FALLON MIRSKY

Please help SAVE MY LIFE!

January 27, 2014

on January 27, 2014

1780248_10101041819677000_217387450_oHola!

Como estás? Finalmente llegamos a México!  Estupendo!  Qué viaje!  Gracias a Dios que estamos aquí!   Me encanta estar aquí! Es precioso y la gente es muy agradable.  El medico es simplemente increíble!  Well… in English… I said “How are you?  We finally made it to Mexico!  Yippee!  What a trip!  But thank goodness we are here!  I love it here!  It is gorgeous and the people are so nice.  The doctor is incredible!”

I love how everything is in a different language that I am used to including soda.  The diet coke bottles even say that they are from Mexico on them and are labeled differently even though they are exactly the same thing as what we drink in the USA.  I figured that since I am in Mexico, I should be speaking their language.  Actually… we really don’t have a choice because even though a lot of people do speak American to a point, you really need to speak the native language of the country you are in if you are going to be able to communicate.  Even though they know English to a degree, it has been very difficult to get them to understand what you are talking about if you do speak it in English. So it is much better speaking the native language.  Plus, part of the fun and whole experience of being out of the country and in a new one is speaking the new language.  I must say though it has been quite an experience.

1523416_10101042347354530_1862913000_oEven though I took Spanish all throughout my schooling, I really haven’t used it in such a long time.  I guess the saying “when you don’t use it, you lose it” really is true.  However, it kind of has been like riding a bike for me in the sense that you don’t truly ever forget how.  Even though it has been difficult relearning how to speak the Spanish language, the more I am doing it, the easier it is getting and it is also coming back to me.  My dad on the other hand is a different story.

I have been doing much better than my dad.  I know much more Spanish than my dad because I also took Spanish in school whereas he didn’t.  He knows VERY limited Spanish…. so his theory is that if he doesn’t know what they are saying, he just “yes’s” them. He also uses his handy dandy finger to point to things that he wants if he doesn’t know how to say it, whereas I have my handy dandy iPhone that has the translator just in case I need something translated.  When dad does speak the language, he tries to pretend that he actually “knows” the language.  So it was hilarious today when we got off the plane and when we were going through customs because he tried to show to the person who worked in customs how good his Spanish was and instead of speaking Spanish, he spoke Italian.  He wanted to tell the person that he was “finished” so instead of saying “terminado,” he ended up saying “finito!”  Both the official and I looked at each other and the official said to him “that is French!” It just so happened also that it was right after my dad told the official that he spoke Spanish “un poco,” which means a little.  But even if a person only speaks “a little,” they should definitely know how to say “finished.”  I couldn’t believe my dad did that!  Wrong country dad!

1009043_10101042254450710_1400309586_oAnyway… Thank goodness we are here.  I am so glad that we finally made it.  But like always it is always an adventure when you are traveling with my dad.  During our stopover in Atlanta, we almost boarded the plane without my camera.  I even asked my dad before we went through the gate “Are you sure that you have everything?” However, just as we were about to step on the plane, I realized that the camera was missing.  So my dad had to go all the way back out of the gate to where we were sitting to go and see if the camera was there.  Sure enough it was.  Talk about a  “close call” about leaving the camera behind.  At least though it wasn’t the medicine like he has done in the past.  LOL.  But still… I love my camera and love taking pictures.  So if he would have left my camera behind, I think I would have killed him.  LOL.

1622341_10101042244281090_1047126592_oWhat a time we had on the plane!  My dad always tries to make me smile and laugh.  So even though this was a long, exhaustive, and extremely difficult trip on my body, my dad tried to make it as easy for me as possible and as fun as possible.  So we took pictures of each other and even took pictures of us looking like “aliens!”  It was really funny with the way we came out!  I really have one terrific dad. I am so lucky to have him in so many ways.  I don’t know what I would do without him. He is certainly the BEST.  He’s not only my dad, but my BEST friend!

The weather in Mexico is beautiful.  I love it.  As soon as we left the airport, it felt so good to be here because of the warmth.  Definitely a huge difference from being in freezing and snow New York.  I have left the winter vortex and arrived in beautiful sunny Mexico.  It has been in the low 80s, and the skies were so blue.  It just felt so good compared to the cold against my body.

1557378_10101042367274610_1992581914_oThe hotel is also gorgeous.  I can’t believe what it looks like.  I feel like I am staying in a palace.  Our room has a gorgeous view, as it overlooks the mountains. The hotel even has a pool that I would love to swim in.  However, I can’t swim in a pool because of how painful it is due to my illness.  In addition, the food the hotel has looks amazing.  It has all these fancy desserts, but unfortunately I can’t have any because of my illness.  So I am making note of all the good things I will have to do when I get well before I leave Mexico.

The people here have been simply amazing.  They have tried helping us in any way possible.  They tried to make my stay as comfortable and pleasant as possible.  In addition, not only were the people amazing, but also I was totally shocked by the hotel we were staying at.  It was like a palace.  I never have stayed at such a beautiful place.  The doctor had arranged it along with another patient of his who happened to have underwent the exact Coma that I will be undergoing.  She is the one that I have shown videos of to explain the Ketamine Coma I will be undergoing, as she and my case are very comparable.  The doctor has stated that she is one of two cases that are considered the worst to have the disease ever.  Yet, she looks like a million dollars now (and it literally took that much to get her to that point), and I am hoping to look that good after this Coma as well.  Here is the link again to see the coma that I will be undergoing and what she went through in case you don’t remember: http://www.youtube.com/watch?v=rh35hyDklP4&feature=share&list=ULrh35hyDklP4&index=1.  She has been incredibly helpful because she has been telling us what to do and what to expect in Mexico.  We have it planned that after I get well, we are both going into medicine and going to come back to Mexico to work beside this doctor to help others like ourselves.

But what a trip it has been.  Not only have we had difficult communicating, but also paying for things isn’t much better.  Of course they don’t use “dollars” so we have been having knowing how much things are how much of a “tip” to give.  We finally found out that 13.49 pesos is equivalent to 1 dollar.

Speaking of having trouble paying for things, I totally forgot about the international fee that some credit cards make you pay, so I am really hoping that the card that we used doesn’t have that charge.  I would call the company, but the cost of using your phone is so expensive.  So I guess I am taking a chance.

We met with the head doctor today named Dr. Cantu.  I was really shocked that the doctor came to the hotel to meet us and especially since it was a Sunday, but it is just part of how amazing this doctor is and how different he is from all the rest.  This doctor is one of the best doctors that I have ever seen and we had such a long talk with him.  After talking with him though, not only did I share so much information with him, but he shared information with me as well.  For him to actually teach me something about my disease that I didn’t know or to be able to explain something to me that I was experiencing… it showed that I was in the right place because I was in very good hands.  I really haven’t met another doctor who is able to understand my illness or explain things that I am going through… so there are still so many questions as to why my body is doing certain things and why certain things are occurring even though I know this disease pretty well and are accustomed to it because I have suffered from it for so long.

Whenever we come home from a trip, I always have a really hard night the first night we are home in the sense that my dad has to spend awake with me constantly giving me orange juice and my heart medicines and other stuff because I get these really bad spasms all throughout my body and especially in my legs.  My legs and ankles get them the worst and in fact, my ankles and calves actually become inverted.  I feel like a screwdriver being all twisted up.  You know when you are sleeping and you get those really bad muscle spasms that you literally have to walk out?  Well that is what I am getting but on a much grander and severe scale.

I really never understood why my body really flares up like this.  But the doctor explained to me how difficult the traveling is on me and how it really exacerbates my disease. He also explained to me that part of having this disease is having dystonia, which is causes the muscles to contract and spasm involuntarily. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures.  It is so painful and they are nonstop for at least 24 hours.

It was officially confirmed that I am the worst case that has existed in the world.  The doctor said that even though he thought those other two cases were the worst he had ever seen, I certainly take the trophy!  However, it isn’t really something that I would want to be proud of because it makes the Ketamine Coma so much more risker and dangerous.  I can very easily die during this Coma.  However, as I told the doctor… “It would be a win/win situation either way at this point because I can’t live this way anymore.  If I got better, it would be amazing and a winning situation of course, but if I God forbid died… I would at least be out of my misery!”  I told him how I couldn’t live in pain anymore, as I can’t eat, move, go to the bathroom, breathe, etc.  It is all too much already. I can’t even have a “life” anymore, as I basically spend all my time isolated in my home because of this illness.  It is so painful and affects me so horribly that  can’t work and I can’t even have a social life. I literally spend all my days looking at the 4 walls because even going outside is torment, as I am hypersensitive and the sun burns me.  Even the touch of my parents’ hands on me will hurt me.  I can’t spend countless nights awake anymore.  I can’t keep vomiting.  I just can’t do this all anymore.  Something has to change.

The doctor told me that this Ketamine Coma has only been done 38 times before, so I will be the 39th patient.  I will also be the first patient to undergo the Coma in the new hospital.  Yet, even though I will be in a ‘new’ hospital, I will still have the same ‘team’ who has worked with the other 38 patients.  He told me though that the hospital is much nicer and has more state of the art equipment.  That will definitely come in handy because I am going to be such a high risk.

The doctor is planning to have me undergo the coma and be able to come home within a month, but he doesn’t know if that is going to be possible especially in the state that I am in.  Therefore, he cannot give us an exact price of the coma except that it will cost at least about $100,000 because it will cost that much for the month and of course it will go up if I have to stay longer.  So that is why I need to raise so much money in order to not only be able to afford to have this treatment because we can’t afford it by ourselves, but if it does come down to having to stay longer… we are going to need help paying for it.  So like I said before… if you can do anything to help raise money, I would really appreciate it.  I even gave the doctor a bracelet so that he can also join my team to “Help Fallon Fight!”

The doctor said that I am extremely high risk so anything is possible.  My lungs are very weak and therefore, even though he is hoping to get me off the ventilators after about 2 weeks, he doesn’t know if that will be possible.  I am having trouble breathing as it is and when you are on ventilators, the lungs weak even more.  So he is extremely afraid that once I go on the ventilators about me coming off because my lungs might be too weak to start breathing on their own again.  So he said that it might take longer than usual to pull me off the ventilators.

In addition, the doctor is very fearful of infection.  Since I will be surviving all on machines and the lines placed in me, I will be having multiple lines placed in me.  Therefore, there will be places that can be sources of infection and I am already so susceptible to infection too because of my poor immune system.  The doctor is particularly worried about this because everything is magnified for me and a simple cold can easily kill me.

The doctor is so afraid that if I do get an infection that I would never survive it because it will be so hard to treat.  I am on so much medication that it could probably kill a horse, as I take over 50 pills on a daily basis as well as injections.  These medications are all different kids such as laxatives, opioids, Cholinergic Agonists, etc. However, one class of drugs that I especially take is antibiotics, and I don’t just take one antibiotic either.  The have me on antibiotics because of the severe gastroparesis, as it causes me to have small intestine bacterial overgrowth.  The antibiotics are also being used because it is supposed to stimulate peristalsis and help the gastroparesis as well.  However, by being on all these antibiotics, it means that I am resistant to them basically when I need them to beat an illness or infection should I get sick.  So the doctor is worried that if I get an infection, they will not be able to treat it because of how resistant I am since I am on all those antibiotics already.  So that is just another risk that we all have to worry about!

The doctor doesn’t know what the outcome will be.  He said that is hoping for the best and I will be in the best of hands, but he can’t promise anything.  Out of the patients that had the Coma and gotten better… some have gotten completely in remission where they never have to take a medication or have a Ketamine booster ever again.  They are able to go on with their lives fully and not per se have to worry about this illness.  Others have to still take some kind of medicine and have “boosters” from time to time.  Boosters mean that they get an infusion of ketamine, but it is definitely not as intense or “risky” as this coma.  But even with these patients that have to take some kind of medicine and have “boosters,” the quality of their life is so much improved so that they can go living their lives.

The doctor said that we really don’t have any other options.  We have tried everything there is to try.  He really would like to put a ketamine pump in me as well, but unfortunately it won’t work out because I live in the USA.  The doctor has a special cocktail of drugs, along with the ketamine, which he also feels might help.  However, the only way it can be dispersed is in a pump and no doctor in the United States is going to fill a pump that was placed in Mexico.  So… I am kind of out-of-luck with that because the pump would have to be filled monthly and there is no way I can travel to Mexico every 4 weeks for the rest of my life!

In addition, the doctor also told us not to expect a miracle to happen overnight with the Ketamine Coma.  He said that it is not something that you undergo and when you wake up that you are miraculous better.  He said that “it comes in small steps.”  Even though the Ketamine Coma does help you and puts the disease hopefully into remission, it takes time for your body to do this.  He said he wants us to be “realistic” in the fact that I am not going to be going for the Ketamine coma and then being able to go running or eat everything I want and keep it down!  He said, “Everything will happen hopefully, but it will take time!”  As he said, “Small steps, huge achievements!”

The doctor has so many plans for me.  Later today (since it is very early morning already that I am writing this) we are going over to the hospital to meet with the team.  The hospital is about a block away, so it isn’t that far.  I am going to get to know each member and they are going to get to know me.  It is where we are going to get the final “go ahead,” which I am hoping won’t be a problem. I am so scared and yet so nervous too because deep-down I am still worried about them denying me this procedure or something else happening that will cause it not to work out.  After all…  he said, “this is basically my only option left” when  I asked him “if this is my only option that I have left?”

Well… I am going to get going. It has been a  very long day already and I am not feeling well from all the traveling that has taken place.  I have a very long day ahead of me.  I just wanted to write to update you on what has happened before and also because it helps pass the time, as I can’t sleep like a normal person.  I usually watch television, but that really isn’t possible here because there are only 2 stations that speak English.  I might be able to speak the language to a point, but hearing it on a television show is impossible because there is too much said and they speak too fast.  You should have seen us earlier tonight trying to watch THE SIMPSONS!  Thank goodness I have my iPad with me.  I am going to try to download a TV show or something because this way it will be in English. There were lots of shows I usually watch on a Sunday like KEEPING WITH THE KARDASHIANS, but unfortunately I have to wait a bit for them to be released onto the computer.  Hopefully that will be soon though.

Thank goodness there is a mall across the street because we are probably going to go there today after meeting with the “team” because we have to get some sodas.  This hotel has no soda machines, which I never heard of a hotel not having and therefore, the only way to get a soda is by ordering room service, which of course is extremely expensive.  Therefore, dad wants tog o to the mall so that we can buy our own sodas so that they are cheaper. We definitely stuff to drink in the room, and I definitely need soda in order to take my medication.  Due to the extreme gastroparesis, I am only able to swallow pills if the beverage is carbonated.  Even that has been giving me problems lately, but at least that works out the best.

1602107_10101039548822810_1814389083_oRemember… Please help me get the very life-saving treatment that I desperately need. The bracelets r here and are $5. The bracelets come in 2 colors (pink or blue) and in youth or adult. If interested in buying or selling, please email at Femirsky@gmail.com. You can send a check via snail mail to the address I give you or deposit the money at my website and I will ship you the bracelet.  However, I need to know your information such as your name, address, how many bracelets, and the color/size.  So please email me if interested.  All money goes towards treatment for my illness. Please share this link!

Hasta luego (Later)!

– Fallon

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