FALLON MIRSKY

Please help SAVE MY LIFE!

November 29, 2012

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Hey-

Just wanted to give an update on what is going on because it is getting closer and closer to Monday.  Monday is the day we are supposed to be leaving for Nebraska, so it has been a really hectic week trying to get everything situated.  I really haven’t been doing well, especially this week… but I just have to hang in there a few more days because Monday is just around the corner.

I am really getting afraid that I am not going to make it to Monday because of everything that is happening.  I am rapidly deteriorating and I can feel my body just weakening.  My dad just keeps pacing the house saying, “you belong in a hospital” and “just hang in there… Monday is just around the corner.”  I agree that Monday is really close, but it still feels so far away.  Plus… I am really worried on the impact that the traveling is going to do on me because it is really stressful on my body. I am already shuttering at the fact that I have to get on a plane and fly to Nebraska in a few days.  I wish I could go to Nebraska and get all this done without really “going”… if you know what I mean!!

Traveling is not the easiest thing on me.  It really is a big deal. I am so very weak and it really is exhausting when it comes to traveling.  It takes a lot out of me and it really stirs up my disease.  Usually it wipes me out and flares up my disease mega time. My body usually “shuts down” by the time we get to our destination that I usually can barely move and usually collapse.  Whenever we get to our destination, my body is usually like in a “coma-like” state because it basically “shuts down.”  It takes forever for my dad to get me up or even to get food into me because I can’t even move.  I literally collapse and that’s it.  What do you expect though when you are very sick and weigh basically nothing?  I have no energy to do anything.

The doctors will probably heavily medicate me like they always do in order to get me to Nebraska.  I am in extreme pain all the time and with me being in a cramped up plane, as well as all the traveling, it will really be painful.  I am extremely hypersensitive and I can feel everything.  The change of altitude of the plane going up and down isn’t good for my condition and not only does it exasperate my condition and give me more pain, but it triggers off my autonomic dysfunction and makes it even more difficult to breathe.  It is just horrible.  My dad and I are always scared that the plane is going to have to make an “emergency” landing because of me.

But… hopefully everything will be ok and we will make it to Nebraska safe and sound. The doctors will be picking us up at the airport, which is something I never heard of in my life.  I bought some warm clothing because I heard how cold Nebraska is.  With the holidays coming and Cyber Monday just passing, I was able to get some really good deals and some cute stuff.  I can’t wait to wear it.  I got a really nice pair of suede gloves, a hat, as well as earmuffs.  I like the earmuffs, but my parents say that it probably won’t keep me very warm because it doesn’t really cover my head.  I love the hat too though.  I have wanted this hat for a very long time, but it has always been way too expensive.  However, with the holidays being here and it being CYBER MONDAY, I got a really good deal on it. I don’t think it is “today’s style” either so it was further discounted.  But who cares as long as I like it.  Too bad I can’t wear both at the same time because they really are nice.

I am really nervous about going to Nebraska.  It can’t come soon enough.  I just hope that they can help me because time is really of the essence.  Things are just getting so bad.  The amount of mucous that is coming out of me has greatly increased and I am so thirsty that I can’t do anything to quench it.  I imagine that I am so thirsty because I am dehydrating due to the fact that I am having so much mucous come out of me. I am also bleeding a lot more.  They don’t know where the bleeding is coming from, but hopefully when I go to Nebraska, they will find out.  I am not only bleeding in my stool and mucous more, but I have blood in my ears and sometimes I spit up blood as well.  This is definitely not a good sign.  But… the doctors have tried looking into where the bleeding has been coming from in the past, but they have been unable to find it because all the tests have not been able to be done for one reason or another. Due to my extreme paralysis of my GI system, they can’t do a colonoscopy or anything, even though they have tried various ways to empty me out and such (even putting a NG tube in me and such).  But… hopefully Nebraska will find everything out.

I have also contacted the CLEVELAND CLINIC.  A friend from school contacted me because her father helped me out by giving me a name of a doctor there. Her dad was my Orthopedist when I fractured my growth plate in 4th grade. I am so thankful for her and her dad because the doctor that they gave me seems like one amazing doctor.  When I went to California, the doctors told me about how the hospital in Pittsburgh was the best place to have my transplant at one time, but the surgeon there left and they didn’t know where he went and such.  Little did I know that the surgeon that my friend’s dad was going to tell me about was going to be that surgeon?

It turns out that the surgeon left the hospital in Pittsburgh and went to the Cleveland Clinic. My transplant is extremely rare, and only 8 hospitals in the United States perform it.  It is very risky and dangerous, as it runs the highest rejection rate of all transplants.  So, I want to have the best doctor perform it.  Even though Nebraska is supposed to be the “largest” center for intestinal transplants, they really don’t do multi-organ visceral transplants, which is the type of transplant that I require.  They would give me a transplant of a small intestine and remove my stomach, but I need much more than that.  I need a transplant of a stomach, small and large intestine, as well as a pancreas. I might even need an esophagus.  Just getting a small intestine and removing my stomach is not going to do the trick because my entire GI system is just too far-gone.  But, the Nebraska hospital did say that they would operate on me as multi-organ, but I would be like one of the “first.”  Who would want to be the “first?”  I know that this transplant is risky as it is, as hospitals only do 1-2 a year, but to be one of the first… that is a different story.

I much rather go with a surgeon who has done more of my transplants even though the center may not be as “large.”  The doctor that is at the Cleveland Clinic is supposed to be world renown and has been doing them for close to 30 years.  He has supposedly done more multi-organ visceral transplants than any other doctor in the world.  I found out that he has the longest surviving intestinal and multi-visceral transplant recipients in the world, surviving more than 19 years post-transplant with excellent quality of life.

I also found out how he pioneered different methods for the transplant so that patients can better accept the organs.  He has done studies and found results that supported the minimization of immunosuppressive therapy for intestinal and multi-visceral transplant patients. He found that survival rates for such transplant recipients greatly increased as treatment strategies evolved; this included the reduction in the use of immunosuppressive therapy. That is really a good thing for me because that was one thing that the doctors were really worried about because I have autonomic dysfunction as well as an autoimmune disease. So… they were afraid for the transplant and afterwards (with the anti rejection meds) because I have no immune system whatsoever.

It seems like this doctor really helped these the survival rates for these transplants.  Initially, transplant recipients were treated with the immunosuppressive drug tacrolimus and steroids. In 1994, this protocol was discontinued due to high mortality and morbidity rates. The five-year survival rate for these patients was 40 percent.  Nowadays, patients are given a pre-conditioning protocol with agents that deplete recipients’ own immune calls. Their post-transplant drug regimen is minimal and initiated with tacrolimus, followed by steroids when necessary. Tacrolimus doses are subsequently spaced to a single dose twice to three times per week with a careful weaning process that are started three to six months after transplant. Through the use of new immunosuppressive and management strategies, the five-year survival rate for patients increased to 68 percent, which is similar to any other abdominal and thoracic organ transplant procedure.  He earned that patients who are using multiple anti-rejection drugs over a period of several years may experience long-term detrimental effects, which erodes survival rates beyond 10 years post-transplant!

In addition to this doctor being so knowledgeable and such, it is also a lot easier to go to Cleveland than to the other places.  Even if there was an emergency, we can get to Cleveland much faster than to Nebraska or even to California.  Worse comes to worse, dad can put me in car and we can drive there.  It might take like 12 hours to get there, but we would never be able to drive to the other hospitals.  In addition, whereas if there was an emergency I would have to be heliported to Hopkins of there was an emergency because Nebraska and California are too far, I probably could be heliported to Cleveland because it is much closer.

So… hopefully Cleveland will work out for me.  I sent over my records and I am waiting to hear back.  They said they are going to work over the “financial” information and when that is all done, they will contact me for an appointment.  Hopefully it won’t be too long because time is of the essence and I am rapidly deteriorating.

I know I am getting worse because not only am I feeling worse and seeing myself get worse, but my cat won’t leave my side at all.  My cat, Missy, is really unbelievable because she is like my “babysitter.”  She will literally stay by my side whenever I am sicker than usual and nowadays, she won’t leave it at all.  She will follow me to the bathroom, even though she is only going to follow me back to bed.  If I am in a different room than she is and she hears me stirring, she will literally come running because she doesn’t want me to be alone.  I have nicknamed her “twinkle toes.”

I am really scared of what is going to happen to me. I can barely get off the couch anymore and I am just so weak.  Even my brother has noticed the big change in me and has said, “I miss the old Fallon.  I miss you walking around.”  Even though I was sick before, I was able to conceal it and push onward.  I was able to “not give in” and able to still do things even though I was greatly limited. However, it is basically impossible nowadays to do anything.  I literally just lay around all day and can’t move a muscle.

This disease is really taking everything from me.  Not only is it making me feel really bad and wiping me out, but it is also deteriorating me physically and emotionally.  It is making me look so ugly that I literally hate looking into the mirror.  I can’t believe what this disease has made me turn into.  I look worse than “death.”  If I go outside… I have to put on loads of makeup in order to look “not scary!”  Thank goodness it is the wintertime so that I am able to wear “bulky” clothing.  At least that makes me not look as bad as I really am.  I am like a walking skeleton, as my legs are skinnier than toothpicks.  I don’t like to smile anymore because my mouth and teeth is worse than a Jack O’Lantern.  I have no tone or muscle left in me and my skin just sags on my bone.  Therefore I have wrinkles and everything on me because there is nothing to hold the skin up.  It is so embarrassing.  When I take pictures, I literally have learned how to airbrush them before I show or post any of them.  So… when you see these pictures, don’t be fooled by the appearance.  I cry all the time because I hate the way I look.  This disease has turned me into looking like a monster.  It used to be that it only made me look like a “freak” because I changed colors. Now it has made me look horrible and like a monster!  My parents try to make me feel better by saying that I “don’t look so bad,” but they are my parents and they are supposed to say that!  It is bad enough that I am “sick,” but I wish I didn’t have to look so bad.  This disease really robbed me of so much.

Dad says that the reason that I am suffering so much is because I am being “tested” for something.  He said that when I die, I am going to be something big!  He said that perhaps I am being tested to be the “head angel” or something.  I know that this probably isn’t true, but dad is doing anything and everything to keep my spirits up and to keep me going.  Dad doesn’t want anything to happen to me.  We all know that if something happened to me, he would NEVER survive.  He already bribes me that he won’t take his medicines or that I won’t even recognize him when he comes up to heaven with me if I should die before him because he isn’t going to take care of himself.  He acts like I have “control” over the situation.  Even though he knows how much I am suffering and doesn’t really want me to suffer, he doesn’t want me to “leave” and such.  He knows that he is being “selfish,” but he doesn’t want to lose me.  I can’t blame him because no parent wants to lose a child, but I just don’t know how much more I can take.  I do know that I continue on so much because of him.  I am so worried about him because I know that he wouldn’t be able to survive without me.  He is a big reason why I continue onward.

Did you ever hear the song I WAS HERE from Beyoncé?  That is my favorite song.  If you ever heard the song and listened carefully to the lyrics, you would see why I love that song so much.  I feel like it really describes my life. This song makes me think of how valuable life is.  This song talks about how Beyoncé has achieved all she ever dreamt of and it was fortunately more than she thought it would be.  It also talks bout her leaving her footprints in the sand of time and making a positive impact in people’s lives.  It makes me think of the impact I really want to make in the world and how I am not really done here.  It makes me want to live even more because it made me realize that I am not done with all that I set out to do.  There is just so much more that I want to do.  I want to get married and have a family, to become a doctor, to enjoy life, etc. I want to do so many things that this horrible disease has robbed me of.  It is so unfair what this disease has done to me.  As the song says,

“I want to leave my footprints on the sands of time;

Know there was something that meant something that I left behind…

When I leave this world, I’ll leave no regrets,

Leave something to remember, so they won’t forget…

 

I was here;

I lived, I loved – I was here…

I did… I’ve done everything that I wanted, and it was more than I thought it would be;

I will leave my mark so everyone will know – I was here….

 

I want to say I lived each day until I die,

and know that I meant something in somebody’s life…

The hearts that I touched will be the proof that I leave

That I made a difference, and this world will see…”

 

With the holidays coming this month, me deteriorating so fast, and me leaving or Nebraska, I am probably going to give my gifts to my family before we leave for Nebraska on Monday.  I can’t wait to give them the gifts because I don’t want to wait … just in case something should happen.  All the gifts should be arriving by Friday or Saturday… just in time before we leave.  So…  I am seriously thinking about giving it to them before I leave so I know that they have them.  I would tell you now what I got them, but I am afraid that it would get out and they would see it. When I do give it to them, I will definitely tell you what I got them.  I wanted to make these holidays really special because the doctors already said that this would probably be my last holidays unless a miracle happens.

With the holidays coming, I am also hoping that a “miracle” will happen this month. I desperately need treatment, and money is getting harder and harder to come by.  All I am asking is for help from others, whether it is through donating, spreading the word that HELP is needed, or by even saying a simple prayer for me!

It just stinks that getting better depends not only on me but in the hands of everyone else because getting better depends also on money… something I don’t have!! I always wonder what the world would be like if money didn’t exist. I think everyone would be better because it seems like it is the evil to everyone!! Remember that book we once read where the girl had cancer and she built cranes because she believed that if she reached a certain amount of cranes, she would be “cured?” I am hoping to achieve the same thing but with prayers. Prayers are very powerful and the best part about them is that they are “free!”

Well.. gonna get going. I have bloods in the morning. I am really afraid because I have a feeling they fell even more because of all the increase of mucous that has been occurring.  I just hope that I don’t end up in the hospital because my bloods are so very low already.  I know how easily my heart can have an arrhythmia or cardiac arrest, so I am hoping that they haven’t dropped even more.

Well… until next time…

– Fallon

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November 25, 2012

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Hey-

Just wanted to update you on that I made it through another ketamine coma.  However, what a day I had!  Like usual, it is always an adventure when I undergo one of these comas. 

I didn’t know really if I should have it done because like I said in the past blog, I didn’t feel very well and I was sick with a “bug!”  Besides my usual illness and not feeling well because of my usual complaints, I also was suffering from an additional “bug,” as I had severe stomach pains and a fever and was weaker than usual.  I think perhaps I might have had a stomach virus on top of everything else.  But, I knew how imperative the ketamine coma was because I was in so much pain, as I was literally climbing the walls with pain.  The disease has also been spreading like crazy and hopefully the ketamine coma would help “contain” the disease to a point. 

I am also leaving for Nebraska in 1 week and therefore, I was literally out of time because I couldn’t have it at a later date because first of all I was in way too much pain.  I don’t get any escape from the pain whatsoever and it has gotten to the point that even with maxing out on all the meds, the pain was still way too much to bear.  I really needed a relief from the pain… even if it was just for a day while I was under because the amount of ketamine that I need to actually help with the pain after I come out of the coma is way too great.  I am in too bad of shape and need an amount that is not FDA approved.  Therefore, the most that the ketamine really helps for is during the coma.  But even though it only helps for this short amount of time, I will take it because any relief is better than no relief since this is the worst pain imaginable and I never get a single second of rest from it.  So, I had to have the ketamine coma done now because if it wasn’t done today, I wouldn’t’ be able to have it done til after I came back from Nebraska, and I wouldn’t have made it that long. 

When I go to Nebraska, I will be undergoing lots of testing.  Even though the effects of the ketamine on the pain will be over with long before then, we still don’t know how long the actual effects of the ketamine will affect my body.  After all, when I come out of the coma, the ketamine affects my body even worse than it did before in the sense that it really stirs up my autonomic dysfunction.  My disease doesn’t like to be “messed” around with and therefore, whenever something or someone messes around with it… it “pays” me back big time.  As a result, I will pay for it big time afterwards, as my autonomic dysfunction will flare up big time afterwards.  I will get a whole array of sensations from cold sweats (even though I can’t sweat because of the autonomic dysfunction) to feeling prickly to having trouble breathing to many other things.  But, it all is worth it to have that relief during the day. 

In addition, we don’t want the ketamine to possibly “mask” anything that could be occurring in my body.  We want the doctors in Nebraska to get the FULL picture of what is happening with me and want the tests to show the actual picture of me because the doctors have to know the exact and appropriate way to treat me.  After all, I have tried all different types of treatments already and nothing has worked.  We are going to Nebraska for evaluation and workup for the transplant, as I need a multi-organ visceral transplant, which includes a stomach, small and large intestine, and pancreas.  Therefore, we aren’t talking about a  “minor” thing.  This is a very major workup because this transplant is very MAJOR.  It is very rare and VERY risky.  In fact, it runs the highest rate of rejection of all transplants.  Since it is so dangerous, rare, and risky, only 8 hospitals in the entire United States actually do this transplant.  Therefore, we can’t be playing around and getting “false” information.  You know? 

As I said before, Ketamine is an NMDA receptor, otherwise known as an inhibitor of N-methyl-D-aspartate (NMDA) receptors. These receptors permit the transfer of electrical signals between neurons in the brain and the spinal column. Studies support the idea that RSD results from a dynamic change in the physiology and structure of central pain neurons mediated by NMDA receptors. When these receptors malfunction, enzymatic and metabolic cascades occur in pain cells, and the degree of pain is magnified out of proportion.  As an NMDA antagonist, ketamine blocks central sensitization.  The theory is that the coma allows the constant throbbing pain connections from the body to the brain to reset, like a computer reboot. 

Therefore, we aren’t playing with an “easy” or “everyday” drug.  In fact, this drug is a drug that is not even really FDA approved.  It is even known as a “horse tranquilizer” or “Special K.” Due to the hallucinations, which may be caused by ketamine, it is not typically used as a primary anesthetic, although it is the anesthetic of choice when reliable ventilation equipment is not available.  It has many short and long-term effects and we can’t afford for them to play into a factor of the results of the testing as it could possibly “mask” or alter the results.  Therefore, we had to have the ketamine coma today since the trip is scheduled for next week in order to give my body time to go back to its “usual” state and so that the doctors can see how it actually is.  I can’t afford for the doctors to get a false sense of my body because I am in too grave of a state.  I am literally dying and deteriorating rapidly.  I am extremely fragile and the wrong move can literally “kill” me.  In fact, the doctors know how fragile I am and that is partially why they want to do so much testing on me.  They want to know me from head to toe before they even touch me because they know the slightest wrong move can literally “kill” me. 

 

So I really had no choice but to go for the coma today because like I said… I was in way too much pain and I had to go because Nebraska is scheduled for next week and I needed time for my body to go “back” to the way it usually I; I couldn’t afford for the ketamine to mask anything that it possibly would.  So, like always, dad took the day off and took me for my ketamine coma.  Even though the pain relief from the coma wouldn’t last after I awoke from the coma, at least I would finally get a relief from my suffering for the day.  I would finally have a day “free” from suffering and I would have a day of “rest” because this would be the only “sleep” that I get since I don’t sleep at night. The pain is way too much to bear at night and I can never get comfortable.  I can’t even sleep with a blanket, as the slightest touch literally sends me up the walls.

But like always, the ketamine coma is always an adventure.  At least when I go for the ketamine, the staff at the place is extremely nice and reassuring.  It is really is great that the staff is the way that they are because when you are going through something like this… a warm smile or the “niceness” that they show you really goes a long way.  They really treat us like “family!”  It really is nice to go there because they give us “first rate” treatment.  Even though the waiting room is usually crowded, they never make us wait.  They always take us right into the back and I always wonder what the other people in the waiting room are saying about that.  I know that if I was waiting all that time and someone came in and went right into the back before me, I know I would be mad and say something.  But, it is very nice that they take me right in back because I can’t really be around a lot of people since I suffer from an autoimmune disease and can’t really afford to be around a lot of people.  If I get sick, it could be really bad because I can’t fight it.  Everything is magnified for me and therefore, a simple cold is like getting the “flu” to me and it can easily put me in the hospital.  I have no defense mechanisms and therefore, I catch everything.  In addition, I appreciate being brought right into the room because I don’t have to wait long, as the doctors can get me ready to be put “under” right away instead of having to wait around.  Nothing is worse than waiting around for this because I get antsy. 

What an ordeal we had.  To begin with, the doctors had a hard time starting my IV.  I used to have such great veins.  Yet, they have since become so fragile.  The veins just kept blowing and infiltrating today.  I was in so much pain too while they were doing it as well.  As I am so hypersensitive, a simple needle stick is like someone sticking a “knife” into me.  It is excruciatingly painful.  Yet, after the IV was started, they did give me so lidocaine, which was supposed to “numb” the pain.  But, I was in too much pain and it barely did.

During the coma, my dad and the doctor had a very long talk.  I guess there isn’t anything much else to do when I am under.  I mean… since my dad and the doctor are there for many hours just watching me… they talk.  When I undergo a ketamine coma, the doctor won’t really take on any other patient because he has to be fully available for me in case something should happen.  So, I kinda have both their full attentions for the entire day. So, since they both really had nothing to do since I was “sleeping” as the ketamine was doing its “magic,” they were talking.

They spoke about many things, but one of the things they spoke about was of the upcoming trip to Nebraska.  The doctor feels that I am in too fragile of a state and not up to having the transplant.  He told my dad that if I go to Nebraska and have the transplant, I am going to die.  He literally said that I am “going to die if I go to Nebraska and have the transplant.” I can’t believe he said that because you don’t go and say that to my dad who is freaking out about the transplant as it is.  My dad is the type of person who listens to everything the doctors say because he would do everything and anything to get me well.  My dad would literally have me living in the hospital all the time because in his mind he thinks that nothing can happen to me in the hospital because the doctors wouldn’t let anything happen to me.  If the doctors say, “jump,” my dad will literally say “how high?”

I honestly couldn’t believe that the doctor was telling my dad that I was going to die if I went to Nebraska to have the transplant.  My dad said to the doctor that “the doctors in the Nebraska wouldn’t do the transplant if they thought I was too fragile” but the doctor then told my dad otherwise.  The doctor explained to my dad that when you are dealing with me, they will do it no matter what because there aren’t any really other options and they aren’t going to just “turn me away” and let me die and do nothing.  So now even though my dad was nervous before about going to Nebraska and having this major transplant, he is even more nervous now because of what this doctor said.  My dad knew that I was very fragile, but he truly believed that if the doctors thought in Nebraska that I wouldn’t make it through the transplant, they wouldn’t do it.  Now… he was being told otherwise.

Then, we had another complication because I needed to get injections as well during the time that I was under the coma.  I need to get injections into my knee and such, but as I said before, I am way too hypersensitive and therefore a simple needle stick is like someone sticking a knife in me.  Therefore, in order to make it less painful on me because it is too painful for me to bear them putting a needle especially into my leg, they can only do these injections while I am in the coma.  Yet, with everything going on today, the doc waited too long. 

When the doctor came into the room to do the injection and got everything all set and ready to do it, and my dad was like “I don’t think its a good idea… she is starting to wake up.”   The doctor had everything all prepared and ready to go and therefore, the doctor was like “don’t worry… it will be ok… she won’t feel or remember it. We will freeze the sites and stuff.”  Anyway… I was waking up like my dad was saying so When he was going to do it I opened my eyes momentarily because when you are coming out of the ketamine coma you come out in spurts and then go back and forth… but I was like “I Don’t think so!  You are not going to do that to me!”  The doc was freaked out because I opened my mouth just as he was about to do it. I was like “You are not going to be doing that unless you knock me back out!”  But since I was knocked out for a while already and my blood pressure and heart wasn’t so good, they said it would be too risky to put me under again so soon.  So… there went the injections.  The doctor couldn’t give it to me.  So… part of the reason I went for the coma… which was so I could get the injections…. I couldn’t do.

To make matters worse, I ended up spitting up all over my dad.  When the coma was all done and it was time to leave to go home, I had to depend on my dad to carry me.  I am always “too out of it” to walk and therefore, my dad becomes SUPERMAN and always carries me out and to the car.  He then carries me out of the car and into the house when we get home.  Thank goodness that I weigh so little because at least my dad is abele to carry me.  At least there is one good thing about weighing so little.  Anyway, I ended up spitting up all over my dad because I was so very sick.  My dad just happened to be wearing his new jacket too today.  He couldn’t believe that it was the very first time he was wearing it and I already spit up all over it.  I felt really bad when he told me about it afterwards. 

Well, that was my day.  Now I just have a bad bellyache and have to worry about the side effects of the coma, which among them are the strong hallucinations and nightmares.  The ketamine puts me into these nightmares that are so vivid that my parents literally have to wake me up out of because I can’t get myself out of them myself.  My mom literally has to wake me up all throughout the night so that I don’t spend so much time in the nightmares because they are so very vivid and scary.  That is one of the really big downsides of the ketamine.  Even though they try to give me something to minimize the effects of the ketamine, it isn’t 100% alleviated.  If they are this bad with the drugs that they give me to counteract the ketamine, I can only wonder what it would be like without the drugs.

My dad is really funny when I go for comas because he watches me so carefully.  HE knows when I “fade in and out.” He is always like “Fallon is on a trip.”  He is so funny. But, thank goodness that I have my dad around because I need him more than ever.  He is my “superman!” He literally has to carry me out of the place, put me in the car, and then carry me into the house because I am totally not “with it!” Without my dad… I definitely wouldn’t be able to do any of this and I definitely wouldn’t have made it this far. 

So… I guess I am going to go and rest.  It has been a long day.  Just wanted to update you on what happened today.  It is going to be a busy week because leaving Monday, December 3rd, for Nebraska.  Gosh… it is going to fly this week because whenever you don’t want something to happen… time always flies.  I am really going to miss my mom because like always, my mom will stay back.  I just hope that this trip isn’t going to be so bad because traveling is so “hard” on me. 

I also want to get stuff ready for the holidays this week because by the time I get back, the holidays will be here already.  I really want to get something special for my parents because they are two of the most special people in my life.  They have done so much for me throughout my life and I want to really make their holidays special.  Plus, with the doctors saying that unless a “miracle” happens I won’t be here next holiday season, I really want this holiday season to be special.  But… with money being so tight as well, it is kinda going to be difficult.  I just wish I knew what that perfect gift would be other than “getting well.”  They have given up so much for me such as not being able to go on vacation, going out to eat, having to work so much, etc.  They really have given up so much so that I can live and I can’t ever thank them enough.

My family has had such a difficult life.  Even though they don’t have my illness, they are still affected, as there is an overshadowing threat the outcome of this illness will be my death. This is a tremendous additional burden, which intensifies the challenges of everyday life for the family, because they periodically have to deal with grief and great uncertainty. My parents have always shown how strong they are even though they may fear at times hopelessness and fear of me dying. Being a parent with an ill child is heart wrenching, and I know how much it pains them that I am sick.

I am really going to take full advantage of this holiday season.  I hope that they have lots of decorations in Nebraska because I love looking at all the decorations on the houses.  It is the best time of the year.  It is amazing how neighbors get so competitive as to who has the BEST house in looks.  But, even though they become competitive, it is better for the public and neighborhood because the houses become extravagant to see.  Since I won’t really be around to appreciate the holiday season in NY, I hope that they have lots of houses decked out in Nebraska so that I can still see the extravagance.  But we all know that no one does nothing as good as New York.  New York has the BEST of everything.

As for me, I don’t really have much that I want for the holidays.  I really want to get well and therefore, what I want is that “miracle” of getting well.  But, I am at least hoping that I get some funds so that I can continue treatment or at least hoping that some of the letters that I wrote to the media will be answered and as a result, they will feature my story so awareness can be brought to my situation.  I am hoping I might have better luck since it is holiday time!   But… like everything else… I don’t expect much and this way I don’t get hurt. Since I have dreams of having a family of my own and leading a productive life, I refuse to give up hope that maybe my holiday wishes will come true.  

Well… talk to you soon. 

– Fallon

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November 23, 2012

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Hey-

Just wanted to write a quick update to let you know that I am undergoing an EMERGENCY KETAMINE COMA in the morning.  Things have gotten to bad that I have to do it.  I can’t take the pain anymore and the suffering has just gotten too unbearable.  So… by the time you are reading this, I will probably be under the coma already.  Please cross your fingers that everything will be ok and everything will go “smoothly” because it is very dangerous, especially because I am sick with an extra “bug” to begin with.  But I will explain that soon.   Hopefully the ketamine coma will give me some relief because I am literally climbing the walls. I am on so much pain medications such as methadone, morphine, dilaudid, nucynta, etc., but nothing is cutting it.  I really need this coma to work.

Ketamine is my only option for my neurological disease.  I have tried various treatments including medications, stimulators, sympathectomies, etc., but all were unsuccessful. Sadly, my condition has been spreading throughout my body, and I now have it everywhere.  I have developed severe gastroparesis, my limbs are frequently turning purple and are swollen, and I am in excruciating pain (It is considered to be one of the most painful diseases out there).  So… besides the multi-organ visceral transplant that I have to worry about that only 8 hospitals in the country do and aren’t really covered by the Insurance, I have to worry about affording this coma out-of-the-country as well.  Who said when it doesn’t rain it pours?

Ketamine is the most potent clinically available inhibitor of N-methyl-D-aspartate (NMDA) receptors. These receptors permit the transfer of electrical signals between neurons in the brain and the spinal column. Studies support the idea that RSD results from a dynamic change in the physiology and structure of central pain neurons mediated by NMDA receptors. When these receptors malfunction, enzymatic and metabolic cascades occur in pain cells, and the degree of pain is magnified out of proportion.  As an NMDA antagonist, ketamine blocks central sensitization.  The theory is, the coma allows the constant throbbing pain connections from the body to the brain to reset, like a computer reboot.

Ideally, the amount of ketamine that I need is far too great than is FDA approved.  As a result, I really need to go out of the country to get the amount of ketamine that I need.  However, the countries that have been doing the experimental ketamine coma, which is extremely dangerous, are no longer doing it.  As a result, my doctor is awaiting for the IRB review board to grant him the ability to send patients to Santo Domingo because that is where I will be able to receive the amount of ketamine that would be able to help me.  In this version, the patient is placed into a medically-induced coma and given an extremely high dosage of Ketamine; typically between 500-700 mg per hour for 5 to 7 days. However, the cost of this coma out of the country would be astronomical, as it would be near or even over $100,000.

Since I cannot get the coma as of now out-of-the-country, I have had to make do with other options.  I have been undergoing the coma within the United States even though it is not nearly high enough to even come close to “curing” me. The most I can hope for with this coma is that it will relieve the pain and suffering that I am in for the amount of time that I am “under” and perhaps contain the disease a bit.  My disease is spreading like a wildflower and as a result, it really needs to be slowed down.  The hope is that at the very least, this ketamine is slowing the progression.  So, I have only the option as of now to go for comas that are for single days.

However, I have went to see a doctor in Florida who will give me three days of Ketamine infusions. If this procedure works, I will need Ketamine booster shots all of my life. Unfortunately, insurance companies do not currently cover this procedure, and it will cost over $10,000 for the first treatment and thousands more each year for the booster shots. So, I really need to raise money so that I can afford this treatment.

But… the ketamine coma is extremely dangerous.  Ketamine is not a “everyday” drug. It gives me extreme hallucinations and as a result, I get really bad nightmares from them.  I bring my iPod with me to try to use the music to block the “bad” stuff from happening.  Even the night that I usually have the coma isn’t a “good” night for me.  After the coma, my parents have to literally keep waking me up because the coma gives me so many nightmares that I can’t get myself out of by myself.  As a result, my parents have to stay awake so that they can get me out of them because they are really scary.  In addition, my autonomic dysfunction really stirs up afterwards.  It is like my disease really doesn’t like to be “messed” around with and as a result, it literally “pays” me back.  It is like the saying goes… “Payback is grand.”

Some people might ask why do I go for it then?  I go for it because I am in so much pain 24/7 and never get a break from it. The pain is so severe that I would do anything for a minute without the excruciating pain that I undergo.  People can’t imagine how bad the pain is.  The pain is so bad that I don’t even wish it on my worst enemy.  My father is constantly saying that he “wishes that he could take the pain away from me.”  But I tell him that he would “never last!”  This pain is the most excruciating pain you can imagine.  If Hell was a clinical medical condition… it would be my disease.  On the pain scale… it is way off the chart.  So… if I can get one minute of relief… it is well worth it.  At least when I am under the ketamine coma for the day, I am out of my pain.  We are also hoping that since the I am rapidly deteriorating and getting worse, hopefully the coma will slow the progression as well.  But, at the very least… at least I will have one day out of pain when I am “under” and one day that I will be able to “rest” because I never sleep.  I can’t sleep because I can’t get comfortable.  I can’t even have anything touch me basically… not even a blanket because the slightest touch of anything sends me up the walls.

So… my dad will be taking me in the morning for the ketamine.  What would I do without my dad? I feel so bad though because he has to miss so much work because of me and then he works so much harder in order to make it up.  My dad will spend the entire day sitting in the room just watching me “sleep.”  He probably will take my iPhone like he always does and snap pictures.  He takes pictures of just about anything.  I love to see what he snaps the pictures of when I wake up because he takes pictures of dirt, his eyeballs, his teeth, his bald spot, his watch, the IV bag, the monitors, and of course me.  He will literally take pictures of anything and everything.  He says, “What else am I going to do for all those hours?”  Of course he also sleeps during that time, which makes me feel better too because I know how tired he is.  At least I know he gets some “rest” during this time too.  In fact, one time when I went “under” my dad fell asleep before I did. He even said one time “Will you please go to sleep already so I can?”

My dad is certainly the best!!  I know I can count on my dad for anything.  I made sure I fed him very well today because he will need all his energy tomorrow.  After ketamine, I can’t walk.  I can’t walk in general without the aid of the crutches, but when I undergo ketamine, I can’t walk even with them.  As a result, my dad becomes SUPERMAN and as a result, my dad will literally carry me out of the hospital, to the car and then when we get home… my dad will carry me into the house.  My dad is certainly my HERO!!

But… hopefully everything will go ok because I am “sick” to begin with.  I am not just sick with my usual ailments from my disease, but I woke up today with a bad stomachache and a fever.  We are hoping that it will pass or that I will feel better by the time that I go “under,” but it does make the coma more risky than usual.  We thought about postponing the coma, but this is really the only time that we can do it because we leave next week for Nebraska.  As I am undergoing so much testing in Nebraska next week, we don’t want the ketamine to interfere with the results or skew them.  As it is… we don’t really know for sure if they will impact them.  We are hoping that they won’t because we sill have 10 days til the testing begins (as they begin on Tuesday, December 4th), but we can’t afford for the ketamine to be any closer to the date.  Plus… with all the suffering that I am undergoing… it just can’t be postponed anymore.

I also need injections into my knees because I can’t even put pressure on them.  The doctor has to inject some stuff into them, but due to my illness, I am too hypersensitive to just have the injections done without being in a coma.  Therefore, that is another reason why a coma is warranted because I can’t even walk anymore unless these injections are given.

What a day I did have today.  Who said it wasn’t BLACK Friday?  I had a bad day right from the beginning.  First off… I woke up sick.  I had that huge stomachache and fever that I couldn’t shake off.  Out of all the pains and such that I get, the worst thing for me to tolerate is stomach pain.  I have always been that since I was a kid.

Since I wasn’t feeling well, I was resting on the couch during the day.  My cat, Missy, never leaves my side. As I said in the past, Missy will always stay with me and when she hears me awake or moving, she will come running all the time.  I even nicknamed her TWINKLE TOES.  Anyway, I happened to get up to go to the bathroom and guess who came running with me to the bathroom?  She was trying to get my attention for something and then I heard banging going on in the bedroom, which was right next to the bathroom.  I was like “what is she doing now?”  When she brought me into the bedroom, guess what I saw?  She alerted me to a guest, as we had a bird in my mom’s room.  I couldn’t believe it. I was like “O great.  What do I do now?”

I couldn’t believe that there was a bird in the house.  This was the last thing that I needed.  I was waiting for the bird to come out of the room and start flying all over my house.  I wanted to lock the bird in the room by shutting the door, but I didn’t want to leave my cat in there with it.  I called my dad to come home to get the bird out, but my hero wasn’t going to be able to come home for another 30 minutes. You know how many things could happen in 30 minutes?  So, I left my cat with the bird in the room for that time.  My cat is simply the best.  She finds everything.  Whenever there is a bug or something in the house… we can depend on Missy to find it!!

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Well… how was your Thanksgiving?  My thanksgiving was ok.  Even though I couldn’t really eat, my family said that it was very good.  We had yummy turkey, as well as delicious side dishes.  I found out a new way of making the turkey and I don’t know if it was because it was a KOSHER bird or because it was cooked differently, but the bird was out of this world.  It was cooked the day before (Wednesday).  Then I carved it on Thursday and smothered it in gravy.  I then baked it again for another 30 minutes.  It came out phenomenal.  I think it was because the gravy soaked into it.  As for the side dishes, we had Sweet potato pie, whipped potatoes, zucchini soufflé, stuffed mushrooms, rigatoni a la vodka, candied yams, and grilled veggies. Everyone said it was “too much food” but it went.  Even with my dad talking about how the typical Thanksgiving meal was 4000 calories didn’t stop them.

It was just a nice day overall, my mom and I watched the parade together.  It was so nice because it is a tradition that we always have done since I was a little girl.  We would always watch the entire parade together until we see Santa at the very end.  I always get told too by mom how she wanted to be a “rockette” when she was younger.  To think… I was going to miss out on all this because I was going to be in Nebraska.  I was really quite glad that things turned out the way that they did because I really am glad that I got my wish, which was to remain at home for Thanksgiving.  I was just really upset that my dad had to work because he should have had to.  He should have been home resting and enjoying the day off.  I would have loved to watch MARCH OF THE WOODEN SOLDIERS with him because that is the show my dad and I have watched every year together.  But… hopefully it will be on for Christmas and we will watch it together then.

I had so much fun.  But, I couldn’t stop thinking that this could very well have been my very last year doing all this if a miracle doesn’t happen. It makes me more than ever hope that I’ll be able to receive the treatment/transplant that I need so that I’m all better and able to be here next year. I wouldn’t wanna miss this for the world.

However, I did take pictures to remember this Thanksgiving.  I didn’t like the way I came out because due to how much weight I lost and as a result, I retouched them and edited them.  Not only did I retouch them to remove the unwanted markings, but I also cropped out all the bad stuff that I didn’t want in the picture like my lower half of my body.  I wanted to put them up on FACEBOOK, but I didn’t want to people to see them the way I actually look.  So, I edited them to remove all the “bad” stuff on them that make me look so “sickly.”  I must say that I did do a great job because I came out looking pretty good in the pictures.

I have wrinkles on my face and such.  I don’t have any muscle or fat on my face and therefore, the skin literally just falls over the bones on of my body and you can see every crevice and bone protruding in my body, which includes my face.  I am very self-conscious on how I look.  In fact, when I go for glasses, I always go looking for the pair that will “hide” the lines or wrinkles.  I don’t like them being seen.  I am also very self-conscious about my body because I am so thin.  I am so bone thin that I look like a walking skeleton. I hate when I get pictures that are of my entire body because they show how very thin I am and how my legs look like tooth picks.  I always tell people to take pictures from the waist up to avoid this problem.

Well… we are onto the next event… it is holiday time.  Time for Chanukah and Christmas.  I already set my phone up with the ringtones and text tones for the holidays.  I love this time of the year because I love looking at the lights on the houses.  Even though I hate the cold and hate the snow, I love looking at all the decorations. I used to love driving in the car at night and looking at all the houses decked out in lights.  I love seeing all the extravagant houses and seeing them all outdoing each other.  It is amazing how competitive people get with their decorations!

My brother keeps asking me what I want for the holidays.  I keep telling him I don’t know because I really don’t want anything that he can give me.  As I have dreams of having a family of my own and leading a productive life, I refuse to give up hope.  I really want to get well and therefore, what I want is that “miracle” of getting well.  But, I am at least hoping that I get some funds so that I can continue treatment or at least hoping that some of the letters that I wrote to the media will be answered and as a result, they will feature my story so awareness can be brought to my situation.  I am hoping I might have better luck since it is holiday time!   But… like everything else… I don’t expect much and this way I don’t get hurt.

Anyway… it is getting late and I wanna do a few things before I leave for the coma.   I wanna get my iPod ready with some music and rest a little because I am not feeling well.  Hopefully everything will go ok tomorrow with no complications, which will be a miracle because something always happens.  But… hopefully nothing MAJOR will happen and I will be able to go home tomorrow instead of staying in the hospital.  I don’t count on everything being OK from the coma until I am safe and sound at home.  It is amazing how when I get home and my dad carries me into the house, my dog always has to come over to check me out.  He always has to make sure that I am ok.  My animals are certainly the best.

Well… until next time!!

– Fallon

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November 22, 2012

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Hey- 

Happy Thanksgiving. Just want to write a bit because I haven’t written and want to wish you a very HAPPY thanksgiving.  Hope you have a very wonderful thanksgiving and eat plenty of yummy turkey. Make sure you eat some for me because I can’t eat any.  One day I will be able to… but that will only happen if I get the transplant or a miracle happens… all which won’t be possible without the help of others.  I really can’t afford treatment anymore, but I am hoping that especially with the holidays being here, people will be willing to give more than usual.  It would certainly be a wonderful “gift” to be able to continue to treatment through the donations that I receive.  It would be a gift of “life,” which would be the BEST gift in the world. 

Anyway… today is Thanksgiving and it is definitely not the same as it always has been.  You can see how much my illness has taken a whole toll on my entire family.  First off, my family used to remain at home and spend the day together.  However, my father is forced to working this thanksgiving, which is something I really am upset about.  Secondly, even the whole spirit of thanksgiving is gone.  It used to be such a ‘fun’ holiday with my dad making his famous ‘gobbling’ all throughout the house.  Now the house is filled with nothing because everyone is too tired and sick to do anything.  It is like my illness has wiped everyone else and took the word FUN out of everything.  Thirdly, it is also the first time that I am not cooking.  I always cook thanksgiving meal, so for me not to cook… it shows that things aren’t good.  Nothing usually stands in my way of cooking and for me not to cook… something has to be wrong.  Even my dad says so! My dad says that for me not to cook… something isn’t right… I have to be really sick!!

My dad is certainly right. Things have gotten so horrible.  I really don’t know how much longer I have.  My bloods are dropping, my organs are shutting down, my weight is dwindling, etc.  The pain is getting so intense that it goes from the surface all the way down to deep in the bone.  The pain is relentless and doesn’t give up.  I never get a break from it.  No matter what medication I take, even when I max out on all the medications that I have… nothing cuts it.  I am in so much pain and agony that sometimes I wonder if “passing on” isn’t the “better” option.  However, I know how much it would pain my dad and how much my dad would never get over it, so I continue to push onward.

Everything is touch and go with me.  We never know literally from each day if I am going to wake up in the morning.  Even my brother has noticed a great change in me.  My brother has noticed how I really don’t even move.  He has even said to me how I don’t really do “anything” anymore except lay on the couch.  I basically can’t get off the couch because of how I am feeling. I am just way too weak and in too much pain to move.  I keep wondering when the pain is going to stop or if this is going to be the very last day on earth.  But… each time I think and hope that it would all end and I would move on, I keep thinking of my dad and I continue to push onward.

I only wish that a “cure” or some help would arrive soon because I honestly don’t know how much more I can take.  I am really suffering and I don’t know how much longer I can tolerate.  I really don’t want to leave my dad because he wouldn’t be able to go on, but it is getting to the point where it is just getting to be “too much!”  Time is of the essence, as I am deteriorating rapidly, but treatment is really dependent on others because we can’t really afford it anymore.  Even though my family would do anything to get me well, the bills have gotten to great that we can no longer afford the necessary treatment to try to get me to “live.”  Therefore, even though we have made major cuts, we have had to delay treatment and just hope and pray that enough money will come our way so that we can continue treatment.  After all, no one does anything for free and since we don’t have enough money, I can’t get treatment when there is nothing to pay for it.  So… I am just hoping and praying that perhaps we will get some donations with the holidays being here because it is the time of “giving” and such. I have tried one more time to muster up the strength to write to all the media to ask for help, but who knows what will happen.  I have written to all the talk shows, news, etc. but I have done that in the past and nothing has happened.  Maybe this time will be different, but I have to be prepared for it not to be because it hasn’t been so far.  But, I am praying that it will be.

I really don’t want anything to happen because my father would never be able to handle it.  My dad watches me act the way I am… unable to move… and he literally “bribes” me so that I don’t go on.  He thinks that I am in control and he says that if something happens to me that “no one in my family would take care of him or herself or take their medications.”  My dad says all these things that he thinks would ‘force’ me to stay, but he doesn’t realize that as much as I don’t want to go… I don’t have control over it.  I really know deep down how much he loves me and how much he would NEVER survive if I passed on.  He would definitely NEVER recover. 

Dad says that I really need to hang on because we are supposed to be leaving for Nebraska on December 3rd.  We were supposed to be going to Nebraska this week, but the doctors called it on me.  I have gotten too sick that the doctors don’t want me traveling back and forth.  The doctors want to do so much intensive testing in order to know me from head to toe, and it would take longer than the amount of time that we had originally planned to go to Nebraska.  We were originally only planning for spending a few days there, as we were coming home Thanksgiving morning.  However, the doctors insist that I am way “too sick” and the amount of testing and getting to know me would take much longer than that. 

Therefore, we really need to maximize our days.  We can only spend a certain amount of days in Nebraska because of the amount of money that it costs.  Therefore, we can’t afford to spend days in Nebraska where they wouldn’t do anything such as on thanksgiving.  If we were there for that day, we would be paying for spending the day there and nothing would be done because they don’t work that day.  So, between everything happening and so we would maximize the amount done on the days that we were there, the doctors insisted that we come after Thanksgiving.  This way they can fully devote EVERY day to helping me instead of paying for days where they are “off.” 

So… even though we have to put off going, it will work out better because our money would be put to “better use” and we will get more things done.  I really need exploratory surgery as well, but the doctors want to do all this testing beforehand so that they can get to know me from head to toe because they are so very scared for my life.  They said that they never saw someone as “sick” as me, and they are truly scared for my life.  They don’t know how I currently existing, and they are afraid to do anything because the slightest wrong move can really “kill” me.  So whereas before they were going to jump right in and do surgery to explore what is going on… now that it is getting closer and such, they are having meetings and have realized how truly sick I am.  Therefore, they don’t want to do anything without thoroughly investigating what on earth is going on with me.  So… that means more testing and more days.  That is why (like I said before) we needed to wait til after thanksgiving because we needed to use every day to our maximum because more tests were needed than originally planned. 

The hospital in Nebraska are trying to help us out in every way possible and trying to keep my spirits “up” as well.  They are hoping that they will be able to help us out.  I am really nervous because who would think that I would ever end up going to Nebraska?  I mean… out of all the states… who would think I would end up in Nebraska?  The only bad thing about putting off going to Nebraska til after Thanksgiving (besides having to last longer and praying that I make it there because it is awhile off) is that we had to delay going back to California.  We were supposed to go back to California for further treatment because the last time we left there, we had made them a promise that we would return for more treatment since we had to leave since we ran out of money.  Now that we had to delay going to Nebraska, it looks like we will have to delay California as well because I can’t be in two places at the same time.  But, I am hoping that perhaps Nebraska is just as good or hopefully better and therefore, I will be able to get everything done there instead of having to wait and go back to California.  But… only time will only tell.

So… dad and I are planning on leaving for Nebraska on December 3rd.  I am supposed to have exploratory surgery along with all this intensive testing when I go.  But, when I find more information out, I will of course let you know.  I do know that instead of doing everything ‘outpatient,’ which was originally planned, the doctors are now putting me inpatient because the stuff that they need to do is too intensive and I am in too ‘bad’ of shape.  So… I will be in the hospital during this entire time.

At least my dad won’t be so far away.  The doctors are supposed to be picking us up at the airport, which is something I never once heard of in my life.  I mean… who ever thought that docs would do something like this? Anyway, we are planning on staying at the hospital because they have special suites connected to the hospital that act like a hotel.  This way you don’t have to leave the hospital whatsoever and everything is there.  I am so glad that we are staying there for multiple reasons. First, it is really cold there in Nebraska.  So… the less we have to go out in the cold weather, the better I am because I hate the cold, as it goes right through me.  Second, at least I know my dad will be right there in case I need him.  I know that if something should happen that he would be at the hospital in a matter of minutes, but at least I know that he is literally right there in case something should happen, especially with what happened the last time I was in the hospital.  The last time I was hospitalized, my heart ended up stopping and we had lots of other complications.  Things were really touch and go and even my dad felt the pressure.  At one point, my dad even went south to Los Angeles when he was supposed to go north to San Francisco because that was where the hotel was located.  However, he left the hospital very late at night and with everything going on with me, he didn’t realize that he was going in the wrong direction until he was like 2 hours over and saw signs saying LOS ANGELES.  No wonder he couldn’t find the airport when he was looking for it because he knew that the airport was on the way back to the hotel and he was seeing it.  My dad thought for sure he was sleeping in the car that night.  But, he did find his way eventually back to the hotel that night even though it took him so much longer to get back. 

It is also a good idea that we stay at the hospital because it will be so much easier on us.  We have to go for bloods one day at like 5 AM.  Can you believe it?  I can’t believe that they are making me go for bloods like that early.  So, staying at the hospital will certainly be better in that aspect too because we are there already instead of first having to first travel there.  You know? 

I just hope that I can make it to Nebraska.  As I said before, things have really been getting bad.  My cat, Missy, knows it has been getting bad because she doesn’t leave my side.  She is like my ‘babysitter’ because she doesn’t leave my side for a minute.  I call her ‘twinkle toes’ because the minute she hears me stirring, she comes running if she isn’t already with me (which she is already 99.9% of the time).  She will literally follow me everywhere.  Whenever I finally muster up the strength to go to the bathroom, she will literally follow me to the bathroom so that she can only follow me back to bed afterwards.  She also constantly keeps “meowing” and talking to me.  It is like she is trying to tell me something.  She always makes her presence known.  I must say though that it is nice to have her around all the time because at least it is someone to be with even though she takes up the entire bed.

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I am trying to hang in there, but it is getting harder and harder. I can barely move nowadays.  I can’t even make it up the stairs anymore and as a result, I stay downstairs until the very last minute til its time to get up to bed.  My dad keeps telling me that he will “carry” me up, but there is no point because I will only have to come back down to finish getting ready for bed or to do other things before I go to bed for the night.  So, I wait til everything is all done to finally go up the stairs for good.

With everything happening, I am scheduled for an emergency ketamine coma on Saturday.  Dad is taking me first thing in the morning for it.  I really need it because I am suffering so much and I don’t know how much more I can take with the pain because I am literally running up the walls.  Hopefully it will help.  IF nothing else, it will give me at least one day of being pain free because when I am in the ‘coma,’ I feel absolutely nothing. It is like I am in a different world.  People wonder why I would do something so intensive for just one day, especially when it all comes back after the coma ends.  However, if they were suffering the way that I was… they would do anything to get any relief.  Plus… the disease is spreading like crazy and hopefully the coma is ‘holding’ it at bay.  Hopefully, it is stopping its progression or at the very least slowing it down because it is spreading like a wildflower.

I just feel so bad because Dad has to take another day off.  I really feel bad because not only is dad taking off all those days when we go to Nebraska, but he now also has to take off another day to take me for the coma.  Money is extremely tight and we can’t even afford the bills the way we are now.  With missing more work, it is going to be even harder.  Each day missed is detrimental because when he doesn’t work, there is no money being made.  I am so afraid that something is going to happen to the business because there is no work going out or being done when my dad takes off.  The company really suffers.  I am soooo very scared because we are so dependent on the company as well because my dad and mom’s income depends on it.  If the company makes no money, then my parents make no money and therefore, we have no money whatsoever to pay the mortgage or the bills… let alone the treatment that I need.  So… I am really scared.  If something should happen to the business or even my house because we can’t afford the bills or because the work isn’t going out enough since my dad is always with me (trying to save my life), I would NEVER forgive myself.  My family has given up way too much for me and I don’t want them to suffer anymore than they already have.  It isn’t fair to them!

As a result of my dad having to miss so many days, my dad has to work Thanksgiving.  I am really upset about this because my dad is so overworked and needs a day off.  Plus… Thanksgiving is “family” time and should be a day spent at home with the family relaxing.  I was really relieved to be able to be able to spend Thanksgiving at home this year because I was told that unless a “miracle” happened, this was going to be my last thanksgiving.  As a result, I really wanted to spend it with my family.  But, I really wanted my dad to enjoy it as well.  Yet, with going to Nebraska in the upcoming week and now going for the emergency coma on Saturday, he has no choice but to work on thanksgiving.  He is so exhausted and such that I am so upset that he has to work on this special holiday.

I only wish that we could spend this holiday as a family.  I wish my dad didn’t have to work.  We used to all always spend the day together watching the parade, watching MARCH OF THE WOODEN SOLDIERS, cooking turkey, etc.  It was a day for “family” and a day for relaxation, especially for my dad because he works everyday.  However, this year it is not going to be so for my dad who desperately needs it.  My dad is so overworked as he works 7 days a week from like 4 AM til not getting home until 7 PM.  He is so tired from working that he can barely move.  It isn’t like he is even sitting in an office during this time either.  Instead, he is physically doing work, driving, etc.  I feel so bad and I am so worried about him too because he is no youngster.  I am so scared that something is going to happen to him, but he continues to do this because he tries his hardest to support us.  There is nothing that he won’t do for his family.  I just hope that nothing happens to him because if it does, I would never forgive myself!

Well… Turkey day is today.  Unfortunately I wont be eating it though.  One day I will be able to eat it.  This is the first time we ordered the turkey because usually I always make it from scratch.  But, I bet that since we had the turkey made, it is going to come out extra delicious.  The place that made the turkey always has delicious food, so I have no doubt that the turkey won’t be extra yummy too.  I am just so grateful for all that the place that made us the thanksgiving dinner did for us.  Even though we did order a lot, he didn’t charge us as much as it should have been.  Thank goodness because I don’t know how we would have been able to afford it.  I of course chipped in with money so that we could have the thanksgiving dinner because it did come out to more money than if I cooked the dinner myself and after all… it is kinda my fault that we are spending money on the dinner because I could have cooked the dinner if I really “forced” myself.  But… I really wasn’t in any shape or form to do so and therefore, I thought it was only fair to chip in with the money.  I also thought that it would make it easier because I wouldn’t have to spend 30 minutes harping on my dad to help me clean the turkey and put it in the pan (it is too heavy for weak little me to pick up and such), spend all that time and money on electricity to cook the bird (we all know how long it takes to cook a turkey), spend all that time wrestling with the bird to carve it because it is a pain in the butt to carve, and spend all that time afterwards cleaning up (we all know how messy making turkey, carving it up, etc. can be).  So… I thought it would also be better off.

Hopefully dinner will come out to be extra delicious, but time will only tell.  We are planning on having of course turkey, sweet potato pie, candied yams, rigatoni a la vodka, stuffed mushrooms, braised potatoes, zucchini soufflé, grilled veggies, and pickled sweet peppers.  We will see how good everything turns out.  Even though I did “order” it in, there is still stuff to do to prepare thanksgiving dinner, as I have to finish preparing the bird, finish cooking the bird even though it basically is all done (but I gotta prepare it with gravy and such), making the side-dishes, finish carving the bird, etc.  So… there is still plenty to do today and I will still have my hands full even though I tried to make it easier on me.

It really has been some year for me.  Even though I am so thankful for so many things like my dad, the limited amount of people that has shown that they cared even though I am so far away from my goal and having an extremely hard time of coming up with money for treatment… I really lost a lot.  It really has been a bad year for me as a whole.  I lost my best friend, I lost my grandma, and I really have deteriorated a lot.  I am here suffering still and no cure still remains to be in sight.  Hopefully, next year things will be way different and I will be so thankful for everything that has happened. 

Well…  I guess I will be going.  I have started a great book now that the holiday season is here.  I like to read holiday books only during the holiday season and once Christmas day passes, I don’t like to read “holiday books” any more. Something about reading a holiday book during the year when it isn’t the “holidays,” it doesn’t seem right.  So I am reading this new James Patterson book called MERRY CHRISTMAS ALEX CROSS.  It is extremely good and I strongly recommend it.

With the holidays around the corner, one thing that I was wanting was this big teddy bear from the VERMONT TEDDYBEAR company.  It was like 3 feet big and was wearing a nice comfortable footie!  It was so cuddly!  I thought I would put it in bed with me since I am always in bed as it is and it would be nice to “lay” against. It would be like a “body” pillow.  I thought perhaps it would not only be nice to have, but it would be nice to cuddle and would also make me more comfortable in bed.  I am such a stuffed animal freak even though I am 30 years old.  However, it is expensive, and I don’t have money like that to waste.  So… I guess that big teddy bear is just going to have to wait!!

As a result, my mom did buy me bear to bring with me to Nebraska. It wasn’t that 3 foot bear, but it was a smaller one.  It was a BIG surprise to me because I wasn’t expecting it whatsoever.  It is s VERMONT TEDDYBEAR and I will treasure it forever and ever.  It is so special to me and I will always have it because supposedly if anything ever happens to it, it can go back to the “teddy bear hospital” and they will fix it.  The teddy bear is simply adorable.  Even though I won’t have her physically with me in Nebraska, at least I will have the bear.  I am including a picture of the bear in this blog.  It is wearing a “footie” and it is so adorable.  My mom named the bear and even put the name on its “footie.” She named it “Falbear!”  It is also wearing a hospital bracelet.  Finally, it has a special note on the pad of one of the hands.  She had embroidered into the pad of the hand the message “I love you!” So… it will be extra special. I can’t wait to receive it.  It is supposed to be delivered on November 30th.  I am counting down the days til I receive it.

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As for me…. I continue to deteriorate.  My bloods are continuing to drop and my organs are continuing to fail.  I also think that I might have a rupture in my intestines or at least a tear because the mucous that I was expelling has “changed” a bit.  Things just continue to worsen.  But, I am hoping that things will get better, especially with Nebraska around the corner.  I just have to make it there.  I am also hoping that better things will be happening, especially since the holidays are here.  I am hoping that I will get the best holiday gift, whether it is a Chanukah gift or from Santa, but I am hoping that I will at least get the gift of a chance of “life.”  But… I know that won’t be possible without the help of others.  If you can please help out in anyway possible… whether it is by donating, spreading the word of my website and that I need help, saying a prayer, etc.  I would appreciate it beyond words.  I can’t tell you how any little thing that you can do is so much appreciated.  I really have a long road ahead of me and it won’t be possible to conquer without the help of you and the help of others. 

Again, Happy TURKEY day and I will write again soon!

– Fallon

Here’s a comic I thought you might enjoy:

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November 14, 2012

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Hi-

Just wanted to write a little update because more news has just been known and I want to update you on all that has happened in the past few days, as a lot has been unraveling.  Also, I have to make a MAJOR decision by morning, so I am hoping that perhaps writing this update might clarify what exactly is happening and help me in making my decision because I am so confused as to what I should be doing.  I think I know what to do deep down, but I am just so indecisive.  I am sooo afraid that I am making the wrong decision.

As you already know, I was supposed to be leaving this upcoming weekend for Nebraska.  I was headed to Omaha, Nebraska because I had to go to the hospital since I am suffering from a life threatening disease that desperately needed help.  I need a life saving and rare and life-threatening multi-organ visceral transplant, which would entail receiving a small intestine, large intestine, stomach, and pancreas.  However, this transplant is extremely is rare and can only be found in 8 hospitals throughout the country.  This transplant is extremely dangerous, as it runs the highest rejection rate of all transplants.  I was originally going to California for my illness, as I suffer from severe gastroparesis, autonomic dysfunction, and other matters, but the insurance company refuses to pay for this transplant there.  Since we are talking about an operation that will easily cost me easily over a million dollars, there is no way I can afford to pay for this operation out-of-pocket. Even with the insurance paying for it, I will still have to find ways of coming up with money for the operation that I don’t know how it will be possible because I still have to worry about living expenses (I will have to live there for awhile afterwards), traveling expenses, deductibles, copayments, medication coverage (especially for the anti-rejection meds that I will have to receive afterwards for the rest of my life because without them I will reject the transplant and the insurance will not cover.  They will easily cost me alone $1000 per month… not including the other expenses that I pay on other medications), etc.  So as I will have difficulty paying for this operation as it is with the insurance paying for the operation, there is no way I can even think about going to a hospital that the insurance won’t pay for at least the operation.

I hate health insurances because they also have these weird rules.  Even though certain hospitals are BETTER hospitals to go to, they will only cover you at certain hospitals.  Therefore, even though I really need to go to California to have the transplant because my entire team is there and I am best to go there because they are able to handle me since I am so complicated and such, they will not pay for me to go there.  I really need to go to California because they are able to handle all my underlying conditions and not many other places are situated to do so.  Therefore, the only places that the insurance company will pay for me to have the transplant is in Nebraska.  So,  I had no other choice but to go to Nebraska.

I was supposed to leave this coming Sunday for the big trip to Nebraska, as I am rapidly deteriorating.  I was also scheduled for surgery on Tuesday because they wanted to do an “exploratory” surgery to see exactly what was going on. Besides wanting to see what was happening with me, they also wanted to figure out where I was bleeding from, as I have blood in my stool.  I have been having it for a while, but the doctors are unable to tell where it is coming from.  Despite having a great amount of tests, they cannot find out what exactly is taking place because due to my complex medical history.

The doctors haven’t been able to tell exactly what has been going on with me with the bleeding because every time they try to find out where the bleeding is coming from, they hit a brick wall.  They really wanted to do a colonoscopy on me, but they can’t “empty” me because of my gastroparesis.  My GI tract is too paralyzed and too dead and therefore, no matter what prep that they have given me, it never has worked.  I have been given everything from the traditional prep that is given to everyone (drinking the nasty mixture), to taking those pills to make you go to the bathroom, to having enemas, to drinking whole bunch of laxatives (including MIralax), to even having a Nasogastric tube placed in me to pour the laxatives in me so that I don’t have to bother swallowing the laxatives and they go directly into my stomach and intestines.  However, nothing has worked… not even the NG or NJ tube.  In fact, when I did have the tubes, they were only able to pour in less that a quarter of a liter because the tube was backing up and the mixture was coming back out of the tube.  My GI tract is so “gone” that it just couldn’t hold it and therefore, they had to call a “quits” and remove the tube.  So… they haven’t been able to really determine where the bleeding has come from. Even swallowing a camera isn’t a possibility because it won’t pass through due to my paralyzed stomach.

Nothing passes through at all even though it has been determined that the sphincter is completely wide open.  I just don’t have the nerve conductions to push things along.  Essentially… my whole entire GI system is “dead” and nothing passes through.

Now that it is getting closer to meeting with the team and such, the entire team has been reviewing my records and having meetings about me. Things have been progressively getting worse with me and they have determined that our original plans of what was going to take place are not going to be possible.  They insist that I am so “sick” and “fragile” that the amount of time that I was originally going to be down there is not going to be enough.  Originally, I was supposed to be leaving Sunday for Nebraska and coming back Thanksgiving morning. Not only did I really want to spend Thanksgiving with my family because Thanksgiving is meant to be spent with the “family,” but it is also a day that is a “dead” day at the hospital.  Nothing is really going to take place in the hospital that day because no one is really going to be working.  Since we can barely afford to go to Nebraska as it is, we can’t afford to spend days in Nebraska that we are just “sitting” around and doing nothing.  As it is, we can only spend about a week or so right now down there because of how much money everything costs.  Unfortunately money is extremely tight and despite all the fundraising and pleading for donations and support, I haven’t been able to really raise that much.  This disease is such a financial burden that it is unbelievable.  Despite all the “cuts” that my family has made, we are really having trouble paying for treatment and unless we receive aid, I fear that I won’t be able to receive the treatment that I need.  As it is, I can’t really stay longer in Nebraska because of the trouble of affording it.  I had this problem in California when I was there last time and that is why I had to come home.

Through my records, the doctors have seen how sick and “fragile” I really am.  They are really scared for my life.  They said that they never have seen someone as sick as me.  They are afraid to do anything because they fear that they are going to make me worse.  Therefore, they really want to know me from head to toe and do all this thorough testing on me before they do anything so that they can get a clear picture of me and not further jeopardize me.  After all, my weight and levels are so very low that the slightest wrong move can really kill me.

I am so sick that the doctors really want to do all this thorough testing on me and really get to know me before they do anything… even that exploratory surgery.  Therefore, whereas before everything was going to be outpatient, they wanna even put me inpatient during this period and do much more testing than was originally planned.  They now expect me to be down there for at least 10 days so that they can do all this testing so that they can get a full picture of me.  So, now that things have changed and they want me to spend all that time there, I have to make some big decisions.

Everything is now changing since the doctors have decided that I have to stay such a longer time than originally planned.  I can either go down next week for the very few days that I was originally planning to go there for, but I would only have to return again afterwards in the next week or so to undergo the testing.  I would only be going there for 2-3 days, which would just be enough to see the team and for them to actually get to “visually see” me and to enact a plan of what testing needs to be done.  They wouldn’t really be able to do any of the testing or get a complete picture of me, as it would take a whole array of testing, which would take about 10 days or so.  They would want to do many things to see exactly what is going on.  However, at least if I do go down next week for the few days, at least when I return again, they will know exactly what testing and such needs to be done.  They will have a complete idea and know exactly what needs to be done.  At least the show would be starting to get on the road.

I know that I am rapidly deteriorating and I desperately need to get help immediately.  I know that time is of the essence and I can literally die any day. That is why I wanna get this show “on the road” and that is why I really was thinking about going next week for the 3 days or so.  This way they would know exactly what they will be doing when I return instead of first seeing them then too; we can just jump right in instead of waiting and wasting another day.  In addition, the doctors will only meet me on a Tuesday and since I can only really spend a week there because of the financial issue, it makes it hard if I first meet with them then and then start having the testing because it doesn’t give us much time since on the weekend they really don’t do much. It is one thing if they meet me first thing on a Monday morning because this way it would give them the entire week, but unfortunately, they won’t see me til Tuesday.  The doctors won’t start any testing whatsoever until they see and meet with me.  That is another reason why I was thinking about going this upcoming week so that I can return again and have a full week of testing and such from Monday to the end… this way maximizing the amount of days instead of losing days because of the weekend and such.

However, the doctors are also scared about me traveling back and forth.  Due to my failing health, they don’t think that I would be able to tolerate the traveling back and forth.  Therefore, they would rather prefer me to do everything all at the same time when I am down there instead of going back and forth to New York.  I agree that it would be much easier because the traveling does take a lot out of me and really further deteriorates me, but I don’t know what to do because I don’t know if I can afford to wait til after Thanksgiving to see them and get all this done.

The doctors really did want me to come this upcoming week and stay for about 10 days or so.  They still wanted me to continue with my upcoming plans but instead of leaving like I originally had planned on Thursday morning, they would rather me stay.  This way I would see them next week because like I said before…. Time is extremely crucial…. But at least I also won’t have to travel back and forth because everything will be able to be done at that time.  But like I said before, due to financial reasons, we really can’t spend that much time down there because we can’t afford it.  We can only really stay a week, so we really have to maximize our time.

So… it really isn’t a good idea to go next week because despite losing the days because of the weekend if we decide to go this upcoming week, we will also lose another additional day because of the Thanksgiving holiday.  As money is extremely difficult to come by, we can’t afford to spend on a day where we will just be “sitting” around.  Therefore, we really need to go when we are paying for days where there is something being done every single day because there is no holiday.  It is bad enough that the weekend will interfere with my week of staying there; I can’t afford to pay for another day of doing nothing such as on Thanksgiving.

But like I said before, I don’t know what to do because I can either go next week for the few days so that the docs can see me and get the whole “plan” into effect and such so that when I return again we know exactly what to do, or I can just wait and go after thanksgiving and get it all done at the same time.  I Just don’t know what to do because I know how crucial time is.  I ask my dad, but my dad won’t really give me an answer.  He is so afraid to give an answer because he is so afraid that answer is going to be the one that is the wrong one and that is going to kill me.  If it was up to my dad, I would be living in the hospital because in my dad’s eyes, nothing can happen to me in the hospital or under the eye of the doctor.  My dad doesn’t want anything happening to me.  All I hear from my dad all the time is “you know that you should be in the hospital.”

I just wish I knew what to do.  I know how important it is to go to Nebraska, but I know how much I need to maximize my days so that I get the most out of them because of the money issue.  It is a shame how much money dictates my life and future.  I have asked the doctors in Nebraska what I am better off doing, but of course they won’t tell me what to do because in their eyes, the best thing to do is to go next week like we have originally planned to do, but to extend our stay for at least 10 days, which is something that we cannot afford to do.

In addition, I don’t know what to do because I was really counting on going this upcoming week and knowing what their plan of action was.  I am scheduled to go back to California on December 9th and I can’t be in both places at the same time.  In addition, it is too expensive to really go to both places and I can’t afford it and therefore, I was planning on deciding which I would go to after hearing what Nebraska had planned for me next week because I knew that no matter what was discussed next week (even if I had the surgery then too), I would still have to go back to Nebraska.  But, if we don’t go to Nebraska until after Thanksgiving, there is no way that I am going to be able to attend California.  I will have to give up on going back there in order to go to Nebraska.  So, that is really a downfall of this.

I guess the best thing for me is to put the trip off to Nebraska.  I know how much I really need to go to Nebraska, but since I can’t stay so long because of the finances, I guess it is better off that I go when I can spend the week there and get the full benefits of the week instead of losing days because of the holiday.  You know?  This way the team will get a complete picture of me.  The team knows I am not a “typical” patient and therefore, they want everyone to know me… even the hospital staff so that when I have the surgery and the transplant and when I am hospitalized… they will all know how to care and handle me.  After all, the slightest wrong move can really complicate and worsen me drastically.

I know that putting off Nebraska til after Thanksgiving means waiting another 2 weeks or so, I guess it is better off because I can’t really travel back and forth because it does take a lot on my body.  It is also the “holiday” time and bad things shouldn’t happen during this time because it is a time for “happy” times.  So… since only good things should be happening during the holiday season with people getting presents and such, I should be ok and make it because they aren’t going to make the holiday season worse for me and my family because we have suffered enough.  Maybe by waiting it will also be a good idea too because since it is going to be holiday time, maybe that will be just the perfect gift that I will be able to be given.  You know?

In addition, I really want to be home next week for Thanksgiving too because I want to be able to celebrate the holiday with my mom and brother since chances are that I won’t be around next Thanksgiving. I was told that unless a MIRACLE takes place, I definitely won’t be around next thanksgiving and therefore I really want to spend my last thanksgiving with my mom and brother because thanksgiving is FAMILY time. When we go to Nebraska, they are unable to go with us and I don’t want to be split up especially during this special time. I just hope I am making the ‘right’ decision by not going to Nebraska next week, but some things are just more important and precious.  Some things are just not replaceable and therefore, I don’t want to go there and never have that opportunity to have the holiday with my family.  After all, Thanksgiving is a day for giving “thanks” and I want my family to know how thankful I am for them and for all that they have done for me throughout the years.  I definitely wouldn’t have made it this long if it wasn’t for them.  They really have been my backbone of support throughout this entire thing.  They really have given up so much of their lives and such… more than any person should ever have to. I hope I am not being “stupid” and just home I am making the ‘right’ decision by waiting to go to Nebraska til afterwards.  But like I said before… It’s holiday time… so only good things should happen, so I should be ok, right?

So, it looks like when I go to Nebraska I will be inpatient for the entire time and going through extremely thorough testing.  I never went to a hospital that was so thorough.  Gosh… I thought that New York had all the top hospitals.  I never thought that I would find better hospitals then the ones that we had here.  But, I guess I was wrong.  I can’t believe how this hospital is taking such good care of me and how they want to make sure every “I” is dotted and every “t” is crossed before anything is done.  There is no “oversight” like there is in New York. In addition, they take care of you so much better than the doctors in New York in that whenever you need something, they are always there.  You can always be assured a phone call back, which doesn’t happen here.  In fact, they are even reachable and they even contact you on Saturdays and even Sundays.  When has that happened here?

I was also surprised to hear from them that they told me that I “Shouldn’t give up” because I am going to see them shortly and they are going to help me.  They are the only doctors I have met who tried to restore my hope and confidence that perhaps they might be able to help me.  They said that I am 30 years old and I shouldn’t be like this.  They told me that they are going to do whatever they can to help me!

Knowing that I am going to be inpatient, we are going to be staying in suites at the hospital.  It will be easier on my dad to stay at the hospital too because this way he doesn’t have to worry about traveling back and forth to the hotel even though they do have transportation.  The hospital transplant program has a special service set up where they have a special section of the hospital set up like a “hotel” for families.  This way families of transplant patients can stay in a hotel that is right at the hotel and not have to worry about traveling back and forth.  The only bad part is that he will have to eat hospital food in the cafeteria.  But, I will also feel better too because at least I know that my dad isn’t too far away.  Even though he won’t per se be sleeping in my room or on my floor, at least I know he is really close in case something should happen or I need him.  Even though I know that even if he was in a hotel that he would be at the hotel in a matter of minutes of he was needed, I still feel better knowing that he is in the hospital staying.  U know?

I can’t believe how much the doctors are freaking out and so afraid of me.  I never met doctors who were so concerned.  So, it is kinda really a big relief knowing that I am going to a place that has such caring doctors.  Who would think that it would happen in Omaha, Nebraska?

So…. It looks like we are off to Nebraska in a week or so.  When I get the exact dates tomorrow, I will let you know.  But I do believe that we are going to be leaving December 2nd or December 9th.  Since we can only stay a week and we really want to maximize the amount of time spent there, the doctors are going to see what they can do about seeing us on a Monday instead of the usual Tuesday because this way it will give us an extra day to play around with because we don’t really want to lose a day because they won’t do anything until they see me and the “team” doesn’t really see patients except on Tuesdays.  We really want to have the most weekdays available because we know how much less is done on the weekends and like I said before, we really can’t stay more than a week because of the money issue.  So… we will see what happens.

Now that Nebraska is delayed, perhaps I will be able to raise some more donations and support.  Maybe I will also have better luck too because it is the holiday season and it should be a time of “giving”, right?  After all… isn’t it better to GIVE than to RECEIVE?  I find it such a shame that my life depends so much on money and it is basically beyond my control.  My life basically rests in the hands of the world because unless we get “help,” we can no longer afford treatment for me.  Not only can we not afford to go to Nebraska, but even the current treatment that I am receiving in New York is very hard to come by and we are having to make major cuts.  I don’t know what we are going to do.  My parents feel extremely bad about not getting me the treatment that I desperately need, but I know that they have done all that they possibly could.  Money only goes so far and their hands are tied.

I know that money is extremely tight, but I can’t help but think that if everyone would just donate $1… how much that would quickly add up and how helpful that would be.  But… unfortunately I know that will never happen.  I only wish that I could get on TV or something so that I can ask for support because all the stuff I have done in the past such as writing to people for help, posting flyers, pleading for help on Facebook, websites, etc. have no really helped that much.  If anything, it worked initially… but it quickly died out.  I don’t know how other people do it, but I constantly see and hear about others on TV.  Yet, whenever I try to get my story across on the news or on other shows like talks shows and such, I just don’t get anywhere.  If nothing else… even if I can’t receive the necessary funds to get well… at least I want my story heard and brought attention to because I want people to realize what they have.  People shouldn’t take what they have for granted because in a heartbeat it can be taken away.  Who would think that I would have ended up like this?  I had everything going for me.  I was a competitive figure skater, an “A” student, etc.  I thought I was going to go on to college, have a career in medicine, have a family, etc.  I never thought I was going to be 30 years old, living with my family, and praying each day that I live to see another day.  I never thought that I would never be able to walk or eat… the simplest things we take for granted. But if nothing else, I want to show people that no matter what they are dealt with that they can’t never give up. I have been striving to survive for the longest time even though I have been suffering so much.  I haven’t thrown in the towel as of yet even though it has been so very hard.  But… I must say… I am getting really bad and I honestly don’t know how much I can take.  I don’t know how much more suffering I can take because I never get a break.

I did ask my mom what we would do about Thanksgiving because originally we were going to have someone prepare Thanksgiving for us and deliver it to us Wednesday.  They would prepare everything so that all we would have to do is heat it up on Thursday because I wasn’t going to be home to cook the meal.  Each year, I used to cook Thanksgiving dinner, but since we were first coming home from Nebraska, I wasn’t going to have time to cook. So, we were going to have the meal brought in so at least we would still be able to have thanksgiving dinner.  We decided to still probably do this because I have gotten to the point where I am too weak to really make such a massive meal anymore.  Even though we really don’t have “company” come over as it is only my mom, my dad, my brother, and my uncle… it still takes a lot to cook Thanksgiving dinner and this way we don’t have to bother with the cleaning up either. It will make it so much easier on us.  Even though I would have loved to make the meal, I do think it probably is a better idea to bring it in because I have been really weak lately and it would save the trouble of all the preparing, cooking, and cleaning.  Plus… I am sure that the place that is making the turkey and all the trimmings would make it so much better than me.  Although my family insists that I am a “great” cook, I am sure that there is no match to the place we are getting this dinner from.

Speaking of Thanksgiving, I was also thinking that in a way it was kinda a good thing that we are planning on postponing Nebraska.  First of all, we were going during that Thanksgiving week, which is the busiest time of the year.  It is really hard for me to travel as it is and with the airport being as busy as it is… I am sure security is going to be really high.  I am sure that it really would have exhausted me more than usual if we would have gone this upcoming wee.  We would have also had to deal with all the crowds of people because lots of people more than usual would be traveling.  Since I have an autoimmune disease and no ability to fight illnesses whatsoever, I can’t really chance getting sick because if I get sick, everything is magnified to me.  A simple cold is like the “flu” to me and therefore, getting sick can really kill me or at least easily land me in the hospital.  With there being so many people, I was really asking for getting sick.  Plus, with all the crowds, I really risk the chance of being knocked into.  I am sure it wouldn’t’ be intentional, but accidents do happen and when there are lots of people, people always end up bumping into each other.  I can’t afford for that to happen because first of all, it would cause enormous pain for me.  I am extremely hypersensitive and the slightest touch causes intense pain.  Plus, my disease also spreads through “trauma” and even the most innocuous trauma not only causes the most extreme pain you can imagine (I can feel things that the typical person can’t), but it can cause my disease to really spread… especially since it is already spreading like a wildflower.

In addition, I also heard that we are in for another storm.  I know it isn’t definite, but knowing our luck that we have been having… you never know.  Therefore, even though we were originally planning on coming back on Thanksgiving, who knows what would have happened if we had that upcoming storm that possibly might hit us?  If nothing else, I am sure that there probably would be delays, which is something I can definitely do without.

One good part about putting off Nebraska is that at least I will have some good movies to watch for the plane and while I am there.  It just so happened that all the good movies were coming out right after we left.  I can’t wait to see MEN IN BLACK III and THE DARK KNIGHT RISES.  I love the BATMAN movies and have been waiting so long to see THE DARK KNIGHT RISES since I couldn’t see it when it was in the theater.

Now that the holidays are here, it is the best time to read “holiday” books.  I can’t read books that deal with the Christmas or the holiday season during any other time than this time of year. It just loses something when you read it at different time of year.  I even refuse to read a book that deals with the holiday season once Christmas passes.  So, I have this time up until Christmas to enjoy these books.  James Patterson just came out with a new book called MERRY CHRISTMAS ALEX CROSS, so I am just starting to read this book. I hope it is a good book because I used to love James Patterson, as he is one amazing author.  Yet, he is an author that I think wrote the most books of any author and therefore, some of his books lately have gotten really bad and it was getting to seem like he was all “written out.”  But perhaps this books is one of his good ones because all his ALEX CROSS books were amazing.

Well, I am going to get going.  When I have more info, I will let you know.  As the holiday season is approaching, I really hope I might get my wish of getting better, living to see the new year, and at least some funds so that I can receive that necessary treatment that can help me survive longer so that I can see another year.  If you can spread the word of my site and how much donations are needed for desperate life-saving treatment, I would really appreciate it.  I know that you have already done a lot, but anything that you can do is much appreciated. Please say a prayer that everything will be ok and I will make it to Nebraska!  Just like every $1 helps, so does every prayer!!

Happy Thanksgiving if I don’t write again before!

– Fallon

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November 11, 2012

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Hey-

What is going on?  I guess it is catch up time for a bit since I haven’t written all week and I am leaving a week from today.  Gosh… it is really getting close.  One week from today I am off to Nebraska.  Who would have thought that out of all the places that I would end up in Nebraska?  My life is like the song ON THE ROAD AGAIN!!  Never a dull moment.  I just wish I didn’t have to travel and if I did, it was for better things.

One more week and I am out of here.  I am hoping that I will make it there even though it is only 1 week away because I am not doing so well.  I am rapidly deteriorating and it seems the closer we are getting to going, the faster I am deteriorating and the worse I am getting.  I am trying to hold on as long as possible, but I must say… it is REALLY getting hard to do so.  I never had such a challenge to do so.  I have never suffered so much.  I never thought that it could get soooo bad.

Things are getting to be extremely bad with me.  They have gone from really bad to even worse than that.  I didn’t even think that was possible.  But… it is at the point where I am really wondering if just letting go isn’t the best thing for me.  Of course I don’t want to because I have so much to live for and give to the world, but I must say…. I am really suffering and don’t know how much more that I can take.  The pain is unbearable and I can’t take it emotionally or physically anymore.

I am literally climbing the walls. I have been maxing out on all my pain medications, but despite taking everything, the pain is just too intense to bear.  It hurts to even move just about any part of my body… even a finger.  I am so very weak as well.  Between being so weak and the pain, I can barely even get off the couch.  To get me up in the morning, it takes so much out of me.  I can barely get off the couch or bed and it has even gotten to the point that I even try to limit the amount of times I go to the bathroom because I just don’t have the energy to get up and down to go.  The pain and physical exertion is just too much to bear and it just takes too much out of me to go and therefore, the least that I have to move, the better that I am.

I have also been having so much mucous coming out of me. I don’t know what it is with me, but I can’t go to the bathroom without mucous coming out.  It is basically all black too, so I must be bleeding from somewhere.  In fact, the doctors have checked my stool in the past and they have confirmed that there is indeed blood in the stool.  However, they are unable to find out where the blood is actually coming from.  They are hoping that when I go to Nebraska that they will be able to find out where it is coming from because I am undergoing another surgery on Monday to “explore” what is going on.

Besides all the mucous coming out, I am suffering from the worst stomach pains and nausea.   I have never been so bad. I can’t even swallow anything anymore.  The minimal amount that I was able to swallow before, which was basically barely anything, has even been limited even more.  Whereas before I couldn’t tolerate any carbs and was basically living on ices, pedialyte ices, and egg whites, it is even getting worse.  Even tolerating ices is getting unbearable.  I can’t even drink anymore.  Whereas I was able to tolerate carbonated beverages to some point in order to get down my medications (the carbonation was the only thing that helped to get it down), I can’t tolerate anything anymore.  Swallowing meds is basically impossible and just drinking alone is getting to be impossible as well too.  My mom has been buying me all different flavored drinks, but nothing seems to be going down.  Not only does everything not taste “right” or like it should, but my throat  also just doesn’t want to swallow.  It really is strange and scary.

As I said before, I can’t tolerate ices either.  That part isn’t good at all because I was receiving some medication through the ices.  As my bloods were very low, they were giving me medicated ice pops in hope that my bloods would rise.  However, without me being able to tolerate the ice pops, my bloods will only fall further.  I have been trying though constantly to get them down though because I know how important they are to get down since they have the medication in them.

I can’t even chew gum.  You would never think that would be a problem, right?  But it is.  I can’t believe that something as simple as gum is giving me problems.  I can’t swallow when I chew gum and plus… it gives me the worst stomach pains too.  It used to be that gum was one of the few things that actually “helped.”  Now I can’t even say that.

To make matters worse, with all this occurring, I am losing weight.  I am barely weighing 70 pounds and therefore, I cannot afford to lose any weight whatsoever.  I am really scared because I am basically walking on a tight rope with death as it is.  My levels are so very low as they are, I can’t really afford to drop any lower.  The doctors have already told me that if I was a male, I would already be dead because males can’t survive at the levels that I am.  Fortunately, females can live at a lower level, and therefore, I am able to survive a bit longer.  However, even at that lower level, I am already borderline with it.  I really can’t afford to drop anymore.

I am so very weak with everything going on.  Between the mucous, vomiting, weight loss, cold, etc.… it is all taking a HUGE toll on me.  I really don’t know how much more I can handle.  My cat knows something is definitely up with me as well because she won’t leave my side at all.  She is such a smart cat in the sense that she knows when something is more wrong than usual.  My parents call her my “babysitter” because whenever I am doing worse, she won’t leave my side and will follow me around everywhere.  She will constantly lay with me and when I even have to just get up to go to the bathroom, she will follow me there to only return back to bed with me.  It is like I can’t be trusted to go to the bathroom myself.  She is such a wonderful cat. I don’t know what I would do without her.

Besides all these physical symptoms, my bloods aren’t doing too well either.  My bloods are dropping significantly and it isn’t just my heart bloods anymore either.  My kidneys and liver are starting to get into really big trouble as the levels in the blood are showing huge abnormalities with them.  My entire body is just shutting down.  I feel like I have blockages in my abdomen as well, but when I go to my internist, he only refers me to my top specialists because I am so complex and such.  I way beyond the scope of most doctors and therefore, he refers me to my specialists because of everything that is happening with me.  With everything that is happening with me, he wouldn’t even know basically where to start when dealing with those complicated problems.

So things aren’t doing so well.  The doctors don’t expect me to live much longer and I am rapidly deteriorating. But… that isn’t stopping me. I am still “trying” to push forward and haven’t given up hope as of yet. I am still trying my best to survive, but I do have to say that it is getting very hard to do so.  The doctors want me to get help ASAP.  The doctors in California want me to come back to them ASAP so that they can put me into a huge coma and again put more tubes in me to try to “feed” me and buy me time til I get the transplant.  However, I have to go to Nebraska and I can’t be in two places at the same time.  Plus… with money being so tight, it is too hard to be able to go to both places.  Something has to give.

Money is extremely tight and we have a hard enough time being able to afford to go to one of the places.  I know that I have to return to California because the only reason that they allowed me to go home the last time was on the contingency that I would return in a few weeks.  We had to leave because we ran out of money and plus I wanted to see my mom too since I was running out of time and such.  However, I also need this transplant that I have been talking about, which is a multi-organ visceral transplant that entails getting a new stomach, small and large intestines, pancreas, and possibility of a new esophagus.  Only 8 hospitals in the country do this transplant and it is extremely risky and dangerous.  Out of all the transplants being done, this is the most dangerous and runs the highest risk of rejection.  Although California does do this transplant, the insurance will not cover me to have it done there.  My insurance will only cover me to have the transplant performed in Nebraska or Indiana.  Supposedly, my insurance will only cover me in California if these places in Nebraska and Indiana “deny” me.  But, they have to “deny” me first.

Even with the insurance company covering me, the cost of this transplant is astronomical and I will need so much help in order to be able to achieve this.  I don’t know honestly how I am going to be able to afford it and it really scares me.  It is such a shame how my life is so dependent on money, which is so scarce at the moment.  Therefore, I am really hoping that other people will help me out in the world.  I figured that if everyone just donated $1, it would really add up and really help me.  I have tried so many ways to try to raise money, but nothing has really come out of it.  If anything, it might be good and seem like a good plan of action in the beginning, but it quickly comes to a halt.   I have tried writing to the media, hanging flyers, reaching out on Facebook, writing to famous people (even the president and queen Elizabeth because I am so desperate), but nothing has come about.  It really bothers me that people get on television and get coverage and yet when I try… nothing happens.  I guess it is as the saying goes “It isn’t what you know… it is who you know.”  But… I am still hoping that something might come about and change.

Even with the insurance covering the transplant, the cost of my treatment is astronomical and as a result, we can no longer really afford it anymore.  We have made so many drastic cuts, but it is at the point that we can’t even afford the transplant (even with the coverage).  We can’t even afford the current treatment that I am receiving now without the transplant.  It is just so expensive and this disease has become such a financial burden on us.  The copayments (just in copayments we spend at least $25,000 a year), deductibles, medications (I take over 50 pills daily and not all are covered by insurance), doctor bills (I see many specialists and not all are covered), traveling expenses (all my doctors are not local and the closest ones are Manhattan, which are still quite a distance and take parking fees that charge a lot and gas… not to mention the distant ones like the ones in California, Nebraska, and Florida, which require plane fare, hotel accommodations, etc.).  To make matters worse, all this time of seeing doctors requires my dad to miss working.  When he doesn’t work, no income is coming into the business and therefore, his business is suffering as well.  So, not only am I directly affecting the family because they are trying to pay my bills and can’t, but because my family is trying so hard to take care of me, the business is suffering because my dad can’t be there for it and as a result, it is affecting us too.  It is like a no win situation.

But… we are headed to Nebraska in one week. They are supposed to be the largest center for my disease.  They insist that they really understand my illness because they insist that they see more cases of me than any other doctors in the country.  Even though they claim that I am one of the “worse” cases that they have heard about and will probably see, they said that they are used to dealing with my disease and know how each case is so unique and how not one specific treatment works for everyone.  They said that whereas a doc or a hospital might see one of me in their lifetime, they see about 10 of me a year.  So, at least that is a little hopeful.

However, I do have to go back to California and I also will have to go back to Nebraska since they are allowing me to come home for Thanksgiving.  Nebraska is only allowing me to come home on Thanksgiving on the basis that I will return to have more procedures performed.  However, like I said before, I can’t be in two places at the same time and therefore, I really need to decide on which place I am going to be better off going to.  I am supposed to be going back to California December 9th for the coma treatment and to get the tubes, but if I end up going back to Nebraska, it will of course have to wait.  Either way… it will entail more money and more expenses.  Therefore, we really need to find a way of raising money because there is just so much money that is needed for this.  Plus, since we are just coming back from Nebraska two weeks earlier, it really doesn’t give my dad a lot of time to work and catch up on the work that he missed out on.  So, it really is going to be a hardship to go back to Nebraska or go to California two weeks later after Thanksgiving.  However, we really don’t have a choice because my life literally depends on  it.  I can’t afford to put it off any longer because I am rapidly deteriorating and can’t afford to wait.  I won’t make it.

The doctors will be picking us up at the airport and then bringing us back to the airport when we are ready to go home.  I really want to be home for Thanksgiving.  In fact, I was promised that I wouldn’t be “away” for thanksgiving.  It was really important to me to spend Thanksgiving home this year with my family because I have a feeling that this is going to be my last thanksgiving and therefore, I wanted to make it memorable and spend it with my family.  Both my parents did promise me that this would occur, but when I ended up getting sicker, they changed their minds.

As I got sicker and it became known that I had to go to Nebraska to see doctors during this time, their story changed about being able to remain at home for Thanksgiving.  Even though it was so important to me, my parents changed their mind and started to downplay thanksgiving by saying how it was “no big deal” or how we could “celebrate it another day.”  However, it was important to me and I didn’t want to miss it.  But as much as I pleaded that I wanted to remain home during this time, I knew it was a lost cause.

Fortunately, the doctors are being really nice to me because despite me being so sick, they are allowing me to come home for Thanksgiving.  They know how important it is for me to be home for this thanksgiving and therefore, they are allowing me to return home for the holiday.  As a result, we will be coming home on Thursday for the holiday on the basis that we will return shortly afterwards.  Even though I usually am the one who cooks thanksgiving dinner and would have liked to cook it again this year, at least I will get to still be home for turkey dinner providing that we aren’t delayed or something.  Coming home and not cooking is better than not coming home at all.

Since I will not be able to cook Thanksgiving dinner, we are going to end up bringing in Thanksgiving dinner.  We are having it delivered from a fish place/market that has amazing food.  The person that owns the place has been extremely nice and has been taking great care of me.  He has been simply amazing as being a great support and also in trying to help me out in any way possible.  You really don’t find a lot of people like that.

This fish market happens to have the best food out there.  The fish is out of this world and they have side dishes that are soooo yummy too.  The owners are amazing people too as they try to help their clients out in anyway possible and they really get to know each and every person.  In fact, they basically know what each person wants because they remember what they like.  I don’t know how they do it because they do have a lot of clients too.

Anyway, the owner really is nice to me because not only does he prepare delicious foods for my family and me, but he also has really been trying to help me in any way that he can.  He knows how difficult it is for me to eat and stuff and therefore, he has been trying his best to try to give me things that I can tolerate.  It is so nice to know that someone is taking so much time and care to help me out and try to make me better.  He will literally go out of his way to prepare something for me just to see if I can “tolerate” it.  He really knows how to “take care of me.”  In addition, he also constantly talks to me and treats me like a “person!”  He will always have a smile and be there to talk to.  Therefore, it is really nice to go in there because it is someone to actually talk to and feel like they understand and wanna listen. I can’t even begin to tell you how much they help me out.  In fact, he won’t even let me give up at all.  He is one of the few people that continue to “push” me and won’t let me feel sorry for myself.  There aren’t many people like him.

So we will be getting thanksgiving dinner through him even though they are a fish market. I can’t wait to have it.  I just hope that I can eat it.  You should see the dishes that they have… they are simply amazing.  You have choices of soups (matzoh ball soup is my favorite, to all different side dishes (baked apples, candied yams, candied carrots, chopped liver, egg barley, noodle pudding, stuffed cabbage, potato pudding, etc.), to brisket, to clams, to grilled mixed veggies, to different shrimps (oregenata, scampi, stuffed mushrooms with crab, stuffed artichokes, tomato & mozzarella, etc.) to sweet sides and desserts (rice pudding, tsimmis, braised potato, soufflés etc.), to baked salmon, belly lox, herring, sturgeon, sable, pickled lox, to all different salads (calamari, chicken, cole slaw, cucumber, egg/mushroom, halibut, macaroni, marinated asparagus, pickled beets, etc.).  I can’t wait to see what we are going to get.  He said to me that he will take “care of us” so I have no doubt that he will because he always does.  Since they won’t be open on Thursday, he is going to deliver all the food on Wednesday and therefore, all we will have to do is heat it up for dinner on Thursday.  He is already going to have the turkey all carved and ready to go so all the hard part is all done.  So, not only will our thanksgiving dinner be really “yummy” but it won’t be a messy one either.  After all, we all know how cooking a thanksgiving meal requires HUGE cleanup afterwards.  At least we won’t have to be bothered with that.

I really don’t know how to pack for Nebraska.  I really hope that it isn’t going to be cold in Nebraska.  I heard that the other day it was close to 80 degrees and then the very next day it was a high of 35 degrees.  I really hope that it isn’t that cold because I hate the cold.  But, we shall see.

Like I said before, we are leaving for Nebraska on Sunday.  We are leaving bright and early and we should be in Nebraska by 1 in the afternoon (Nebraska time).  It is going to be another long flight, as we have another stopover in Chicago.  I think total traveling time is 7 hours or so.  But at least it is a bit close (Not much but a bit) than California.

I have surgery scheduled for Monday.  I am supposed to have all this special preparation for it, but I really don’t know how it is going to happen if I am first arriving the day before.   But apparently the doctors said it was “ok.”  I know that part of the prep requires me to be “completely empty” and “cleaned out” so I honestly don’t know how they are going to do that if I am first arriving on Sunday.  But I guess I will know what to do when I when I speak to them this week.

Well… I guess that is it for now.  I really hope that I get better.  I can’t live like this anymore. It is not fair to me anymore.  Haven’t I suffered enough?  I am so tired of being in pain.  I am tired of suffering physically.  I am tired of suffering emotionally.  I see other people and they have lives… they have families (as they have husbands or wives and kids)… all something that I want and yearn for.  I really would do anything to get back my life and be able to have all that other people take for granted.  People don’t appreciate what they have until it is taken away from you, but I know far too well how fast all that can be taken away and how lucky you are to have that if you do have all that “great” and “wonderful” stuff in your life.  I never imagined my life like this.  I want to be able to have that career I desired all my life, family, etc.  It is so unfair that I am suffering like this and no matter what I do, I can’t come up for air.  It is like every time I try to get better and no matter what I try… it is never good enough.  I just want to be “normal”… if that is ever possible again!  I miss my life and it hurts… hurts more than you know!!  I try not to let it bother me, but it really is hard.  It is hard to keep a smile when beyond this external façade, I am really suffering… both physically and emotionally… not just from this disease directly, but what it has left me with.

As I am leaving on Sunday, I will try to write at least one more time to update you on all the final plans and such of what is going on.  Things are still chaotic here from the storm.  So many things are still underwater and such.  We had a nor’easter here the other day and there were more power outages again.  Luckily we only lost power for 2 minutes.

Wanna hear something that I think is ironic?  I love the show REVOLUTION. However, I think that it is awfully funny how this show came out this year and now we are basically living it.  When the show first premiered, it asked the question, “What would you do without it all?”  Who would think that we would be able to answer it because we are actually living it!!  We are living the actual television show.  Who would think?

Even though things have gotten so bad, I have been trying to keep myself busy as much as I can.  I have become addicted to the iPad game BINGO.  I don’t know why but I just happen to love that game.  My mom said that I am just like my grandma because she used to love to play BINGO as well.  Whenever we went away when I was younger, I always had to play BINGO when they would have it as a “social activity.”  I have also been busy reading a book my J.K. Rowling called “CASUAL VACANCY.”  I just started it, but it appears to be good.  She is such an amazing author and since I loved HARRY POTTER so much, I figured that I would try this book as well.

There are so many movies that I am wanting to see too.  However, with Nebraska being so close, I don’t know if I want to see it now or wait because my dad and I always watch them on the plane.  I definitely want to see the new SPIDERMAN movie and BRAVE.  Of course I want to see MEN IN BLACK III and THE DARK NIGHT RISES, but they aren’t coming out til after we come back from Nebraska.

I did realize though that I am going to have problems watching the MACYS DAY THANKSGIVING PARADE.  In my house, it is like a tradition to watch the parade.  We watch the parade every single year as a family and it isn’t over until we see Santa coming at the very end.  However, since we will be coming home that day, we won’t be able to watch it.  However, I was thinking that perhaps we might still be able to watch it because if our plane has Wi-Fi, we might be able to get it on the iPad through the Internet.  Not all the planes have Wi-Fi, but most do.  So… hopefully we will be on one of them.

It is going to be a long and hectic week.  I have so many doctor appointments this week in preparation of going to Nebraska.  I also have to pack and get everything situated.  So… I guess I will be going because not really feeling too well either.  Talk to you again! As for now… I will just have to keep my batteries charged because I am the ENERGIZER BUNNY and I keep going and going.

– Fallon

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November 4, 2012

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Hey-

Just figured that I would take the opportunity to update on what has been going on since there has been lots going on and haven’t done so in awhile.  Plus… I gain an extra hour of torture tonight, so I thought it would help pass the time a little faster.  I hate the nights because even though I suffer all the time with pain and such, the nights are always the worst.  The pain always seems to escalate at night and there is nothing that I can really do.  I max out on all my meds and even max out on the amount of Tylenol that I can take, but nothing seems to give me any bit of relief.  I can’t sleep at all, as I can’t even get comfortable. It is so very cold too, and due to how hypersensitive I am, I can’t even tolerate a blanket on me.  I am just suffering so very much and it isn’t just a regular “pain” that I have.  This is like the worst imaginable pain that you can possibly imagine. The pain is so bad that it goes right down to the bone.  My body hurts so bad that not only does my entire body and all my limbs hurt, but it hurts from the surface (that even a light touch will send me screaming) to deep bone pain.  I just don’t know how much more I can take.

I also figured that I would write because I wanted to let you know all that has happened with the storm and how I am making out with it, despite all that is going to be happening in the near future.  The storm has really made it even worse for me multiple ways, which I will soon tell  you.  To begin with though, the stupid storm that wreaked havoc in my life continues to plaque me as it left me with a very bad infection/virus/cold.  I have absolutely no immune system and I cannot bear to get sick because a  simple cold to a normal person is like getting the “flu” to me.  Plus… whenever I get sick, I can’t take regular or typical medications or antibiotics because of all the medications that I am already on. I am on so many medications that everything seems to interact with everything else.  I take over 50 pills a day, so there is no wonder that it will interact with everything else.  So, when I get sick, the doctors literally have to pick their brain to find something that I can take because not only do they have to worry about it interacting with my other meds, but they have to worry about me tolerating it as well.  I can’t tolerate many medications too because I can’t swallow pills, I have malabsorption, and I am also highly allergic to many meds including penicillin, sulfur, etc.  So, my options are really limited.

A simple cold can literally kill me and therefore, I really have to be careful not to get sick.  Due to my illness, everything is “magnified” for me.  Like I said before… a simple cold is like the flu to me.  So I am really suffering because not only am I suffering now from my life-threatening illnesses that could really kill me, but I am also suffering from what Sandy left me… a cold/virus on top of it all.  Even though I really only lost power for one day, being in the cold and not being able to fight anything because I have no immune system really wreaked havoc on me because I caught a severe cold that has made it even more difficult to breathe, function, etc.

 I am really suffering because besides suffering from my illnesses with the severe paralysis of my gastroparesis, the severe autonomic dysfunction, the severe pain of the RSD, the brain tumor, the heart problems and breathing problems… I am now suffering even more than ever with further breathing problems, chills, etc.  I think I have a sinus infection on top of everything else as I keep having discharge in my nose and when I breathe, the doctor can hear mucous in my lungs. This is obviously not a good thing because not only does it make it even more difficult to breathe, which I am having enough trouble doing so already, but it can easily develop into life-threatening pneumonia and such.  My lungs are literally filling up with fluid on top of everything else. So, besides my bloods drastically falling and suffering from my usual problems,  I now have to deal with all of this.

I was supposed to be leaving for Nebraska this upcoming week, but due to Hurricane Sandy and such, we had to postpone the trip.  We are now planning on leaving November 18th.  I just hope that I can hang in there til then (even though it is only 2 weeks away) because every day seems like a “touch and go.”  Like the doctors have told us, “we can’t count on that I will be here from day to day and we have to take each day as it comes.”  I am constantly being reminded by them how very sick that I am and how I can easily “die” any day. But, I am trying to hold on as long as possible.  Knowing that the trip is delayed 2 weeks, I am hoping to be able to raise some more money for the trip because we desperately are in need of it.  My diseases have really been a real financial burden for my family and from being sick all these years, the bills have become too great that we can no longer really afford treatment for me.  We have made drastic cuts, but they are not nearly enough to afford the treatment that I need.  Therefore, I really need other people to help me, as my life depends on it.  I am really hoping to receive donations and support from other people, but no matter how much I try to raise money (whether it is through this website, writing to the media, posting flyers, etc.), it is not being effective.  I don’t know what I am going to do because it is getting literally impossible to receive treatment. 

Even the little money that we can scrape together so that we can go to Nebraska and to California is getting harder and harder.  It is getting to the point where even those trips are going to have to stop because the “well has officially run dry.”  I am only hoping that something might turn around and someone out there might be able to help me… whether it is through a large donation or a fundraiser, or something else.  I am extremely appreciative of all the donations that I have received already and to all the people who have helped, but it is not nearly enough.  I desperately need help, as my life depends on it.  If I don’t receive anymore help, I only fear that I won’t be able to receive the treatment that is necessary to try to save my life.  I need treatments, have to see doctors, medications, have to go to Nebraska and California for treatments and to see doctors, deductibles, copayments, money for transplants, money for comas, etc. But… without money… those are going to be impossible.

So… I am crossing my fingers that something might turnaround.  In the meantime, I just gotta hang in there until November 18th.  My life is starting to sound like the song “On The Road Again” because it seems like we are always traveling.  It seems like every time we get home from a place, it is only time to go back or somewhere else.  It is not only very difficult in the financial way, but it is difficult on me because it takes  a lot on my body to travel.  It is also difficult on my dad because he owns a business and with me having to travel to these places to receive treatment, he cannot work and therefore, no money is made.  I am really afraid that the business is going to suffer and go “under” because of all this.  If my dad should lose the business because he is always with me, and it can’t really “function” without him being there, I would never forgive myself. 

I never thought that I would be going to Nebraska.  Out of all the places in the United States, I never thought I would be headed to Nebraska.  But, I desperately need that GI transplant, and only 8 hospitals in the United States perform it.  Nebraska is supposed to be the largest center for my GI disease and have state-of-the-art doctors.  They claim that whereas other doctors might only see like one case of me a year at the most, they see like 10 of me.  They claim that they understand where I am coming from and understand that not one treatment works for everyone.  So, we will see how “understanding” they are and if they can help me. 

I really need a multi-organ visceral transplant, which includes a transplant of the stomach, small intestine, large intestine, and pancreas. Even though I really would like to have the transplant done in California, I need to se these specialists in Nebraska.  I am really quite surprised though of all that they are doing for me though.  I can’t believe that they are having the doctors pick us up from the hospital and taking us back.  Who ever thought they would do something like that?  I guess that is what happens when you are that sick.

I really want to be home for Thanksgiving and thankfully the doctors are allowing me to be.  It is really important to me to be home because it is probably my last thanksgiving and I really want to spend it with my parents and family.  My parents have said it is “no big deal” because they would do anything for me to get well, but it is important to me.  So, the doctors are allowing me to go home thanksgiving day and return soon after back to perform whatever treatment/surgery is needed.  I am so relieved because I really wanted to have thanksgiving at home.

I am the one who usually cooks the Thanksgiving meal.  However, since I will first be coming home that day, I won’t of course be able to make it.  Cooking a turkey will of course be out of the question because it would take too many hours.  I volunteered to make a brisket for thanksgiving, but my mom said that “having brisket for thanksgiving doesn’t really do anything for her.”  I can’t blame her because you really need to have “turkey” on thanksgiving.  So… we are doing the next best thing.  We are ordering a pre-cooked turkey with all the trimmings and this way it will come all cooked and prepared, and at least we will still be able to have our traditional and real Thanksgiving meal.  It also will save all the cleaning up afterwards.  It really isn’t that expensive either when you think about it because by the time you factor in the cost of the turkey, the ingredients to make the turkey, all the trimmings, etc. it comes out to the same price.  Plus, it makes it easier on you because you don’t have to worry about cooking and cleaning.  But still… I enjoyed making Thanksgiving meals and cooking the turkey and side dishes, so it still won’t be 100% the same.  I like seeing how good all my stuff tasted and seeing if everyone says if I “outdid” myself.  But… at least I will be home, so I gotta just deal.

So I gotta really gain my strength up because I got a big trip ahead of me.  But of course it is going to be harder than ever because I have so many obstacles ahead of me.  It is a lot harder now too because we still are trying to recover from the storm.  What a disaster that storm was!  It really wreaked havoc on us.  It looks like Armageddon here now.  But, I must say that personally… we really lucked out.  It could have been a lot worse.

I really must say that my family really did luck out with the storm because compared to other people, we really did do “good.”  We only lost power for one day, but that one-day was enough to really impact me and make a huge difference.  I have been really getting sick lately.  I can’t eat anything that has carbohydrates or swallow anything.  I am basically living on egg whites and pedialyte ices.  So… for us not to have power, it really would be a hardship because it would really “kill” me because I would have nothing to eat.  We don’t have a generator even though it would be one of the “smartest” things to have because we can’t afford one and the stuff that I could eat, which is only egg whites and pedialyte ices, all require electricity.  You need electricity to cook the egg whites and electricity to keep the ices frozen.  I am really sick as it is and for me not to eat, it could really easily “kill” me.

When you are as sick as I am, you can’t afford not to have power.  No power means so much to me.  Having no power means no electricity to have heat, which means that I will easily freeze.  I can’t tolerate temperatures other than between 70-74 because of my extreme hypersensitivity.  I have severe autonomic dysfunction and therefore, I can’t regulate my temperature in my body.  I can’t make body heat and I can’t even “sweat” when I am too hot.  So… it is so important to have electricity so that the heat and a/c can regulate the temperature for me.  Any temperature deviating from the 70-74 degrees really impacts me because it causes me even more pain.  I also don’t really have meat on my bones since I barely weigh 70 pounds and therefore, I don’t even have insulation to protect me. 

It is important to have the heat on especially at this time of year because it is so cold outside.   I am extremely hypersensitive and like I said before, I can’t tolerate temperatures lower than 70 degrees.  When it is 68 degrees… that is my ultimate limit.  It isn’t even where I can try to keep warm by bundling up in clothes or using blankets because I can’t tolerate the touch.  I am in extreme pain and anything that touches my skin literally sends me through the roof.  So, putting layers of clothes on or using blankets to warm myself up was basically out of the question.  I really needed the heat desperately because not only was I freezing, but like I said before… I also have no immune system and I can’t afford to get sick.  We all know that when it is cold, people get sick!!

It is also imperative for me to have electricity because that is the only way I can eat.  I can’t afford not to eat because I barely weigh 70 pounds.  At this weight, even losing one pound is extremely crucial.  Once I lose a pound, it is basically a lost cause in trying to regain it.  It is basically impossible to do so.  So… not only will I lose weight by not having the power on because I can’t eat anything since I can’t make my egg whites or have my ices, but I also will deteriorate from being so “weak” since I have no intake.  I also would have the problem of not being able to drink because due to my extreme gastroparesis and such, I can only drink things if they are “slushies.”  If there is no power, how am I supposed to make them?

In addition, my bloods are really bad and I am having the worst mucous coming out of me.  I was so scared that I was going to go into cardiac arrest or have an arrhythmia because my bloods would continue to fall especially with no intake of food.  I have medicated ice pops to take that are supposed to try to bring up my bloods and with no electricity…  there was no way I could have them.  I really thought that this storm would be a “death sentence”  if we lost power.

So, I was really scared that we were going to lose power because of the storm.  I really felt that would be the biggest problem.  The news people had just said that the worst of the storm would basically be over about 8 PM, but at about 5ish, I was starting to feel nervous and couldn’t’ sit still. I figured that I would make dinner earlier just incase the power went out.  Do you know that I just finished cooking the family dinner and was just about opening the oven when the power happened to go out?  What timing was that?  Who said I didn’t have perfect timing?  Unfortunately though, I didn’t have dinner though because I usually make my egg whites after I take their food out of the oven since it literally only takes 2 minutes to make mine.  I literally had just put my egg whites into the microwave when the power went out.  So, while the rest of my family ate by candlelight, I had nothing to eat and watched them.  I had no other choice.

I was really hungry because I had nothing to eat.  I was very cold too and wanted at least a cup of hot chocolate or something.  We did have some battery packs that you could plug some stuff into and you could also use them as lights as well.  So, my father did try to help me out because he felt bad that I had nothing to eat or drink.  So my dad tried to plug the hot water dispenser into the battery pack, but it took too many volts.  Since it didn’t work, my dad then tried my brother’s keurig machine, but that also took too many volts.  I was surely out of luck.  I was going to bed hungry and thirsty that night. 

It was a long night because I was scared.  Even though I was told by LIPA that due to my condition that I would have “priority” in being put back into service, I was still freaking out because sometimes when I called to find out the status, they would tell me to prepare for 7-10 days without power.  I would never survive those amount of days without power.  To think… not eating for those amount of days or no heat?  I would surely die.  I kept thinking about all the down trees and power lines that were occurring.  I was clearly freaking out. I was also freaking out because all the transformers were sparking and I was afraid that it was going to cause a fire.  All my brother kept saying was that he kept seeing sparks from all the different transformers located throughout my block. 

 I had nothing to do the entire night because I usually watch television and go on the computer at night since I don’t sleep because it’s too painful.  However, since there was no electricity, that was obviously not going to happen.  I ended up playing on my phone the entire night and trying to keep myself calm and occupied by talking to people.  I went from having full access on my phone such as by using it to make voice calls, texting, and Internet service to only having the ability to text and have Internet service to finally just having texting service.  I was clearly out of luck by morning, as the only thing I could do was text. 

Wanna hear something?  To prepare for the storm I did charge up all my stuff in the like my laptop, phone, iPad, etc. so I was all prepared in case the power did go out. I even charged up my extended battery that I bought for the plane when we go to California, so that it can recharge everything to a point when they go dead. Who would think that the battery I got for California would have been such a good idea? It really came in so much handy. I can’t believe I was procrastinating over it because I didn’t want to spend so much money.  Yet, it has saved my butt so many times especially when I have been delayed when traveling and I need to use my phone or iPad or something and they are all through with their charge. 

By morning the storm was over and we still didn’t have electricity of course.  However, my dad’s office did have electricity, which was not so far away.  He had to go there to recharge all the batteries and equipment so that we had them for that night because we clearly drained them that night from using them.  Even though LIPA had said that we would have “priority” in being put back up, we couldn’t be certain when that would be.  So, we had to take precaution and charge everything just in case we had no power for the following night.  I was so afraid of not getting power back because even though we have priority status to resume power because of my health issues, they can only move so fast. When lots of people are suffering with no power and the weather was the way it is… who knew what would happen? Nothing goes fast enough when u really need it.

My dad wanted to take me with him because there was no power at home and at least there was power in the office.  However, I was really not feeling well and not eating or drinking the night before was definitely not helping the situation.  I was feeling extremely weak and the temperature in the house was already dropping.  I was afraid that if I left the house and got even “warmer,” it would be certainly worse for me when I returned because I would be even “colder.”  But, my parents wouldn’t stand for it and therefore, they scooped me up and brought me to the office.  We spent the entire day there.

During that afternoon, my brother had gone home for a bit. When he returned back to the office, he told us how cold it had gotten already in the house, as it was already down to 60 degrees.  There was no way possible that I would be able to tolerate that temperature and therefore, my dad said that we would sleep in the office that night even though my mom and brother would go home.  I have the best dad because he was willing to do this for me.  However, just as we were about to go home to get my meds and such so that we could come back to sleep, we called my house to see if the answering machine picked up.  It did and therefore, it meant that power was back.  We couldn’t get home fast enough because at least I could eat.  I was starving at this point.

I can basically only eat in my house because I am so embarrassed to eat on the outside.  Even though the only thing I can tolerate to eat as of now is egg whites and pedialyte ices, I still vomit it up afterwards.  So, I really am self-conscious about it and therefore, I refuse to eat outside my house in fear of being embarrassed.

 We really did luck out with the storm because we were the ONLY block to go back up.  With the storm, like 90% of Long Island was out of power.  I told my parents, “Do you realize how lucky we are because we have power and were like one of the first to be put back up?”  It really was certainly amazing.  In addition, whereas people had damage to their houses, we had not one bit of damage.  Not even a tree fell.  We have this one huge oak tree in our backyard that is easily over 200 years old.  Everyone on my block was watching that tree because if that tree came down, not only would it easily crush and take out my entire house, but it would probably knock out a couple of houses on the block as well because it is that big.  However, it is so old and such that the roots must go so far down into the water table that it wasn’t even budging during the storm.  Thank goodness for that.  In addition, as everything flooded, we had no floods by my house. The street did flood and the air smelled like sulfur from the sewerage, but the flooding stopped two houses down from my house.  What luck was that?  It was like someone was looking over us.  You know?  Someone was really looking out for us.  Yet, I did ask my dad that with everything that just happened if we could get a generator because we saw what happened this time with no electricity.  It just so happened that we got our power back right away and weren’t too inconvenienced in that aspect, but honestly… it could have been A LOT worse.  But, of course my dad said that we can’t afford it and maybe next year.  I understand where he is coming from, but I would hate to have to go through something like this again. 

It honestly could have been a lot worse because in my area we were flooded, boats were in the backyards of people, there were tons of fires, people had no power, homes were ruined, etc.  We even had the National Guard here and we had people being rescued in rafts.  Even in the floods, we had fish in them.  I heard we had over 10,000 fish on one of the major streets and we aren’t that near to the ocean.  I even heard one of the fish was a 16-inch bass.  Of course that is “what I heard!”

One of the great consequences of this storm though is that a lot of people lost their houses and businesses.  Therefore, my dad lost some major accounts, which means that he lost income that was very much needed. So… it is now more important than ever to find ways to raise money because my medical bills are astronomical and it makes it even harder to pay the bills with all the business he lost.

I was really nervous to go out the next day even though I needed to pick up some drugs.  I had no cell service still except for texting and I was so afraid that if something happened to me, I would have no chance of getting in touch with anyone… not even the police.  The shopping center around the corner from my house had power at this time and I could have gotten it there, but I was really scared to go because of this.

The biggest problem that we really have is gas.  The lines here for gas are out of control.  You never know when the gas stations are going to have gas and then when they do have gas, the lines for gas are like majorly long.  People literally have to wait on line for hours.  However, I am in major trouble because we desperately need gas.  We desperately need gas for multiple reasons.  Not only does my dad need gas for to work, but we need gas in case have to go to the hospital (not doing well at all) and gas to go to Manhattan because I have a important appt on Monday that can’t be missed at all as my life literally depends on it.

It is impossible for me to go and get gas because I can’t sit in a car for hours to due to the nature of my illness. It is also a hardship for my dad to do this as well because not only does he not have time because he works like a dog 7 days a week and basically 24 hours a day (he barely has time to rest… and that is not a joke), but he has to take care of me as well.  Yet, dad did try to get gas, which really was a hardship for us because it meant leaving me alone when I was really feeling ill. But to make matters worse, Dad sat in line for gas for hours and just when he got so close, they ran out.  Can you imagine? So close and yet so far.  We really needed the gas too.

Luckily though, my dad’s friend son is pumping gas for one of the stations and he gave my dad some gas.  He snuck my dad in the “back” way while everyone was lining up for blocks.  So, at least he did manage to get some gas.  However, it will only go so far because he also needs gas to work.  We desperately need another car to get gas  or get more gas for his car so we can make it to the city on Monday to the doc. We really can’t jeopardize the gas because if we use the gas for the city, what will dad use for work?  After all, the city isn’t exactly around the corner and with all the traffic going into the city as well, it is going to burn up even more gas.  Dad needs his car for work because he basically uses his car for the entire day and depends on it. If we use all the gas for going to Manhattan… How’s he going to work because no gas to do his work… U know??  So I don’t know what to do.

People are really going crazy though and getting hostile when it comes to gas.  Today when we had to get something from store, but we couldn’t park the car or go into it because the line for the gas station wrapped around that block and blocked the store’s entrance and the street parking. So… we pulled in front of the store and next to the gas line so that someone who works at the store could bring what we needed out to us since we couldn’t park the car. I never saw people move so quickly.  They literally came running out of their cars to complain that we were cutting the  gas line. When the guy brought us out the stuff that we needed, one of the people that was waiting for gas in the car next to us told the guy that he “better hurry up and get me out of there because people are getting hostile and going to lynch me!”  People are really getting desperate and hostile. I guess I can’t blame them, but enough is enough! We need gas desperately too, but they don’t see me being so hostile!

Halloween also came and went since the last that I wrote.  I cut open the pumpkins of course and made delicious pumpkin seeds. Nothing ever tastes the same as pumpkin seeds fresh from the pumpkin.  You can never get the same taste as them in the ones you buy in the store even though they are still “pumpkin” seeds.  I had two pumpkins to cut, but one pumpkin was impossible to cut.  So, I ended up cutting one and gave one to my dad.  Of course it so happened that the one that I wanted to carve was the harder one to carve, so my dad got it.  I just liked the size of it and the way the stem was.  It reminded me of a witch.  My dad tried to finish it so quickly and made a jack o’lantern with only 2 eyes and half a mouth.  I made him make a nose and finish the mouth.  I mean come on… if you are going to carve a pumpkin… you gotta do it right!!    

So… that appears all that is going on.  I guess that kinda sums up everything that is happening.  I just hope that things turnaround with Nebraska and that something comes around with the donations and such because I can’t afford it.  I also hope that I start to get better from this illness/cold because I can’t fight anything and I literally can die from a simple “cold.” It really does take a lot out of me.  I really need to get better soon also because I leave very shortly for Nebraska. 

I know I am not doing too well because Missy of course won’t leave my side.  She is like my babysitter. She stays with me everywhere.  I am getting so weak. It is at the point that I can’t even go to the bathroom during the night because it takes too  much out of me to get out of bed.  The least I have to move, the better that I am.  But when I do go out of bed, Missy follows me even though she knows I am coming right back to bed.  It is like she has to go with me just to make sure that I am OK. 

I am really not doing well and dad of course is bribing me too.  He is so afraid of losing me and to be honest… I know if something should happen to me, he would never recover. He keeps telling me that if something would happen to me, he wouldn’t take his medication or take care of himself.  He also tells me that I wouldn’t recognize him in heaven because he would be “fat as a house.”  I know he doesn’t mean anything “bad” in what he is doing, but he acts as if I am in “complete control” of when I should die. I keep telling him that when I do go, it isn’t to hurt him or anything.  I would do anything to stay with my dad, but I don’t wanna suffer anymore.  I just can’t take it anymore.  It is so unbearable.  My dad says he doesn’t want me to suffer either, but he says that he is “selfish and he doesn’t want to lose me.”  If it was up to him, he would have be “frozen” so that I can live forever.  He has it planned that he would freeze me and since technology is always changing, he has it planned that he would unfreeze me when they come out with a cure.  He would really be at a great loss if something would happen to me.  Perhaps that is why I fight so much to live… it isn’t so much for myself… but it is for my dad!!

If you have any ideas on how to raise some more money, please let me know.  I appreciate anything that you can do.  In the meantime, I am the energizer battery and I just keep going and going and going!

Love,

Fallon

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