work.  I am on so many antibiotics already because of my overall condition that they are really worried that it won’t even work.  After all, I take over 50 pills daily, and they include not only Methadone, Dilaudid, Ketamine, Morphine, etc. but antibiotics as well such as Azithromycin, Vancocin, Bethanechal… among others.  When you are taking so many antibiotics, it doesn’t look too good that the medicine that you need to work will work to kill the infection.  But, the doctors put me on Cipiro to try at least to combat the infection!

So… not only are we having that as a problem, but according to the doctors, I desperately need the multivisceral transplant as soon as possible.  I am in really bad shape, and my body is shutting down.  Unfortunately the only real cure for my gastric problems is the transplant, which entails having a very radical and risky operation that is actually the most dangerous operation that you can have.  I need to have a transplant that entails getting a new stomach, small and large intestine, pancreas, and liver.  It is extremely risky and dangerous.  However, I need it in order to live.

The problem is that I am too weak and sick right now to even receive it because we waited too long.  We didn’t have the funds available to receie it before and this transplant is extremely expensive.  Not only is the transplant itself expensive, but only a few hospitals (like 6) in the United States actually perform the operation and as a result, I would have to relocate for a bit and that would also cost money.  Since the funds were not available, I missed my window of opportunity and I got so bad that it is at the point that I need to get myself stronger before I can have this transplant because I would never be able to survive it.

So the doctor say that I really need to go to the hospital immediately because my body is failing me and I need to get strong enough to have that transplant done ASAP so that I can have a chance of living.  However, everything has to be in place such as the funds so that when they get me strong enough to have the transplant, it will be able to happen because we don’t have time on our side anymore.  I not only need surgeries to help me get stronger, but tubes as well.  I need TPN, which is when they totally feed me on tubes because the doctors don’t want me eating or drinking anymore.

My body has literally failed me that the doctors said that I am in need of urgent care.  My lungs are failing me and my respiration is in the single digits now.  I have such an elevated carbon dioxide level because of this and it is really difficult to speak at times because I tire easily because of lack of oxygen.  Even the doctors say that the volume of my voice has really decreased dramatically as a result of this.  In addition, I am aspirating like crazy and my lungs are filling up with fluid, which is compounding the problem too.  I am extremely thirsty and it doesn’t matter how much I drink because I just can’t quench my thirst.  I am so malnourished and I just can’t absorb things like I should be absorbing.  For example, when I went in for the operation, I literally gained 8 pounds over 6 hours because I can’t process the fluids.  Any fluid that I consume literally just adds weight onto me and I can’t ‘process’ it.  I have severe edema and the more I drink, the worse it gets.  I constantly feel like I am drowning in my fluids and you can hear me gurgling.  It is really scary.

The doctors said that they really don’t want me drinking and eating anymore.  But of course you need to do that in order to survive.  In order to accomplish what the doctors want, I need tubes placed in me.  I need a central line, as well as TPN immediately.  However, the problem rests that it isn’t such a simple procedure, especially with my illness.  I need specialized care and I need ketamine along with it.  I need the ketamine because it is like a magic drug in that it hopefully will stop the spread of my illness when I have this because anything that is considered ‘traumatic’ (which includes even a needlestick) could spread or exacerbate my illness, which is something I definitely can’t afford especially when it is already spreading like a wildflower.  It will also calm everything down afterwards and make it more tolerable since I am so hypersensitive and in extreme pain.  Even a basic IV line is excruciatingly painful to me and they can’t even run it with fluids (even saline) because I can feel the saline going through my veins and it actually burns it up.  It is horrible.  Plus, with all my other complications, there aren’t a lot of hospitals that are even able or even willing to be able to care for me.

airplane-emoticon-jetTherefore, I really need to get to Mayo Clinic in Minnesota, Stanford Medical Center in California, or John Hopkins in Maryland as soon as possible to have this done. These centers are where my specialists are located and where they are able to perform this procedure.  However, like I said before… it isn’t exactly located around the corner and it will of course cost a lot of money, which is something that we don’t have at the current moment.

SmileyFace_doctorI just went to the doctor today in fact, and we really got bad news.  The doctor confirmed how bad things really have gotten and how badly that we really need to get to these hospitals as soon as possible.  However, my dad knows how impossible it really is because of the lack of money and he tried everything to see if perhaps the doctors here can do it.  It isn’t like we are in a hospital that isn’t ranked highly in the United States either.  We were going to a top-ranked hospital.  You would think that going to a hospital like Mount Sinai in New York would be able to accomplish doing this kind of procedure, but unfortunately they couldn’t.  My doctor kept telling my dad that there really wasn’t anyone here in the New York area to perform the needed procedures that I needed and therefore I really needed to go to the other hospitals. However, my dad didn’t want to admit that he couldn’t help me and he kept pleading with the doctor to ‘ask’ around.  It got to the point where I just told the doctor to please just ‘yes’ him to death that you will ask around even though we both knew that there was no way possible it could be done here.  The doctor said he wouldn’t even try it here because if I had a flare-up or a reaction, we would be in big trouble because the needed supplies, doctors, equipment were not here.  We would be at a great loss.  That was why I needed to be in a hospital that had all this stuff and unfortunately it was in a place that cost a lot of money and not located locally.  My dad said, “they have to try and learn at sometime… so let them do it now.”  But the doctor said, “Yeah, they need to do it on someone to learn, but they don’t want to kill the person in the process.”

In addition, after speaking to the doctor today, we pretty much concluded that I have the bowel obstruction or a twist in the colon.  I definitely need this taken care of as well.  Thank goodness I have been able to last this long.  They said that the reason I have been able to last this long was because my colon is so dilated that even though there is a blockage and it is possible twisted, it still is able to get oxygen through so it isn’t completely necrotic.  Yet, it needs desperate help.

The doctors also stated that another part of the reason that I have the severe gastroparesis and I need the transplant, as well as why I have the blockage, is because I have a pseudo obstruction.  It means that the small or large intestines lose their ability to contract and push food, stool, and air through the gastrointestinal tract.  Usually surgery can correct this problem and remove the portion that is affected, but the problem with me is that my problem is so widespread that it affects the entire system.  Therefore, that is why it is imperative that I receive the transplant and soon too!

images-1Something has to be done and done quick to because it is so painful to have this condition.  The pain associated with gastroparesis is unimaginable.  I am so thirsty and hungry and yet… if I eat anything or drink anything, the pain is made even worse. I have nausea and vomiting all the time.  In addition, I can’t go to the bathroom and when I do… it is only mucous and it is very foul smelling… like rotten eggs. It is like I am ‘fermenting.’  The doctors say that since nothing is moving, I am literally like rotting inside.  It is extremely dangerous because not only are things remaining inside me longer than usual, but I can get really sick from it because there is so much bacteria due to the stuff “rotting” inside me.  In addition, my medication isn’t being taken out of me either because of this condition, which can lead to toxicity.  So… there are so many reasons why this transplant is a necessity!

imagesSo… Our hands are tied until we find the funds to come up with making the trip to these hospitals.  That is why I am pleading to have you spread word of my website.  I hate to sound like a ‘beggar’ or a ‘crier’, but I really don’t want to die and I am literally running out of time.  There is only so much time I can linger like this and it appears that my time is up!

To make matters worse, I also need major heart surgery.  With everything happening, my heart rate is also dropping to a rate that is way too low.  My blood pressure is also very non-existent because it is so incredibly low.  The doctor even saw today how bad my autonomic dysfunction has gotten.  He said that I really need a pacemaker as soon as possible.

You would think that a pacemaker wouldn’t be such a major procedure, but in my case, you are talking about major heart surgery.  I not only need the surgery, but they literally have to open up my entire chest.  They cannot just place the pacemaker under the skin like they would do in a regular person.  Instead, they have to literally open the chest cavity and place it inside… below the ribs and muscle because of how small I am and with all the complications that I have.

I desperately need this done because not only is my heart rate extremely low (like in the low 30s), but anything can happen especially with the autonomic dysfunction being so bad.  Therefore, they are hoping that this might also serve as a ‘protective’ mechanism as well.  However, we also run into the same problem as the other surgery that is needed… I need to have it done at one of those hospitals I listed above because I need ketamine during the operation (which is no big deal), but would need to be placed in a ketamine coma afterwards in order to get my body adjusted too everything and to get everything to settle down.  That is where the problem lies because no hospital really has the means or capabilities to do this because they are not really known to do this.

My whole body is deteriorating.  Not only am I being told that this is all happening, but also I can feel it.  Like I said before… I am so hypersensitive and therefore, I feel everything and it is magnified too.  So any little minor thing is something major to me.  Not only is the autonomic dysfunction out of control, but I can’t breathe, I feel like I am drowning in my fluids, I feel like someone is sitting on my chest, and I feel like my heart is being stretched in all different directions.  I am also in so much pain 24/7 that I can never catch a break.  Is this ever going to end?

I really feel like I am against a clock.  Everything is just continuing to worsen and I am barely hanging on. After speaking to the doctor today I desperately need help.  If you can please do anything to help… I would really appreciate it.  Like I said… there are 3 simple things that I want for the holidays… prayers, donations, and spreading of my website!  It is really imperative that that I receive help because not only do I need it for this particular treatment, but I need it for my overall treatments as well because we are basically not able to afford anything.  Despite all the cuts that we have made, we are having trouble affording any and all medical bills, my medications, doctors, traveling expenses, etc.  Therefore, I would be extremely appreciative if there is anything that you can do. As for my family and me… our hands are tied.

Screen Shot 2013-11-30 at 1.44.40 AMI tried thinking of different ways of fundraising, but I am totally at a lost.  I am way too weak and sick to basically do anything, so if there is anything that you can do, I would really appreciate it.  I made a joke with my dad and said to him that we can dress him up as Santa and he can play Santa for the day.  After all, I told him that all his eating for the year could be good for something.  I told him that he doesn’t look the part for no reason whatsoever.  But of course he didn’t take me seriously and he of course didn’t think I was funny. I thought it was a cute and funny idea because after all, he would make a cute Santa with his belly and gray hair.  I thought that maybe after I showed him the picture I made of him dressed up as Santa that he would think twice and also think twice about his eating habits because I really want him watching what he eats since he really needs to lose weight.  I am really worried about him because he needs to lose weight since he is so overweight.  However, with all the stress and everything… well… you know how it goes.  I kept making him promise me that he will lose weight, but as much as he does… it hasn’t happened.  I really don’t want anything to happen to him because he means way too much to me.  I don’t know what I would do or how I would even live without him!  Just like he says that he “can’t live without me,” I can’t live without him!

1417762_10100979529317380_1900717993_oI really have been trying to keep myself occupied and trying to keep my mind off of things because if I did nothing… I probably would drive myself up the wall with everything that is happening.  I have been really weak lately and unable to move.  I spend countless hours on the couch.  Thank goodness I have my animals… Max and Missy take turns keeping me company and “babysitting” me.  I have my Max to watch and stay with me during the day, whereas my Missy I with me during the night.  If I didn’t have them… I don’t know what I would do.  They are like my best friends… especially when you feel like you don’t have anyone because so many people have walked out on you when you need them most.  You really learn who your true friends are when you really need them! In addition, they really cheer me  up as they can do the funniest things.  One day I even caught Max reading a magazine!

884303_10100984039638660_1516805825_oMax is the best dog.  He was supposed to be MY dog, but he actually became my dad’s dog.  He is really the only thing that relieves my dad’s stress.  In fact,  I think when he comes home from work, he is more excited to see Max than anyone else.  No one is better than Max and Max can do absolutely no wrong.  Max has my dad wrapped around his finger in the sense that he can get my dad to give him so many treats and take him out for so many walks!

So to keep myself as “normal” as possible and to keep myself as occupied as I can, I have recently been reading a terrific book called “The First Phone Call From Heaven,” which is written by Mitch Albom.  It is simply a magnificent book and I really recommend it.  He is the same author that wrote the well-known books known as “Tuesdays with Morris” and “The Five People You Meet In Heaven!”

I have also been playing some apps.  I finally found an app that I really want to get, which is a rarity for me because I never find one that I am so inclined to getting.  It is called “Mickey’s Castle of Illusion!” However, the problem is that it is $10 and I absolutely refuse to pay that much money for one!  I mean… Even paying $1 is a lot for an app… let alone $10.  I don’t know how on earth it could possibly cost that much money.  I am really hoping that the price comes down, but who knows?  Of course it isn’t a necessity and  I can do without if it doesn’t.  After all… even though others have said it is a “great” game and it has gotten good reviews… my luck is that it will probably stink.  There is nothing worse than spending money on an app and then after you download it and play it once… you find out it really stinks.  I can’t imagine how much money people waste because it “appears” to be a good app until you actually use it and unfortunately once you buy it… you are stuck with it!!!

Well… I guess that is enough for right now.  I am not really feeling too well, but just wanted to write a little.  Hope you had a really terrific Thanksgiving and I hope you are enjoying the holiday season.  Until next time!


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November 22, 2013


Just wanted to write and update you to the very latest because things aren’t going too well. I want to let you know that I am out of surgery, which is really good, but unfortunately I have some bad news to tell you.

As promised, I am writing to let you know the absolute latest of what is happening.  I went for the surgery and the surgery was very long.  It lasted over 6 hours and ended up entailing repairing my jaw, osteonecrosis, fixing 11 cavities, and 1 root canal.  It was extremely long and complicated.

Even before the surgery even started, we were faced with lots of problems.  It turns out that a few hours before the surgery was supposed to occur, my jaw and bones crumbled due to the osteonecrosis.  I knew something was going on prior because I saw a whole occurring, but I honestly thought that I would have made it into the operating room.  But unfortunately, I didn’t make it.  I was just thinking about surgery in the morning, and then all of a sudden the dead bone went. I had a huge gaping hole in my jaw and the nerves were all exposed.  All this stuff was supposed to be worked on during the operation and yet, it all crumbled hours beforehand.  We really had a crisis on our hands because not only did I have a gaping hole in my mouth, but I also had dead bacteria leaking into me.

The surgeon was very nervous about having the dead bacteria enter my bloodstream and body and therefore, he really wanted to contain it as much as possible.  The goal was that when I went for surgery, everything would be taken care of and the surgeon would be able to contain the dead bacteria from spreading.  However, now that all this stuff crumbled, I had all this dead debris being swallowed and as a result, I swallowed and spread the dead bacteria too.  What a disaster.  To think… the operation was only hours away too.

1410684_10100974888851910_2122250014_oWe thought about calling the surgeon, but at 1 AM, there really wasn’t much that he could do anyway.  He would only say that he would take care of it when he saw me in the morning anyway.  So, we decided on letting the surgeon sleep so that he wasn’t tired during the surgery and called him first thing in the morning to give him a heads up.  After all, we didn’t want a bushy eye surgeon in the operating room!

Well, after we called the surgeon, they advanced the time of the surgery 2 hours because of the circumstances.  I guess 2 hours was better than nothing, right?  Anyway, it was a very long and complicated surgery.  Like I said, they did massive amount of work.  They had to do work on my jaw, the osteonecrosis, filled 11 cavities, took care of 1 root canal, and some other things. They also discovered that the roots of my teeth are even coming through on the palate of my mouth. So it is not just bones coming through, but roots as well. It was a real mess inside.  My dad was getting really nervous because it was taking so long.  From start to finish, I was under general anesthesia for over 6 hours.

When I started to wake up in the recovery room, I had such a bad reaction because my autonomic dysfunction really took off.  It turns out that because they had to do so much work and because I was bleeding so much, they had to give me lots of fluids in the OR. In fact, I happened to gain 8 pounds just in fluids, so you can imagine how swollen I really was.  Well, as I have said in the past… any bit of liquid consumption that is above my “normal” requirement that my body feels is “normal” triggers off my autonomic dysfunction.  It is really annoying because everything basically triggers it the autonomic dysfunction off and when that happens… it is absolutely the worst!

So like I said since I was given so much fluids in the OR, the autonomic dysfunction went haywire and I was breaking into cold sweats, pain, etc.  I kept sweating profusely and other symptoms were occurring.  It is the absolute worst thing that can happen when this occurs.  I ended up tearing off the hat that they made me wear in the OR because I just couldn’t cool down.  That was another problem I was having because of the autonomic dysfunction.  I kept going from being unbearably hot to incredibly cold instantaneously.

What time we had in the hospital!  I had an incredible team on top of me, but unfortunately, they were up against a very complicated problem with me.  My blood pressure kept dropping very low and my pulse was in the very low 30s.  The machines kept beeping because of this warning.

They had given me a PCA machine in order to help with the pain and the team was also given special medication that they were supposed to give to me if they ever thought that I was in significant distress since my blood pressure and pulse were so low.  They were really afraid of the pain meds suppressing my rates even more and as a result, they were scared that they would drop even more.  So they had medication on hand to counteract the meds being given just in case.

Nothing was helping with the pain though.  I was in so much pain and it was totally out of control.  They gave me Dilaudid and it wasn’t doing much.  So they gave me Torredol, which helped a bit.  But I was in astronomical pain.  I desperately needed help!  I was in so much pain, but they also had to be careful because my heart and respiration rates weren’t doing too good.

1147700_10100974888846920_1307020085_oI was so scared and in so much pain.  Thank goodness that my dad stayed by my side.  I felt so bad for him because all he had was 1-hour sleep.  He tried anything and everything to keep me entertained and to keep my spirits up.  He tried making me feel better too.  But my dad hates just sitting around.  So instead of just sitting and doing nothing, he thought it would be funny to snap pictures of me because my hair looked horrendous because it was sticking up from the autonomic dysfunction and because I kept having the sweats like you wouldn’t want to believe!

After spending some time in the hospital, the doctors released me out of the hospital because they said that there really wasn’t anything that they could do. They were not equipped to handle my condition, as I was too complex and complicated.  In addition, they were really fearful of what was happening to me.  They gave us some really bad news and told us that we really need to get help immediately or I am going to die soon.

We knew that I was sick and suffering, but we honestly didn’t know things were so bad.  But, by going for this surgery, we learned that things are really horrendous and unless something is done and done quickly, I am not going to make it much longer.

I really need medical treatment and a miracle immediately. I just found out that besides the latest news, which was that I was in the early stages of having liver failure, I am now suffering with having my lungs and heart really failing now too. They said my respiration is really bad and in fact is in the single digits.  Respiration rates are supposed to be above 20.  But mine is less than 10.  That shows that I am barely breathing and when I do breathe, I am taking very shallow breaths.  It is causing me to have a very hard time talking and that is why a lot of people say I speak very low.  It is also the reason why my carbon dioxide levels are elevated in my blood.  I cannot get enough oxygen into my cells.  I’m filling up with water and fluids in my lungs and therefore, I am aspirating like crazy and having a hard time breathing too. Even when I cough, I cannot clear the secretions out of my lungs.  When the doctors listen to my lungs, they said that they sound like “crap!”

In addition, I found out that my heart is really failing me too.  My pulse is very low, as it is only in the 30s and my blood pressure is next to nil.  Because my heart isn’t doing well and pumping sufficiently, I am filling up with fluids.  That is partially why I am filling up with fluids in my lungs, which I just described.  I am also having a lot of edema in my legs.

1403398_10100974944106180_377283433_oWhen the doctors started telling us how bad I have gotten and the latest news, my dad kind of didn’t want to hear it. He was kind of in denial at first by saying it was the pain medications causing all this because pain medication is known to cause respiratory suppression and decreased heart rate.  However, the doctors then explained to him that it is true that pain meds do cause this, but what I am experiencing goes far beyond that.  After my dad was told this, there was no talking to my dad for the next couple of hours.  He was totally distraught and in disbelief.   I never saw anything like it.  I never saw my dad act like that.  He was so quiet and wouldn’t say anything.  He has always been my superhero and unfortunately he couldn’t help this situation.

I desperately need a miracle. The doctors said that I desperately need treatment and to seek my medical team at the best hospitals that are able to handle my condition.  They said, “I really need to get to either the Mayo Clinic in Minnesota (which would probably be the best) or Stanford Medical Center in California or Hopkins Medical Center in Maryland as soon as possible.”  However, the problem is that all these places cost money, which is something we are kind of short on.  These hospitals (especially the Mayo Clinic) do not take our insurance and we have to worry not just about traveling expenses, but the cost that we are going to accrue with just being there in addition to all the hospital costs (which if we go to the Mayo Clinic especially would be all because we are not covered).  Yet, these hospitals are like the only hospitals that can handle me in the United States and I desperately need to get to them now if I am going to live.

I desperately need to have tubes put in me as well as to have the multivisceral transplant (stomach, small and large intestines, pancreas, liver) and they can only be done at these hospitals.  However, it is extremely expensive to go to these hospitals and we cannot afford it on our own.  Therefore, we are pleading and begging with you to please donate or please spread the word that donations are very much needed because I desperately need to get to these locations to seek medical treatment.  We have paid for my disease for many years, but the well has to dry out eventually.  Despite all the cuts we have made, we can no longer pay for all this on our own.  Please… if you can… please donate and please spread the word that donations are very much needed because my life is literally depending on it.  I am really suffering and walking a very fine line.

We have been thinking of various ways of raising funds, but if you can think of any ways, please email me at femirsky@gmail.com and please let me know. If you can think of any way of raising money, I’d appreciate it.  I was thinking about giving out AWARENESS bracelets for my cause to everyone who donated.  What do you think? I am really reaching for help, so any feedback would be much appreciated.

So… that is the absolute latest.  I am in so much pain and really suffering from the surgery.  Not only am I battling with the actual pain from the surgery, but from the autonomic dysfunction that it has stirred up.  I keep wondering what I did that started all of this.  I keep remembering times when I was younger and able to eat and drink whatever I want.  Now I cant eat or drink anything because my body rejects everything and it triggers off the autonomic dysfunction. I suffer in excruciating pain 24/7 with the most innocuous touch causing me the most severe pain.  Never did I ever think my life was going to end up like this.  I keep thinking that all that I did in my life growing up (all my studying and dreaming of becoming a doctor), all my ambition, all my dreams were all wasted because nothing has amounted from all my hard work growing up or all that I experienced and worked for.  When did my body start this?  I feel like it just happened overnight!  I really don’t know how much longer I can take of this.

smiley-sadSometimes I just wish I can close my eyes and move on because of all the suffering that I am undergoing.  I can’t take the pain and suffering anymore.  I hate what is happening and I hate what I am doing to my family.  It isn’t fair to them.  They have given up too much and they certainly don’t deserve it.  They are in so much debt because of me and can’t afford diddly.  They haven’t been out to a restaurant for dinner in a long time because I can’t go out and eat, we haven’t been on a family vacation in over 8 years, we don’t do anything for fun, etc.  They have literally given up their lives and have been staying confined in the house for the most part (besides working like hounds trying to get whatever money they can bring in) and it isn’t fair to them.  It isn’t fair to me anymore to have to undergo this torturous pain physically or emotionally. I hate not only having to feel this most unbearable pain 24/7 that I don’t get a second of relief, but I hate watching my life like this and just continue to deteriorate.  I hate watching others move on and feeling alone, and as the song “Dust in the Wind” goes… I hate watching all my dreams pass before my eyes with curiosity.  But then again, I am just dust in the wind too and I will disappear as well because all that lasts forever is the earth and the sky.  I just don’t want to disappear until I have experienced all that I have set my sights on, as I have such a laundry list of things that I have not yet accomplished and want to still do!

Christmas-Chimney-holiday-christmas-xmas-smiley-emoticon-001166-largeThe holidays are just around the corner and the best gift I can be given is a chance to have my life back.  Of course that is dependent upon donations and miracles so if you can please donate, spread the word, and please say a prayer… hopefully my holiday wishes will come true!  If I don’t speak to you beforehand, please have a wonderful Thanksgiving!  Even though I will not be able to enjoy the wonderful foods that everyone enjoys on that special day, I will be especially grateful that I will be able to spend the day with my family!turk2

Well… I will keep you posted and let you know all that is happening.  Please continue to pray!

– Fallon

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November 19, 2013


I just wanted to write a little message now to let you know the absolute latest, as the big surgery is in the morning.  Please say a HUGE prayer for me because I am desperately going to need it.  It is definitely going to be a long day in the morning, but hopefully all will go well in the end.  However, I do want to let you know that we have had a HUGE emergency occur within the last hour or so.

Thank goodness that I am having the surgery today though because we have a real emergency going on now, as something really unexpected occurred.  Some might say it happened for a reason… because I was thinking of canceling the operation, but either way… I am really freaking out.  I was thinking about canceling the operation because as you might already know, this operation is not covered by insurance.  As a result, we have to pay out-of-pocket and we cannot afford it by ourselves.  We have tried to fundraise, raise money, etc. but nothing has really occurred.  So… since all my treatments are extremely expensive and we are having extreme trouble affording them (despite all the cuts that we have made), I was really thinking about canceling this surgery as well.  However, now because of what has happened in the last 2 hours, I don’t foresee that happening.  In fact, it is literally impossible for that to occur.

hospitalI was just thinking about surgery in the morning and then all of a sudden the bone in my jaw crumbled.  I have a huge gaping hole in my jaw now and my nerves are all exposed.  The freakin osteonecrosis and dead bone went.  It was all supposed to be worked on during the surgery and it crumbled now… beforehand.  What timing!  You know?  A few hours too soon!  Obviously it couldn’t make the final hours.

So now I don’t know what is going to happen.  I am really scared. I am scared for the surgery tomorrow, scared for what is happening now that I have this huge gaping hole in my mouth, scared that I am going to need more surgery now than before, and scared for the amount that this is going to cost me.  All I keep hearing is “ca ching ca ching” because I know that this is definitely going to increase the cost of the operation and I have no idea how on earth I am going to afford it, especially since I couldn’t afford before all this occurred. I bet this all occurred as a way of ‘forcing’ me into the surgery because now I have no choice but to undergo it.  Even though I was thinking about canceling it, there is absolutely no way I can avoid it now.  Thank goodness though it happened now though with surgery in a few hours.  It could have happened way back when surgery wasn’t even scheduled and I would have to wait for some time to first schedule surgery and for everything to get organized.

I am so scared and in pain though and wish that it was all over with already.  Not only do I have the suffering from all the pain that I had already from the osteonecrosis, the nerves being exposed, the bones, the teeth because it is still occurring even though part of it did ‘cave’ in, but I now have this huge painful and gaping hole in my mouth with even more nerves being exposed.  I also have more dead bones protruding through where the breakage occurred along with the jagged edges because it of course wasn’t a ‘clean’ break! The pain is just out of control.  I am normally in such a lot of pain, but now that this has occurred, I am just in such an enormous amount.  I am on so much pain medicine do, which includes Morphine, Dilaudid, Methadone, Nucynta, Ketamine, etc. and I am still suffering this much.  I can’t imagine (nor do I want to) what it would be like if I wasn’t on all these drugs.  Thank goodness for that.  I just can’t believe that it is happening to me.

You know what else worries me?  I am also very nervous because I am scared of what is going to happen with getting “sicker” because I have all this dead material floating through my body!!  I have all this bacteria and dead bone and dead cells that are leaking into my body now, and I swallowed so much of it.  My body can’t fight off diddly.  I know that was one of their biggest fears of the surgery was the infection afterwards that I possibly could have gotten.  Now I have all this looming in my body because they were hoping to keep it all prevented and contained.  Obviously that didn’t happen. The doctors were very afraid of me getting an infection from all this dead bone and such because I can’t fight anything due to my complicated condition.  I can’t absorb medication and therefore, if I were to get sick, I would have basically no way to fight it.  In addition, I am extremely hypersensitive and everything is magnified for me.  The simplest infection is huge and disastrous for me.  So this can be a real problem for me.

SmileyFace_doctorThe doctors knew that getting an infection from this dying bone was a real big risk because dying bone carries a huge chance of getting an infection.  However, they were hoping to diminish the chances of that occurring by containing the infection and dead bone as much as possible because they were going to remove it themselves and it wouldn’t spread.  However, now that the whole thing ‘caved’ and ‘collapsed’ I literally have all that bad stuff floating all throughout my body now.  It continues to come out of the bone as we speak because I have no way of stopping it.  In addition, the dying bones that caved in were swallowed and all that dead matter that could have been infectious is now in my body.  My body literally has no way of fighting all this off, so I don’t know what is going to happen.  I guess I will see in a few hours.  I guess I will need lots of antibiotics and prayers, and all I can do is hope for the best.

When all this occurred, I immediately called in my dad.  I woke him up from his sleep and he had no idea what was going on.  Of course he quickly snapped out of his sleepiness once he realized what was wrong.  I asked him if I should call the doctor, but he said that I shouldn’t because it can wait until I see him later today.  After all, I will be seeing the surgeon in a few hours and there really wasn’t anything he could do right now anyway.  My dad told me that the surgeon probably would say that he would “see it and take care of it when he sees me in a few hours.”  My dad was probably right and therefore, I decided that I would just hang out and wait it out.  I also didn’t want to call him because it was after midnight and he needed his sleep.  After all, he needed all the rest he can get for the big surgery today because it is going to be a very long and intense day.  We wouldn’t want him to be ‘sleepy’ in the operating room or “bushy eyed!”

So here I am… Just waiting for morning and for my day to begin.  I am getting such a huge headache and I feel so horrible.  My entire head and jaw is having spasms and it feels like my entire right side is being clenched down. My entire right side of my head down my neck too feels really weird, heavy, and in pain.  I don’t know what is up.  It is probably related to all the dead bone that broke off and the gaping hole that is in my jaw.  But I will just thank my meds right now for handling the pain because I am sure it would be a lot worse if it weren’t for them.  Like I said before, I am not on no little amount either!

So I am all packed basically and ready for the hospital.  The surgery is supposed to be over 6 hours long.  Hopefully all will go well.  My dad is supposed to be spending the night because he is supposed to be keeping “watch” over me since I will be under ketamine.  Since the doctors and hospital aren’t really familiar with my condition and I can’t be treated like a regular patient, my doctor suggested that my dad stay with me and instruct the nurses and doctors about me when they came into the room so that I could get the necessary care that I needed.  After all, the slightest move could cause me extreme pain and possibly spread the disease too.  I need a lot of care too and attention because of my complicated condition and in this way, my dad can make sure that I get the care that I need.

My surgeon is simply wonderful!  He has been in contact with all the specialists in the hospital to ensure that they are all familiar with my condition and me because of how complicated I am.  The surgeon knows that they are going to have their hands full as it is, so he wanted them to be as prepared as possible.  He also knows that they are going to experience things that they never did before, and therefore, he wanted to try to minimize the amount of surprises as much as possible.  But I bet no matter how many times he had meetings and explained things to the other doctors, they will still freak out and such because they did so when I went for pre-op.

My surgeon has already contacted the hospital and already set everything up in place.  Usually they start pain management when you get out of surgery and onto the floor.  However, my surgeon has already made arrangements to have it straight from the operating room.  Of course I will be under ketamine when I have the operation and I will have it afterwards as well because not only will it help with the pain, but hopefully it will also stop the spread of the disease as well because we all know that it is very possible for the disease to spread with this surgery! After all, the simplest trauma can spread my illness and this is MAJOR trauma!

So… I guess that takes care of everything.  I downloaded some apps to try to keep me busy.  I am surely going to miss my pets.  They are my absolute BEST friends.  I know Missy is definitely going to miss me because we spend all night together.  She is the BEST!

I went for pre-surgical clearance today just to make sure that I was “ok” to go for surgery.  It turns out that not only are my bloods bad like usual, but I now also have an elevated carbon dioxide on top of all the other irregular values.  My body just isn’t cooperating and it is just shutting down.  So now it appears that my cells just aren’t getting enough oxygen! I have been having trouble breathing, as I have been aspirating a lot… especially lately.  In fact, when I went for pre-op testing, the doctors were freaking out because they said my lungs sounded like “crap!”  I am filling up with fluids and the more I drink, the worse it gets.  The thing is that I am so thirsty too and by the end of the day I can barely breathe at all because my lungs are so filled up.  I am also getting a lot of edema because of this.  So… me having difficulty with my lungs is really manifesting and showing itself now in other ways.  I just feel like I am drowning in my fluids.

The doctors have said that in order to help this situation, I really need my GI system to start working, but of course that isn’t going to happen.  My GI system is basically too far-gone.  Therefore, I need a multivisceral transplant, which includes getting a stomach, small and large intestine, pancreas, and liver.  However, it it’s extremely risky and dangerous, as it is the most dangerous transplant you can have.  However, it is very expensive and of cost we cannot afford it on our own.  Therefore, we are really desperate for donations because otherwise there is no way that this is going to occur. I am literally dying and my body is shutting down.  I desperately need this transplant in more ways than I can tell you.

The doctors also want me to stop eating and drinking because I am filling up with fluids.  This way if I stop, eating and drinking, I will stop filling up with fluids.  However, you can’t do that unless you have another way of getting nourishment because otherwise you will die.  Therefore, I really need to go to either Stanford Medical Center in California, Mayo Clinic in Minnesota, or Hopkins in Maryland to get tubes and a central line put in. However, that is very expensive as well, and again… we can’t afford it without help from others.

So my life is basically resting in the hands of the rest of the world because we can’t afford it ourselves.  We have been paying for my illness for so long and unfortunately, the well had to run dry sooner or later.  Well… the time has finally come that we can’t afford anything anymore and despite all the cuts that we have made (even the cuts in my treatments themselves), we cannot afford anything.  It is just way too expensive.  We have difficulty paying for the treatments that I need, the medications that I take because I takeover 50 pills daily, and the doctors that I see.  Not only are all these things extremely expensive because the copayments add up very quickly and they aren’t cheap either, but they aren’t all ‘covered’ either.  That is why I desperately need help from others.  Sorry to sound like a crier or a beggar all the time, but I just need so much help and I am suffering so much.  I really don’t want to die and I know for that to not happen and for me to continue to receive treatment, I really need the help of others.

I also heard from my bone doctor today.  I have severe osteoporosis and the doctors are always afraid that I am going to get a life-threatening fracture.  In the past, I have been taking a certain medication that was supposed to build up bone, but unfortunately I haven’t really been having a good result.  In fact, I have been still losing bone.  In addition, the doctors also think that this drug has been also contributing to my osteonecrosis.  Therefore, they will not give me the drug anymore because they don’t want to do anything else to make my osteonecrosis worse.  Even though there isn’t even a definite answer that it is making it worse, they don’t want to even chance it.

When I spoke to the doctor today though, the doctor told me how bad my bones were doing.  HE told me that my bones were doing so badly, and basically it couldn’t get any worse. He said that I am in the worst shape that he has ever encountered.  I was really upset by this news and really wanted to do something about it.  I was really scared about it because I knew how bad having weak bones can be and I knew how much the doctors always made a big deal over it because they were scared I was going to have a life threatening fracture or something.

However, the doctor said that there really isn’t anything else to really do for my bones. He said that I was on the best treatment that there (and I was on other thing beforehand), but unfortunately, it still never took. If that medication didn’t work, he said that he doubted that there was anything else that would work because that medication was far superior to anything else.  He said that I really needed to work on my GI tract because I have such severe malabsorption that it was also contributing to this.  My body is just deteriorating.  When is it going to turn around?

I keep wondering when my life is going to turnaround.  I have yet to get to live my life.  There is so much that I haven’t gotten to do and so much that I want to do.  It isn’t fair how I worked so hard in school and I had such dreams to become a doctor so that I could help others, but I never got to accomplish my dream.  It isn’t fair that I never got to ‘grow up’ like a normal person.  I never got to live on my own, get married, have children, etc.  I never got to travel the world and go swimming with the dolphins.  So many things that everyone gets to do, I never got to do.  I just want to live my life already!

50425444_400x400Well, the holidays are just around the corner.  I can’t believe how close they are already. Thanksgiving is next week and so is Chanukah.  Chanukah hasn’t been this early since like 1888 and it won’t be like this again for another 70,000 years.  I can’t believe that it is also going to be 2014 already.  Gosh… time is just flying.  Maybe I will get a gift this year of getting my life back!!  I can hope, right?  I hope I was a “good” enough girl so I get my wish!!  Hope that between all the holidays that I get it!!

1398476_10100973577105660_659891071_oSo… I guess that takes care of everything.  I downloaded some apps to try to keep me busy.  I am probably going to bring FALBEAR and PLUTO with me because FALBEAR goes everywhere with me and PLUTO was bought for me by a very good friend when he went to Disney.  In fact, when I got Pluto, Max (my doggie) was so jealous!  I took a picture of me kissing Pluto and you can see him just staring at me.  However, I don’t know if he is jealous that I am holding Pluto and not him or if he is just mad that Pluto isn’t for him!  I am surely going to miss my pets.  They are my absolute BEST friends.  I know Missy is definitely going to miss me because we spend all night together.  She is the BEST!

861001_10100973575663550_332377974_oWell… going to get going because have a big day today.  I wonder how long it will take for me to be able to eat (even the very few things that I do… my pops, ices, ice cream, eggs) after I go through with this surgery because I will probably me in excruciating pain afterwards.  After all, I am having a mega operation! I already packed a food bag for my dad.  Whenever I have a procedure or surgery or coma, I always do that for my dad.  I load him up with all these different kinds of foods so that he will be kept “full” and satisfied. This way he won’t starve. Also… I give it to him so that he does’t have to go away from the “waiting area” to get anything because I know that he won’t and I don’t want him to starve.  So I usually give him like all these nut mixtures, granola bars, fruits, etc.  I give him a lot and you know what?  He eats it all! By the time I go under and leave him, he is usually  done with his snack bag within the next 2 hours.  I always tell him to “slow down” with the eating but he never listens.

Well…Please say a prayer for me! I will let you know how it goes!  Until next time!

– Fallon

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November 15, 2013


I just wanted to write because so much is happening and I wanted tell everything that has been occurring since we are looking at surgery on Tuesday, if all goes well.  My life is just one chaotic mess and it is just snowballing out of control!

Well… I guess I should start with the biggest of all announcements.  I am supposed to be undergoing surgery this upcoming Tuesday, November 19th.  However, we are having a HUGE problem because unfortunately the surgery is not covered by insurance.  Don’t get me wrong, the insurance is picking up some of it (thank goodness), but they are not paying for a lot of other aspects including the actual surgeon and all that he is doing.  From going into the hospital for surgeries in the past, I know how expensive a surgeon’s fees can be.  I really don’t know how we are going to be able to afford it to tell you the truth.  Thank goodness the insurance company authorized a lot of the other parts of the surgery even though I have no out-of-network benefits because at least they are picking up something.  If they didn’t do that, I would have been left paying for everything including the actual hospitalization too.  But even so, it is still a huge chunk I need to come up with!

Therefore, I am hoping to still be able to raise enough funds to possibly help pay for this surgery.  It is extremely expensive and without help, I don’t know if I am going to be able to undergo the surgery because of the cost.  If you can please spread word that “help” is so desperately needed especially since we are running against the clock because Tuesday is basically around the corner… I would really appreciate it.  Gosh… sometimes I wonder what this world would be like if money didn’t exist.

So like I said… surgery is supposedly scheduled for Tuesday.  I am extremely nervous because there is so much that has to be done.  I can’t even believe how long the surgery is going to last.  When I asked the surgeon, he said that it would take 4-6 hours.  Luckily, dad should be staying with me the entire time when I am in the hospital instead of just leaving me there.  I mean…usually my dad will spend all day in the hospital with me and then go home at night to go sleep. However, when I go to this hospital, I am not supposed to be left alone because they are not exactly “familiar” with my illness and we need to have him around in case something should happen.  He is like my “mouthpiece!”

Thank goodness that I will be able to stay home for this surgery.  I can’t remember the last time I was able to have a surgery in New York… especially in Long Island.  Due to the complexity of my situation and how rare my condition is, my doctors are usually only found at top hospitals throughout the country such as at the Mayo Clinic (Minnesota), Hopkins (DC), Stanford (California), etc.  However, when it comes to the osteonecrosis and all that is occurring that I am having surgery on, I am lucky that I was able to find such a fine and wonderful surgeon in the area.

However, even though I am going to be able to have the surgery in the area, it has been really hectic around here.  The surgeon is extremely nervous because he knows how complicated my situation is and how much attention I need.  He knows how I can’t be treated like a ‘typical’ patient because the slightest innocuous touch such as a blanket or even an saline IV line can send me screaming in pain and into a huge crisis because of the severe autonomic dysfunction that I have. He knows that he and the hospital are definitely going to have their hands full and as a result, I have been fortunate to have such a wonderful surgeon that he has been having meetings with anyone and everyone in the hospital (from all the different specialists and anesthesiologists on my case) to talk about my case and to make sure that they are all familiar with what is occurring with me.  The surgeon knows that we are going to have our hands full as it is, he wants the whole entire hospital familiar with everything so that no real big surprises really arise because he is expecting that to occur with the territory as it is (so he is trying to minimize it as much as possible).

SmileyFace_doctorMy surgeon is so wonderful.  He has been having meetings with everyone to make sure that they are all as knowledgeable about me as possible and so that I am in the best hands possible.  He has also been making me undergo all this different kinds of testing because not only does he want to make sure that nothing goes unnoticed and that he is on top of everything, but the hospital wants to basically cover their butt because of how complicated and tough my condition is.  They are basically afraid of being ‘sued’ and therefore, they are trying to dot every “I” and cross every “t” before anything. You know?

I went for pre-surgical testing the other day and I saw how crazy everyone was there.  When I looked at my friend who took me to the hospital to have this done, he told me that the reason everyone was ‘freaking’ out over everything and pushing panic buttons on everything was because they weren’t used to seeing things like this.  Even though we are used to my illness and what is happening with it everyday, they are not and therefore they were afraid that something was happening and was freaking out.  We kept telling them that it was the ‘disease’ but they kept freaking out.

What a day pre-surgical testing was.  It really made me nervous about the upcoming surgery and glad that I won’t be left alone at the hospital because if they were freaking out over all that was occurring now, I was scared what was going to happen after the surgery when my disease would be all stirred up and causing so many problems and havoc in my body.  I can just see how crazy everyone is going to be.  As it was, they were freaking out because they couldn’t get my blood pressure because it was too low, my lungs sounded like crap because there was so much fluid in them, the discoloration, the amount of meds that I am on, etc.  In fact, they were so nervous that they even had me go for further testing such as more scans and such just to make sure that nothing else was occurring because of everything that they were encountering.  They didn’t even make me wait… as they personally called and got me in right away.  They even personally escorted me to all the further testing that I needed and waited for the results too so that they could have them ASAP.

But the surgery is scheduled for Tuesday.  It looks like it is all set providing that I get all the necessary clearances.  As I said before, I went for the presurgical clearance in the hospital, but I still have to go for the clearance with my medical doctor on Monday.  The biggest problem I think that they are going to have is the severe aspirations because I am really filling up with fluid.  I am having extremely hard time breathing and when they were listening to my lungs, they said that I sounded like “crap!”  The pulmonary doc did give me clearance, but the doc said that I have to remain as upright as possible.  However, when it comes to surgery, it is literally impossible to do this.   So… I hope that everything will go OK with that part.

The surgery is for the osteonecrosis, as well as because all the nerves are exposed and I also need work on my teeth as well.  I need so many root canals, so when they deal with the osteonecrosis and the nerves, they are going to deal with the root canals as well because I cannot have them done like a regular patient under novocaine because of my condition.  The novocaine just doesn’t hold me.  I can get over 5 shots and yet, it still won’t make a dent in making me ‘numb’ enough to perform the necessary work that needs to be done.

Like I said before though, I am going into surgery because of the osteonecrosis and because the nerves are all exposed.  Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The bone starts to die and may break down.  Therefore, I have my jawbone actually protruding through my mouth.  It is extremely painful.  I am also having the nerves worked on because I am in even more pain because all of them are exposed.  It’s a bit more complicated than this, but I figured that I would put it as this so it can kinda be understood.

yellow-happy-feet-mdI will also be having work on my feet during the time I am in the operating room since it has to be done while I am under general anesthesia.  So I will have one surgeon working in my upper half of the body and another in the lower half… not to mention all the other doctors and specialists that will be in the room because of my very complicated and complex medical condition.    After all, I am not the typical case that is seen everyday and can even rarely be found in textbooks and medical school and therefore, I am always put on “show” when I go to a hospital.  I should charge admission because if I did, I certainly could become rich.

In addition, I will have lots of specialists in the room to monitor me such as at least 2 anesthesiologists (as well as other specialists) because they really and they want to be ready to handle it if that should occur. After all, not only do I have this rare and complicated disease, but I have severe autonomic dysfunction and therefore, all bets are off as to what can and will happen.  The simplest and littlest move or touch can literally throw my body into a frenzy and cause a huge crisis in the OR.  After all… if there is one thing my body doesn’t like… it is that my body doesn’t like having anything mess with it. That is another reason why they are going to keep me on ketamine after the operation afterwards and as long as in a coma as possible because this way it can help with the after effects.

Besides helping with the after-effects of the surgery, the ketamine is also going to help with the pain of the surgery since it is going to be extremely painful. Surgery is painful for anyone in general… let alone someone who is already in excruciating pain, extremely hypersensitive, and everything that occurs to me is magnified.  The smallest needlestick is like someone sticking a butcher knife in me.  Therefore, with all the work that is being done during this surgery, we know this operation is going to be extremely painful for me.  So… hopefully the ketamine will really help.

In addition, the ketamine is going to be used in hopes of not allowing the disease to spread further during the surgery.  As the disease is really spreading lately like a wildflower, it is important to keep it at “bay” especially when it is known to spread when anything traumatic occurs to my body.  Surgery is extremely traumatic and therefore, it would pretty much be guaranteed that it will spread.  Therefore, it is hoped that the ketamine will permit that from happening since ketamine is an NMDA receptor that is supposed to help my illness and in a high enough dose be able to ‘reverse’ the disease (of course that amount is only attainable outside the country and is incredibly expensive).  I consider ketamine my “miracle” drug because I have witnessed some amazing things with it.  I have seen firsthand how the ketamine can really reverse my disease because one time I had come out of surgery and I couldn’t even stand up.  They rushed me immediately into a ketamine coma and after being in the coma for a bit, I was back to the way I was prior to the surgery.  That is why I so desperately want to receive the very high dose of ketamine out-of-the-country because I know that in a high enough dose, it could pretty much guarantee me that it can ‘cure’ me.  However, it is too expensive for me to pay for it on my own and therefore, it remains on hold until I get the necessary funds.  Hopefully my time won’t run out beforehand.

So… surgery is supposed to be Tuesday, which is basically around the corner.  I guess Thanksgiving will be put on ‘hold’ for me because I won’t be able to really ‘eat’ with all that is happening.  I can’t really eat normally because of the severe gastroparesis, as even the limited foods that I can eat such as the egg whites, ices, and ice cream are really a battle to get down.  However, with surgery… it is going to be even more difficult.  Plus, I am the one who usually prepares thanksgiving meal and makes the turkey and everything.  It is one of my biggest accomplishments throughout the year and I am always so proud of myself and of my dinner.  However, I probably won’t be up to cooking because of the surgery and therefore, we might be ordering thanksgiving dinner into the house instead of making it at home.

Happy-Thanksgiving-thanksgiving-holiday-greetings-smiley-emoticon-000929-largeI can’t believe how close Thanksgiving and the holidays are already.  It was already decided in my family that there is going to be absolutely no gifts this year for the holidays whatsoever because there’s just isn’t any money.  I really don’t care at this point.  All I want anyway can’t be bought because it isn’t materialistic.  All I want for the holidays is to get better.  I just want treatment for the holidays and that is too big to wrap up and put into a box anyway.

There are just a few days until surgery, but there is still plenty to be done.  In the morning I have another ketamine coma.  Thank goodness because I have been in so much pain lately.  I have literally been climbing the walls because of the pain that I am in.  Even though I get really weird dreams while I am under the ketamine such as me floating in air, at least I am on “vacation” because I get to escape the disease for the entire day.  Unfortunately though, all good things come to an end and I have to go back to being in Hell by waking up at the end of the day.

In addition, I wonder what they are also going to do about giving me injections into my knees because they think I am developing a allergic reaction to the drug that they always used and although they did switch the drug last time, I had a really bad reaction to it the last time and they said “no more with that new drug.”  They usually give me injections into my knees because they are so very bad and I also have bursas in them.  Also, my disease causes them to have osteoarthritis as well in them too.  So while I am under the ketamine, the doctor usually gives me injections into my knees because it will be too painful without being put “under” the ketamine and being alert for it; I would never sit still for it.   However, so now that I can’t have the old stuff because they are afraid of the allergic reaction and now since I can’t have the new drug, I wonder what they are going to do because I desperately need something to be done.  I literally can’t even bend my knees without it.

I only wish I could raise enough funds so that I can get the ketamine coma that is out of the country because the amount of ketamine that I really need to help me and to hopefully put this disease in remission is far too great than is FDA approved.  However, it is incredibly expensive and only attainable outside the United States.  Of course we can’t afford it on our own and therefore, it is really up to others to help me be able to get it before it is too late.

It is a radical, risky, and extremely dangerous treatment, but it is the only treatment out there that can potentially ‘cure’ me.  I only hope I can get it before it is too late.  I am suffering so much and in so much pain.  This is definitely not the life anyone should be living.  I am deteriorating so much that I spend entire days on the couch… too weak to get up and screaming in agony because of all the pain that this disease brings about.  This disease is known as the most painful disease to exist.  It is worse than childbirth, amputation, etc.  I don’t wish this disease on my worst enemy.  Doctors have even stated that if “Hell was a clinical medical condition, it would be known as my disease!”

Well… so much has been happening and to be quite frank with you… things are not good.  I went to a doctor earlier in the week to discuss my bones because they are afraid of me getting a life-threatening fracture, as I have extreme osteoporosis and my bones are really deteriorating.  I have tried numerous procedures and medications to try to increase my bone density, which includes the powerful bisphosphonate infusions, but due to the osteonecrosis now… they cannot be done anymore.  So… we went to see this top doctor in the field in hopes that he would have an insight to help me because my bone density is so bad. I am supposed to hear from him tomorrow.  So I will keep you posted.  He did say that I am “one complicated person” and in “really bad shape!” Like I didn’t know that, right?

Dad and I have also been talking.  I desperately need to go to the hospital to have the tubes put in me.  I am really deteriorating and really weakening.  My stomach is way out of control and I am getting sicker and sicker.  I desperately need the multivisceral transplant and unfortunately I am too sick right now to even get it.  Unless something is done soon and quick, I am not going to make it much longer.  The doctors want me to stop eating and drinking because it is only compounding the problem, but I can only accomplish that if I have the tubes.  However, I desperately need help in getting donations because the hospital is not local and we will need help in paying for it.

Dad keeps looking at me in dismay because it isn’t easy looking at your child and knowing that as much as you want to help… your hands are tied.  He keeps telling me that he would take away this illness if he could, but I always assure him that if he did that he would always return it in a split second because he wouldn’t’ be able to handle it.  It kills him that he is my father and he can’t even do anything to help me… not even provide the ability to get me the appropriate treatment that I need.  But he has been helping me and paying for things for so long that the well has to run dry after a while.  There is only so much a person can give.  So after being sick for so many years, there just isn’t any way possible that my dad can do it anymore unfortunately, and it absolutely kills him!  You can see it in his eyes and how he looks at me.

1398075_10100965588425040_2078258860_oDad works so hard and gets so little sleep in hopes to make up the money so that he can provide for his family and yet no matter how hard he tries… it is never enough. Not only are we having trouble paying for my treatments (even with all the cuts that we have made… cuts that I even need to have), but we are even having trouble paying the mortgage and putting food on the table. I just hope that nothing ever happens to him because he is my life.  If something ever happens to him, I would never forgive myself.  I am always so scared that something is going to happen too because he is no youngster, as he is already 60 years old and he can’t keep up this pace the way he has been doing.  He is really my biggest supporter of all and I don’t know what I would do without him.  He is simply the absolute best.

I have been so ill lately that I don’t really take any pleasure anymore in anything.  Life is just basically about existing and suffering.  As such… someone ended up doing my hair today to try to make me feel a bit better.  They tried curling it and making it look like Kelly Ripa.  It came out extremely nice.  If only my hair could always look like that instead of looking so bad.  For once… I was able to look kinda ‘pretty’ instead of looking hideous and like an emaciated skeleton that looks worse than someone from a concentration camp.

823430_10100965587881130_958917311_oMy best friend also made a recent trip to Disneyworld lately.  I of course can only dream of doing such a thing because we don’t have money to do any fun things anymore. In fact, we haven’t been on a family vacation for like over 8 years.  Anyway… I was so fortunate to have him bring me back a souvenir as he brought me a Pluto stuffed animal because he knows how much I love Pluto and stuffed animals.  He is definitely coming with me to the hospital.

I am so grateful for all that everyone has done for me already.  I know how hard it is to donate and it means so much to me. I also want to let you know that one of my friend happens to be selling walnuts especially for the holidays.  I am really lucky and fortunate to have her as a friend because she has been doing everything in her power to try to help me get the much needed funds.  She has made me YouTube videos, and has tried thinking of other ways to bring in money.  Her recent project entails selling nuts, as she has a family-owned company of growing and selling walnuts grown in California.   All her nuts and mixtures are absolutely fantastic, as they are always nothing but containing real fruit, and all but one of the recipes are vegan-friendly.

eea0cc_2b7e76df3ef24e58817d33bcf858d9f0.jpg_srz_400_300_75_22_0.50_1.20_0.00_jpg_srz1% of her profits go towards my cause, so by enjoying her walnuts, you can also be helping me out as well.  You can pre-order now to be shipped Dec. 1st, and the first ten of Fallon’s friends get 15% off! Use coupon code: savefallon.   If you go to her website, you can check it out, as well as place an order www.crazygonutswalnuts.com.  The nuts look absolutely yummy, as she has different flavors that include Wack-o Orange, Bananas, CocoNuts, Buffalo, Glazed, Sage and Rosemary, and Mapley Bacon.

In the meantime, I have been trying to keep myself somewhat busy.  So I have been trying to read a new book called “Bridget Jones Mad About the Boy.”  It is pretty good.  I can’t wait to finish it because I want to read the new book that came out by Mitch Albom called “The First Call From Heaven.”

I really am a prisoner in my own home because I am in so much pain and so weak that I can’t get off the couch.  Plus, with the winter season and cold upon us, I really can’t go out because I can’t tolerate the cold.  Hopefully it won’t be a really cold winter because I can’t tolerate the cold whatsoever.  Hopefully it won’t really be snowy either because then I will really be stranded too because since I am on crutches, I can’t really go out when it snows.  They have yet to invent “snow crutches” or “snow boots” for crutches.  So… I can’t really go slip sliding… so snow and ice really prevent me from going out.

Snow-shovel-shovel-frozen-freeze-smiley-emoticon-000799-largeI can’t remember the last time I actually got to play in the snow.  I remember when I was younger how I used to love playing in the snow… not to mention how I was a competitive figure skater too, so I used to spend countless hours in the cold ice-rink.  I used to skate before and after school and had the time of my life.  I constantly competed and even did shows at Rockefeller Center.  I had the same coaches as the gold-medalist Sarah Hughes.  That was really the time of my life.

Physical activity has always been a defining point of who I am. I would do anything to turn back time and be able to go back to the good old days when I was younger.  I would love to go back to ice-skating.  When I skated before school, I would say that nothing compared to the smell of the ice in the morning to wake you up.  Nothing compared to being able to soar on the ice and fly in the air.  It was amazing.  I loved it.  I also loved being able to go out and play in the snow in general…  Building snowmen, having snowball fights, going sledding… these are all things that I really miss.  If I ever got better, I would love to go back to skiing because even though I rarely skied and couldn’t even barely get up if I fell, I would love to try it again.

But since I have come diagnosed with my illness, I really have become a slave to it and it really has robbed me of so many things.  You really don’t really realize what you have or appreciate what you have either until it is gone. Never did I think that I would never be able to walk or even eat.    I never thought that every waking minute was going to be consumed with intense burning pain, stiffness, swelling, and discoloration.  My limbs have become cold and pale, as well as underwent skin and nail changes.  They also have muscle spasms and tightening.  My skin is very sensitive and burning hot, and even the slightest touch, bump, breeze or change in temperature can provoke a feeling of intense pain.  I am so hypersensitive throughout my entire body and I constantly feel like I am having gasoline poured on me and being lit “on fire.” I can’t even wear certain clothing, use a blanket, or have people touch me because the most innocuous touch and the most gentlest caress sends so much pain throughout my body that you wouldn’t believe.  This condition has the unfortunate honor of being described as being one of, if not the most painful long-term condition, scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth. With this condition the brain is going “hay wire” and sending pain signals out, when there is no real cause of pain.

I hate to sound like a ‘crier’ or a ‘beggar’ because that isn’t who I am, but I just hate sitting back and watching my life and health just deteriorate.  I just hate watching my life that at one time held so much promise and I was looking forward to so much such as having a family, being a doctor and helping others, etc. be taken away from me.   Even all the hard work I put into accomplishing all that I ever would want has been wasted such as all that hard work I put into school in accomplishing my great grades because I can’t even accomplish my dream of becoming a doctor and helping others.  All that I ever worked for and hoped for is gone.

This is not the life that I want nor ever envisioned.  I hate how I am 31 years old and still trapped in my parents’ house.  Before I got sick, I enjoyed figure skating, playing the violin, going to the beach, rollerblading, spending time with friends, going to school and volunteering for community events. Yet, my life has drastically changed with my illness, as I can’t even bear any weight on my leg and is now dependent on a wheelchair and crutches to get around. I have lost so much weight that I look like an emaciated skeleton, as my weight has dwindled into the 60s.  I have lost all muscle tone that I absolutely hate the way I look in pictures and therefore, I have to literally airbrush all my pictures before I put them up because I can’t stand the lines that form because of the lack of tone in my skin and lack of muscle.  Even when I look for glasses, one of the priorities in picking them out is that they cover the lines!

I hate how my life depends on taking over 50 pills daily. I just don’t take medicine to get “high.” I actually need my medicine! I have pain everyday… Every minute… Every second… and at all times.  My pain is usually a 10 out of 10.  Yet, there is really no medication to help and there really is no cure. I I take these pills just so I can be able to somewhat function, and these medications come with their own side effects.  I am not on just little medications like Tylenol or vitamins either.  Instead, I am taking potent medications like Methadone, Morphine, Dilaudid, Ketamine, etc.  I even have to keep a computerized record of my medical history, drugs I have taken and currently taken, treatments that I have had, etc. because it is just so long that if I had to rewrite it every single time a doctor or someone needed it, I would be there all day. Even on the computer, it comes out to 5 pages in length.  In fact, when I hand them the computerized sheet, the doctors, nurses, PA, etc. are all happy because it saves them from re-writing everything because they would be not seeing any other patient if they would have to re-write everything.  When I go to the doctor with my records, it is like bringing huge volumes. 

841271_10100961792392320_840288616_oI hate how I have to suffer in so much pain.  My days have turned into a series of doctor appointments, treatments, therapies and a medication regime all under a blanket of pain.  I hate how I was once a social butterfly and now my social calendar is only filled with doctor appointments or else I am home on the couch just hoping I can make it through the day.   Thank goodness though that I have my animals because they are my best friends.  They have kept me so comfortable and I don’t know what I would do without them.  My cat spends all night with me and my dog spends all day on the couch with me.  Between the both of them, I am never alone.  My parents call them “my babysitters!”  To think though, I would love to be able to do so much though with my dog including go out running with him and even walk him. However, not only can’t I go for long walks because of my illness and how weak I am and how much pain I am in, but there is no way I can walk him because I am on crutches and he will pull me down (even though he is fully trained and one of the nicest dogs you can ever meet).

I hate how I have to suffer in so much pain.  My days have turned into a series of doctor appointments, treatments, therapies and a medication regime all under a blanket of pain.  I hate how I was once a social butterfly and now my social calendar is only filled with doctor appointments or else I am home on the couch just hoping I can make it through the day.  I hate how not only has my life become a slave to this illness, but my family had to literally give up their lives as well and have literally stopped ‘living’ their lives because they had to care for me.  I am extremely thankful (don’t get me wrong) for all that they have done for me, but it is not fair that they can’t enjoy their lives.  I can’t remember the last time we went on a family vacation or they even went out for a simple dinner.  I am tired of them spending all their money on me and having no money for themselves.  I am just simply tired of having the only thing the word FUN and me have in common is the “first” letter (the “F” … “F” for FUN and “F” for Fallon).  I cant remember the last time I can say that I had “FUN!”  This is not the life I or anyone should be living!

Sometimes I wonder what would honestly happen to me if and when something happens to my parents?  I really wanted to be able to be independent and able to provide for myself.  However, I constantly wonder what I would do when I depend on them for so much, need so much help, and can’t even work. Something has to change before it is too late.  I can’t live like this. 

Christmas-Chimney-holiday-christmas-xmas-smiley-emoticon-001166-largeI just can’t take this life anymore!! I just wish I can close my eyes and it’ll all disappear! What did I do to deserve this? Someone please help! Some may want physical presents for the holidays… All I want is to get well… Something that’s out of my hands and depends on the help of others! Please pray, donate, and spread the word!!

Thanks again for all your support.  I can’t thank you enough because it has been a long and difficult path… one that I definitely wouldn’t have gotten as far as I have if it wasn’t for your help.  Please continue to pray for me, as well as please continue to spread the word that HELP is desperately needed.  Only by word of mouth does it look like I am going to be able to accomplish getting the much-needed donations for the treatments that I need.  After all… when it comes to the media… it isn’t “what” you know, but “who” you knows and unfortunately, I don’t know anyone.

Well… until next time. If I don’t write beforehand, I will write again after surgery.  But, I will try to update again before Tuesday.

– Fallon

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November 9, 2013


I figured I would write tonight and update you on all that is happening because so much lately has been taking place and there is so mu h new stuff to be known. I am not doing well lately, which is one of the major reasons why I don’t write as much as I would like.

I really have changed lately.  I am in so much pain and so weak that I literally can’t get off the couch.  I have been extremely weak that it is really hard even staying awake. But it isn’t like the ‘sleep’ gives me a break from anything.  I pass out from all the pain and everything that is going on and even though I may be technically “asleep,” I still feel the pain radiating through my body. It is constant torture.  The only thing it is doing though is really scaring my parents because they are having a hard time keeping me awake. Between the way that I look and how I am acting, I am really scaring everyone.  My dad constantly checks on me because he says that he has never seen me so bad.  Even when he is out working, his mind is constantly on me and therefore, there are numerous times that he will stop his work to just drop by the house to make sure that I am resting peacefully on the couch and nothing seriously is wrong. I keep reassuring him that I will be “OK” even though I don’t know anymore what is honestly going to happen.

I definitely know that things are different.  I definitely know that I am deteriorating.  I can feel my body weakening and everything, but I am still not giving up.  I am still fighting.  I may have lost some battles, but the war isn’t over as of yet.  So… I just gotta build up my arsenal and win some battles so that I can win this war.  I am not going to lose this war.

UnknownLately I haven’t been doing too well, so I have been down but certainly not out.  I am in severe pain as I have told you and my bloods are not doing well at all. The labs and hospitals are constantly calling my doctors telling them that I am listed in the “critical” values when I go for blood tests, but I am still hoping and pushing that I can overcome this.  It has been recently noted too that I am in liver failure among all the other things that are going on.

Well, I mainly wanted to write to let you know what is going on.  I just received word that I am going to be undergoing surgery in less than 2 weeks for the osteonecrosis and all the problems in my mouth and feet and such.  It is going to be a mega surgery, and I am really nervous.  I am really scared also because I really need this surgery and the insurance company does not cover it.  Therefore, I don’t know how on earth we are going to afford it.  I really need all the help that we can get because I honestly don’t know what is going to happen if we can’t receive any ‘help.’  My real fear is that even though everything is scheduled because it has to occur that it will have to be canceled because there just aren’t enough funds for the surgery.  So if you can please donate or at least spread word that donations are very much needed, I would really appreciate it.

I am really nervous that I won’t be able to have this surgery because it really is dependent on the donations that I receive since it will be very expensive and we can’t afford it by ourselves. Unfortunately, the insurance won’t cover most of it.  The surgeon isn’t covered nor is the surgery itself.  The only thing that is covered is the actual hospital stay.  However, just the surgery itself is going to be astronomical between the cost of the surgeon fees and everything else.  Plus, just because the insurance is covering the hospital, I still have all these copayments to pay as well. I will have to pay $150 per day that I am hospitalized as well as $100 per each x-ray and procedure done as a copayment besides the amount that isn’t covered (the surgery, the surgeon, etc.).  So clearly that will add up to be extremely costly as well.  I just don’t know how on earth this is going to work out!  I hate thinking that the stupid green paper is more important than a person’s life!

Like I said though, I am scheduled to have surgery in less than 2 weeks and therefore, the next week or so are going to be so insane.  I am having surgery for the osteonecrosis that is occurring.  Then I am also having surgery for all the nerve exposures because all my nerves are exposed especially in my mouth.  My teeth are also disintegrating literally and need plenty of root canals, but unfortunately I cannot be put under regular novocaine because it won’t hold me.  Therefore, while I am under GENERAL anesthesia, they are going to take care of that as well.  In addition to all those problems, I am having problems with my legs as well.  I am having callouses on them that have to be removed and seeds in them as well that have to be dug out.  So while I am under anesthesia, they are going to be doing that as well. It is going to be one HUGE day of surgery from head to toe.

SmileyFace_doctorI am going to be having so much surgery during that day, but hopefully I will be better when the day is done. The surgery is supposed to last for about 5-6 hours.  The surgeons are pretty scared about what is happening with me and with my overall situation and therefore, they have been trying to take every precaution and trying to get the ‘teams’ prepared in the hospital to take care of me.  They don’t want anything to arise unexpectedly because they know that they are already going to have their hands full.

The doctors know that I am an extremely complicated case that is not seen on a regular basis.  As a result, my surgeons want the entire hospital to know what is going on with me in case a crisis should arise because it is very possible that something will occur because of my complicated condition.  We really have our hands full between all my health problems, which include the extremely low weight, low blood pressure, autonomic dysfunction, discoloration, gastroparesis, poor bloods, organ trouble, etc.  According to the doctors, “I am one sick girl and they need to know exactly what is going on so no unnecessary surprises get sprung because they will have enough on their plates without that stuff.”

As such, my surgeons have been simply wonderful.  They have been talking to everyone in the hospital and having meetings with everyone such as all specialists that will be on the ‘team’ including anesthesiology, nurses, doctors, etc.  He is telling them my entire medical history and telling them exactly what is going on and what to expect since they really never had a case like me before.  I am fortunate that I will be able to be able to have this surgery in the area, but on the other side of the spectrum, this hospital needs to know how to care for me because I am going to need some extra TLC.  The surgeons have me going for all my clearances and have me going for extra tests such as extra cardiac tests and pulmonary tests so that they can thoroughly know exactly what is happening with me and minimize the amount of surprises that can happen.  Even though they have had meetings with all the people to explain my case prior to these tests and such, they are going to have more meetings right before surgery to further go over all the tests so that everyone is on the same page.

I am really nervous because it is going to be one big day.  I mean going through 5-6 hours of surgery is no small stuff.  I just hope that everything will be ok in the end though.  As of right now, I am scheduled to be undergoing the big surgery on Tuesday, November 19th.  So… it is basically around the corner.  The doctors are trying to get it in as soon as possible because of how poorly I am doing.  I am really going downhill quickly.  I am getting really weaker, my bloods are dropping, my liver is failing, I am having a harder time clotting, my bones and teeth are disintegrating, etc.  It is really imperative that something be done now rather than later.  So, they are shooting and hoping that this day will work out (unless something like I get too sick to undergo the surgery arises).

So… the next week or so is going to be insane. I have to undergo all these tests and clearances.  Like I said before, the doctors are making me do extra tests and such because they want to know as much as possible about me because they are going to really have their hands full with me. They are also going to be having meetings about me and the hospital is going to be learning how to ‘care’ for me because I can’t be cared for as a typical patient.

I am definitely not the typical patient, as I am very hypersensitive and will be in lots of pain after the surgery (even more pain than the normal patient). I can’t tolerate IVs because the lines literally burn up my veins.  As a result, they will be having me on ketamine not only during the surgery, but afterwards as well.  They are going to be giving me very high doses of ketamine because not only will it try to help with the pain since the most innocuous touch is excruciatingly painful for me, but it is going to try to ‘contain’ the illness because my illness likes to spread whenever there is ‘stress’ or ‘trauma’ to my body.  This illness is already spreading like a wildflower and we can’t afford for it to spread anymore.  We are hoping that the ketamine will at least help to keep it where it is instead of it progressing, which is a real possibility.  I don’t even want to think of it doing that and getting worse.  I would never be able to tolerate it.  I am only hoping that the ketamine does the ‘magic’ that it always does.

With all the intense surgery that I will be undergoing and then the ketamine that I will be given afterwards, my dad will hopefully be spending the night with me.  They are preferring my dad to stay with me overnight because he is the only one really who knows what is going on with me and who can speak for me.  They want him to stay in case something should happen.  This way he can explain to the nurses and doctors what is “normal” and what is not.  I am really hoping that he will be able to stay because I don’t want to be left there alone.  I am petrified of hospitals.  I know it sounds weird especially since I have been there the amount of times that I have… but the truth is that I am becoming more and more petrified of them.  I really hate being hospitalized.  But they are hoping that with my dad being there that things will go more smoothly and I will be able to get more of the care that I need because he will make sure that I get it.  After all, they really never had a case like me before and aren’t used to someone like me.  Just knowing that someone is there for me will be a great relief.  I know my dad hates sleeping at hospitals because there is no place for him to comfortably rest, but I am hoping that he will be able to stay because I don’t want to be alone.

This surgery is really important because I am in soooo much pain.  Not only that but the osteonecrosis is so bad and all the nerves are all exposed.  Therefore, the slightest touch or anything will send even more pain than anything.  I also am having trouble walking because of the ‘seeds’ in my feet, so that has to be taken care of as well.  So… it really is a necessary surgery.

1455930_592256994156345_1401934180_nBesides this though, I am not doing well.  I went for bloods today and my entire left arm is all swollen.  As I am having an extremely hard time clotting, the blood never clotted and ended up bleeding all under the skin and such.  I have such a large hematoma under the skin and there is all this swelling too.  Never a dull moment.

I am also scheduled to see a new bone doctor on Monday.  This doctor is supposed to be one of the best of the field. I really need a great doctor because I am really deteriorating in this area.  My bones are so very bad and now with this osteonecrosis, we just don’t know what to do.  My old doc refuses to give me the “reclaste,” which was the medicine that I took to strengthen my bones before and therefore, there isn’t anything left to take.  My bones are really weakening and even with this powerful infusion of reclaste, they are still disappearing.  Yet, they said that without the reclaste, it would have been a lot worse.  My bones are so bad that the doctors are afraid that I am going to get a life-threatening fracture.

So I am headed to see this new doc because he is supposed to be one of the best in the field.  We are hoping that he will have another option to help me since I can’t take the reclaste anymore because of the osteonecrosis.  They came out with a new treatment called Prolia, so hopefully that will be able to help me as well especially since I have tried all the other treatments and failed them.

This upcoming week is going to be extremely busy because not only do I have all these appointments for the upcoming surgery and this bone appointment, but I also have another ketamine coma appointment on Friday.  Gosh… that day can’t come fast enough because that is the only time I get a break from this illness.

Happy-Thanksgiving-thanksgiving-holiday-greetings-smiley-emoticon-000929-largeThanksgiving is basically around the corner and so are the holidays.  I can’t believe how fast they are coming this year.  I usually make Thanksgiving dinner, but with everything going on this year, I don’t know what is going to happen.  I was already told by the doctors that I probably won’t be “up” to having Thanksgiving dinner.  I just hope that I am home for it.  I also found out that there will be no gifts during this holiday season because we really don’t have the money.  I told my mom that it’s ok and understandable.  Gifts aren’t important anyway… family is.

Well… I guess that is about it for right now. I think I summed it all up.  Sorry if this is a little disorganized, but I am just not feeling well and I wanted to update you on all that is happening.  Like I said earlier, I am expecting to undergo surgery on November 19th, but I really need as much help as I can from you and others because I cannot afford it on my own. If you can please spread the word that donations are very much needed, I would really appreciate it.  Please pray for me because I am going downhill so fast and I need help so badly.

Oh, I forgot to add that I received word that one of my YouTube videos hit 2000 views.  I am so excited.  I just wish the donations would come along with it because I so desperately need treatments and I can’t afford them on my own.  Even the littlest amount would be helpful.  After all, a little here and a little there all add up.

Thank you again for all your help and support.  I really appreciate it. I definitely wouldn’t have made it this far if it wasn’t for support of you. Well, until next time…



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November 2, 2013


I hate to be really saying this because I hate to be such a “beggar,” but I am desperately pleading for others to please help me find a way to receive treatment because I desperately need it.  Unfortunately, my health is not “rebounding” at all anymore.  Whereas before my health and bloods were on a steady decline, but there were times that we could see spikes of  “improvement” and when I bounced back a bit even though I would never bounce back enough to be “out of the woods or anything,” I have stopped showing these spikes and bounces. I can’t remember to be honest with you the last time that I said that my bloods showed any bit of improvement or that I felt any better.  I desperately need help as time is really dwindling.

I am really scared I am not going to see the holidays.  The way things are going…. it remains a big question mark because of the way my bloods and organs are.  I desperately need something to change, but unfortunately, we are completely “broke!”  I hate using that word, but to be honest with you… it is the absolute truth.  This stupid disease has financially ruined us and as a result, I can no longer receive the necessary treatments that I need to get better. Not only can’t I afford the necessary procedures, surgeries, and actual treatments that can help me improve, but also we are now can’t even afford the very medication that I need to take on a daily basis.  I take over 50 pills every day just to be able to ‘function’ somewhat. I take Methadone, Morphine, Nucynta, Dilaudid, Ketamine, etc.  I am on very potent drugs and I really can’t survive without them.  I am in extreme pain and unfortunately the medications that I need to help me are not cheap.  In fact, some of the medications are not covered at all by insurance plan because they have to be bought out of the country since they are not FDA approved.  I have tried to do without these medications and tried to cut costs by eliminating these drugs, but unfortunately every time I have even tried to even “cut down” on the amount that I am taking, it has only led to detrimental effects and further suffering.  I don’t know what I we are going to do.

I don’t know what we are going to do because I hate to be considered a ‘crier’ or a ‘beggar’. Yet, I really have no choice anymore because this is what my life has come down to.  Without the help of others, I fear that I will definitely not only be able to not receive treatment, but I also don’t know how I am going to end up getting my medications.  My family has been paying so long for this very expensive disease and unfortunately the well has to run dry sooner or later.  The money can’t last forever and even though they wish they could do more for me and would do anything for me if things could be done… there really isn’t much else that can be done.  You really can’t get blood from a stone.  You know?

So if you have any fundraising ideas or can PLEASE pass word of this website… I would really appreciate it.  Like I said before… I am desperately in need of your help and unfortunately my life rests in the hands of the rest of the world because we can no longer afford the necessary treatment or even the medication to help me get me better or even to keep me existing at the state that I am at right now.  If nothing else, please say a prayer that something will turnaround or work out because I am desperately in need of a “miracle” or something.  The holidays are just around the corner and I really hope that I will be able to be around still to celebrate them.  The greatest gift in the world would be able to receive the ability to receive the necessary treatment that I need to continue existing in today’s world. There is so much that I still want to do, I don’t want to leave yet.

I desperately need help because I am deteriorating so rapidly.  I am really supposed to be in the hospital, but unfortunately, there really are no funds to do so. To be hospitalized, it would be so costly because it isn’t like I can be put into a local hospital.  I would have to travel to a hospital such as in California, Minnesota, or even Washington, which would mean that besides the money needed to go for the treatment and the hospital and such, I would also need traveling expenses and money to live on as well.  It would also mean that dad wouldn’t be able to work and therefore, the limited income that we are receiving nowadays wouldn’t be able to happen.  So… it would really not be such an easy answer to just go away to another hospital, but we would have no other choice because the local hospitals in New York really can’t handle me because I am “too complicated.”

When I need to go to a hospital, it really is a BIG deal.  I can’t just go to any hospital because of the nature of my complicated condition. I am waiting to hear from the surgeon for the osteonecrosis because I need to have that surgery done as soon as possible as it is really getting worse.  In addition to all the other problems that I have with eating and such, the osteonecrosis that is occurring especially in my mouth is preventing me from eating on top of it too because even the very limited food that I can eat because of the Gastroparesis and such is all too painful because of the osteonecrosis.  I am really between a rock and a hard plate because if it isn’t the Gastroparesis, which is preventing me from eating, it is the osteonecrosis.  My GI tract is completely paralyzed and I can barely swallow.  Even the limited foods that I once was able to have such as the ice-cream, the medicated ice-pops, and my egg-whites are giving me trouble now because not only is the Gastroparesis getting worse as well, but the osteonecrosis is causing severe pain as well when trying to eat anything.  Anything that touches the mouth causes me severe pains… even my tongue.  I literally have bones protruding into my mouth from my jawbone because of the osteonecrosis and they need to be taken care of as well as all the nerves in my teeth being exposed.  Nothing is worse than having pain in your mouth and teeth because it shoots right up and down your face and up to your brain.  Everytime I put anything in my mouth (even liquids), it feels like I am getting the worst brain-freeze in the world and the pain doesn’t dissipate as if it would as if it really was in fact truly “brain freeze.”

That being the case… I have been fortunate to be able to go for this necessary surgery in New York, but on the flip of the coin… the surgery is not covered.   Therefore, I really need help in order to have this surgery performed because it is obviously going to be one expensive surgery since no surgery is ‘cheap.’  In addition, besides not being able to have the operation immediately because there are no funds available, the surgeon has been busy having meetings with all the doctors in the hospital and all the departments as well because the surgeon wants to make sure that the hospital is fully aware of my condition and what they are going to be “in” for when I arrive.  They are going to have their hands full enough because I am not like a typical patient.  The doctor doesn’t want any surprises.  Therefore, not only does he want everyone who is on the team (from doctors to nurses) educated on my condition and familiar with it, but he also wants to make sure that they know exactly from head to toe what is happening with me. Therefore, he is having me get a lot of testing and clearances so that he can fully be aware of everything and anything that is taking place and going on.

I understand where he is coming from because he doesn’t want anything happening, but unfortunately with all this time being spent with seeing the specialists and going for the clearance testing, as well as him having those meetings… I am really deteriorating and getting worse.  I already teased him and said to the surgeon “Do you think that I am going to be able to have this surgery before Christmas because it is right around the corner.”  He assured me that they are trying to get it done as soon as possible and he has been working with the heads of each department in the hospital to make sure that I get in ASAP because he told them how severe my case is and how desperately I need to get this surgery done.  After all, it is further preventing me from eating besides giving me even more pain, which is something that I can’t afford.  I already weigh dangerously low and losing a single ounce is a matter of life and death.  Also, if I do end up losing any weight, it is basically impossible to gain back and therefore, it is imperative that we don’t allow that to happen.  So something has to be done quickly.

But also, as I said before, the surgery is also not covered under the insurance company and therefore, will have to pay for it out-of-pocket.  So it is important that I have the funds available to pay for it when the window of opportunity opens up and there is an opening at the hospital for the surgery. It would stink to have everything taken care of and then when the “window of opportunity” arises, I would not be able to take advantage of it because of the fact that we don’t have the funds.  It is important that this surgery be done because not only is it causing me severe pain, but it is leading to further infections and causing so many other problems, as well as spreading my other illnesses as well.

I should know more information on Monday because not only is the surgeon speaking with the heads of the departments then (especially with the head of anesthesiology), but I also have an appointment with my cardiologist and for an ECHO for clearance.  So maybe we will have a set day on Monday!

I’ve also been more distended than anything lately and in a lot of pain with my stomach.  Not only can’t I eat, but drinking is basically out of the question too. The slightest liquid entering my stomach is causing me severe distress. I don’t know if it has to do with my bloods or anything but I have never been so thirsty.  Despite all the drinking that I do (even when I drink Gatorade or any other thirst-quencher drink), I can never quench my thirst.  Plus… to make matters worse…  I get severe pains in my stomach whenever I do drink.  So I really am between a rock and a hard plate.  I just don’t know what to do anymore because I suffer either way.  I just can’t process the fluids and become severely distended, and the slightest liquid or food entering my stomach just kills me.  That is why the doctors want me to stop eating and drinking.  They think it is only compounding my problems and making them worse.  Yet, in order for that to happen, I really need to have the tubes placed in me, which means I need to go to the hospital in California, Minnesota, or Washington… and you know the issues already with that.

I really need help and help desperately.   I know I probably sound like a broken record already, but unfortunately that is the absolute truth.  I really don’t know how much longer I can just stay out of the hospital “waiting” for something to happen.  My bloods are continuing to worsen and they are never ‘bouncing’ up (even if it is just for a week or so). Despite all that I do such as taking my meds (even when they have been increased and such), nothing is working.  It is like the more I try to improve my bloods and stuff, the worse they are getting.

My bloods are really low as I can easily have cardiac arrest and an arrhythmia.  The hospital is always calling my doctor now saying that I am listed as “critical” when they test my blood.  Not only is my heart suffering, but my other organs are suffering as well.  I am showing signs of liver failure as well and I am having trouble clotting.  My PTT (which affects clotting) keeps getting higher and doesn’t even come down anymore.  The levels of the secretion of prolactin and other hormones of the pituitary are out of control because of the tumor that I have pressing on the pituitary gland.  I know that if something isn’t done fast, I don’t know how much longer I can ‘hang on.’

I went for the flu vaccine today because I of course can’t afford to catch the flu.  I can’t afford to catch even the simplest cold as it can easily kill me. I have no reserves and everything is ‘magnified’ for me over the typical person and therefore even the simplest cold is like the ‘flu’ to me and can easily kill me.  Can you imagine if I got the flu?  When I went to the doctor though, the doctor didn’t know if the flu shot would be a good idea because even though it would be a great idea in a normal person to prevent getting the flu, who knows what the best thing would be for me.  I mean… if I get the flu, it would kill me hands down.  But… if I got the flu vaccine, it could also cause mega damage because my body is so out of whack, so hypersensitive, so immune-compromised, and really in bad shape.  I really have no power or capabilities to fight anything.

After careful thinking though, the doctor decided to give me the flu vaccine because getting the flu would probably be a lot worse.  However, when I did go for it, it only led to tons of problems that made me end up staying with the doctor for almost the entire day today and almost caused me a trip in an ambulance to the emergency room.

I don’t know what is happening with my body, but this isn’t the first time this has happened.  Lately whenever I get any vaccination, I have been having really bad reactions. I can’t just say it was the reaction to this particular vaccine because it happened the last time too when I had the Pneumonia Vaccine and Flu.  However it was not as severe as it was this time.  This time when it happened, it not only scared me but everyone else.

After the doctor gave me the injection, we thought that everything was going to be OK.  We were joking around and even were saying how “its too late not to take back the injection because it’s done already!”  We also thought that if anything was going to happen such as side effects to the injection, it would happen in a few days like it normally would for other people.  We thought it would just be the typical side effects of feeling like I had the flu, but for me it would probably be a lot worse because of my condition.  Never did we think that we were going to be in for what happened next though.

Within 5 minutes, things went from really bad.  I started getting really bad chest pains as if I was having a heart attack.  I was also getting really bad hot flashes and cold sweats.  It was as if my autonomic dysfunction as acting up.  I was also extremely dizzy and felt like I was going to puke.  I thought it was just a sensation that was going to pass, but unfortunately it wasn’t.  The doctor and his secretaries immediately saw how sick that I was and they said for me to go and sit down.   Thank goodness I had them around because I got so dizzy and weak.  I got really scared.

Thank goodness though that I have the best doctor and the best office staff.  They are so kind and caring and really took great care of me.  They kept making sure that I was ok.  They kept checking my temperature, asking me if I wanted water, food, gum, or anything else, etc.  They also helped me into a room to lay down because I was unable to hold up my head.  I really wouldn’t have been able to manage without them.  To think… this appointment was only supposed to be for bloods and the flu shot.  I should have only been there for like 15 minutes or so.  I ended up being there for like over 3 hours.

The doctor doesn’t know what happened.  He thinks my body is just so deteriorated already and so compromised that the vaccines are just further worsening everything.  After about 3 hours, my dad took me home, but I was in no way out of the woods. Not only did I feel horrible still, but also everyone said I looked really bad.  I just wanted to leave the doctor’s office though because I was there long enough.  The doctor said that I should contact him later though and let him know how I am doing.  That is one thing about my doctor and his staff.  They are so incredibly nice and caring.  Even though I was leaving, they still wanted me to contact them tonight via text just to update them.  Not many people would do that.

Unfortunately though, the chest pains didn’t stop though when I got home. Instead, they continued on and I also got really achy and got the chills on top of everything else.  I really was having a severe reaction.  So everything is at a standstill right now.  I am still not feeling well and the doctor said that he would prefer me really to go to the hospital because of all that is occurring.  However, with the issues with the money and how not many people would know even what is going on anyway because of my complicated disease, I am trying to hold out as long as possible.  I just feel really weak not and feel like I am getting flulike symptoms on top of everything else.  If my body is having reactions now to vaccines on top of everything else, I wonder what else is next.  I wonder how I am going to take future vaccines.  It is like whenever I do anything to my body, I have to pay the pied piper.

When I spoke to the doctor later tonight, I told him that he can never be bored with having a patient like me.  I also told him how I keep him on his toes because of how everything keeps happening with me.  He certainly agreed with those statements.  I really keep a doctor busy… that is for sure.  I told the doctor that if only he could cure me or something.  Whoever does do that will definitely be rich and famous. That is why so many doctors don’t want to let me go.  They don’t want to lose the opportunity to be able to claim me as a “prize”.  They want to be able to write me up in the journals.


Well… that appears to be everything that is happening with me.  Yesterday was Halloween and I can tell that things are really getting bad because I wasn’t in the mood to celebrate the holiday like I used to.  I did cut open the pumpkin and such, but it was mainly just to get the seeds out so that my family could eat them and such because that is the tradition and because you can only get these seeds once a year.  Even though you can get pumpkin seeds to eat anytime in a store, they never taste the same as when you get them and cook them straight from the pumpkin.  It is like when you go apple picking… nothing tastes the same as when you actually pick it right from the tree… even though the supermarkets claim that they are “fresh” and “picked straight from the tree.”  So I didn’t want to disappoint my family, so I cut open the pumpkins just for them.

1009054_10100946712772000_924993753_oMy friend also came over one day to cut open a pumpkin and we had a great time doing that.  He said he hasn’t cut open a pumpkin in ages.  I did have a good time not only being with a great friend, but carving the pumpkin with him too.  We made him puking because I told him that this pumpkin represented exactly how I felt!  We ended up taking some really great pictures too.

But now that Halloween is over, the holidays are just around the corner.  I can’t believe that it is already November!  Thanksgiving is like in 3 weeks and that means that Chanukah is then too since it is very early and Christmas is 1 month later.  Gosh… it is coming faster than ever.  I really don’t want anything but to get well.  I really hope that I get my wish.

1270590_10100942126113700_1924080964_oI have been listening lately to some music and came across a song that I truly fell in love with.  It was a song sung by Kristen Chenoweth.  I never knew that she made an album.  I thought that she was just an actress who was on TV as well as the person who played the good witch in “Wicked.”  However, I loved her CD. She had a song called “Fathers and Daughters” and I instantly fell in love with it because it not only sounded simply amazing, but it reminded me of my dad.  It showed the special bond that a father has with his daughter.  I love my dad and he would do anything for me.  It hurts him so much that he can’t do anything to get me well.  He works himself ragged just t try to help me as much as he can, but despite all that he does… it is not nearly enough.  He is so tired and overworked and I am so scared that something is going to happen to him.  If something would happen to him, I would never be able to forgive myself.  He is the biggest reason why I am here today.  He is not only my dad, but also my hero and very best friend.  He is my biggest supporter.  He always takes the greatest care of me and always tries to make me smile… even on the gloomiest of days.  He constantly takes care of me and spends countless hours on my bed even when he is so tired.  In fact, I got a picture of him passed out on my bed the other day of my turtle just watching him.  My dad was supposed to be ‘watching’ me and instead he passed out and my turtle was watching him.

893849_10100947241781860_1329385984_oI wish that there was something that I could do to make his life better because he is the best dad and the greatest person in the world.  He definitely doesn’t deserve this.  My dad and I are so close and everyone says that if something happens to me, my dad would never be able to continue.  They are probably right because he keeps bribing me to keeping me here.  Even though he doesn’t want me to suffer, he doesn’t want to lose me.  So he keeps telling me all the stuff that he isn’t going to do or isn’t going to be done if I am not here like how he is going to become so fat that they are going to have to open up the gates for him when he dies and I will not even recognize him because it is me who watches his diet (to a point).  He also tells me how he isn’t going to take his medications either because I am the one who sets them up.  I keep telling him that he will be fine without me, but he says that he won’t and will not be doing these things.  He thinks that by bribing me with this stuff and such that it is going to get me to “stay” here longer.  I feel so bad because I don’t have that control over what happens, and I tell him all the time that when I go it isn’t because I wanna leave him!  Here is the link in case you want to check out the video to the song I am talking about: http://youtu.be/5l8XoV_vxX0!

Well…. Gonna get going.  Not feeling too well.  Just wanted to update you on the latest.  Thanks again for supporting and encouraging me.  I really appreciate it.  Like I said though, I really need help in getting further treatments, medications, etc. and therefore, if you can please spread word and bring attention of my website, I would really appreciate it.  If you can please think of any fundraising ideas, I would appreciate that too.  You can email me at Femirsky@gmail.com.  Until next time.



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