Please help SAVE MY LIFE!

February 5, 2013

on February 5, 2013



I figured that I haven’t written during this entire trip and now that I have info… I guess it would be a good time to write to let you know what is going on. 

 Well… thank goodness I am coming home tomorrow.  I know… I wasn’t supposed to be like coming home til like Wednesday, but we changed the tickets to be coming home tomorrow (well later today since it is like after midnight).  This trip has been nothing but a COMPLETE disaster… from the minute we left New York.  I knew when I woke up the day we were leaving and I was sick as a dog, it was not a good sign at all!!

 I was so sick the day we were leaving… sicker than usual.  I pleaded with my parents not to go, but of course I lost.  I knew that it was in the best interest for me to go, but I was so very sick.  Besides my usual illnesses… the neurological illness, autonomic dysfunction and gastroparesis… I was extremely nauseous and had a severe stomachache (more so than ever) and I had a bad earache and runny nose.  I had a bad cold and because I was sick, it was making my regular diseases less because anything that impacts my body stirs up my neurological disease and also impacts my autonomic dysfunction.  Plus… when I do suffer from a cold, everything is ‘magnified’ because I am so hypersensitive.  Therefore, a simple cold to me is like getting the ‘flu’ to me.  So… I was really suffering.  But, I really had no choice but to continue going to California like this because we had tickets to go and I knew how important it was to go.  After all, we had this set up for awhile and they were expecting us. If nothing else, I am really deteriorating and time is definitely of the essence.  So what other choice did I have?

ImageIt was snowing when we left.  I never saw anything like this when we left because they had to de-ice the plane.  A guy came over in a truck and went up in a cherry-picker while holding a hose.  He looked like an alien and appeared like he was going to put out a fire.  Only when we the stuff came out to take off the ice, it looked like a scene from GHOSTBUSTERS because it looked like the airplane was being SLIMED. 

ImageWe tried to keep ourselves busy on the plane since it was such a LONG trip.  We watched LOOPER and an episode from the television show called THE FOLLOWING.  Dad also had fun with the camera.  I can’t leave him a second alone with it because he goes “camera crazy” with it.  He literally will sneak the camera away from me when I am sleeping and take pictures of everything and anything.  His favorite ones are of me sleeping and of his eyeballs.  I wanted to get  a picture of the two of us together, but he didn’t want to bother another passenger to take it.  He hates bothering other people to take pictures.  So, every time I tried asking someone, he got in my face and in my way I couldn’t.  So, I did the next best thing… I tricked him!

 ImageDad hates having his picture taken as well.  So… I had to trick him in order to get it.  So… I opened up PHOTOBOOTH on the laptop and took a picture of us through that.  It wasn’t the best picture that we could have taken, but at least it was something!   

ImageWe had a stopover this time in Denver, Colorado.  We never stopped there before.  It was really weird landing there.  Besides the  mountains in the distance, there really looked like there was no life there.  All we saw were plains.  It looked like there could be farming, but there were no farmhouses.  However, where the mountains were… it really was gorgeous. 


Well disaster struck right away.  It turned out that I lost my iPad mini, which is my lifeline. I was so upset because I needed it so much and I really can’t afford to get a new one.  After all, these things aren’t cheap and I don’t have any extra spare cash sitting around.  I depended on that thing so much because I used it for everything.  It was my sense of fun and relaxation. I use it to keep me occupied because I use it all the time to read and play games on it.  After all, I don’t sleep and I am awake all night.  This way it gives me something to do during those long and lonely nights.  In addition, since I don’t go outside, it is my companion during the day so I am not completely “alone” and it gives me something to do.  It is the best thing that I could have ever brought because since I am on crutches and everything, I don’t have to worry about carrying books or games because I can load everything onto this one device.  It makes it much easier to carry things especially when I travel.  Finally, when I go to the doctors and hospitals, which I am always at, it is the best thing to have because not only do I use it to keep me occupied, but I also used it to relieve my stress and to keep me relaxed.  I always get so stressed and scared and uptight at the doctors/hospitals, so at least this helps to keep my mind off of things.  I also keep my records on the iPad to show the doctors because I have so many records (it is like carrying a heavy textbook), so it is much easier to pull them up on the iPad if anything is needed.  So, as you can see it is really unfortunately that I lost it.  I just wish there was a way that I could afford another one but priories are priorities and since they aren’t so ‘cheap’ the money has to go towards my treatment and traveling to California, which is more important. 

 We didn’t realize that the iPad was missing until it was too late.  I heard something drop when we were on the plane, but I checked under the seat and didn’t see anything.  I thought maybe it wasn’t me and it was in fact someone else that dropped something because I couldn’t find anything.  Even when we landed and we were coming off the plane, I looked briefly on the seat and on the floor where we were sitting (my dad did also) and we didn’t find anything.  The iPad must have fallen either between the wall and seat and since it was a black case it blended in with the darkness and floor, or someone picked it up when it fell earlier because I know I did check on the floor pretty thoroughly when I heard something fall earlier and couldn’t find anything.  Anyway, when we were outside the airport waiting for the shuttle, my dad realized that the iPad was missing.  Of course it was too late to do anything because we couldn’t go back to the airplane.  Even if we could, time had already passed and I am sure that the plane already took off again for its next destination.

 As a result, I did the next best thing.  I called the airline and baggage claim to ask if anyone handed an iPad Mini into the Lost and Found and to also make them aware that I lost one just in case one was found and turned in.  However, they were not helpful at all.  All I was told was to go online and fill out a LOST AND FOUND form and if it were found, I would be contacted via email.  So, that is what I did.  I keep checking my email, but I am doubtful that it will show up.  I mean who would hand something like that in?  My dad said, “If one of the flight attendants found it, I might have a chance, but if another passenger found it… I am out of luck.”  My dad also said, “Since the plane is going on to Las Vegas, one person is going to say ‘my luck is already beginning!’”  I am hoping it shows up, but I am not counting my chickens before they hatch.

 However, once we got to the hotel, it felt great to be back.  One thing I love about coming to San Francisco is the hotel because the staff is so friendly.  We always stay at this hotel and therefore, everyone knows us.  Everyone is so nice and they all come over and talk to us, shake our hands/give us hugs, etc. They really make us feel ‘welcome’ and comfortable.  In fact, they saw how edgy my dad was when we arrived from all that traveling and they told us to go sit down and they asked if me if my dad or I wanted anything on the ‘house.’  Of course my dad doesn’t technically ‘drink’ and since I can’t drink because of all my medicines… they just gave me a diet coke and they gave my dad a coffee.  They are truly wonderful here.  They really go way beyond the call of duty for us!!  They make us feel like “family!”

 Besides losing the iPad, disaster continued even the next day.  In order to get to the hospital, of course dad and I had to rent a car.  Dad and I are NEVER late for our appointments.  In fact, we have a reputation of being punctual.  If we are ever late for an appointment, it really meant something BAD has happened and it is time to “worry!”  Doctors and other people even know that.  They have even said that to us that “we are the only people who are ALWAYS on time.  If we aren’t there, it is something to worry about.”  However, when we went to get the car to rent out, it was nothing but problems, which made us late to the doctors. You can’t really even afford to be late to these doctors in the first place because most doctors, especially top specialists like these, refuse to see you if you are late.  After all… time is money and you need them more than they need you.  Fortunately though, they understood why we were late and saw us.  We were only 15 minutes late, but still… it was still a sufficient amount of time to be late.

 It turned out that when we got the car, my dad forgot one of the parts to the GPS up in the hotel room.  Even though the hotel was only about a block away, it still took time to drive back to the hotel and have my father go upstairs to get the piece and come back down.  However, we are kinda lucky that we had to do that because when we went back to the hotel, the “Emergency Brake” light kept coming on.  There was something wrong with the car and therefore, we couldn’t drive this car and take it for an hour’s drive to Palo Alto and Redwood City.  So of course we had to bring back the car to the rental place, get a new one, and leave again.  All this took time and therefore, we were late to get to the doctors.

 Besides this car giving us problems, when we were coming back from the doctors, the new car started giving us problems as well.  The new car that we had started to have the light for AIRBAG alert start to light up.  My dad was starting to be afraid that the airbag was going to deploy and whack me in the head and kill me.  Only our luck!

 Anyway, once we got to the doctors we thought we would be able to park very quickly because of handicap parking.  We had brought my permit from home so that we would be able to park in the special spots marked for handicap permits only.  However, once we parked and went to hang the permit, we realized we didn’t have it.  We couldn’t find it anywhere.  Great… it was another thing that was lost.  Not only that, but we couldn’t park there either and we had to spend some additional time looking for another spot.  Fortunately, we found one quickly.  Also, whereas we thought we lost the permit on the plane (along with the iPad), we found the permit back in the hotel room stuck in magazines.  Thank goodness for that.

 Well… things didn’t go too well with the doctors.  The first appointment I had was for the psych clearance.  Since they were talking about putting me under a big and heavy coma that is extremely dangerous and such, I needed to have psychiatric clearance to make sure that I am “sane” and not clinically depressed, suicidal, etc.  So… I had so much paperwork to fill out. I hate when they give you surveys and questionnaires to fill out, especially when they ask you questions about “What would you do” or “ranking your pain” and such.  I just know what I feel and can tell them exactly what is going on… but to put everything in terms of “ranking” … I kinda have a hard time doing it.  I also have a hard time sitting there for a long time filling out paperwork especially stuff like this.  I don’t have the ability to focus on stuff like this because it is so tedious and they ask the same thing a million times… just in 100 different ways. You know?

 So I didn’t finish the paperwork and fortunately, they are allowing me to finish it at home and send it back to them.  It has to be in by Friday though because there is going to be a BIG team meeting on me and they need everything.  But at least I wasn’t stuck there filling everything out there right now.

 Anyway… the Psych meeting went ok.  I guess I passed the psych meeting/evaluation because when I met with the pain team/ketamine team…. they were willing to do the ketamine coma.  However, they explained to us how dangerous that this coma is.  It is the most dangerous thing that I have ever had.  They even want to do it longer than 2 weeks, but my dad unfortunately can’t stay longer and we don’t even have the funds for it.  The doctor explained that I can very well die during this coma because of how high and intensive the ketamine is and what is happening.  However, since I couldn’t stay longer than 2 weeks… they were first unwilling to do anything.  They said that I would need more than 2 weeks… but like always…  funds wouldn’t permit.

 But, all that changed when I then had a meeting with the HEAD doctor. The head doctor didn’t like what was going on with me at all.  My BMI is like 11.7, which is basically lethal.  I desperately need something to be done and done quickly.  The best thing for me would to have the transplant, but it is so very dangerous and the insurance is giving us a lot of problems.  However, my body isn’t even in the BEST shape to tolerate ANY type of surgery whatsoever, let alone a MAJOR surgery like this transplant, which I would receive a whole new GI system (stomach, small and large intestine, pancreas, and liver).  I would clearly most likely die.  Therefore, they wanna make me as strong as possible too because even in the best scenarios, there have been complications.  Not one transplant has been done without a complication. 

 In fact, when I spoke to the doctor a couple of days ago and we were discussing the transplant, the doctor told me that they really needed to BUY me time because they wanted to make me stronger for the transplant because they were afraid I wasn’t going to make it.  When I spoke to him a couple of days ago, the doctor told me that they lost 2 out of the last 3 transplants.  However, when we met with him today, he told us that they lost all 3 of the last transplants.  I was like “I thought you said you only lost 2 out of the 3?”  He then said, “We only lost the last one the other day.”  He even said that the one that recently died was doing ‘well’ and yet… ‘You never know.’  He also told us and explained to us yet again and reinforced it to us yet again how dangerous and risky and such this transplant is.  I think by now I have it permanently ingrained in my brain how dangerous it is because he is constantly telling it to us.  I don’t think he would even let us forget how hard and dangerous it is for a second.  He did tell us though that they are learning with every transplant since it is so rare and still fairly ‘new!”  He said that a big mistake with the three transplants that they lost was that there was no liver transplanted.  He said that that the liver definitely needs to be transplanted in order to be successful.  So… when the time comes… I will definitely be having my liver transplanted as well, but of course we definitely need to build me up and make me stronger because these people were far better and stronger than I was and they couldn’t even survive it.  Yet, we are between a rock and a hard plate because without… I don’t have much time left either.  You know?

 So… now its time for the next plan of action… which is to buy time and to save my life in the meantime, while I get stronger for transplant… which I will need in the very near future if I am going to be able to live.  So, we decided on coming back in March for a HUGE ketamine coma and being tubed.  It is going to be a HUGE procedure, but we have no other choice.  We need to do something to try to save my life.

 The doctors are planning on putting me in a HUGE ketamine coma and putting tubes all in me.  They will run the tubes way into my small intestine and bypass my stomach and such.  They will try to bypass most of the small intestine as well and go down low enough into the intestine to possibly get to a place that is not as “dead” or paralyzed as the rest.  We don’t know if there is such a place down below (so very low) but it is worth a shot.  We also don’t know if my body will accept the tubes or even the food that is put into the tubes because of my illnesses.  But one thing at a time.  The first thing is to get the tubes in me.  So I have to undergo an operation for that.

 I am very nervous about undergoing the operation for the tubes because the last time I had something similar done like that, I didn’t hold up very well.  It really ended up exasperating my neurological illness and ended up not being able to walk and wasn’t even able to stand up.  I really freaked out the last time when I had surgery because I was never able not to stand up.  I have had my share of complications before, but not to be able to even stand up, it really scared me.  I thought for sure that I was “done with!”

 But, thankfully I made a ‘comeback’ and was able to stand and walk again with my crutches.  Thanks to the wonders of ketamine, the doctors put me into a ketamine coma and the ketamine (my magic drug) gave me back the ability to stand and be able to walk again even though it was only with my crutches.  At least I was able “function” like I was pre-surgery.  In addition, my heart also gave me problems, as it even stopped.  I had to have the paddles brought in and my heart rate kept dropping so low like 30 and below that they wanted me to sleep with the paddles.  It wasn’t easy on me whatsoever.  I am not in the best shape, so it is really going to be a dangerous and stressful time.

 But it really gave me the scare of my life.  I am really afraid that the same thing is going to happen now with the surgery again because of what happened the last time.

 After the surgery and the tubes are in and such, hopefully my body won’t reject the tubes and feedings because I will be on an intensive ketamine coma.  But… with my illness, all bets are off. If I do tolerate it, then will never eat again.  The doctors are going to put a permanent tube in me on my side and I will forever not administer food into my mouth.  I don’t know if that is a good thing or bad thing at this point.

 I would love not to have to eat in a way because I am unable to swallow currently.  I am getting really sick nowadays from eating and I honestly can’t take it anymore.  It is getting harder and harder to swallow as time is progressing and I can barely swallow anything, if at all.  Even my tricks that I have developed to swallow food and medicine aren’t working anymore, as I have used soda in the past to take medicine and eat because the carbonation had helped get things down.  Now it doesn’t even help.  I am so limited to what I can eat, as anything with carbs doesn’t really go down.  All I basically live on is a little bit of ice cream, nuts (only certain ones), and egg whites.  It really isn’t much.  Even the ice-pops that are medicated are getting impossible to take.  Who would think out of everything that ‘ice-pops’ would be so impossible to take, right?  But at least I am eating. I really don’t ever want to give up that pleasure because this illness stole so much from me already.  I would hate for it to steal that from me as well because eating gives you so much… you know?

 I would hate never to eat again.  I don’t honestly want to even think about it.  Even though I would not really ‘suffer’ as much because I wouldn’t have to ‘swallow’ and it bypasses my stomach, it really is asking a big price to pay for that.  First of all, I would always be hungry.  You just don’t feel full because you have food in your body.  Because the food will never enter my stomach, I will never feel full.  Then because I won’t physically be putting food into my mouth, my brain won’t register it either… so I would be really hungry too.  My stomach will probably constantly be growling from food even though I would be getting nourishment through the tubes.  It would be really unpleasant.  So I don’t know if it would be worth it.

 Besides those feelings, eating really does do a lot for you.  Eating is like a social activity that is something I really don’t want to give up because it is kinda one of the last things that I have still.  Who would want to go to restaurant with me and just have me ‘watch’ them eat?  They probably would feel extremely uncomfortable with this.  I know if it was on the other foot and I was with someone just ‘watching’ me eat… I would feel funny and uncomfortable even though I knew that they chose to come and it wasn’t anything that really could change or be done about it.  Going back to me though… I also know that I would be uncomfortable being around food and going out with people and watching them eat because I would probably be hungry just watching them eat.  I mean… just the smell of food would probably make me even more hungrier than ever.  The doctors have said that there are ways to go around it like putting mint under your nose so you don’t smell it, but this is definitely not a life to live.

So honestly… I don’t know what I would want.  Do I pray for this to be successful and it works so that it buys me time because it would entail never eating again?  Or do I pray that it doesn’t because at least I still get to eat?  But if my body does reject the tubes and feedings, the doctors do have to put another plan into action and another plan fast because I am really deteriorating and time is of the essence.  They really need to buy time.  So they will do another procedure on me right away… another procedure that I am not too keen on!!

 If the body can’t accept the tubes, they will have to find another way to buy time and strengthen me.  Therefore, they are going to have to probably go back to giving me TPN (total parental nutrition).  Even though I have failed it in the past, they are going to try it yet again.  They will open up a central line in me and give it through there.  In order to receive TPN, a central line must be inserted. Typically, the first line is called a PICC line and is inserted into a vein in the arm. PICC lines are different from peripheral lines in that they are longer and the tip ends up in a large vain close to the heart. They are longer lasting than a regular IV line. However, I have failed them in the past.  They have also flared up my illnesses such as my autonomic dysfunction and neurological disease immensely and had to be removed.  Therefore, they will probably use a port in my chest because it is better.  However, this is NOT recommended long-term or on an outpatient basis due to an increased risk of infection, which I definitely can’t afford because it can easily kill me.

 I have had so many problems with the TPN in the past.  It really stirred up my illnesses in the past and needed to be removed. I can feel anything and everything.  Even when doctors put IVs in me, they literally have to wait til I am ‘knocked out’ before they can start the fluid because I can feel the slightest amount of fluid.  Anything that stirs up my autonomic dysfunction and neurological disease is not good.  Not only does it cause me extreme pain (which I am already suffering in agony 24/7), but also it really stirs up the autonomic dysfunction so badly that it makes it really difficult to breathe and such.  I honestly don’t know why I am doing this, but I guess it is because I have no other choice.

 The doctor did say he would try to work something out to try to make TPN more comfortable if we had to go that route.  He is thinking that possibly I would have a lidocaine drip along with the TPN if I had to have it.  This way I would be kinda numb and in less pain.  However, we don’t know if it will work or anything.  One thing at a time.  I guess we won’t know anything until we do it… but first thing is first.

 The first thing is to have the surgery to put the lines in and for the coma.  The doctors are also going to be having a team meeting in the next week or so to further discuss if there is any other better treatment that can be done for my pain.  I am really nervous because as of today, the doctors said that I am really in ‘bad’ shape and how I exhausted everything.  They said that I am really in bad shape and really out of options, especially when there is no cure for my neurological disease, which is the most painful thing out there.  My neurological disease is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.  The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating.  I suffer all the time and the pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!” If they are asking as a friend and you don’t want to scare them away you simply say, “It is the most pain I have ever experienced, it hurts constantly.”

 Most people don’t realize how bad it is… not even my dad because I don’t want them to know how bad it is.  I try to protect my dad and not show him how bad I am really suffering because I love him so very much and I don’t want him to know how really bad I am suffering.  I also don’t show the general public how bad this disease really is because I lost a great many friends because of the disease and they don’t want to lose more.  So I usually try to dress as good as I can and say “I am fine. It is nothing I can’t handle.”  Once in a great while I may let them know how truly horrible it is, after all, they see it in my eyes. But most of the time I try and shield them from the depth it. Yet, it is getting harder and harder to hide my pain because I can’t control it anymore.

 Obviously to make me stronger… they desperately need me to gain some weight because I am so low.  I mean… I am basically walking on death row because my BMI is so very low.  They are so very scared I am going to die any minute because I am only weighing in the 60s and getting closer to the 50s all the time.  It is really freaky to know that I am like 30 years old and weigh so little.  Yet, they told me that to gain weight too, I am really going to have a BIG fight ahead of me.  They said that it is so very dangerous to do that as well.  Who would think, right?  They said that because I am so very low, they have to be extremely careful not to “feed” me too fast and make me gain too quickly because it can easily kill me.  They said that they only want me to gain like 5-10 lbs. the first year.  I was like “Are you kidding me?  That is like nothing!”  But I guess with working with conditions like I have… ones that are so hypersensitive… you have to take every precaution and you can’t go fast at all! After all… the slightest wrong move can easily set us back BIG time or even kill me.

 But like I said, the next move is to have all this done.  Since that is all that is left, we don’t really have much left to do here as of now.  All that is left is to prepare for this BIG coma and surgery, which is extremely tedious and going to need a lot of prep.  Even though I need this as soon as possible, it of course cannot be done overnight for multiple reasons.  First of all, it has to be authorized by the insurance because even though the insurance will not be covering it totally, they will hopefully be giving me something towards it.  Second of all, we need to regroup on funds.  Even though the insurance is hopefully giving us something towards it, it is definitely not going to be nearly enough for what we need.  I know you can’t really put a price on your life or health, but we really can’t afford this on our own… especially now and right away.  We will have to still pay towards the hospital and procedures (even when the insurance pays).  These costs are going to be astronomical because they are clearly going to add up.  For example, even if the insurance pays for things, I still have copayments to pay that clearly add up.  Just going to the hospital is going to cost me $200 per day for being just in the hospital and that is without any procedure or test).  I also have to factor in the traveling expenses, hotel arrangements, procedures & tests (will have copayments for that too), etc.  So… obviously it can’t be done overnight.  Third, the doctors and nurses have to clear their schedules.  I have to have a special bed in the ICU because I need constant monitoring due to the types of drugs I will be on.  People think that you can be hospitalized and have surgery overnight.  But, everything takes time because they are booked and everything.  You know?

 So… instead of waiting around here til it is all done, I am going to go home.  It is going to take some time to schedule everything and it is really costly to stay here. Therefore, I will just return in March. I have til then to find the funds.  I really hope that between now and then I will find a way of raising some funds because I don’t know how we are going to afford it.  After all, like I said before… this is going to be costly because I have to worry about the hospital cost, traveling expenses, hotel, even rental car, etc.  The rental car alone is like close to $100 a day too. 

 So hopefully between now and then I will be able to raise some more funds.  I desperately need them. If you can think of anyway to raise anything, please let me know.  In the meantime, please say a prayer that I make it because I am so very sick and deteriorating by the day.  The doctors are hoping that I make it til March, but they don’t know. I know what some people are thinking… “If it is such an emergency and you are so bad, why aren’t the doctors doing something sooner?”  The truth is though… things can only go so fast.  Rome wasn’t built in a day and I am not the only sick person in the world. There are other people needing things as well.  So… I just have to be patient and hope that everything will work out in the end.

 I am also coming home today because I also want to be home for my birthday.  I want to be able to celebrate my birthday with my entire family and not just my dad.  Don’t get me wrong, I love my dad… but since the doctors are telling me that this is my very last birthday unless a miracle happens, I really want to celebrate my birthday with my entire family (including my mom). 

 Speaking of my birthday… I am kinda upset with my birthday.  I really wish that I could do something SPECIAL to make it a great day and a unique day.  I really wish I could make it a day that is DIFFERENT day than any other day and a day that will be memorable.  I have no way of celebrating it.  I am not going to be doing anything or getting anything that will make it different from any other day.  It will be just like any other day… a day filled with nothing and a day filled with suffering and being in pain 24/7.  Don’t get me wrong, I don’t expect my parents to get me anything because definitely can’t afford it.  They already told me that.  I don’t blame them either for it because they definitely do enough.  It isn’t that I need gifts or anything because gifts are only materialistic items. What bothers me though is that I can’t do anything to CELEBRATE my special day and make it SPECIAL.  I can’t go out and do anything because of my illness.  I can’t go out and do anything fun such as go to the movies, I can’t even go out for dinner or have a special dinner at home because I can’t eat, and I can’t even have birthday cake.  I think that hurts the worse because something so simple as having birthday cake isn’t possible.  What is a birthday without having birthday cake?  I told my parents not to waste their money on cake because I can’t have it.  I told them just to get me a donut since it is $.70 and put a candle in it.  It will be much cheaper and at least I will have my candle to make my wish, even though I know it probably won’t come true because it hasn’t come true for so many years already!!

 I can’t believe I am going to be 31 years old and I really have accomplished nothing.  I went from being top of my class in high school to having everything going for me to really just ‘existing’ in the world.  I had so much to contribute to the world too.  I was a competitive figure skater, straight “A” student, top violinist, etc. I was really going to make a difference.  I was going to go to a top college, going to become a doctor, going to help people, going to live on my own, going to get married, going to have a family, etc. But now all those dreams and that life is all gone.  I basically just ‘exist!’ I basically do nothing and have nothing to contribute.  Even though I would love to have that life back and still be able to do all that stuff like become a doctor and such… in reality… I know that is not going to happen.  I even wonder if getting married is in the cards because you really learn who your true friends and family are when you are sick.  I just wonder at times if I am going to live to see another day. 

 I never thought my life was going to be like this.  It just proves that no one should take his or her life for granted and when you have your health, you have everything!!I would do anything to have my old life back.  It is so unfair that I was ‘robbed’ of everything.  This disease really took everything that I had.  Everything that people take for granted was stripped from me… including walking, eating, and even being touched at times.  But I am like the ENERGIZER  BUNNY.  I KEEP GOING AND GOING AND GOING!!

 Well… I guess I should be going.  It is going to be a very long day.  I am not feeling well either. I have a huge stomachache and I am only wondering what is going to happen after this plane ride.  Traveling takes so much out of me and when I came home from Indiana 2 weeks ago, I got so violently ill that I couldn’t even walk.  I was so weak and was getting spasms all throughout my body.  It takes so much out of my to travel.  That is why my parents hate it when we have to fly, but what choice do we have?  We had to fly to California because it is the best place for me and it is on the other coast.  If only it was closer!

ImageI also have been busy writing each of my parents their own book.  I want them to know how much I love and appreciate them.  Each one is going to be published and binded and be like in a real “book” form.  It is going to show how much I love them and why I “love” them so much.  

Well… talk to you again when I am back in New York.  Again… thanks again for your support encouragement.  Probably talk to you when I am another year older.  Again, if you have any ideas to raise money, please let me know.  If you can also please spread the word of my website and bring awareness to my illness and website, I would really appreciate it because I would love to be able to see my next birthday and that will definitely not happen unless a miracle takes place or I receive treatment, which we can’t afford on the funds that we currently have.  If nothing else, please say a prayer for me… at least that is free and yet it’s powerful and hopeful!






One response to “February 5, 2013

  1. jenny fishman says:

    My heart aches for you. I hope and pray that you get some relief. Lots of hugs, that don’t touch you, are coming your way, along with tons of prayers!!

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