FALLON MIRSKY

Please help SAVE MY LIFE!

February 27, 2014

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I just wanted to personally invite all to tonight’s fundraiser that will be held at the Melrose Ballroom (36-08 33rd Street, Astoria) at 7 PM.  It is going to be one fun-filled and exciting night that will be filled with entertainment, drinks, raffle prizes, an auction, etc. Please come and show your support, and please help get me the necessary medical treatment that I need.  All money is going towards my medical expenses, which includes the Ketamine Coma in Mexico that I desperately need and is scheduled for May 1st and will cost over $100,000.  I am rapidly deteriorating and desperately need treatment.  However, without the help of others, I will not be able to receive the necessary treatment that I need and I will end up dying.  Any questions, please don’t hesitate to contact Maria Tsikos Messados at

I really need medical treatment as soon as possible, as well as I desperately need to get the Ketamine Coma that is scheduled on May 1st because without it… I will end up dying.  A lot has been happening lately and I am worsening faster than ever.  I can’t even believe how bad things have gotten since the last time I wrote, which was not so long ago.  In fact, I have a very busy week ahead of me because of everything that is going on.  I have a hyperbaric treatment scheduled for Friday and a Ketamine infusion scheduled for Wednesday in hopes that something can be done to possibly ‘slow’ things down and help me buy time until I get to Mexico.  We are hoping that it will hopefully change things and help because I am really deteriorating and deteriorating fast.

I have been weaker and in more pain than usual. Not only that, but I am also having severe discoloration in my left leg… particularly in my left foot. My entire body discolors, as my illness is known to cause vasomotor changes throughout my body, but it has gotten to the point where my left foot is literally black and it remains black even when elevated.  I am really scared because discoloration that I received before Even though I had severe discoloration throughout my entire body from this illness that ranged from turning blue to purple to black, it would always fluctuate and resume somewhat ‘normal’ coloration especially whenever I raised whichever limb was being turning.  However, no matter what I do with this foot, the discoloration is remaining black.

I am so afraid that there is really something wrong that it’s going to lead to amputation or something.  The doctors have already said in the past that even if I got ‘better’, it was quite possible that the leg might have to be amputated at some point because the tissue has been dying for so many years.  They told me that all this discoloration meant that the tissue was dying and it can only take so much damage.  They were also worried about any infection setting in because of the fact that it was very possible for it to get easily infected and for gangrene to set in.

I am also very nervous that the discoloration is further showing that my heart is failing because we all know that when your heart can’t pump enough oxygen, the first thing to turn black is the limbs, which is the furthest part of the body.  I already know that my bloods are bad and I have been extremely weak. The doctors are fearful that I a suffering from hypercarpenia, as my carbon dioxide level is extremely high.  Hypercarpenia occurs when there is too much carbon dioxide, the waste product of respiration, in the blood.  Severe hypercarpenia may eventually lead to respiratory failure and possibly death.  The doctors are fearful that I have it because it is caused by chronic obstructive pulmonary disease and insufficient oxygen supply.   After all, I have been aspirating like crazy and my lungs are weakening so much that it is really making it impossible to breathe.

So we really don’t know what is going on. It definitely isn’t feeling like it usually does.  Even the pain that I am suffering is not the ‘usual’ pain.  All we know is that my left foot is black, and it feels like there is someone taking a string and tying it around it and cutting the circulation off.   I literally feel like someone is strangling my foot and wanting to pluck it off.  It is sooo painful.

Therefore, we are headed to Hyperbaric on Friday in hopes that it will help bring oxygen to the area.  I am really hoping it does because I am really afraid I am going to lose my foot… not to mention that I am in so much pain.  After all, having a black foot is definitely not normal.  Besides the primary symptom of RSD being intense, continuous pain, RSD affects blood flow leading to color changes in your skin (blotchy, purple, pale, red, black, etc.). I am used to having my body change colors and fluctuating to blackness, but when it is remaining this color all the time and the pain isn’t the ‘regular’ pain that I am feeling but rather a strangling feeling… it freaks me out even more.

I have also been having trouble swallowing more than ever. It is really scaring me because I am having a difficult time actually drinking things out of cups.  I need to only drink things out of straws or have slushies or something.  I am losing the ability to actually drink liquids out of cups.  I don’t know why that is occurring.  But I do have to say that it is scaring me because I remember that when my grandma was dying, having the very same drinking problem was something that she developed as well.

In addition, I am in so much overall pain and I am getting extremely weak.  I am having a harder time than ever going to the bathroom and I can’t even eat.  All I feel in my abdomen is blurp blurp blurp and it feels like something is ‘leaking.’  We knew that my intestines had a blockage or a twist, which needed surgery, but of course we were putting it off.  Therefore, it could be very possible that it caused further problems.  I am also bleeding in my GI tract somewhere. Something just isn’t right.

I have ketamine scheduled for Wednesday to hopefully deal with this illness as well.  It was supposed to be Friday, but we figured it was more important to go for hyperbaric than ketamine because we wanted to see if the hyperbaric could possibly help brig oxygen to my foot and help with the discoloration.  We are still waiting to hear from the doctor for the hyperbaric, but they are thinking about putting me in the hyperbaric chamber under a higher pressure and for a longer time than usual.  I am usually under between 2-3 atmospheres.  So we will see what will happen.

My illness has really gotten bad lately… worse than you can imagine.  I really belong in the hospital, but unfortunately there really aren’t any local hospitals that I can go to.  I am way too complex for them, as they discharge me saying how they know I am sick and can’t help me.  I can’t believe how I live in New York, which is a state that has such amazing hospitals and yet these hospitals are not equipped to handle me.  Unfortunately it takes to traveling across the country to California or to Cleveland Clinic or to Mayo Clinic to get something accomplished.  We are looking into seeing a doctor possibly at Mass General, but that will be the closest we can get from home so far and that is still like at least 4 hours away.

In addition, we really can’t even afford to go to the hospital either or even to see a doctor.  I honestly never thought I would see the day that we were literally “flat broke.” My dad is literally walking around with $20 in his pocket, we haven’t paid the mortgage in months, and we can’t even afford gas in the car. We don’t have any money whatsoever.  I never thought this was ever going to happen.  That is why I am so glad that the fundraiser is tonight so that I can hopefully have money to pay for this treatment that I am getting this week and the upcoming treatment that I desperately need.  The debt from my medical expenses is just snowballing out of control.

I am really hoping that this fundraiser will go well tonight.  I really hope that you will all be able to attend.  I am a bit nervous because of the weather though.  It is very cold outside and in fact, it is going to be one of the coldest nights.  It is only supposed to be in the teens, and I really hope that it doesn’t cause people not to come out.  I am really afraid that between it being a weekday and people having work that day and on Friday, as well as with the weather, people may not show up.  But I am keeping my fingers crossed that I will still have a big turnout and things will go great.

I really hope that I will be able to come.  I know I won’t be able to stay the entire time, but I at least want to make an appearance.  Not only do I want to come to see everyone and thank everyone personally for what they are doing for me because I can’t tell them enough what it means to me and how much I appreciate it, but it is going to be one fun-filled night and really never have any “fun” in my life anymore.  The only thing that 3-letter word has in common with me anymore is the first letter.  However, I don’t know if it will be able to happen.

I don’t know if I am strong enough to be able to go to the event.  In addition, the nights are the worst for me.  I am the strongest in the morning and I get weaker and weaker as the day progresses.  In fact, by about 1 in the afternoon I am literally completely done with that I literally can’t even walk anymore.  That is why I need to have all my appointments in the morning if I were to have any.  I also take lots of medications during the night and it will affect my medication schedule if I should go to the event, which is something I don’t know if I could tolerate.  I am in so much pain as it is and so uncomfortable and I don’t know if I can afford to put off my medication a bit until I get home.

In addition, the weather is not great for me either. I am extremely hypersensitive and I can literally feel everything and anything.  This means that even the smallest touch or breeze can cause a pain so excruciating that it’s difficult even to comprehend let alone describe it.  Therefore, the coldness really does affect me majorly.  I also don’t have any insulation on me since I only weigh in the 60s, so the cold really goes right into me as well.  That is one of the reasons why I remain isolated in my house.  I can’t go out unless it is the perfect temperature, there is no wind, the sun isn’t so strong because it could burn me, it isn’t raining because the raindrops hurt, etc.  So between it being the nighttime and the nights being the worse time for me because I am in the most pain and I am the weakest, as well as because of putting off my medication, it really makes doesn’t go well with it being so cold outside too.

Also, we don’t know if I can come because we are scared that I am going to get sick.  As I don’t have an immune system and there really isn’t a bit of fat on me, I am very susceptible to getting sick in cold weather.  In fact, the doctors literally ban me from going out when the temperatures are so low because they are afraid that I am going to get sick.  I can’t afford to get sick because the slightest cold is like getting a major flu to me and can literally kill me.  So even though I would love to come, I don’t know if it is worth the risk.

I also have to be able to eat dinner because I have to keep my weight up. With the fundraiser occurring at night, it will make eating dinner virtually impossible because I can’t be at home eating dinner and then at the fundraiser at the same time. You know? I can’t really eat out of the house because there are only very few things that I can eat and I really get sick afterwards. It really stinks how I have to make sure that I eat, but if I lose any weight, it will be so detrimental and dangerous to me. As it is already, I am already having a lot of trouble keeping my weight on lately. I don’t know if it is because of the bleeding or what not, but I have been having trouble keeping my weight on, as I have lost some weight. When you weigh only in the 60s, you really can’t afford to lose an ounce. Some times I wonder what the point even in eating is because I end up throwing it up anyway, but the doctors and my parents still say that I “have to eat because something is staying down and giving me nourishment.” After all, the doctors have even said that I must be doing something right to have lasted this long… perhaps that could be it!

So I really don’t honestly know what to do because I know how much I want to go and how much I really need to eat as well. I would say that I would eat earlier so that it would make it possible to go, but with my medication schedule and everything… it really makes it impossible. My life is literally like living on a time schedule. Everything has a specific time of day and there is always something going on…whether it is eating, vomiting, taking meds, etc. It seems that whenever I finish something up, it is time for another thing.

So I guess I will have to see what happens later on today. I really hope that I will be able to come… even if it is just for a little bit.  If I don’t get to go though, I want everyone to know that I am so incredibly thankful for everything that they are doing for me.  They are truly my angels and none of this would be possible without you.  Thank you for trying to get me a second chance on life.

Before I go, I want to share a funny story with you.  My dad is the one who helps me at night get ready for bed and stays with me while I take my ketamine and until it kicks in.  Well, we just got a new bottle a little while ago and the pharmacist put it in a different kind of bottle than I normally receive it in.  When my dad showed me the bottle I was like “oh great” because that bottle gave us so many problems the last time we had it and we basically couldn’t use it at all.  So I thought for sure that I was in for the same thing this time again.

Well, I gave the ketamine to my dad to shake up and ‘prime’ that night because it was the first time being used.  I am so weak and I needed a big strong person to shake it up and make sure it was thoroughly mixed.  Plus, I needed it to be ‘primed’ so that it would be able to be squirted out since the ketamine that I take is compounded into a nasal spray.   Well after all was done, he gave it to me to use and guess what?  When I tried using it… nothing was coming out. I couldn’t understand why nothing was coming out when my dad said that it was “primed,” which meant that something had to be coming out when he did prime it.  Then I realized that it was leaking too just like the other one did and I was like “here we go again… it is leaking and unusable just like the other one!”  I then took a tissue to wipe it down and guess what?  It turns out that there was a cap on the top of the bottle the whole entire time.  So that was the reason why I couldn’t get any this time and why it was leaking.  The cap was so small that I couldn’t tell there was even one on the bottle.  Now I know why very same bottle that the pharmacist gave me last time didn’t work either.  I didn’t know it had a cap on it. Stupid me.  But I still don’t know how my dad ‘primed’ it and saw things squirt out of it if there was a cap on it.  He probably just thought he saw something come out because he heard it.  Only my dad!!  So I can’t believe all this time I was complaining about the other bottle that didn’t work, it probably did but I didn’t know it had a cap!  Once I realized that this bottle had a cap and I took it off, this bottle actually worked better than the other.

Well… I guess that will be all for now.  Thanks again for all your continued support and encouragement. Please don’t forget that bracelets are still available and can be purchased by contacting me through Facebook or by emailing Femirsky@gmail.com.  Bracelets come in blue or pink and say “Help Fallon Fight!”  They cost $5 and all money goes towards my medical expenses!

Well… hope to see you all tonight.  Remember, any questions about the fundraiser event at the Melrose Ballroom, please contact Maria Tsikos Messados at mmessados@qmbrokerage.com.  So please come and spread the word!  Every $1 makes a difference because it is one less dollar that we have to come up with!

Love,

Fallon

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February 23, 2014

photo 1 (5)Hi!

I know I already written a few days ago, but I just wanted to alert you to the publication of an article that I was featured in.  It is in the QUEENS COURIER and can be found at http://queenscourier.com/2014/astoria-fundraiser-to-help-woman-get-life-saving-treatment/.  Although there are quite a few errors in the article, it was nice to see an article published.  I was also glad that the article was published because it notified the public of the fundraiser that will be held this Thursday, February 27th at the Melrose Ballroom.  I am only hoping that this “Winter Vortex” gives us a break and it gives me some “nice” weather for the fundraiser.  I know people don’t really like to come out when it is cold and especially in a snowstorm, so I am hoping that it won’t keep people away.  I know that they are talking about another snowstorm possibly Wednesday, but I am hoping it won’t interfere.  Plus even if it snows… this will be a nice escape of it, as it will be a fulfilled night full of entertainment, drinks, auctions, raffles, etc.

However, since there are some mistakes in the article, I would like to clarify some of it so that everyone is on the same page.  First, the article stated that the fundraiser is being held to “raise money to pay for a Ketamine coma treatment and multivisceral organ transplant in May in Mexico.”   The fundraiser is actually being held is to raise funds for all my medical expenses in general, as my illness is extremely expensive and funds are desperately needed to needed to continue treatments and pay for medications.  I need various treatments and medications, which includes a radical ketamine coma and radical multivisceral organ transplant, but only the ketamine coma will be taking place in May in Mexico.  We are hoping that we can possibly avoid having to go for the transplant by having the Ketamine Coma, as it is quite possible for this Ketamine Coma to actually help my organs as well and turn them around as well.

My organs are completely shutting down, I cannot eat,  and I also suffer from severe Gastroparesis.  I desperately need a new stomach, small and large intestine, pancreas, and liver.  However, it is quite possible and hopeful that the ketamine coma in Mexico will be able to reverse the Gastroparesis and help my organs to function again, as it is partially a resultant to the autonomic dysfunction & my rare neurological illness known as Reflex Sympathetic Dystrophy.  The hope is that with the ketamine coma reversing the autonomic dysfunction and the Reflex Sympathetic dystrophy, it will also reverse the Gastroparesis as well.  However, there is no guarantee, but that is the goal and that is what we are hoping for.  If that does not occur, then other means will have to be made to have the organ transplant.

photo 3 (3)Yet, in any aspect, I still need treatment in the United States as I await the Ketamine Coma in Mexico. Even though the Ketamine Coma is one of my very last options and possibilities to help me, I still need to have procedures to help me “buy” time until that is done.  I need very expensive medication and procedures that are not all covered by the Health Insurance and I also have to continue to seek the expertise of my doctors, which are not local.  I can’t even afford the very medications such as ketamine and others that I need at home in order to help me deal with all the pain and suffering.  This is the most painful disease that is imaginable and to be quite honest, it is the most painful disease known to medicine.  It ranks higher than childbirth, amputation, etc. and I never get a moments relief from it.  It has even been stated, “If Hell was a medical condition, it would be known as my illness.”  I live in this Hell 24/7 and I never get a break from my suffering.  I depend on  many medications and procedures/treatments to help with the suffering and pain and it is very important that I get them because any bit of relief (no matter how small when you are suffering as much as I am) is worth it.  However, without the funds, it has been impossible to get the necessary medication I need to even give me any sense of relief at home from this illness.

We desperately need as much help as possible.  The medical treatments that I need are taking a huge financial toll on my family and we are basically flat broke.  I guess that is the easiest way to just say it.  We have been fighting this illness for so long that the money has to run out sooner or later.  We have gone through all our savings and sold whatever we could.  My dad owns a business and when he travels with me, the company also suffers because he can’t work and no money can be made.  We barely have enough money to even pay for the mortgage, which hasn’t been paid in about 3 months.  Even putting food on the table is difficult.  Never did I think that we would ever have trouble going food shopping and paying for food.  However, the weeks that my parents are able to afford to put food on the table, I feel extremely lucky.  We couldn’t even celebrate the holidays such as Thanksgiving or Chanukah or Christmas because of our financial crisis.  We are such in financial debt and it is snowballing out of proportion.

I know that the article stated that the medical treatments have “taken a financial toll on her family, leaving them with only enough to pay for a mortgage and food,” but it actually has done far more than that! It has taken such a huge toll on my family both financially and emotionally.  Thank goodness I have such amazing parents… especially my dad. I can never thank them enough for all that they have done because not only have they given up all their life savings, but they are working harder than ever in order to try to make ends meet even though it is a losing battle.  My parents have given up their lives to me when they should be at the point when they should be actually having the “time of their lives”.  Instead of going on trips, going out to dinner, socializing, etc., my parents get up early to work (6 days a week for my mom that has MS and 7 days for my dad) and they then remain in the house to take care of me.  All money goes towards my illness, so they don’t even have any money to buy new clothes or anything that they might want.  My dad continues to be unconditionally devoted to my full recovery, traveling this road by my side and will not rest until that goal is accomplished and I am on my feet again. They also have had the job of keeping my hopes alive and not allowing me to give up.  Thank you mom and dad for never allowing me to lose my faith even though there doesn’t always seem to be a light at the end of the tunnel.

Yet, I only weigh in the 60s and my organs and body are shutting down. I am getting sicker and sicker, and I desperately need help. I am rapidly deteriorating and unless I seek treatment and “buy” time while we await the Ketamine coma, which I definitely can’t have until I raise enough money, I don’t even know if I will make it to be able to have the Coma.  We definitely have very extensive medical expenses to still pay for besides the trip and treatment to Mexico and without the help of others, the trip to Mexico might not even be a possibility, as I won’t be able to even be strong enough or capable to make the journey to Mexico to receive the much needed Ketamine Coma.

Secondly, the article stated, “The treatment, which costs at least $10,000, would be a medically induced coma in hopes of restarting her central nervous system and replacing her entire digestive system.”  As stated before, the ketamine coma will not deal with replacing my entire digestive system, but it will just deal with restarting my central nervous system.  The Ketamine Coma is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.  I will be the 38th patient to undergo this procedure.  During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. In fact, the body is basically kept alive on machines and ventilators.

The cost of the Ketamine Coma alone will end up costing us at least $100,000.  I am known to be the “worst” case that has ever been seen and will undergo the transplant.  For a normal case, it usually costs about $100,000.  However, in a case like mine where anything is possible because I have so many risks, I need to have much more money available because more than likely we will need it because we will have to have additional problems that the ‘normal’ patient wouldn’t have.  Since I am considered high risk, it is quite possible that I will have to be in the Coma longer than the normal person, have many more interventions, and be down in Mexico much longer than expected.  Therefore, I need to have the funds available to pay for this.  Cases that were similar to mine but not as bad ended up costing close to a million dollars.  The one case that was almost identical to me ended up actually costing nearly a million dollars and the family had to literally fundraise and constantly send money to Mexico in order to provide the necessary treatment for her.  Instead of staying the usual expected amount, she had to have 2 ketamine comas while she was in Mexico and had to stay about 2 years in Mexico because of complications that arose.  So we have to be prepared just in case we run into the same problems, as the doctors are expecting many complications due to my extreme condition and how I am such at such a high-risk candidate because of how sick I am.

As stated before, the ketamine coma does not entail receiving the multivisceral transplant, which is considered the most dangerous transplant to have.  It entails replacing my entire digestive system (stomach, small and large intestine, pancreas and liver).  This transplant will be done at a different time and in the United States (at one of the 6 hospitals that do it).  However, it will also be extremely expensive because not only will we have to worry about the cost of the actual surgery, but we will also have to worry about the anti-rejection drugs (can cost over $1000 a month and not covered on insurance) afterwards.  In addition, as there are only 6 hospitals in the country that perform this very radical and dangerous transplant, it will force us to relocate for awhile (at least 6 months).  But I first have to worry about undergoing the Ketamine Coma, which will reset my central nervous system and can potentially actually reverse the Gastroparesis and avoid me having to go for this transplant.  So I am not going to have to worry about this multivisceral transplant because hopefully I will be able to have the Ketamine Coma and it will take care of everything like we are hoping and praying for .  As my mom once said to me, “Do not worry until I say so!”

So I just wanted to clarify the article so everyone is familiar with the actual and TRUE story.  I hope that everyone will be able to attend the event, as it will be a great night at the Melrose Ballroom. I desperately need your help and all the help I can get because without it, I will die.  I am rapidly deteriorating and to be quite frank and honest… I don’t have time on my side.  I desperately need time, medications, and to see doctors, but we can’t afford all my medical needs alone.  We need help.  So please come and spread the word!  It will be Thursday, February 27th at the Melrose Ballroom, which is located at 36-08 33rd Street, Astoria.  It begins at 7 PM and will last until 10 PM.  It will include entertainment, drinks, raffles, an auction and raffle prizes.  Any questions, please contact mmessados@qmbrokerage.com.

Youth or adult bracelets, in pink or blue, are also being sold to raise money.  Not only will they be sold during the event, but also they can be purchased by contacting Femirsky@gmail.com.  The bracelets, which state “Help Fallon Fight”, are $5, and all money goes towards the medical expenses for me.

A friend once told me, “Where there is life- there is hope!”  So I am hoping that in the end, I will be ‘cured’ and able to live a long and healthy life.  I really don’t want to die, as I have so much to live for.  I want to be able to beat this illness and be able to regain the life that was robbed from me.  I want to be able to be able to become that doctor that I always dreamed of and be able to help others just like me.

Thanks again for all your support and encouragement. I am so thankful for all of the amazing people who continue to take this journey with me.  I just want you all to know that your love, support and prayers mean the world to me!  It definitely has not been easy, but knowing that I have your support makes me stronger and able to fight this illness better.  Thank you for all your kind donations because even the littlest amount (even 1 dollar) makes a HUGE difference, as that is one less dollar that we have to worry about!

Love,

Fallon

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February 21, 2014

1899702_10101059590434260_1901043955_oHey!

Wow do I have a lot of news to share because so much has been happening.  Sometimes I think I am living in a soap opera because there is always something happening.  At least I can’t say my life is ever “boring” because there is always something occurring! 

I guess I will begin with the biggest announcement!  A special fundraiser is being held for me at the Melrose Ballroom, and I would love for you all to attend.  It is very important for as many people to come because I am scheduled to undergo an intense treatment called a Ketamine Coma in Mexico on May 1st.  This is my last option and will only be able to get it with the help of others, as it will cost over $100,000. 

 In addition, I am suffering immensely and need dire medical treatment even within the United States such as medications, the ability to see doctors (especially since they aren’t local), procedures, etc. I have really been deteriorating and unfortunately we are having difficulty getting the medical treatment that I even need within the United States because my treatment is extremely expensive and we no longer have the funds to pay for it.  I have been sick for awhile and unfortunately, money can last only for so long and as a result, my family no longer has the financial means to pay for my medical expenses. I need to see so many doctors, have procedures, pay for medications, etc. and unfortunately they are not all covered by my health insurance.  It is bad enough to suffer from all that I am going through because of the pain and everything. But knowing that there are things to help relieve some of my suffering such as medication (especially my ketamine that we can’t afford), it makes it so much worse.  My treatment has really been at a standstill because we cannot afford any of it and in the meantime I am worsening and really deteriorating.  The doctors have even claimed that “time is not on my side.”  I desperately need help and help soon because my body is literally shutting down. 

We are in such financial debt and to be quite honest… it has snowballed out of control.  We have no money for anything, as we are even having difficulty paying the mortgage and even putting food on the table.  I never thought that I would be in the state where I would be considering myself “lucky” on the weeks that my mom is able to afford to go food shopping.   I never ever thought I was going to have to worry about having food on the table, but unfortunately there just isn’t any money for anything anymore. 

 Please come and show your support on February 27th at the Melrose Ballroom (36-08 33rd Street, Astoria) at 7 PM. It will be a great night that is full of entertainment and drinks. This fundraiser is being held so that I can hopefully be able to receive the very much needed money that I need to undergo the Ketamine Coma in Mexico, as well as to help with my current medical expenses so I don’t continue to downfall.  I would love for you all to attend! Please spread the word!  Any questions, feel free to contact Maria Tsikos Messados at (347) 642-1085 or (718) 849-9292.

In the meantime, my body is continuing to suffer and I am continuing to go downhill.  I suffer 24 hours a day and never can catch a break.  I am not watching my body deteriorate and shut down, as well as my life slip right away from me.    

I had to undergo another procedure this week because of the osteonecrosis and due to an infection spreading. Osteonecrosis occurs when the jaw bone is exposed and begins to starve from a lack of blood. The bone begins to weaken and die, which usually, but not always, causes pain.  Not only is the jaw hurting me, but the actual nerves that protrude from the teeth are killing me in the mouth as well.  The doctors ideally would like to remove the bones and teeth that are affected, but in a case like me, it would not be the smartest option because I would never heal since I have been on bisphosphonates.  Therefore, they are doing whatever they can to “save” everything. 

Yet, the infection continues to remain there and I am in severe pain despite all the procedures that they have done, which includes removing nerves and trying to treat the infection directly because antibiotics won’t work.  I am taking too many antibiotics that I am basically resistant. So we are currently taking one day at a time and seeing where this will lead.  Hopefully I will not have to have any removals or extractions, but who knows?  The doctor has been calling everyday to check up on me and to see how I am feeling, as I am in enormous pain. I can’t open and close my jaw nor can I bite. I am on huge pain anti-inflammatories besides my other pain meds. 

Speaking about the osteonecrosis, we are in a huge dilemma because I desperately need something to be done for my bones, as they are extremely weak and the doctors are afraid of me getting a life-threatening fracture.  Up to 1 out of every 2 women over 50 will break a bone (such as wrist, spine or hip) due to osteoporosis in their lifetime. Each year, about 250,000 will break a hip due to osteoporosis. Of these, up to 24% will die, and less than 25% regain full function. Vertebral (spine) fractures, which occur twice as often as hip fractures, also cause back pain and increased mortality. 

However, there are drugs to help such as bisphosphonates and Prolia.  IV bisphosphonates and Prolia have been shown to prevent 50-70% of vertebral fractures and 40-50% of hip fractures.  Yet, these drugs will also put me at risk for more osteonecrosis, which I am already suffering from and as a result, the doctors are really hesitant to continue giving them to me even though I desperately need them.  Even though my doctors, especially my doctors who are giving me the radical Ketamine Coma in Mexico, really want me on the medications to strengthen my bones and say it is a necessity, the doctor who prescribes it and gives it to me is hesitant to do so.  He doesn’t want the liability of the osteonecrosis and as a result, he is leery about putting me on it.  So, we are really in a huge problem because we need him in order to get it.  Yet, it has ben determined from various physicians and even from the American College of Rheumatology that given the risk of osteoporotic fracture, and the low risk of ONJ associated with potent anti-resorptive therapy use, the benefit of preventing osteoporotic fracture clearly far exceeds the risk of Osteonecrosis.

I am now also suffering from extreme hypoglycemia.  Recent bloodworm has not only showed that I am suffering from abnormal and severely low glucose levels.  Whereas a glucose level should never go below 70 mg/dl, my glucose levels have been in the 40s. It is very dangerous because not only do I have an inadequate supply of glucose to the brain, it causes seizures, unconsciousness, brain damage, or even death.

So the doctors are extremely concerned about this because there really isn’t an “easy” and “quick” fix.  I mean they said that I should always have like juice or hard candies on hand in case I have symptoms, but in someone like me because I can’t tolerate eating or drinking and I also don’t “absorb”, it really is not the answer.   Blood glucose can be raised to normal within minutes by taking (or receiving) 10-20 grams.  But if you can’t eat or absorb like me… I am kind of out of luck.   This hypoglycemia is a result of my extreme gastroparesis and how I am not absorbing anything anymore. I have also been bleeding a lot and producing a lot of mucous.  I have even lost some weight, which is definitely not good.  I have lost 5 pounds recently, which for someone who weighs only in the 60s is disastrous.  It is life-threatening to even lose an ounce at that weight!  Some of the weight is dehydration because of the fact I am bleeding and producing the mucous, but in any state… it isn’t good to lose even an ounce.

Therefore it is a necessity that I receive treatment immediately.  The doctors are thinking about putting in a central line to help “hold me over” until I get the treatment that I really do need such as the Ketamine coma or even the multivisceral transplant.  However they really don’t want to do this because it will stir up and exacerbate my illness.  In addition, central lines are very prone to infections and I can’t afford to get infections because the littlest infection is massive to me.

To make matters worse, I have also learned that my head doctor in Mexico has finally gone home from the hospital.  He had to have open-heart surgery valves replaced, as he suffered from Aortic Stenosis.  My head doctor is the hardest working doctor I have ever met in my life.  He works 7 days a week and all hours throughout the day and night.  In fact, he even gives out his cell number so that he doesn’t miss a call. He really cares for his patients, as he even goes out of his way to make sure his patients are the one is treated properly and is comfortable. Instead of making the patient come always to him, it is nothing for him to come and visit his patient.  In fact, the day I actually arrived in Mexico, he even met me at the Hotel to talk.  While we talked, he took every single call that came on his cell.  He really made sure that all of his patients get the BEST care.

So I am really glad to hear that he is finally home.  However, I know that he is still in need to recover.  I know that there are other members on my team to take care of me in Mexico, but I really hope that Dr. Cantu gets better as quick as possible so that he can take over again.  I know when he is around that nothing can go wrong.  I know that May 1st is right around the corner, but I also know how strong Dr. Cantu is.  I know that he will be healed and back on his feet and available to be back on my case in no time! 

In the meantime, I am still trying to keep my spirits up.  I am trying to keep my brain functioning and keeping my brain working as much as possible. I made it my business to finish a book finally, which I haven’t been able to do in such a long time because of my illness.  It has really gotten difficult to concentrate and to retain anything that I read.  It is really hard watching this because I used to have such a great photographic memory.  Even though I still enjoy the same authors and the books, I just don’t get the same pleasure as I once did.  However, I am determined to finish this book. So I am almost done reading James Patterson’s book called “Cross My Heart!”

2014_RDD_widgetRare Disease Day is also approaching!  I think it is so fitting for the fundraiser to be taking place on February 27th because the very next day, February 28th, is known as Rare Disease Day.  In the U.S., any disease affecting fewer than 200,000 people is considered rare. 

In the meantime, I just gotta hang in there til I hopefully get to Mexico.  Bracelets are also being sold to support me.  They not only are to raise awareness to all these mysterious diseases, but also to help pay for medical expenses.  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!!

Thanks again for all your continued support. 

Love,
Fallon

1 Comment »

February 11, 2014

1780227_10101053497160230_643864463_oHi!

I just wanted to write a little to update on all that has been happening since some stuff has been happening.  I am really not doing well and honestly, I am trying my best to hang in there… but it is really difficult.  It seems like we keep getting hit with bumps in the road and they are getting harder and harder to get over them. But hopefully with the help of friends, family, and supporters, I will still be able to surpass all that has been happening and be able to go on to have that Ketamine Coma in May, which is the ultimate goal.

I have really been weakening lately.  I know I have been weakening for a while, but it is basically at the point where I am feeling so weak that I can’t do anything.  My lungs feel so tired and weak to breathe, my intestines feel to weak to move and go to the bathroom, my body feels to tired and weak to get off the couch, etc.  I can barely even go up the stairs anymore or even get off the couch. In fact, even talking basically exhausts me.  When I go to have procedures, I can’t even fight the pain anymore by screaming and crying.  Instead, I just lie there and endure whatever the doctors do to me and cry silently to myself because I just can’t fight back anymore.  I am really losing my strength.

1614310_10101055164563740_1860126581_o 1076944_10101055058675940_1661750746_oMy health is deteriorating so much that all I can do is just lay around.  Thank goodness I have my pets, as  they have been keeping me company and helping me stay in good spirits.  They make the best of friends because they never leave you… no matter how bad it gets.

I really need to get treatment… especially get to Mexico before it is too late because my body is just shutting down and getting weaker and weaker.  I already need a multivisceral transplant, which includes a new stomach, small and large intestine, liver, and pancreas.  I have severe gastroparesis because of everything going on and basically my entire GI system is essentially “dead”!  However, it has gotten to the point that even though I need this very rare and risky transplant, which only 6 hospitals in the United States do, I have really gotten to the point where I am too sick to undergo the transplant.  If I should undergo it, I will most likely die because it is the most difficult transplant to undergo and I also would never be able to survive the drugs that are needed to take after a transplant.  After all, I have not only weakened, but I also have dwindled in weight to the low 60s.  That is why they are hoping also that I get this Ketamine Coma in Mexico, as they say that it would be committing suicide if I would have the transplant now.  They are hoping that this Ketamine Coma will be able to prevent be for having to go for this transplant because it should help my GI system as well.  It could be the “answer” to everything.

In the meantime, I still need treatment in the interim within the United States. However, all treatment that I need to help me is not local and therefore, I desperately need help in being able to see the doctors and go for the various treatments.  As things are continuing to worsen, we can’t just be dependent on the doctor in Mexico.  I have a whole team of doctors, but unfortunately they aren’t local. I desperately need help with my Gastroparesis to hold me over until we make it to Mexico. We are looking to go to Cleveland Clinic and Mass General.  But of course it is dependent on fund availability.  I hate how my life revolves around money.  I feel like I a never going to get well because we are never going to get enough money to get me well.

If I could have one wish… it would be to have my health.  People don’t realize that if you have your health that you have everything.  I really wish I had my health because then we wouldn’t have all these financial problems. My family has gotten into such severe financial debt because of my health problems, and I really wish I could change it.  They certainly did nothing to deserve this. Things have gotten so bad that we haven’t been able to pay the mortgage for 3 months, we can barely put food on the table, and I can’t even get the medical treatment or the medications that I need to save my life.  No one appreciates their health as much as they could, but trust me… as long as you have your health… you have everything because it can take everything from you.  My health not only wiped my life from me, which included being able to walk, eat, have FUN, have a social life, be a doctor, etc. but it also drained us of all money and basically is now making us live in fear of not knowing what is going to happen because we can’t afford literally anything… not even the mortgage or food.  I never thought I would ever say that because those were two things I always took for granted.

Speaking of health, my health has really been spiraling downwards.  I have been having severe osteonecrosis for a while.  I have also been having severe jaw pain for a while too.  However, every time I told the doctors that it was getting worse, no one could figure out exactly what was happening except for the fact that they saw the osteonecrosis and the nerves exposed.  However, little did they know that I had an active infection stewing.

As I am extremely hypersensitive, I can feel everything.  I can feel the slightest pain or the slightest sensation that a normal person can’t feel.  Therefore, I can feel so many things that many doctors can’t really see or pinpoint as a problem.  I can’t really blame them for it because it isn’t like they have microscopic vision.  However, it sucks because I can feel things happening before they become “major” problems.  If I tell you something is there or that something is “happening,” you can bet your dollar that it is really there or happening.

Anyway… like I said before I have been having this horrible osteonecrosis pain for a while that the doctors were just attributing to the osteonecrosis and the exposed nerves.  However, it got to the point that I barely could close my mouth or bite because my entire jaw and teeth would hurt like crazy.  Even the slightest ‘knock’ would send the most excruciating pain.  I knew that there had to be something else going on and therefore, we went to the doctor today.

When we went to the doctor today…sure enough we found out that my worst nightmare was true.  There was definitely something going on and surgery was needed.  I needed to have something done, but there wasn’t a clear-cut answer.  I had a very active infection going on and I also had nerves that were clearly inflamed going into the teeth.  So in addition to the osteonecrosis now, I also needed root canal because it traveled.  In a normal person, the bone and teeth should have come out because there really wasn’t enough bone there to support it.  However, in my condition and with me having osteonecrosis, we didn’t know if that was the right answer because it could result in me not healing because we are dealing with ‘bone.’  Since my bone structure is extremely poor and I have taken the bisphosphonates for years to strengthen my bones and I have the Osteonecrosis, all bets were off as to what would happen if we would remove more bone and teeth.  It really could quite make the osteonecrosis worse and it could make me not heal.  It could also spread the infection as well.  All this stuff could prevent me from having the Coma take place in May.

We really didn’t know what to do because in reality… we should have taken it out.  But like I said, I am not a normal person.  Plus, I really didn’t want to have no bone or no teeth because I wouldn’t be able to be like a normal person and get implants.  Instead, I would be left with a space or the possibility of MAYBE getting a bridge, but even a bridge was a big MAYBE and that could also cause problems.  I really didn’t want to have nothing there because not only how would I chew and eat, but I am ugly enough.  I already look like a Jack O’Lantern because of my bone structure and teeth; I don’t want my smile and mouth to look worse.  I am already self-conscious about my face, as I hate the bones protruding and how there isn’t any fat or muscle tone left.  That is why I have to airbrush every single picture I put up on the Internet because otherwise I look like some kind of monster.  I just look horrendous.

1656129_369609749846083_579223510_nTo tell you the truth, I already feel like a hideous and horrendous looking monster. I used to be a pretty girl in grade school when I was younger.  Yet, when I was robbed of a life that entailed being able to grow up as I should have had and had a husband and family.   I was robbed of being able to have my beauty stay with me.  Instead, I turned from a pretty girl into a creature.  I am just like a Stegosaurus, as I am so thin and emaciated that my spine literally looks like I have spikes going down my back like the dinosaur has.  My face has no muscle tone and therefore, all you can see is the bones protruding and the skin sagging on the bones.  I have wrinkles all around the mouth from no muscle tone as well.  In addition, I change colors like a chameleon and therefore, I try to remain as covered up as possible in order not to scare anyone away.  In a split second I can go from perfect coloration to a whole different array of colors such as purple, blue, black or to any other wonderful color.  My left leg is the worst, but my whole body is capable of changing colors because of the stupid neurological disease and autonomic dysfunction, as it is known to cause vasomotor changes.

I know that the appearance of the colors should be the least of the problems because the doctors are more fearful of me losing my legs and such because the discoloration means ‘lack of circulation’ and they know that especially my left leg and foot has no circulation going there because it is mostly black and never goes back to normal coloration anymore.  They are fearful of my limbs going gangrene and for amputation, especially of my left leg and foot.  In fact, they said that even if I do get better… they still don’t know what is going to happen with my left foot because the tissue has been deprived of oxygen for so long and has most likely suffered too much.  But, I am still staying hopeful that everything will be OK in the end.

upd_1328160611-88 copyTo tell you the truth, my dad and I was watching “The Bachelor” tonight and he was like, “You should apply!” I told my dad that I couldn’t apply because I would never get on.  I mean… lets be totally frank… I am no way as pretty as those girls on the show.  I don’t think anyone would ever be interested in me.  I want to get better so well so I can feel ‘beautiful’ again!

So it wasn’t a very easy decision because we didn’t know how I would heal, I didn’t want to look worse than I already looked because I especially wouldn’t be able to get implants, etc.  So the doctor ended up calling the hospital and having a meeting with my other docs to see what they would do and obviously there was no clear-cut answer.  It was essentially up to me.  We could “try” to save some of the bone and teeth, but in the end it might be inevitable that they would have to remove everything.  Knowing how much I didn’t want to look uglier and how much I didn’t want to lose anymore pieces of me, I told the doctor to do whatever he could to “save” my teeth and such.  So they ended up doing some osteonecrosis surgery and removing the roots and such.  Of course though this doctor couldn’t do the whole entire surgery though because it isn’t his specialty. Plus, what really needed to be done had to be done in the hospital because of my situation and everything.  I really had to be put under general anesthesia to have all this accomplished and have a special surgeon do the work.  But, this doctor did try to do all that he could to help make me as comfortable as possible, as well as to try to get the infection out because it was very dangerous to have the infection in me.

One big problem with the infection in me was that I am on so many medications already because of my other problems to fight the infection that was now occurring.  This is one of the big fears that the doctor in Mexico has because he is worried that I will get an infection in Mexico when I am in the Coma because I will have so many sources of infection from having all these lines put in me.  If I get an infection, I will not be able to fight it really because of all the current antibiotics that I am already on.  I am so resistant to antibiotics and to make matters worse… any little infection is something MAJOR to me.  So even this infection in my mouth was a major problem, especially when there was no medication to give me to combat it already since I am on so many already.  The only hope was when the doctor went into actually flush it out as best as he could with antibiotics that way.  But in terms of me taking antibiotics afterwards… that wasn’t going to look possible.

Since the actual surgery has to be done under “general” anesthesia, they gave me as much stuff as they could give me to kill the pain and take away all the ‘bad’ stuff that they were doing.  However, nothing is like being under ‘general’ because I feel literally everything.  However, like I said before… it has gotten to the point that I am so entirely weak that I couldn’t even scream or fight.  All I could do was cry silently and lay there because any bit of fight in me took just way too much energy for me to muster.

As I was enduring the procedure, all the doctor and nurses kept saying was “think about Mexico!”  I kept trying to think about having all this done so that I can be able to get my Coma in Mexico, but in the back of my head I was saying that I was never going to be able to have it because I will never be able to get enough money to do it.  I know how desperately I need this Coma, but I also know how they are not going to do this Coma if I don’t come up with the money and there is no way that I have over $100,000 to pay for it.  That is why I need as much help as I can from others… but I don’t know how on earth I am going to be able to raise that much.  I know that if everyone would just donate even a $1, it would surely add up, but most people aren’t like that.  People don’t realize that even $1 makes a difference, as it is 1 less dollar that we have to come up with.  Any donation is much appreciated!

After everything was done, I had a really bad reaction.  Not only was I in severe pain from all the work, but also it really exacerbated my illness.  I was in so much pain all throughout my body that I couldn’t even walk. I literally had to be carried out by the nurses in the doctor’s office.  I was so thankful that they were there to help and honestly quite surprised that they did such a thing. They even were kind enough to go home with my mom and me, as they helped to carry me into the house and get me situated.  I would have never made it home if it weren’t for them.  I was so thankful for them.  I can’t tell them enough how appreciative I was for all that they did.

But… I am nowhere near finished.  I am so sick now from the aftereffects of the surgery and work that was done today. The infection that was in the jaw and such is leaking out and all I can do is taste it.  I am also in excruciating pain from all the work that was done, as well as from it exacerbating my overall illness.  To think… I still have to go back for the MAJOR part.  At least though it will be done under “general” and I shouldn’t feel it.  However, the last time I had this surgery done… I ended up gaining like 8 pounds of fluid during the 6-hour operation and it really stirred up my illness and autonomic dysfunction.  It was HELL afterwards.  So… I am really not looking forward to having this all happen again.

I did speak to my team of doctors and they are extremely worried about all that is happening.  They are worried about the infection spreading and getting worse because my body can’t handle it.   They said this really needs to be taken care of ASAP.  My surgeon that is supposed to do the second part of the surgery will be on vacation next week, but if needed, I was told to go to Schneider’s Hospital if an emergency arises.  Never a dull moment when it comes to me.

I am having so many problems lately.  I just don’t know how much longer I can hang on.  Even my severe GI problems are getting worse.  I am having such a difficult time eating.  I can’t stand to eat basically anything.  Even a sucking candy makes me nauseous. I can’t even tolerate the ice pops that have my meds in them, which is basically a necessity that I have.  My weight is really going down.  I am also bleeding a lot and having a lot of mucous and therefore, I am dehydrating.  I can’t really drink because it makes the bloating and stomach pains worse.  I am losing weight.  Everytime I do try to eat or drink, I feel like these bubbles and this oozing in my intestines like something is ‘leaking.’  My stomach and intestines makes all these weird noises when you try to push things through them by manipulating them with your hands but yet, nothing moves because they are essentially “paralyzed.”

I spend the entire night in the bathroom because I am so bloated and I can’t go to the bathroom. I am in so much pain all the time that all I can do is cry.  Sometimes I just don’t even want to get up to the bathroom because it takes too much energy.  Yet, I am so bloated and everything that I keep feeling like I have to go.

The most that can happen is that mucous and blood will come out.  We all know that something is wrong and the doctors know it too.  Yet, they can’t even do a colonoscopy because I am so “blocked” with stool.  They have tried numerous times to do one, but they have all failed.  They can’t ‘clean’ me out enough in order to do the procedure.  They even have tried giving me NG tubes and pouring the mixture in like that, but it only ended up in having to be pulled out and being a failed attempt.  They would get less than a ¼ of a liter in and then the tube would back up and the mixture would come back up out of my nose.  So, it would have to be just yanked out.  No matter what they do, they just can’t clean out my intestines.

They know that something is going on though.  They know that besides the problem of my intestines being too “weak” to expel things, there is another problem going on because I am having all this mucous and blood coming out.  They also know from an x-ray that I have a blockage or a twist in my colon.   However, they aren’t sure exactly what is going on.  They just know that something is there and definitely needs to be taken care of.  They are talking about giving me a ‘colostomy bag’ but I really don’t want one. How much more are they going to do to me?  They want to put tubes in to feed me, colostomy bags to take stuff out, and tubes to relieve gas they are making me inhuman.  That is another reason why I need to get to Mexico because they are thinking that the Ketamine Coma can prevent all this from occurring.  They are thinking that the Ketamine Coma can potentially help all these issues.  I know it sounds unbelievable to be put into a Coma and to be helped in all this ways, but it can happen and has happened in the past.  During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.  The Ketamine Coma shows great promise as a treatment for severe RSD and the other problems that I have such as the Gastroparesis and Autonomic Dysfunction that go along with it.  However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition.

I just don’t know how much more that I can take.  I know that I need that Ketamine Coma though.  I am really hoping that it will happen.  There is a fundraiser being held at the MELROSE BALLROOM on February 27, 2014 at 7PM called “FFF NIGHT!” I would love for all you to attend! Please tell as many people as you can about this venue.  The location is 33-08 33rd Street, Astoria, New York 11106.  It is an entertainment venue, and there will be drinks and entertainment there.  Any questions, please contact Maria Messados at (347) 642-1085 or (718) 849-9292.

I have a ketamine infusion tomorrow, Wednesday.  I am really looking forward to it because I am suffering so much.  At least when I am under the ketamine for the day, it will be one day that I am out of pain and away from this illness.  I am stuck with this illness 24/7 and never get a break.  If I can stay in the ketamine coma all my life, I probably would be in heaven.  I just can’t take this illness anymore.  Ketamine infusions are like being on vacations for me.  Hopefully it will go ok, but it is really getting risky because of how badly my bloods are dropping and how I am deteriorating and worsening.  Yet, I desperately need this Ketamine, so it is worth the risks.  I will let you know how it goes, but knowing that my dad will be right by my side makes it easier because I know that he won’t let anything happen to me.

I have also been trying to keep my spirits up and trying to build up my lung strength. It is important to do so because the doctors are worried that I won’t be able to come off the ventilators when I undergo the big Ketamine Coma in Mexico.  It is already really difficult to just take a breath of air as it is, and I am also aspirating like crazy.  The doctors fear that when I go on the ventilators, my lungs will weaken further.  They are fearful that I will not only have to be in the Coma longer than supposed to and have difficulty coming off the ventilators, but that it will have to end up in me having to have a tracheotomy.   I am really fearful of that because I really don’t want one.  However, the doctors said that if that should have to happen, they don’t foresee it being permanent.  They said that when I get better and stronger, it would be able to be removed.  They said they will just need it to get me off the ventilators, but as I continue to improve and gain strength, it will be able to come out.  I still don’t want it and hoping that it won’t have to happen though.

So… we have been doing everything possible to try to prevent that.  I have a spirometer here to try to build up my lung strength and the doctor has me blowing up balloons.  I can barely blow my nose because I have no lung strength let alone a balloon.  But my dad bought me a whole entire pack of balloons and I am determined to be able to blow every single one up.

In addition, the doctors in Mexico are trying to get me off some of my opioids as they are making my lungs weaker as well.  Normally they would take me off the meds during the Coma and I wouldn’t really have to worry about the withdrawal or anything.  However, they want me off beforehand as much as possible so that I can have as much lung strength for the Coma.  My other doctors don’t know how they are going to do this because of how many drugs I am on and how I am on such high doses too.  I have been on them for so long that I am so dependent on them.  They said that if I were to stop any of them, I would go into severe seizures and possibly die.  So we don’t know what to do because we really need to try to stop them, but then again it is a huge risk of stopping them as well.  I really wish that I could just stop them when I am in the coma so that I don’t have to worry about all those withdrawal effects and everything because I wouldn’t technically feel them, but I understand how they want my lungs to be as “strong” as they can beforehand and how the opioids are also compromising my lung strength.  So I guess we will just take one thing at a time.

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I also had my birthday.  I didn’t do much to celebrate it because we didn’t have money, but my parents did try to make it as nice as can be.  They bought me some flowers and 2 balloons.  I really tried to cherish this birthday because I know how much I am deteriorating and I know how very realistic that this can be my last birthday.  So I took plenty pictures with my family as well.  I only hope that I will be around next year to celebrate my birthday again.  But, I know that for this too happen it will mean that I will need to have the treatment that I need to save my life such as the Ketamine Coma in Mexico.  So I am really crossing my fingers that I will be able to have it so I can see my 33rd birthday.  I already am planning the biggest birthday bash for next year because I will be “well” and therefore… it is going to be one HUGE party.  We are going to PARTY all night long and I am going to invite everyone and anyone to help celebrate. After all… it is because of all these people that I am able to see it and I am so grateful and appreciative for all the help that you and everyone has given me, as well as the support and encouragement you have given me too.

1799065_10101054037397590_1004682024_oWe did have a cake, but I just got to blow out the candles while I watched my family eat it at my expense.  I may have not gotten any gifts, but at least I got a cake and candles to blow out so that I can make my birthday wish.  I bet you can’t figure out what I wished for.  LOL.  I only hope that next year I will be able to enjoy the cake with my family instead of watching them eat it and enjoy it. My family also put candles on the cake not only to have me be able to make a wish and blow them out, but also as a way to “exercise” my lungs.  After all, the doctor wanted me to do breathing exercises to strengthen my lungs for the Coma in Mexico. So this was just one more way to do it, as well as a way to see how much strength my lungs did have.  Did it have enough energy to blow out all those candles in one breath?  Not quite.

1795185_10101054327960300_239428416_oI did receive a really special gift in the mail though from a special person.  I received an “angel” from a fellow patient that underwent the same exact coma that I am going to go through in Mexico.  I was not expecting it and she sent me this Angel with a very heartfelt message.  She said even wrote her favorite quote that she always says to me, which is “Where there is life there is hope,” and followed it with, “Don’t stop fighting and keep on smiling!”  I have the ANGEL sitting right by my bedside and plan on taking it with me whenever I go to the hospital or for a procedure.  You can bet your dollar that I will definitely be bringing it with me to Mexico  and hanging it on my IV pole!

We both have the same doctors and the doctors say that we are very comparable.  They have said, “Until they met me, they always thought that she has had the worse case.”  But we have so many similarities that our cases are nearly identical.  Knowing how bad her case was and that she is miraculously better gives me the hopes that I will be too after this Coma.  In fact, she is the patient that I have shown you on the YouTube videos undergoing the exact Ketamine Coma that I am undergoing.   She has been so supportive and helpful because not only is she a fellow patient, but she has been a terrific friend to talk to and help me through all this because she knows exactly what I am going through.  After all… no one really knows or can understand what I am going through until they live it.  I don’t wish this disease on my worst enemy.  It is HELL. RSD is the most painful disease known to medicine.

photo 3 (3)

Well… I guess I will be going.  Just want to remind you about the bracelets again. Remember… among the various fundraisers that will hopefully be taking place, we are selling bracelets to raise awareness as well as money for treatment.  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!

Thank you again for all your help, support, prayers, and encouragement.  I really appreciate all that you have done for me and continue to do.

Love,

Fallon

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February 6, 2014

1836755_10101049553902550_613537785_oHi!

It is another snowy and disgusting day outside.  I can’t stand this weather anymore.  I feel like we are living the real-life version of the Disney movie FROZEN.  Isn’t it weird how the year that this movie is released the weather is like this? But I shouldn’t be surprised in the weather because my birthday is tomorrow, February 7th, and it has always been known to snow during this time.  In fact, it has snowed every year that I was alive except for the year that I had my Sweet 16.  I was actually blessed with a nice beautiful and warm day for a surprise.

Even though my birthday is tomorrow, which is Friday, I am not really looking forward to it.  It will just be any ordinary day for me.  I can’t really do anything because of my illness to celebrate my special day.  My illness has forced me to remain isolated and separate from the world, as it stole whatever happiness I could have in life.  I can’t do anything for “fun” because of my illness and the only thing this 3-letter word and I have in common anymore is the first letter.

It is bad enough that I can’t go out to celebrate my birthday or do anything ‘special’ for it, but I can’t even have birthday cake.  Due to the inability to eat anything, I can’t even have birthday cake.  What’s a birthday when you can’t even have birthday cake?

I am not even expecting any birthday gifts.  We really are struggling financially and we weren’t even able to celebrate Thanksgiving or the holidays. I surely miss unwrapping gifts.  It really never mattered what was inside… I just loved unwrapping.  In fact, when I was little, I used to absolutely hate getting ‘money’ for my birthday even though it gave you the ability to buy whatever you wanted.  I didn’t like it because it came in an envelope and had nothing to unwrap.

But honestly I am not going to lie and say that I am don’t want anything for my birthday.  I do have some birthday wishes that I would love to happen.  One wish I would love to happen would be for me to of course get better.  Another wish I would love to happen would be to be able to go to Disneyworld or Atlantis with my family, as I would love to go on a nice relaxing and fun vacation with them because we haven’t been on vacation in like 10 years.  They have given up so much for me and I can’t thank them enough for it.  They literally gave up their lives, as we don’t do anything except sit in the house.  My parents should be at the point of their lives where they should be enjoying themselves.  However, instead of being able to go out to restaurants, shows, etc. they are stuck at home taking care of me.  They are working harder than ever and have nothing to show for it, as they have bills sky high and are in such financial debt because of me.  I only wish I could make it better for them and I also wish that I could enjoy whatever time I do have left with my family.  My third wish is that I get to have one big party when I am better for everyone that has helped me to get well because without their help, I would not be alive.   I really owe them my life!  I can’t wait for the day that my family gets to resume their lives and be more like a “normal” family.   I owe them more that words can say and in more ways than I can ever show them.  I am so grateful for all that they have done for me.   I would definitely not be here today if it wasn’t for them.

But I know those wishes are just wishes! I know that the chances of those happening are not really that great.  There is one wish though that I really would like and is more realistic.  As I sold basically everything in order to pay for treatment, which includes all my jewelry, I would like a “good luck”.  I always have wanted a necklace to bring me luck, but it isn’t so easy because of course it costs money and something we don’t of course have.  It is also expensive because I can only wear real 14K gold since I am allergic to everything else.  But I do have to say that Everytime I hear on TV about an athlete that wears a specific necklace for luck or a person who has a necklace for luck that they never take off… I always wish that I would have that one special necklace as well.  But I guess that is why they call them “wishes” because that is all that they are.  They don’t really come true.  Plus… it would never pay to get this necklace because it is a “material” item when it comes down to it and the money can be better used elsewhere.

1614362_10101046528735010_1037898131_oSo just as the holidays are spent alone and treated like any other day… so will be tomorrow when it is my birthday.  I will spend the day with my pets, which are my very true best friends.  If I didn’t have my cat and dog, I seriously wouldn’t know what I would do.  They really make the best companions.  They are the ones who actually get me through those long unbearable days and nights.  I am so fortunate to have such a great dog that stays with me throughout the day and a cat that babysits me at night.  Between the both of them, I am never alone!

I have been so thankful lately for all the new support and encouragement I have received from people.  I really can’t thank you all enough for all your help.  In fact, I have met some really truly wonderful people in the past few days that have really taken up the cause to helping me get well.  They are trying everything in their powers to get me the funds needed so that I will not die and instead… I will be able to receive the necessary treatments that I need in order to regain my life back.  They are trying everything in their powers to help me get the funds needed so that I can receive the radical Ketamine coma that I need in Mexico! I can never tell them enough how appreciative and thankful I am for all that they are doing.

These people have so many wonderful ideas to help me get the funds that I need.  They understand that unless I receive the funds, I will not be able to receive the lifesaving treatment needed and I will die.  They understand that this ketamine coma is also my last option really and the ONLY way for me to get it is really if I raise enough money. Therefore, whenever anything is planned, I will also post it on my website so that others will know about it.

1656129_369609749846083_579223510_nThe first fundraising even that is being held will be February 27th.   It is being called “F.F.F. NIGHT” and it is taking place at 7:00 PM at the Melrose Ballroom.  The location is 33-08 33rd Street, Astoria, New York 11106.  It is an entertainment venue, and there will be drinks and entertainment there.  Any questions, please contact Maria Messados at (347) 642-1085 or (718) 849-9292.   So hopefully this will be the start of many successful fundraisers so that I can receive the treatment that I need to get well and this time next year I will be able to be celebrating my birthday big time with having FUN and eating birthday cake and everything else that goes along with having a birthday bash!  Of course if I do get better… everyone will be invited!!

In the meantime… let me explain to you how I have been since the last time I wrote.  Things have not been too good as I am continuing to weaken.  My bloods are continue worsen.  My heart bloods continue to drop and to be honest… my heart can literally give out at anytime.  My organs are also shutting down.  I just hope that I make it long enough to get the treatment in Mexico.

I desperately need the Coma soon because I am getting weaker and weaker and if something isn’t done soon… I am going to die.  Even though I spend the bulk of my day on the couch and unable to move, I have still been trying my best to do as much as possible to keep up my strength because you know how the saying goes… “If you don’t use it, you will lose it.”  But it has been getting harder and harder.  I can barely go up and down the stairs anymore and even getting off the couch is getting to be impossible.   I am in such severe pain all the time all I can do is cry.  In fact, I feel so weak that it feels too exhausting to even do that.   My lungs feel so weak that sometimes it feels just to exhausting to take a single breath. My intestines are feeling the same way in the fact that I can’t push a single thing through… not even to go to the bathroom.  Therefore, the doctors are becoming very concerned because I am not eliminating the toxicities of the drugs or whatever I am taking in.  In addition, I am bloating worse than ever, which is causing me even more suffering.

I can’t afford to weaken because I need all my strength I could have when I have the Ketamine Coma.  As it is, I also really need a multivisceral transplant, which includes getting a transplant of the stomach, small and large intestine, pancreas, and liver.  However, I have gotten too weak and sick to undergo this transplant and now if I should proceed with that transplant now at this moment, it would be like committing suicide.  I am like in a catch-22 because I desperately need this transplant because my GI system is completely dead and yet, I have deteriorated to the point where I probably won’t survive the transplant.  We didn’t have the funds for the transplant to undergo it and therefore I weakened too much in order to have it.  I can’t afford to have the same thing happen with the Ketamine Coma because this is like my last hope and option of surviving.

I really need to get to Mexico because that is the only place I can receive the amount of ketamine that I need. I will be the 38th patient to undergo this Coma, and as of right now it is scheduled to take place on May 1st.  But of course it is all contingent on raising funds because if I don’t have the money to pay for it, I of course can’t go for it.

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.  However, Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

I really need to have this Coma in so that I can be able to live. Therefore, I need to be as strong as possible because this Ketamine Coma is not going to be ‘easy’ as one my think.  It is an extremely radical and risky procedure that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.  However, even though I will be the 38th patient to undergo the Coma, it has been miraculous for the others.

However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition.

In preparation for the Coma, the doctor has me trying to build up my lung strength.  The doctor has me planned to be on the machines for about 2 weeks. However, due to how severe my condition is and how weak my lungs are, the doctor doesn’t know if they will be able to get me off the ventilators at that time.  My lungs are extremely weak and when I go on the ventilators, they will weaken more.  In fact, it is very possible that I might need a tracheotomy, but I am not even thinking in that way because I really am petrified that it will happen.

Like I said before, my lungs are so very weak already and they are scared that they will even weak further during the time on the ventilators.  I am having a really hard time breathing lately between the problems with the aspirations and the strength of my lungs.  It feels as if at times I am too tired to even take a breath of air.  My lungs just don’t want to work anymore. It has gotten to the point where it is even too much to blow my nose or blow up a balloon or anything else that I might need to use my lungs for.  Therefore, in preparation of this Coma, the doctor is having me blow up balloons and use a spirometer so that I can hopefully build up some lung strength and it will also help me get off the ventilators.  So I have been working on that and hopefully it will make a difference because I really don’t want to end up with a tracheotomy.  The doctors did say though that if it did have to happen, it would hopefully be only temporary because as I recovered and got stronger, it would be able to be removed.

It is getting harder and harder to eat.  Even the little things that I was able to eat before such as the egg whites and medicated ice-pops are getting to be impossible to get down.  Nothing even tastes right anymore. It is a real battle to get anything in me and also to take my meds because I have to take over 50 pills daily and whereas it took a carbonated beverage to get the pills down before, it doesn’t even work nowadays.  Yet, I really need those pills and we have to find a way of getting them down.  In addition, I am really losing weight and only weighing in the 60s.  So it is extremely crucial that I keep my weight on and my nourishment up.  They can’t feed me intravenously or anything because the illness causes the IV lines to burn up my veins and wreak havoc on them.  So it is quite imperative that I receive this Ketamine coma as soon as possible because my body is just failing.

My memory is also worsening.  Once an A+ student and a student who remembered everything, I have trouble just remembering anything that I just read on a page.  Reflex Sympathetic Dystrophy is a complicated disorder of the nervous system. The effects of can be very extensive and cause changes in both physical and mental well-being. Although, it is typically recognized for affecting the sympathetic nervous system, research has connected RSD to various cognitive difficulties in patients, such as memory loss. It is common to suffer from memory and attention deficits as well as severe pain from the condition.

The memory loss is speculated to be a result of limbic system dysfunction, which is similar to what causes various other problems from the condition. Doctor Hooshang Hooshmand described it well: “The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called “limbic system”. This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain.” This causes many problems that might not initially be linked to a disease like RSD; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgment.  Another possible cause is from what doctors call maladaptive neuroplasticity. This can occur because the chronic pain accompanying the condition may distract a RSD patient’s mental resources. According to research, since a person’s brain always remains in a constant state of equilibrium the sensory perception of severe pain can prevent the brain from utilizing itself for more relevant activities needed for daily life. This effect will in turn cause memory loss.

I desperately need this Ketamine Coma as soon as possible. The days are getting so much longer lately because of all the pain and suffering.  I am suffering so much that at times I don’t even want to live anymore. So many nights I pray that I don’t wakeup in the morning because I am suffering so much. I honestly don’t know how much longer I can do this and hold on.  But deep down I know that I really am a ‘fighter’ and I really do want to live… I just don’t want to be suffering and living in pain like I currently am.  I still want to become the doctor I always had the ambition to be so that I can help others, as well as do so many other things.   I missed out on so many things because of this illness and I have yet to live my life.  So I am keeping my fingers crossed that all this will work out and I will be getting the Coma and the necessary lifesaving treatments soon.

Well… besides trying to just “hang in there” I have been trying to finish up reading the book called CROSS MY HEART, which is written by James Patterson.  I am so determined to finish this book, as this will be the first book I have finished reading in like 4-5 years.  I used to be such an avid reader with photographic memory.  However, this disease has taken that from me and I haven’t been able to read anything.  I haven’t been able to finish a book in quite some time, but I am determined to finish this one.  I am ¾ of the way through with the book, so I am hopefully going to finish it shortly.

In addition, I finally finished the album that I made of my trip to Mexico with my dad.  I custom made it online and it is going to be like a published book.  I not only put descriptions of what took place to serve memories, but I also put famous quotes in it as well.  I really wanted to get this done so that my dad and I will always have great memories of our trip together.  I really love making album books that look like real published books because this way it preserves the pictures better.  This way you don’t have to worry about losing pictures or having pictures falling out from actual albums, and you are able to also custom make it so that you can put quotes and writings in it to soughta tell the “story!”  I just think it makes a nicer and neater appearance of an album, as well as it will hopefully last longer.  I can’t wait to receive it!

The Olympics will beginning tomorrow, so it will be giving me something to watch on TV.  It is times like this that I remember the days when I used to be a competitive figure skater.  I would do anything to be able to skate again.  It was the best times of my life.  I used to compete and even did shows.  I even did shows at Rockefeller Center.  I had the same coaches as 2002 Olympic Gold Medalist Sarah Hughes.  Skating was one of my favorite things to do.  I would skate before and after school and even though it was a lot of hard work and early mornings, nothing compared to the feeling of being able to soar over the ice or jump through the air.  I also loved the smell of the ice the first thing in the morning, as it had one distinguished smell.  I really do miss skating so much and only wish that one day I will be able to skate again.  But in reality, I think that is one dream and wish that will never happen because even if I should get better, I don’t think that my body could tolerate it.  I think my body is way too weak to do it because of how fragile it is… especially my bones.  After all, the doctors are already scared that I am going to get a life threatening fracture as it is.  It will take years to get my bones and body strong again after I am “cured!” I would no way be able to afford a fall.  But I can hope and wish that I will be able to return back to the ice and in the meantime I have those wonderful memories to hold cherish.

1602107_10101039548822810_1814389083_oWell… I guess that is it for this update.  I will write again when I am another year older and another year wiser.  LOL. Thank you again for all your help, support, prayers, and encouragement.  I really appreciate all that you have done for me and continue to do. Remember… among the various fundraisers that will hopefully be taking place, we are selling bracelets to raise awareness as well as money for treatment.  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!

Thanks again for all your support.

Love,

Fallon

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