FALLON MIRSKY

Please help SAVE MY LIFE!

January 26, 2014

on January 26, 2014

1604389_10101041626149830_545459132_nHi!

Just wanted to let you know that in a few hours I will be on my way out of the country and on my way to Mexico.  I am extremely excited and nervous, but I wanted to let you know about this upcoming trip, as we need all the prayers and support we can get.

This will be my first time out of the country.  I never was out of the country before so I am really excited.  We have our passports all ready to go and we already know to be extremely careful of what to drink and eat, as we know not to ‘drink’ the water and not even to have ice in our drinks unless the water is ‘boiled!’ I really hope my suitcase will make it to Mexico untouched because we packed some food in there and we don’t know if we are allowed to bring food out of the country and into Mexico.  We are pretty certain that we are not going to be allowed to bring it back into the United States, but we are hoping to at least be able to bring it out of here and into Mexico, as it is my cereal and there is only a very few things that I can eat.  I usually nibble on this throughout the night because I can’t really eat anything and I am so very hungry.   I can’t really eat much of this either, but at least I nibble a little.

Granted that I could probably buy it when I get to Mexico, but it would really be much easier to bring it with me.  I have these little prepackaged bowls that I have so I know exactly how much I am eating and able to bring it right into my room with me instead of carrying a whole entire box or emptying into a real bowl.  You know?  Plus it will save us the problem of first having to look for a supermarket and going to get it by being able to bring it with us.  You know? So I am really hoping that they don’t take it out of our suitcase.  I don’t care if they take it out when we come back to the United States because I have more at home, but I just really need it not to be touched going to Mexico.

mmexicoSo we are all packed and ready to go.  Our flight leaves bright and early and in a few hours.  Of course I can’t sleep because of my illness, so I decided to write and let you know of our upcoming trip.  I really hope our flight goes through without any problems and we are not delayed because of the weather.  It snowed a bit yesterday and it is extremely cold.  So I am sure that whatever did come down has turned to ice.  I am hoping that since it snowed all evening and it only accumulated to about 2 inches or so, it will have given the airport enough time to clean the runways and it won’t affect the airplanes.  I really can’t afford to be delayed because our connection is an hour after we land in Atlanta, which doesn’t leave much time if we are delayed.  I am so scared that if we are delayed, we will miss our connection.  So keeping our fingers crossed that all will go smoothly.

I am really also afraid of this weather because it has been crazy this year and I really don’t also want to be stuck in Mexico when it is time to come home.  They are talking about another storm brewing, but they aren’t sure if it is going to end up happening or not.  I hate storms because it means flights are canceled.  I really would hate to even think that it would happen to us.  So I am just hoping and praying that the snow will not happen and stay away (or ‘keep up’ vs. ‘come down’… LOL) because I don’t want to be stuck in Mexico.  If all goes according to plan, we will be coming home later this week.

Even though I desperately need this Ketamine Coma as soon as possible and traveling is extremely impossible on me, I cannot have the Coma at this time. The doctor would love to have me undergo the Coma now, as I really desperately need it and I am rapidly deteriorating, but unfortunately we don’t have the funds to pay for it.  We already have the approval of the government, hospital, and doctors, but since no one is going to do the Coma for “free”, I am quite out of luck until I come up with the money, which is about $100,000.  If all goes well, we are hoping to undergo the Coma on March 1st.

Even though this Coma is extremely rare and radical, it has been done about 40 times before at a particular hospital.  When I undergo the Coma, I will be the first patient to undergo the Coma at this new hospital called CIMA Santa Engracia Hospital.  CIMA Santa Engracia Hospital now called CIMA Monterrey is affiliated to Mayo Clinic, South Western Medical Center, and Children’s Hospital Boston.  This hospital in Monterrey, Mexico, and it is JCI-accredited and just a short flight (90 minutes) away from Dallas, Texas. The International Hospital Corporation, an American group, runs it and offers advanced medical care.  In addition, it is one of the top hospitals in Mexico, it employs the best board-certified surgeons and physicians. More than a quarter of CIMA’s staff speaks English, which is a very high proportion for a hospital in Mexico.  The Hospital CIMA also follows standard US protocols on patient care, infection control, and has a very low infection rate of 0.002%.

I am really hoping that other people will help me as much as possible because my life literally depends on it.  I really need donations and help fundraising because like I said before, we cannot afford the Coma on our own.  I have been sick for so long and this illness has been so expensive.  I have had a countless amount of treatments and seen countless amount of specialists.  This illness has literally drained us.  Therefore, we have accrued medical bills like crazy and they have piled sky high that we can’t even afford the mortgage or even to put food on the table.  Despite all the “cuts” we have made, we still cannot afford the treatment that I need.

1602127_10101039391692700_874790554_oOne of the ways we are fundraising and hoping to raise funds, as well as awareness, is through the selling of bracelets.  The bracelets are $5, come in 2 colors (pink or blue), and 2 sizes (youth or adult).  The bracelets say “Help Fallon Fight!” 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.  If you want to sell bracelets, I can also give you a bunch and you can return the ones that you don’t sell.  All money goes towards treatment for my illness. Please share this message!  I am really hoping that these bracelets will not only bring in money so that I can receive the treatment that I desperately need, but hoping it also brings awareness to this mysterious disease.

Even though we don’t have the funds for the Ketamine Coma as of now and we are planning on going for the Coma on March 1st (providing we have the money), we are going to Mexico now for about a week to finalize everything.  We still need to sign all the papers and get everything “finalized” before everything happens.  We also want to get situated with everything and “see” everything beforehand so that we are just not hit with everything all at once when it is time to actually put my life in their hands.  We are meeting with the entire team and getting to know each doctor and member who will be taking care of me.  We will also get to know the entire hospital and surroundings so that we will feel more comfortable when the time comes for me to undergo the Coma.  It will be important that my dad and I feel as comfortable as possible because like I said before, we are literally putting my life in their hands.  They are essentially going to be shutting my entire body down and putting it all on ventilators and machines for quite some time.

During this Ketamine Coma, I will be given so much ketamine that my body would never be able to survive it without being placed on machines and ventilators. I will be having lines literally coming out from everywhere and be kept alive on these machines.  The doctor has claimed that I am one of the worst cases in the world that he has ever seen and only 2 other cases have been comparable to mine.  The doctor is hoping that after about 2 weeks to be able to take me off the ventilators and take me out of the Coma, but since there is no protocol or guarantees, it is all just a “hope” and we have to see if my body will be actually able to come “off” of them at that point.  When I come out of the Coma, I will literally have to relearn many things including how to use my body again because of the amount of ketamine that I will be given.

So… since this is such a big procedure, the doctor wants to make us feel as “comfortable” as possible.  The doctor is having us meet with the entire team one day so that we can ask all our questions and we can all get to know each other.  It is a way of all of us getting to be more familiar and more comfortable with each other, as well as a way of easing the nerves for the Coma.  So one day we will be meeting with them and another day the doctor is going to have us tour the hospital and surroundings since we will be down in Mexico for sometime.  We will be there for about a month and therefore, he wants us to feel comfortable where we are and know that it is a really “beautiful” place and nothing to fear.

Hospital CIMA in Monterrey, Mexico has both superb medical care at low cost combined with patient-friendly atmosphere, and it is the prime reason to be one of the favorites of medical tourists. Monterrey, in the state of Nuevo Leon, Mexico, is an important industrial and business center with a thriving medical tourism industry. It is the third largest city in Mexico after Mexico City and Guadalajara and was rated ‘one of the safest big cities in Mexico’ by the Overseas Security Advisory Council in its 2008 report on Mexico Crime and Safety. In its May 2005 issue, the America Economia magazine rated Monterrey as the safest city in Latin America.  So I should feel very comfortable being there even though I am so far from home.

So I am both really nervous and really excited to be going to Mexico.  I know that I am really in great hands with this doctor.  I never honestly felt so comfortable with a doctor.  This doctor actually gave me his cell number and he is reachable ALL the time… 24 hours a day 7 days a week.  I can email him or call him, and he even checks his messages during surgery.  The doctor is so understanding and so kind.  He never raises his voice and never rushes you.  He takes his time and lets you ask whatever questions you may have no matter how “stupid” they sound or how repetitious.  He even knows how much we “fear” doctors and how much the “white coat” has a negative stigma because people fear doctors and the white coat scares them because of the connection with being a “doctor” and therefore, he never ever even wears a “white coat.”  In fact, I have heard that he never looks like a doctor, as you can always find him wearing just a plain shirt because he doesn’t want patients to associate him as just being “another” doctor.

I know my options are running out and even this doctor said that this Ketamine Coma is like one of my very last options.  I really don’t have much else that I can do because I have done basically everything else… blocks, hyperbaric therapy, Botox, epidurals, ketamine infusions, TENS units, biofeedback, acupuncture, physical therapy, sympathectomies, stimulators, medications, pumps, etc.

I really need something to be done because I can’t live this life anymore.  This disease is excruciatingly painful all throughout my body 24/7.  It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me.  RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.

This illness has caused severe Gastroparesis and therefore, my entire GI system is no longer functioning.  Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition.  It is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia. I also need a multivisceral transplant (stomach, small and large intestine, pancreas, liver), but it is very radical and risky, and we are hoping it can be avoided by having this Ketamine coma performed in Mexico.

The disease is not only in my body, but it is “visceral” too.  It has spread like a wildflower throughout my entire body taking over.  It is basically in every part of the body and even in my face.  In fact, it is even in my jaw, as it makes it incredibly hard to even bite or even open and close my mouth.  I even have had trouble with my brain because of this illness.  Not only has it caused me to have severe headaches, but it has caused changes in the limbic system of my brain.  It has caused me to have insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the body cannot heal itself, it becomes harder to achieve that sleep, and it also makes the pain worse.  In addition, this disease has made it difficult to remember things. My short-term memory is greatly affected, and stuff like what someone told me an hour ago, what I had for lunch yesterday, what I was just talking about, etc., are quickly forgotten. I also have the inability to think of, um, well, ah, hmm, just the right word.  Finally, my ability to concentrate has really also decreased and my level of irritability has certainly increased.

1669634_10101040409572860_1838041989_oI would do anything to have my life back.  My birthday is coming up, as it is in 2 weeks.  We probably aren’t going to be doing anything “special” for it because I really can’t do anything.  All things that are considered “fun” have been taken away from me because of this illness and the only thing that I have in common anymore with that three-letter word is the first letter (“F” for FUN and “F” for Fallon).  Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat.  This disease is excruciatingly painful all throughout my body 24/7.

In addition, we haven’t been able to celebrate so many special occasions lately because of lack of funds.  We weren’t able to really celebrate Thanksgiving or the holidays because we didn’t have any money and therefore, we never exchanged gifts or anything… so just being ‘together’ was enough for us.  Therefore, I am not expecting much for my birthday. I really don’t want much either.  The only thing I want is to get well. So just being ‘together’ and raising funds so that I can achieve the ability to go for this coma will be the biggest gift of them all.

1597299_10101039755363900_2043351661_oI really can’t live this way anymore.  My body is shutting down and I am suffering.  I am also having a harder time than ever breathing, as I am aspirating like crazy because of my severe gastroparesis.  I can’t drink literally anything or eat anything without aspirating.  The slightest thing makes me “gurgle” and difficult to breathe.  My heart bloods are in the “critical value” and I can easily have an arrhythmia or cardiac arrest.  I desperately belong in the hospital, but unfortunately with my illness that isn’t always the answer because it only makes things worse.  Since I have an autoimmune disease as well, I cannot always be in the hospital because that is where infections loom and I can’t afford to pick up any infection whatsoever, as it can easily kill me.  Plus, not many doctors and nurses know how to care for me and therefore, it makes being in the hospital even harder.  I can’t be treated like a “normal” patient because I am extremely hypersensitive and everything’s magnified for me.  Even the  simplest procedure is so hard on me!  There is no such thing as a “benign” procedure for me!

Going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!!  I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.”  So I am on my way today to Mexico so that we can work on getting me this ketamine coma that I desperately need.  The only thing left after this is to raise the funds, which I am hoping to get before it is too late.

So I am on my way.  My dad will be going with me like always.  I am really going to be missing my mom and pets, but we downloaded an application for our phones so that we can talk to each other.  Between the app so that we can talk and then FACETIME, we should be able to keep in touch.  But of course nothing is as good as being there in person. I am surely going to miss them.  But I know that I will be home in a bit.

So… I guess I will be going because I got to start getting ready to leave for the airport.  It is going to be a long morning because our flight leaves in a bit.  The doctor is going to be meeting us today at the hotel.  In fact, he told us when we land to call him, and he will be coming to the hotel to meet us.  I couldn’t believe that he was going to be doing thing especially since it was a Sunday, but this is just one more way that makes this doctor stand out above the rest.

Well… I will definitely keep in touch and let you know all that is happening while I am there.  I just hope everything goes smoothly… especially the traveling because we know how hard it is for me to travel.  It really aggravates my disease and autonomic dysfunction.

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!

Talk to you soon.  Please keep me in your prayers.

Love,

Fallon

P.S. I really hope to have some good pictures to post because I love posting pictures and I have really been having fun working with some new apps and working with new filters and such.  I have been working on making my pictures look more “professional” whether it is through the use of filters and airbrushing, so don’t be surprised if you don’t see a lot of “special effects” or added “final touches” to each picture to make them look better.  I really want these pictures to look as great as possible!   I think my pictures have definitely improved since I have been working with these new programs.  I even look “healthier”… LOL!!  I only wish I did look as good as some of these pictures came out!!

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: