FALLON MIRSKY

Please help SAVE MY LIFE!

April 22, 2014

737125_734391376591211_5168618130208749911_oHi-

I just wanted to update on what has been happening because there has been an emergency that has occurred today.  We got extremely bad news today and to be honest… I am really in a whirlwind of everything going on that I don’t know how clear this update might be.  So please bear with me.  If you have any questions, please feel free to ask.

Today has been one interesting day. Thank goodness it is almost over.  I don’t think I can take anymore news today.  My plate literally has been filled to the max and I don’t think that I can add another thing to it at all.  It has come down to me being literally in a “life and death” emergency state right now.  Not only is my bloods extremely low and I can go into cardiac arrest at any moment, but my GI system is completely shot.  It turns out that I need emergency surgery on my GI system, but unfortunately the hospitals around here are not equipped to handle my situation.  I don’t know what is going to happen, but I do know that I am not supposed to have any stress because of how bad my bloods are and it can easily affect my heart and cause an arrhythmia or cardiac arrest, but that doesn’t look like it’s going to happen.

I went to the gastroenterologist today to start my day off.  I saw him first thing this morning and was placed on a new medication called Linzess.  It just came out on the market and even though it isn’t expressly used for my illness, we are hoping that it will help with the Gastroparesis and my GI system.  The doctor doesn’t have any other patients on this medication with my problem of course, so I will be the first.  The doctor is planning on putting me as a “case study” and if it is successful, he plans on writing me up in the journals and this way I can hopefully help others.

However, even though it does sound hopeful that it might be able to help me, there is of course a problem because nothing in my life comes easily and without a problem.  Like always there is always a problem with this situation and the problem with this is that it is a very expensive medication and we are not covered by insurance.  So I don’t know what I am going to do because I really want to try it.  Even though this new medication will not “cure” me or anything because it is not going  to the underlying problem, at least it is putting a bandaid on the problem and could HELP.  But the doctor did state that we really need to stop putting bandaids on the problem and get to the underlying root of the problem because I am running out of time and I am getting significantly worse.  He said that I am rapidly deteriorating and have worsened significantly since the last time he has seen me.  He said that he is really extremely fearful for my life… especially since my bloods are so very low.  He said that I am basically a “walking miracle” right now to even be living because people normally don’t live in the state that I am being the weight that I am, BMI that I am, and having the low bloods that I have.  He said that I definitely can’t afford to go lower in any of them because I will definitely die.  It would be a death sentence.

Therefore, the doctor said I really need to get to Mexico to get to the root of the problem ASAP.  But of course that is all dependent on that we receive the funds.  Unfortunately the Ketamine Coma that I need to have in Mexico isn’t cheap, as it costs over $100,000 and we cannot afford it alone.  Therefore, until I raise enough money, which I have been so desperately trying to do so… we cannot go.  We have a date set to go to Mexico to have the treatment in July, so we are hoping to have all the funds by then.  But of course it is all dependent on the rest of the world so I am really hoping that a “miracle” will take place and there will be plenty of donations.  My life literally rests in the hands of the rest of the world.  I just hope also that I make it to July because I am rapidly deteriorating.

When I went to the GI doctor, it was also determined that I have  to undergo another endoscopy.  The doctor doesn’t like how things are progressing and therefore, he wants to do another endoscopy as soon as possible to see what exactly is happening especially since I have been having difficulty swallowing.  Even the littlest things that I have been able to swallow in the past such as the ice pops, egg-whites, and ice-cream have been impossible to get down lately.  So the doctor wants to see exactly what is going on.  We cannot do a colonoscopy because my GI tract is so horrendous that they can’t clean me out.  Even with an NG tube they can’t do anything to clean me out, as I had an NG tube and they had to remove it because after pouring in 1/4 liter of GO-LITELY… the tube started to back up and the mixture was back flowing out of my nose.  Nothing just seems to clean me out!  So an endoscopy is the next best thing especially when I am having difficulty swallowing.  The doctor also wants to see what is happening because since I am vomiting constantly, he wants to see what damage is occurring to the esophagus.  It’s just a mess.

So I am scheduled to have the Endoscopy on Friday, May 2nd.  The doctor wanted to have it done as soon as possible, but he had to be careful because of my low bloods.  He is hoping that my bloods can get up a bit beforehand.  But he also wanted to get it done before I leave for California, as we are planning on leaving May 13th. So everything is scheduled in the hospital for an endoscopy for that date.  However, now with the horrendous news that I received tonight… I don’t even know what is going to happen.

After leaving the doctor’s office, I proceeded to go to Mount Sinai Hospital to have a CT Angiogram.  It was so painful and I was literally screaming the entire time because the dye and the needle was really causing me so much pain.  Due to my illness, I am so hypersensitive that even saline solution in an IV causes me horrendous pain.  My dad said that he literally heard me screaming through the soundproof doors.  What a day I endured because not only did I suffer from the pain of the needles and infusion of the dye, but it also wreaked havoc on my body because it triggered off my illness further by stirring up the autonomic dysfunction.  The infusion made me burn up so badly and when your body can’t really adjust or acclimate to temperature changes, it really affects you.  The nurses kept asking me if I wanted ice to help with the burning and pain, but that would be the worst thing to do to me.  Little did I know though that things were only going to get worse from there.

We weren’t supposed to get the results to the angiogram until about 24 hours later.  At the earliest, it would be the end of the day that we were told that we “might” have heard something.  I was having the angiogram done because we wanted to see if we can further determine why the edema was occurring in my legs.  We didn’t know if it was because of a clot, my disease, proteins spilling out, etc.  However, we ended up hearing the results only about 4 hours later because there was a real emergency that needed urgent attention.  I never thought I would hear what I was going to hear.

When I got the phone call from the doctor that ordered the test, which was my vascular surgeon, I wasn’t expecting to hear the news that I was about to hear at all.  He told me that I needed to see a surgeon immediately and I needed to get to a hospital as soon as possible because they found something on the CT Angiogram that needed urgent attention.

The doctors told me that they found a severe case of a bowel obstruction that needed prompt and urgent attention.  However, this wasn’t just an ordinary bowel obstruction or a minor one.  In fact, the obstruction was so bad that my entire colon was dilated so much that it was amazing how much a colon can dilate.  It was also so dilated that it was compressing all my other organs and it even made the bladder collapse, which could be the reason why I always feel like I have to go to the bathroom. The results also showed that I had a complete obstruction in both the small and large intestines, and they also found a colocolic intussusception.

The vascular doc said that I needed to see a surgeon immediately because of this condition, but due to my circumstances and rare situation, he didn’t know best how to proceed and therefore, be wanted me to discuss everything with one of my GI doctors.  So I called my GI doctor and he finally called me back tonight to go over everything.  Little did I know what I was going to be in for.  This is really bad.

When I spoke to my GI doc, he told me how bad this blockage and obstruction really is.  He told me also how rare and how horrible the colocolic intussusception is as well, and he also said that it was urgent that this be taken care of because I can easily die from it.  I can easily go into Sepsis and I can easily die from it.  The problem is though that even though I need urgent surgery, there really isn’t a place to have the surgery because I need a hospital that is not only capable to do the surgery, but a hospital that is capable of dealing with my overall condition, as I will need ketamine around the clock and even be placed directly into a ketamine coma afterwards because otherwise my disease will surely become exacerbated and spread.  Unfortunately there really isn’t any local hospitals that can care for my overall situation in the area and the best places to really go is California or Mayo Clinic.  However, California is on the other side of the country and I need urgent attention now, and Mayo Clinic doesn’t take my insurance at all and we definitely wouldn’t be able to afford a huge surgery like this.

This is no little problem.  The doctor explained to me how life-threatening and how big of a deal this problem really is. He told me that my intestines are like a telescope.  You know how a telescope has each piece going inside one another?  Well, that is basically what my intestine is doing. It is the enfolding of one segment of the intestine within another. Intussusception occurs when part of the bowel or intestine is wrapped around itself producing a masslike object.  In other words, it is the infolding (telescoping) of one segment of the intestine within another.  When the segment of bowel telescopes into a more distal segment, it drags the associated mesentery, vessels, and nerves with it. This results in compression of the veins, followed by swelling of the region leading to obstruction and a subsequent decrease in blood flow to the affected part of the intestine. If the blood supply is greatly reduced, the involved intestine may swell, causing an obstruction, or even die (become gangrenous) and bleed. It also may rupture and lead to abdominal infection and shock.  Additionally, there may be perforation or hole in the intussusception bowel that can cause a life threatening infection in the peritoneum (a layer of tissue that protects the organs and intestines within the abdominal cavity).

The doctor said that I need this taken care of immediately, as treating intussusception by reduction (alleviating the source of blockage) is an urgent and  emergency procedure.  He said that my intestines really need to be detangled, taken out, and decompressed.  He said this is no “little” operation whatsoever.  He said that it is going to be one MAJOR operation and it needs to be done urgently.  Yet, we don’t know how best to proceed.  Therefore, after speaking to the doctor, he is going to speak to doctors, surgeons, etc., tomorrow in the hospital and we are going to have a meeting tomorrow afterwards to learn best how to proceed.  Time is definitely of the essence, but we can’t afford to jump the gun because it can easily be the wrong thing to do.

I knew something was wrong because things really took a turn for the worst lately.  I have been feel worse than ever lately and it has been literally impossible trying to go to the bathroom.  Even the nausea and vomiting has worsened.  Even the smell of the mucous that was being expelled has changed lately, as the mucous smelled because the doctors said that I was literally “rotting” inside. He said that since nothing was moving inside of me, whatever I was taking in and the littlest that remained in me and didn’t get vomited back up… whether it be meds or food… it was just “rotting” because it had no where else to go.

I knew that something like this was going to happen because we were wasting so much time.  The doctors kept saying that I was a “time bomb waiting to detonate.”  I guess they were definitely right.  I knew that we couldn’t wait  so long, but what choice did we have?  You can’t get blood from a stone and unfortunately we ran out of money to pay for the treatment that I need.  That is why we desperately need help through donations.  We need it because not only do we need help to pay for this current problem, but we need it to pay for my other medical expenses… especially that radical medical coma in Mexico before anything else happens or worsens.

So we are all freaking out in the meantime of what is happening because we don’t know what is going on.  All we know right now is that I need surgery immediately and my life is at stake, yet the hospitals around here are not really “equipped” to do the surgery because of my situation.  So I don’t’ know what is going to happen.  I guess we will find out tomorrow because the doctor is having that meeting with us after he discusses everything with other colleagues in the hospital.  This is a disaster.

So this is the newest thing to occur.  Of course I will let you know more when more info becomes available.  I just wanted to make you aware of what is happening in case something should happen or if I end up in the hospital or something because anything can happen at any moment.

In the meantime, I am scheduled for another ketamine coma/infusion for  Wednesday.  However, with everything happening now with my GI tract, I don’t know what is going to actually be taking place until the doctor speaks with us tomorrow.  Before all this was known about the colon and blockage, the plan was to go for the ketamine coma/infusion and it was hoped that I would be given medication through IV that would essentially raise my bloods hopefully.  In order to raise my bloods, the meds have to be given through an IV and it would be extremely painful to a regular and normal person …  let alone someone as hypersensitive as me.  So since it would be so much worse for me and I wouldn’t be able to tolerate it, they were hoping that I would be able to get it during the ketamine infusion so I wouldn’t be conscious and I wouldn’t feel it.  After all, something has to be done to raise my bloods because they are so critical as of now that I can literally die from cardiac arrest at any moment.

I want to also thank Jaime Shorten for starting a fundraiser that will hopefully raise money so that I can have it for my medical treatment and so I can hopefully be able to go to Mexico in July for the lifesaving Ketamine Coma that I desperately need.  Jaime is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online.  All orders can be placed online and shipped to Jaime for pick up or directly shipped to you. The website is SAFE and SECURE and your credit card will not be charged until the show is finalized and all the orders are submitted together, which will be May 5th, 2014.  If you have any friends whom you think would enjoy this event, please invite them to this party as well!! The more, the merrier! In addition, each day pictures of products and recipes for you to enjoy will be posted! Here is how to order… just click this link: http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467.  If you have any questions, all of Jaime’s info can be found on that website as well. Please share this site on Facebook at: https://www.facebook.com/events/387964561341529/   Once you join this party…PLEASE invite ALL of your Facebook friends and have them join!! We want this party to be HUGE so we can raise as much money as possible!   Remember… the Facebook link is “Hope for Fallon” or https://www.facebook.com/events/387964561341529/.

Thanks again for all your continued support.

Love,

Fallon

 

Leave a comment »

April 19, 2014

Hi-

I know that I just finished writing an update, but of course there is more to say! I hope you don’t mind another update already, but I want to share the newest info that I have.

First if all, I received by bloods back today.  I had to have them drawn again today because of how horrendous and critical they were last time, as the values that regulate my heart were not good and were in the critical range.  In fact, it was at the point that my heart could literally suffer an arrhythmia or cardiac arrest at any moment.  I also needed to have my bloods done so that I can have the CT performed on Monday that I need to further diagnose what is happening with my legs and why and my left leg especially is having severe edema, discoloration, and burning.

Well, I received my bloods back and it so happened that my bloods dropped even more.  I can’t believe how low they are.  This is really a matter of life and death at this point because to have the values that I have, it is extremely critical.  The doctors don’t even know how my heart is continuing to beat without going into an arrhythmia or cardiac arrest.  I never had blood readings that read so low.

I should really be in the hospital.  I desperately need to be helped and stabilized.  However, there is no hospital in the local area that can really help me because my bloods dropping is due to an underlying problem such as my autonomic dysfunction, neurological condition, and severe gastroparesis.  Therefore, I really need to get to a hospital in California or someplace that can better know how to handle my condition. The best place of course would be to go to Mexico and to have that Ketamine Coma already so that I can be hopefully “cured,” but as I stated in past blogs, we don’t have the funds right and it isn’t going to happen if we don’t have the money.  So in the meantime, I am basically on a “waiting” game and hoping that I will be able to raise enough money and hold out before I expire.  I am like a ticking time bomb waiting to detonate and I can’t receive the needed treatment that will save my life and stop the detonation because I don’t have the funds to do so.

So since I obviously can’t get to the ideal place right now, which is Mexico, I have to make do with what I can do, which is go someplace within the United States that at least can help me.  However, there isn’t any local hospitals that can really help me and therefore, we really need to get to California so that they can help my Gastroparesis.  They are definitely not Mexico, but they are the next best thing and they are definitely better than going to a hospital around here because no one knows anything about my condition around here. However, California of course isn’t around the corner either nor is it cheap.  So I still have the problem of having to pay for it and also that I have to travel across the country.

I can’t go to  a hospital in the local area even though it is thought that they might be at the very least able to “stabilize” me.  Going to a hospital here would not be such a good idea because since they don’t really know how to treat my underlying condition and such, they can easily worsen my overall condition. My disease spreads like a wildflower and easily spreads through trauma.  Since I will definitely need special medication through IVs because in order to stabilize me it isn’t a matter of just giving a pill or a simple shot, but I will need a very potent solution to help bring up my bloods that even the normal person would find uncomfortable and painful.  The stuff that I need to bring up my blood values will literally burn up my veins like crazy and it will cause me great distress.  That is why I would definitely need ketamine while I had this done.  Ketamine would not only help me deal with the pain, but it also carries with it a special property that hopefully ‘contains’ the illness and stops it from spreading or slows it down at the very least.  Yet, no hospital in the local area really knows how to administer ketamine in this way around the clock. It is reality complicated and goes far more into this than I am going.  But to put it shortly… I really can’t go to a hospital here because they are not equipped to handle my condition and they will only make me worse.

So I don’t know what we are going to do.  I am deathly scared because I know that my heart can literally “give” at a moments notice.  They tried to raise my heart meds, so we are hoping that it will help.  Of course it doesn’t help when some of the meds that I take to raise my bloods are in the ice pops that I eat and since I have been having more trouble than ever trying to eat them, I haven’t really been able to take all the necessary medication that I need to keep my bloods up or even bring them up. That is just one more reason why I need to go to California.

I need to get to California or to Mexico so that they can work on my GI tract so that I can eat or something.  They really need to work on my severe Gastroparesis because since my entire GI tract is shut down, I cannot eat or drink basically anything. Even the littlest things that I have been living on such as egg whites and ice pops (which have the medications in them for my bloods), and ice-cream are getting impossible to get down.  So since I can’t get the ice pops down, I can’t get the medications to bring up my bloods down.  In addition, due to the severe Gastroparesis, I can’t even absorb my medications that I take in pill form.  So it just isn’t a matter of just that I can’t ‘eat or drink.’

I don’t know what is going to happen now.  I am crossing my fingers that there will be an answer to all this.  I know that I desperately need to go to Mexico or at the very least to California, but I also know that we need money in order to do that.  I am really hoping that we receive donations and help from others because I am literally on the verge of dying.  I can literally die at any moment from an arrhythmia or even cardiac arrest.

So I am crossing my fingers that nothing will happen and I will make it at the very least to my scheduled appointment in May to California.  We are scheduled to leave on May 13th to go to California and then we are hoping to go to Mexico in July for the radical Ketamine Coma.  But like I said previously, it is all dependent upon funds and therefore, I really need help from others.

In the meantime, I have been trying to raise money and awareness for my condition.  I have been working with a production team that is working on producing a movie that is supposed to be coming out in the next year or so.  I was very fortunate to have them select me to do an interview in their video.  It is a Scott Goldberg Film called “Moirai.”  In addition, they have been so willing to help me in any way possible in trying to find ways of getting me to Mexico as well.  Below are some pictures of the pictures that were taken from day we did the shooting.  They are making a video as well, and I will post the video as soon as it becomes available.  I am so thankful to all who made that video and pictures possible, and I am so honored that they decided to have me do an interview for movie.

1926088_734391463257869_233036645468973271_o 10271405_734391446591204_5814577351882761316_o 10006089_734391449924537_6869999768244699112_o 1396897_734391373257878_5222490452175881487_o 10265352_734391673257848_4245886497775819087_o 1397391_734391629924519_526438248691385262_o 1015459_734391553257860_6493483018506377201_o 885821_734391546591194_3259202476334908957_o

10271248_734391589924523_3143186244659470189_o

Showing a video of a fellow patient who underwent the identical Ketamine Coma I need in Mexico.

1291558_734391609924521_7712841869146817583_o

Showing a video of a fellow patient who underwent the Ketamine Coma that I need

10257536_734391703257845_142406015971811902_o

My Meds

904752_734391729924509_1512315724516890634_o

This box of meds costs over $1000.

1522606_734391383257877_5008831586091351911_o

One of my ONLY friends I have left!

737125_734391376591211_5168618130208749911_o

My partner and crime who stays by my side!

1978301_734391519924530_3585499408323823245_o

Some of the breathing equipment!

The race has been long and I hope the finish line is coming soon.  I don’t know how many hurdles I can keep jumping over and making it through.  I really need to get help and help soon.   I can’t tell you how much all the support and encouragement that people has given to me means to me.  It is this support and encouragement that keeps me going and helps me get over all those hurdles in the road.

Well… I just wanted to update you on the latest.  Monday morning I have the CT scan first thing in the morning so perhaps we might have more answers as to what is happening with me. We really are wondering what it could be because it could be related to my neurological condition such as my Reflex Sympathetic Dystrophy and autonomic dysfunction, my heart failure, my proteins spilling out because of my Gastroparesis, a blood clot such as deep vein thrombosis, or a combination of them.  So fingers crossed!

Remember… I really need help! To help, donations are accepted at http://www.gofundme.com/FallonMirsky.  Please spread the word!

Until Next time.  Happy Passover and Happy Easter to all!!

Love,

Fallon

Leave a comment »

April 18, 2014

1507238_10101111511494040_2396637511284513151_oHi!

Well… Not a good night so I figured that I would update you on all that is going on because so much has happened lately and I also figured perhaps it might help pass the time and keep my mind off this excruciating pain.  I have tried so much medication to try to relieve the pain tonight, but nothing has worked.  The pain has gotten so bad that I am literally taking all the medications that I possibly can and nothing is working. The doctors have even raised my medications to try to relieve some of the pain and yet, nothing is working.

The pain is the worst pain that you can imagine.  I never had pain that was as bad as this.  As much as I thought the pain couldn’t have gotten any worse before, believe me… it somehow has managed. I can’t believe how bad it has gotten.  I really don’t know how much more of this I can tolerate especially when I don’t even get a second to take a breath from it.  I like how when I go to the doctor and they ask me “does anything make it better?” and “does anything make it worse?”  What an easy question for that to answer.  Everything in the world… and I mean EVERYTHING makes it worse! There is nothing in the world… not even the simples thing such as resting, taking meds, or raising my legs that will make it better.  I just wish there was this one thing that would give me even the briefest relief.  I am literally climbing the walls!

The doctors have been trying to work with me the best that they can because they know how badly that I am suffering.  However, they have really exhausted all their capabilities and they can’t really draw blood out of a stone. You know?  They have really given me all the medications that exist in the world, and I am even taking medications that aren’t even FDA- approved and I have to get overseas and such… which are not cheap may I add because they are not covered by insurance.  Yet, we are so desperate that we are willing to do anything.  That is why we are willing to go to Mexico.  Mexico Is the only place that holds the “cure” to my illness, as I need a dose of Ketamine that is not FDA-approved within the United States.  Even though I do undergo ketamine infusions/comas in the United States, it is nothing compared to the radical coma that I need in Mexico. In Mexico, I will be the 38th patient to undergo this Coma in the world.  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 like Mexico. 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.

I desperately need to get to Mexico and get to Mexico fast because I am deteriorating extremely rapidly.  I am also suffering immensely.  However, the cost of this treatment that will save my life will cost me over $100,000 and of course we cannot afford it ourselves.  That is why we desperately need your help and the help of others.  Without the necessary funds, I cannot get the lifesaving help that I need and I am forced to only suffer further, deteriorate further, and as a result, I will die.  The doctors say that I am a “ticking time bomb that’s basically ready to detonate.” I really need help and help NOW.

In the meantime though, the doctors are trying to help me cope and make it through this.  They have raised all my medications as much as they can.  They have recently raised my ketamine medication to 300 mg.  I take so much medication that it can literally kill a horse.  It is amazing how much medication that I take because people that are like 300 lbs. would never be able to survive this amount whereas I am only weighing in the 60s and I am on such a heavy dose of meds that include Ketamine, Methadone, Dilaudid, Morphine, etc.  My house looks like a pharmacy with all the medications that I take, as I take over 50 pills daily.

I just had an emergency appointment at the hospital because my legs look worse than ever and they are not only killing and freaking me out, but they are freaking my dad out as well. You know things are bad when my dad looks at my legs and even he says that they are the “worse” they have ever looked and that the legs are even “freaking” him out.   My legs especially are swelling up with pitted edema, my body is on fire, I am changing colors like crazy, I am aspirating, etc.

We didn’t know what to make of it such as if it was because of illness, if it was because of my heart failing, a blood clot, etc. So I called my vascular surgeon and he wanted to see me at the hospital immediately.  After all, it could be extremely life-threatening especially if it was attributed to my heart failing or even a blood clot such as being Deep Vein Thrombosis.  So the doctor literally met us first thing this morning to see what was happening.

Dad and I of course went to the hospital today to meet the doctor and we didn’t get such great news.  Then again… when do we?  The doctor knows something is definitely wrong and therefore is sending me for a CT scan on Monday because that is the first appointment that they had.  However, he told me that if anything should worsen or if I should feel worse in the upcoming days then that I should go to the ER immediately. He told me that even though he knows that I am a martyr and I don’t really run to the doctor/hospital for things, he told me that even if I feel even a tad bit worse that I should come in or call him because we don’t know yet for sure exactly what is going on and it can be a matter of life and death.   He told me that if I went to the ER that I wouldn’t have to wait, as I should just tell them that I was a patient of his.  He also told me that I should call his office if anything was of question, and they would have him “paged” even though he usually doesn’t receive them especially on the weekends. It was extremely hard to examine me and to find out exactly what was wrong because of my overall illness.  With my Reflex Sympathetic Dystrophy and Autonomic Dysfunction, it is so severe that things don’t present themselves like they should.  In addition, I am so hypersensitive that I can barely be touched so it made it extremely difficult for them to touch me to examine me and such.

The doctors also noticed that they couldn’t feel my pulses.  That was not a good sign at all either.  They are extremely worried that my heart is further deteriorating and failing.  The doctors could not get a blood pressure reading at all. My blood pressure is usually very low, as it is usually 80/60 but today they couldn’t even get a reading at all.  In addition, when the doctors went to feel my pulses in my wrist and ankles, they were barely able to be felt.  I have been feeling so weak lately and therefore, it is kinda no surprise that my pulses were not so strong.

The doctor is also worried that my proteins are spilling out and that is why I am suffering from severe edema. Low protein levels in the blood caused by malnutrition, kidney and liver disease can cause edema. The proteins help to hold salt and water inside the blood vessels so fluid does not leak out into the tissues. If a blood protein, called albumin, gets too low, fluid is retained and edema occurs, especially in the feet, ankles and lower legs.  They think it is due to the severe Gastroparesis that I have and because my entire GI tract is shutting down.

That is why I desperately need to get to Mexico.  With everything happening between my proteins spilling out because of my failed GI tract to the edema to the pain in my legs to the severe autonomic dysfunction to my neurological condition worsening to everything else… I really need to get to Mexico ASAP.  So… I am really hoping that there will be a way to somehow get there.  I am really running out of options, as I have exhausted almost everything that I can think of how to raise the needed funds.  Without the money, of course there is no way that we can go and of course we cannot afford it by ourselves.  That is why I am pleading and begging for help.  I am so scared because I know that my life literally rests in the hands of the rest of the world.  I am hoping and hoping that I will be able to get the necessary donations so that I can receive the necessary lifesaving treatment, but unfortunately it hasn’t been happening.  I have gotten a few donations that I am extremely appreciative for and thankful, but it is far from what is needed. My medical treatment is so expensive and from paying for it for years, we can no longer due so.  It has gotten to the point that we can’t pay for my medication, appointments, the mortgage, utilities, or even to put food on the table.  Even the holidays such as Christmas, Chanukah, Passover, etc., which should have been “happy and celebrative” times have become nonexistent because we cannot afford them anymore. Yet, every dollar does make a difference and the donations that I have received (even the smallest of them) has really made a drastic impact because it has helped with even the simplest things… even if it was to just help pay for a doctor’s appointment or medication.

 

We are busy making plans for Mexico.  Even though we are planning on going to Mexico in July, we really  We really need to do something about my severe Gastroparesis in the meantime because my weight is dwindling and I can’t eat anything.  The littlest things that I was able to eat before such as the egg whites and ice-cream are now even getting too much to bear.  My GI tract is just completely shutting down and we already know that I am in need of a multi visceral transplant, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver. We can never catch a break.  We are supposed to be leaving May 13th, and I just hope that we have the funds available because I desperately need to go.  It’s a shame that there isn’t anyone local that can help me and all my “great” doctors and treatments are across the nation such as in Mexico and in California.  Not only does it cost us more because we have to travel, but it also takes a toll on my body because the traveling definitely isn’t easy on me.

Well… I guess that is about it.  I have bloods in a few hours because they are not only needed for the upcoming CT scan on Monday, which I am having to further diagnose what is happening in my legs and to find out exactly why they are swollen, on fire, etc., but to also recheck my bloods because my bloods came back last time extremely horrendous.  I am really nervous because they came back last time so critically low that if they drop anymore… I am extremely fearful that I am going to have no choice but to end up in the hospital.  So we will see.

I have been trying to keep my spirits alive and trying to keep myself going as much as possible even though it has been hard. I try to still keep myself as “normal” as possible so to try to get past all this horrible stuff that is happening and to take my mind off of it as well.  I have been busy snapping pictures of my pets, which have become my best and only friends because not only are they there to comfort me and ‘babysit’ me throughout the day and night, but I really don’t have a social life anymore.  You really learn who your true friends/family are when you get sick.

1658500_10101088840382130_1151687055_oSpeaking of my pets… I can’t believe that my cat’s birthday is coming up next week.  She is going to be 9.  She is basically my life and if I didn’t have her… I would be at a loss.  When we first brought her home, I made my mom bring her back as soon as we brought her into the house because she fell down the stairs and I got nervous.  I thought I was not deserving of her and was not going to be a good “mom” to her.  Yet, no sooner did my mom bring her back, but my mom realized how much I loved the cat and wanted it and therefore, she ended up going back to the vet to pick the cat up again. However, Missy will never let us forget about how when she was back on the way home that she caused my mom to hit the car into the house because she was an inquisitive cat that kept poking her head out of the box.  My mom was so afraid of her getting out of the box, as she kept poking out, that when she got into the driveway my mom ended up hitting right into the house!  Can you believe that?  But all and all… I am so glad that Missy is here because she has been nothing but a treasure to have.  She is the best gift I could have ever had because she takes such good care of me.  She constantly stays with me and we spend countless nights awake together.  Not only does she always make sure that I am OK, but she loves to go on the computer with me.  Not only does she watch me and she is like my babysitter, but she does the same thing with my turtle.  My turtle and her are the best of friends as they always stay together then I take my George (my turtle) out and she stays on his cage when he is inside.

I have been trying to keep my spirits alive and trying to keep myself going as much as possible even though it has been hard. I try to still keep myself as “normal” as possible so to try to get past all this horrible stuff that is happening and to take my mind off of it as well.  I have been busy snapping pictures of my pets, which have become my best and only friends because not only are they there to comfort me and ‘babysit’ me throughout the day and night, but I really don’t have a social life anymore.  You really learn who your true friends/family are when you get sick.  I also been watching some TV and getting into the “old timer” shows.  I have been enjoying shows that were existent before my time like WONDERWOMAN, the original BATMAN, GILLIGAN ISLAND, etc. I also have been trying to do some reading, which is extremely difficult for me, as it is very hard for me to retain what I am reading.  It really bothers me that I am having this problem because I used to have the best memory, as I had photographic memory.  But I am determined to finish another book like I did last time.  So I am reading James Patterson’s book called FIRST LOVE.

I have also been doing a lot of dreaming lately and wondering what it would be like to get “well!”  I keep picturing my life when I am all better and planning all the wonderful things that I am going to be doing.  I plan on resuming my studies and becoming that doctor, having a family with kids, having a social life, etc.  I also plan on traveling, as my family hasn’t been on a vacation in over 10 years.  I also have been planning on going shopping because I haven’t really enjoyed that in a while and of course when I get better I am going to need to go for a huge shopping spree, as I am going to have no clothes to wear because I am going to be so much fatter and I will of course need shoes since I will be able to finally be able to wear 2 shoes.  Due to my illness, I am a mere skeleton and the clothes that I have now will no way fit me when I am better.  I also cannot wear a sock or shoe on my left foot because of the illness because I am in so much pain and I am too hypersensitive.  So… I really can’t wait to be able to go shoe shopping because all I have been able to really wear is one shoe and it had to be something simple as a sneaker since you are really limited what you can wear since I needed to use crutches and you can’t use crutches on heals or anything of that sought.  What girl likes just wearing sneakers? LOL!!

I also have been picturing my life going out to eat and even being able to eat.  It is amazing how much this disease has taken from me.  People don’t really realize that when you have your health, you really have everything.

Well…I guess I will write again when I have more info.  Thanks again for all your support and encouragement.  I can’t tell you how much I appreciate it.  I definitely would not have made it this far and long without it.

Love,

Fallon

Leave a comment »

April 15, 2014

1614121_10101110500759560_1428136961348406310_oHi-

I just wanted to update on the latest that is happening. The call came in today that the doctor in California wants to see me on May 13th! This is amazing news because this doctor literally had no appointments for months. However, due to my circumstances and how badly I am doing, he made special arrangements and made a special opening for me.

There are not many specialists that are knowledgeable about my condition in the world… let alone in the United States. However, there was this one doctor in California at the Cedar-Sinai Hospital that is supposed to be very knowledgeable in dismotility and in severe gastroparesis. As I am suffering from severe autonomic dysfunction and severe Gastroparesis, I need help desperately because I can’t eat and my entire GI system is completely “dead!” I only weigh in the 60s and have a BMI that is less than 10.8, which is unheard of. I suffer from more specifically from Intestinal pseudo-obstruction (a form of Gastroparesis), which is a rare condition with symptoms that resemble those caused by a blockage, or obstruction, of the intestines, also called the bowel. However, there is actually no blockage that really exists. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines. It is a result of my severe autonomic dysfunction and severe reflex sympathetic dystrophy. These illness cause problems with nerves, muscles, and/or interstitial cells of Cajal. Interstitial cells of Cajal are called “pacemaker” cells because they set the pace of intestinal contractions. These cells convey messages from nerves to muscles, and problems with nerves, muscles, or interstitial cells of Cajal prevent normal contractions of the intestines and cause problems with the movement of food, fluid, and air through the intestines.

This condition is very serious and very uncomfortable. It causes abdominal swelling or bloating, abdominal pain, nausea, vomiting, and constipation. There are so many times that I walk around feeling and looking like I am pregnant. I also feel so full of air at times that I wish that someone would take a pin and pop me like a balloon. Over time, the condition can cause malnutrition, bacterial overgrowth in the intestines, and weight loss. Malnutrition is extremely serious because the body is not getting the right amount of the vitamins, minerals, and other nutrients needed to maintain healthy tissues and organ function. That is why all my organs are failing ad why I am also having problems with my esophagus, stomach, bladder, etc.

We have been searching everywhere for help, but unfortunately there isn’t really a lot known about my illness nor are there a lot of specialists that are able to help me. I have had various types of treatment to try to combat this problem such as Nasogastric tubes, NJ tubes, TPN, enteral nutrition, parental nutrition, etc. but nothing has been successful. Not only do they not work, but they literally cause havoc in my body and cause other problems such as burning up my veins and further causing more autonomic dysfunction, which is intolerable. We even tried all different kinds of medications and even get medications that are not FDA approved and are forced to pay out-of-pocket for them totally since we have to get them overseas. I also have to take daily injections to help with this problem.

Due to my condition, I cannot go to the bathroom at all. I constantly feel constipated and I am constantly expelling mucous. The doctors are very worried that whatever inside me is “rotting” because the medications and whatever little food is remaining in my body cannot get out. So it just stays in my body and rots and the doctors are extremely fearful that it is going to lead to one massive infection. I take numerous laxatives from everything from 6 colasces, 6 senokots, 8 ducolaxes, etc. daily along with injections, but nothing works. We have tried enemas and even enema bags, but those don’t even work either. I have even shocked doctors and nurses when they can literally give me an enema bag that is as big as a big IV big with 1000 mL of solution and I still don’t go. But my organs are just so paralyzed that nothing works.

I am so blocked up that we are even having problems finding out where the bleeding is coming from. We also know that I am bleeding from somewhere in my GI tract, but the doctors are unable to figure exactly where it is coming from or what exactly is occurring because they can’t “empty” me out enough to do a colonoscopy. The doctors have tried to put an NG tube in me to pour the mixture “Go-litely” in me to empty my intestines and bowel, but unfortunately after only pouring in ¼ of a liter, the NG tube started to back up and the mixture started to come back out of my nose. Therefore, the tube had to be removed. So we are still trying to figure out exactly what is going on. We also know that due to the air and all the distensions that are occurring in my intestines, it is putting extra pressure on my organs and causing them to fail as well. The doctors are also fearing that the colon has also twisted because of the pressure, which is extremely dangerous.

I have tried everything and yet, I am continuing to deteriorate. As a result, the doctors have been talking about performing a multivisceral transplant, which would include getting a transplant of the stomach, small and large intestine, pancreas, and liver. It is extremely radical and dangerous, as it is the most dangerous transplant that you can have. Only 6 hospitals in the United States currently do it. We are hoping that we can try to avoid it by going to Mexico and having the radical ketamine Coma, but unfortunately that will cost us $100,000 and we cannot afford it by ourselves. Without the funds of course that treatment is not going to happen and therefore, we have to no other choice but to look for other options. Of course the ketamine Coma though would be the best course of action though because not only would it help hopefully with avoiding the transplant and help with the Gastroparesis, but it will help with the Reflex Sympathetic Dystrophy and severe Autonomic Dysfunction as well. In addition, I am on a whole array of drugs that are extremely potent and are enough to kill a horse. The doctors can’t believe honestly that someone my size can withstand all these drugs because a person that is 300 pounds would never be able to tolerate it. Yet, I am in so much pain and discomfort that I need them in order to someone function and make it through a day! I am on everything from ketamine to morphine, dilaudid, nucynta, methadone, etc. The goal of the Ketamine Coma in Mexico is not only to “cure” me of my illnesses, but to also take me off these medications as well because there is no way that I will be able to come off of them without being in the coma because I will go into severe withdrawal and have seizures and possibly die.

But right now I am seriously deteriorating and something needs to be done immediately or I am going to die. I can’t wait around much longer and do nothing while I wait for the funds for the ketamine Coma. Therefore, I need to take care of my GI tract because I am unable to eat or drink anything. I am only weighing in the 60s and any weight lost… even a single pound… is extremely critical. I can barely eat anything and even the littlest things that I have been surviving on such as the egg whites, ice cream, and ices are getting to be intolerable to get down anymore. We are really running out of options.

I really need help immediately. After speaking to this doctor in California, he had no appointments for a couple of months. I just love how when you are sick that there are always such long waiting lists to see a doctor. The doctor told me though that he would look over my records and see if he could see me sooner.

Well… I got the call today that sure enough he can. In fact, he can see me as soon as May 13th. The doctor wants to see me as soon as possible because he said that I am “not going to make it much longer.” He said that I am extremely ill and a time bomb that is going to detonate soon. So… it looks like we are heading to California on May 13th, as long as we have the funds to do so.

I desperately need to get to California but unfortunately; we can’t afford it by ourselves. It really hurts me to have to BEG for help because I was never like that. I was always on the other side… helping others. I would help others in any way that was needed. I always put others before myself. But now… the tables have turned and I am basically on all fours begging and pleading that someone will please help me because I am literally hanging on by a thread. It kills me that I have to plead and beg like this for help, but I am just so desperate. I hope you and others don’t mind that I am doing so… but I just don’t know what else to do. I don’t want to die. The only way I will be able to get to California for this much-needed appointment is if we have the funds. However, we can’t do it alone and therefore, I am hoping that you can help me raise the money so that I can get to California. Please spread word that help is needed along with my website. If you have any ideas on how to raise money or fundraise for this… I would really appreciate it and you can message me at Femirsky@gmail.com.

10005913_10101110503803460_5617197852134228736_oI am really excited to go to California because I know how desperately I need to go. There is nothing here for me in terms of doctors or treatments and I know that I really have no other choice but to go across the country to California. The only thing that I hate is that I have to travel all the way across the country because it will really take a toll on my frail and fragile body. I really don’t know how I am going to manage the trip because I honestly am getting too weak and sick to travel. It is getting to the point that I can barely get off the couch nowadays. I don’t know how I am going to withstand a trip across the country. Thank goodness I will have my dad traveling with me because he is my best friend and my superhero. He won’t let anything happen to me. But I know that this traveling will NOT be easy on me at all. I only wish that we wouldn’t have to stopover on the planes and travel the entire day because it takes a huge toll on me, but we all know those flights are the cheapest and we need to save as much money as we can. I just hope that this trip doesn’t kill me.

I have recently been blessed with 3 angels in my life. They are doing a movie that will be released hopefully in the next year or so and they not only asked me to do a part in their movie, but they also did a promotion for my fundraising site. They also are looking for ways to further fundraise money so that I can hopefully receive the much-needed lifesaving medical treatment that I desperately need. They are doing whatever they can in order to facilitate this, which includes contacting the media such as Channel 12, Fox, etc. I am only hoping that this will work out because I desperately need help and in this world it isn’t WHAT you know, it’s WHO you know and unfortunately I don’t know anyone. So despite how many times I have tried to contact them, I have not been successful because I have no connections whatsoever. More importantly, these 3 angels have entered my life and have become 3 friends that I have not had before and will hopefully stand beside me until the very end. They are also thinking seriously about coming with me to Mexico and filming the entire Ketamine Coma so that others can see exactly what is taking place since this treatment is extremely radical and rare… and not given within the United States. In fact, I will be the 38th person in the world to undergo this Ketamine Coma.

In addition, I really want to thank all the people who have contributed to making the charms and bracelets for me out of the rainbow loom. I can’t tell you how much it has meant to me. When I went on the computer today and saw that the moms from Massapequa had all those charms and everything… I couldn’t believe it. I really don’t know how I can thank you enough. I immediately showed my parents and I want you to know that they too are extremely grateful. They said, “For once they have seen a smile on my face that they haven’t seen in a very LONG time.”

I have lost everything in my life and to be quite honest with you… it is hard to smile anymore. There are so many times I wish I don’t wake up in the morning because I can’t take living this life anymore. However, I just want you to know that these bracelets and charms have brought “hope” and a smile finally back to my face. I am still hoping and praying in miracles. That is why I am trying to collect 1,000 rainbow loom charms and/or bracelets. I am doing so because I am doing it in the spirit of Sadako and the Thousand Paper Cranes. Even though they aren’t the paper cranes, I am still hoping that a miracle will take place when I get to 1000. I have had the worst luck and I am hoping that a miracle will occur with all of these bracelets and charms… just like a miracle was supposed to occur with the paper cranes. Maybe my miracle is on its way. I do find it awfully weird that the same exact day that these looms were told that they were on their way that I got the good news that the doctor in California wants to see me ASAP.

I haven’t received a gift (not even a holiday or birthday gift) in the longest time… so I can’t tell you how much receiving a gift like these charms means. In addition, when I am in the hospital… it is such a scary and lonely place and when I look at all the charms… I feel so loved and special. I really feel like I have support with these charms and bracelets and that I am not ALONE in this battle. If it wasn’t for the support of others… I don’t think I would have made it even this far.

On a better note, I have recently joined TWITTER. I finally woke up and joined Twitter, but have no idea what on earth that I am doing. All these symbols like “@, #, etc.”… I have no clue what they mean. I guess I am going to have to learn. All I know is that my name is @FallonMirsky and if you follow me it will be some interesting journey. I guess I finally came out of the dinosaur age!

1507238_10101111511494040_2396637511284513151_oTo try to make me feel better, I recently tried putting on some new makeup. I have a way of thinking that if you “look good” you “feel” good. So I tried to make myself look as good as possible lately to see if I could possibly be stronger and everything. I have always been an avid makeup person. That is why when people see me they don’t realize how much I truly am suffering because I conceal it so much. I don’t cry in public nor do I walk around like I am “sick!” I try to look as normal as possible and try to look my best. After all… even though I am sick… I still want to be beautiful (even though it is getting harder and harder). But I must say that I did get this new makeup that really is working wonders!!

Thanks again for all your continued support. I really can’t thank you enough. Until next time!!

Love,

Fallon

Leave a comment »

April 12, 2014

1402456_10101107294814300_2042769779852293772_oHey-

How are you? Just wanted to say HI and update you on all that has been happening!!

As I previously written, I am not doing well at all. I knew something was wrong because of the way that I have been feeling. I have been having more difficulty than ever in just even getting off the couch and being mobile, and that is why it has come to the time that I need to get a wheelchair/motor scooter. Unfortunately I am getting too sick and weak to be walking around on my crutches. To think… I was so amazing on them too, as I could outrun anyone on them and carry items with them as well. If there was an Olympic track and field event that dealt with using crutches, you can bet your dollar that I would have won GOLD!

But it has gotten to the point that I am too weak and sick now to even keep going on the crutches. I never wanted to think that I would end up in a wheelchair or have a motor scooter. I always tried fighting it no matter what because I knew that if I gave in (even one time), it would be too easy to give in the next. But it has gotten to the point where I am just too tired to keep going anymore. My body has had enough.

I knew something has been happening lately in my body. Something wasn’t feeling right. I have been feeling weaker than usual and in more pain than usual. I am bleeding more and even having a more difficult time going to the bathroom. I have been getting worst killer stomach pains in the world that I feel like I am going to die. I also have been getting severe edema in my legs. My legs are so swollen that you can’t even see the anklebones anymore. I am also having an extremely hard time to breathing and my heart is feeling weak.

Well it just proves when I say that something is “wrong” with me… I definitely know what I am talking about because when I went for my bloods today I learned that my bloods have dropped. As bad as my bloods have been lately, they have dropped even more. I am really nervous because I know how easily my heart can stop and go into cardiac arrest at this level. It is so easy to have an arrhythmia or something. I really belong in a hospital, but unfortunately we don’t have the funds to go to a hospital. We can’t just go to a “local” hospital either because they don’t know how to treat me. I need to go to a hospital that knows my condition because it isn’t just a matter of giving me IV or a transfusion or something else. There is an underlying cause that is causing my bloods to drop and until it is corrected… I am going to be having this problem.

Therefore, it is imperative that I get the help that is needed, but that can only be done in certain hospitals, which are not located in the area. I really need to get to California or Mayo Clinic, which of course is not around the corner and of course will be expensive. Of course best answer would be to go to Mexico, but that is even further and even more expensive. Since we can’t afford any of these places, I am kinda out of luck. I know some people might be saying to just go to “any” hospital and they can help me or at least stabilize me, but that isn’t the case. They really don’t know how to treat me and will only make things worse. In fact, the times I have gone to the hospital, they have even discharged me with knowing how bad things are and saying that they cannot treat me because I am beyond their scope of knowledge. So I am just holding on and hoping.

10010301_10101107294654620_4698892991727790636_oIt makes it even more difficult when I can’t really tolerate my heart meds anymore. I have special meds that are in ice pops in addition to the ones that I take by mouth in pill form. However, since I am having such a hard time eating and drinking, I am even having a hard time getting down even the simple things like ice pops. Therefore, the amount of ice pops that I should be taking in daily has diminished, which means less heart meds for me. We don’t know what to do because I just can’t tolerate the pops anymore.

In addition, my autonomic dysfunction has been completely out-of-control. I keep breaking into cold sweats. I also keep getting extremely overheated, but unfortunately I can’t sweat because I don’t have the ability to do so. It really stinks. I even get to the point where parts of my body are so overheated whereas other parts are so freezing cold. So I don’t know whether I am freezing or hot at times. Sometimes I think that the autonomic dysfunction is just as bad as the pain or even the worst part of this entire thing. The slightest thing such as an extra glass of water or a change in temperature because I can’t regulate my body temperature will set it off. When my autonomic dysfunction starts… my entire body goes into havoc as I start not to be able to breathe, I can’t tolerate clothing on me, I can’t tolerate anyone or anything touching me, I feel worse than ever, I get all prickly, etc. It really becomes a nightmare and there is nothing that I can do to stop it. Once it starts… it doesn’t stop and it lasts for such a long time!

Besides my illness contributing to this autonomic dysfunction, the weather isn’t helping either. I hate this time of year because of this problem. I mean… I love how it is starting to get warm out and the flowers are starting to bloom and the sun is shining and everything else, but in terms of my illness… it is wreaking havoc on me. I can’t enjoy opening the windows like normal people usually do during this time of year and enjoy having fresh air in the house. Instead, I have to have the windows closed at all times because I can’t tolerate the texture of the air. Not only can’t I regulate the temperature, but also the air feels so “thick” and “dirty.” It really makes it horrible to breathe and it really makes me swell up and such. The air feels so heavy! I think it is because I am so hypersensitive that I can tolerate the very slight bit of humidity and therefore, I need to have the windows closed so to keep the humidity out of the house.

In addition, I can’t regulate body temperature and when the windows are open you can’t really regulate the temperature. We literally go from heat to a/c because I can only tolerate a temperature of 74-76 degrees. I am literally like a human weather station, as I can feel the slightest change in temperature. So at least when we have the a/c and heat on… it makes it so it constantly maintains that temperature. Maybe one day I’ll b able to enjoy a nice spring night with the windows open!

The doctors are running out of options. My doctors would love to put me on marijuana, but unrtunately it isn’t legal in New York. They did think about putting me on a drug that is like having Marijuana called MARINOL, but I haven’t really taken it as of yet because I just can’t manage naymrore pills. I already take over 50 pills daily and enough pills to kill a horse. In fact, the doctors are fascinated actually that I can tolerate all these pills because a person that is like 300 pounds wouldn’t be able to handle them. They think that my liver metabolizes the pills really fast and that is why. Anyway… I would take the Marinol if they knew it would help guaranteed, but it isn’t real Marijuana. MARINOL Capsules contain man-made dronabinol (THC). THC is the naturally occurring component of Cannabis sativa L. (marijuana).

In the meantime, I also heard about a new drug being released called Linzess. It works by increasing the movement of contents through the GI tract and by blocking pain signals in the intestines. In studies, patients taking linaclotide experienced improvement in multiple symptoms including pain or discomfort, bloating, and bowel function. My GI doctor is on vacation this upcoming week, but I have the very first appointment with him on Monday morning at 6:30 AM when he gets back… so I am definitely going to ask him about it. After all… it can’t hurt. I’ve tried everything else out there already anyway.

I have just been getting worse and suffering more than ever. We were supposed to be leaving for Mexico to receive the lifesaving Coma that I desperately need in May. However, despite all the hoping and trying to raise money that I have been doing, it has not been enough and as a result, it as caused us to force us to cancel our trip and postpone it to a later date. We are now looking at going in July, but the doctors are really fearful that I won’t make it that long. I am only hoping that I will be able to make it the extra two months and it will be enough time to raise the money because this treatment is extremely expensive and something that we cannot afford by ourselves. Unfortunately it will cost us $100,000 at least and it is something that I desperately need because without it I will die and die soon! So if you can please pass the word that HELP is needed or can think of any way to raise money, please let me know.

10257833_10101107294260410_5351154217603758570_oIn the meantime, I have been going for my ketamine treatments here in New York. Of course they are no way as potent and helpful as the one that I will be given in Mexico, but it is definitely something I look forward to because it is the only time I get to “escape” this Hell. When I go for this Ketamine treatment, I finally get to be spared the pain and agony of this disease, which I suffer from 24/7 from. If I can live in a ketamine coma/infusion forever until I get to Mexico… I probably would because I am so much in pain and I honestly cannot take it any longer.

However, I must say that we really had some complications the last time we went for the treatment. I guess the weaker my body is getting, the more complications that I am going to have. That is another reason that I need to get to Mexico as soon as possible because I need to be as strong as possible for it because I need to be able to come off the machines and lines that they will be putting me on. I am so weak already and the doctors are already scared that when they put my on complete bypass (I will be surviving completely on machines while I am in the coma in Mexico), I will weaken further and when it is time to extubate, they will have trouble getting me off the machines.

During my last ketamine treatment the machines kept alarming because of how low my heart rate, pulse, and oxygen were all getting. They think it is because I am getting so weak and my organs are shutting down. Therefore, I am not breathing and having the circulation as I should be having. My heart rate literally was in the 30s and my oxygen content was like reading 90.  If that wasn’t enough… to make matters worse…  we then came home to a letter from one of my doctors saying how worried they are about me and how I am going to “die” and “not make it much longer.” Can you imagine a doctor mailing you such a thing? Like we aren’t trying everything to get to Mexico to get well… it isn’t my fault money doesn’t grow on trees. If we had the money… we would be getting the treatment I need in a heartbeat!

10255737_10101106616533580_4376051054050006581_oEven though the trip to Mexico was changed to July, we also ended up scheduling another trip to California in June. We are going to see a doctor for my severe Gastroparesis since I cannot eat or drink and I am basically dwindling down to nothing. We are going to Cedars-Sinai Hospital. I always wanted to go to Los Angeles, so I am kinda really excited. Maybe I will see some famous people. I can hope, right? After all… it is Hollywood, right? I just hope that we have the money to go. We really need to go because they are talking about doing a multivisceral transplant on me, which entails getting a new stomach, small and large intestine, pancreas, and liver. There just is never a dull moment. There is always something going on.

I wanna get better so badly. I would do anything to get well already. I want to be normal in the worst way. I want to be like everyone else. I want to be able to “work out” and exercise. I want a career. I want to become a doctor so that I can help others so that they don’t have to end up like me. I want to be able to have a social life. I want to be able to have FUN. I want to be able to have a friends, a social life, as well as a family with a husband and kids. There are so much that I want, as I was robbed of everything that you can imagine and forced to live a life that basically was isolated from everyone.

Sometime I feel like “Rapunzel.” Just like Rapunzel, we both got to live a life until we were locked away. We were also both beautiful when we were growing up, as we both had long golden hair. However, just when Rapunzel reached her twelfth year, the enchantress shuts her away in a tower in the middle of the woods, with neither stairs nor a door, and only one room and one window. When I reached my 12th year in school, I became in a similar situation, as I basically got locked in my house because of my illness. Then… we are both thrown into a situation to fend for ourselves and we need to depend on ourselves in order to stay alive. After Rapunzel gives away the “prince” to the enchantress, the enchantress in anger cuts off Rapunzel’s hair and casts her out into the wilderness to fend for herself. I am thrown into the fire of my illness because it has come down to the very issue of me being able to afford the treatment that I need in order to be able to survive and stay alive.

I only hope that I will have the same happiness at the end of my story as Rapunzel did. Rapunzel ended up living happily ever after despite all that she went through with her prince, as she found him wandering and then restoring his sight. He then leads her and their children to his kingdom, where they live happily ever after.

On a better note… I am having a director come to my home in the morning to get my story known. I am really excited to have this done because not only do I want my story known, but also I want to really make a difference in the world. The documentary is all about making people think and bring awareness. The hope is that people will stop focusing on drama and focus more on helping others, which is what the message is to be about with your interview/segment.

In addition, the director is thinking about coming with us to Mexico as well to capture the entire Coma and document it. It would make a really amazing video and I really hope that works out well so others can see exactly what it is like. Not only would I love to have his support with me down in Mexico while I undergo this lifesaving procedure that very few people have undergone, but I would love for others to know exactly what I went through and what all their donations have contributed to and how this Coma was such a “Miracle” for me. It really is what is going to SAVE my life. That is why I need so much help in getting to Mexico!! Please help!

On that note… I guess I will be going. I am getting tired and weak and I am in too much pain to write more. Just want to remind you that bracelets are still available for $5. If interested, please inbox me at Femirsky@gmail.com. They come in pink or blue and say HELP FALLON FIGHT! All money goes towards helping to pay for my medical expenses.

Thanks again for all your support.

- Fallon

Leave a comment »

April 3, 2014

1973441_10101076307198730_199068122_oHi!

I know it has been awhile since I last written, but to be honest… I haven’t been doing well. I have been doing even worse than usual (if that is possible) and it really is even taking a lot out of me to write tonight. Therefore, I really don’t know how much I am going to be able to write tonight or how coherent all this will be until I finish. So… let me warn you before you begin to read this to please be understanding and please be bare with me. My apologies in advance if some of the things are not coherent.

I really wanted to write tonight and let you know the very latest because I am not doing well. I have really taken a turn for the worst and I really need to get to Mexico more than ever now. I fear that if I don’t raise enough money to go to Mexico and get there… I am going to die. My body is really shutting down fast and suffering. However, even though we are scheduled to leave for Mexico in May, we don’t know if we are honestly going to be able to go because we are still far from our goal of the money that is needed to pay for the trip. We can’t pay for the trip by ourselves and despite all the help we have been asking for… we haven’t been able to raise enough to get me the very much needed lifesaving treatment. But, I am still hoping that it will happen even though we are still very far from the actual amount of money that is needed for the treatment since it will cost us over $100,000.

I am very fortunate and thankful for all the people who were kind enough to donate to me. However, without the full amount of money to pay for the treatment in Mexico, I am not going to be able to have it. Even though I have tried many different ways to raise money, it really wasn’t as successful as I really was hoping for. Therefore, we might have to put off the trip for awhile and postpone it until July. However, the doctors are saying that putting off the trip will be extremely dangerous and very detrimental to my health. They really don’t think I will make it until July and they are really hoping that I will still be able to find the funds so that we can continue as planned and continue to go down to Mexico for the lifesaving treatment in May. But, May is literally 1 month away and it basically will take a “miracle” for it to happen. So… if you can please do anything to help facilitate that miracle, I would really appreciate that. Please spread the word that I am in desperate need of medical treatment and without it… I am going to die. Please also say a prayer that I will also make it to July because that will be the next time available to have the Coma!

I really need this Coma more than ever and urgently too. I am really not doing well at all. In fact, it has gotten to the point that we need to actually get a wheelchair or a motor scooter for me. It has gotten to the point that I am too weak, too much in pain, and too sick to continue to walk with the crutches. For me to actually concede to a wheelchair or crutches… things have to be really bad because I always promised myself that I would never end up with one. In fact, that is another problem we are having, as even the wheelchair and motor scooter will cost nearly $1000 and we don’t even have the funds for that either.

I never wanted to go into a wheelchair or have a motor scooter. To me… I always knew that once I went and had one of those items, it really meant that the “end” was here and that was it. In fact, despite all the times I was offered a wheelchair or scooter to get around, I always turned down the offer even though it would have made my traveling easier. There were so many times when we were someplace where I really wanted to use a wheelchair or scooter because I was so tired and so much in pain. However, I never wanted to give in to this illness because I knew that if I gave it an “inch”… it would take a “foot.” I knew that if I gave in to it that time… it would be too easy to give in to it the next time. You know? So despite all the wanting it and how much it would have made it easier on me… I always turned it down.

I did whatever I could to manage to stay on crutches. In fact, I was amazing on crutches. I could carry items and even outrun anyone on crutches. So for me to say that I can’t use them really anymore and that I need a wheelchair or scooter… it really shows how “sick” that I am.

However… like I said before… we are having more problems because it is also an added expense to the mix that we obviously don’t have the funds for. They want about $1000 for it. I need to get a certain kind as well because of how small I am and my strength. So I am really hoping to raise money so that I can be “mobile” still because without the wheelchair or scooter… I don’t know how I am going to get around.

I have been in so weak, been in so much pain, and been suffering so much lately that I literally can’t even get off the couch. Using crutches takes too much energy and that is why I need the scooter. Even going to the bathroom is too exhaustive and taxing on my body. It has really gotten to the point that I basically sleep the day away and only up for a few hours to try to eat and that is it. My body is just shutting down and doesn’t have the energy to do anything else. I am so weak and have been sleeping so much that my dad constantly is checking on me (even all throughout the night) to make sure that I am still breathing because this is so unlike me.

With all the pain that I am in, the nights are the worst. By the time the nights come alone, I am in such severe pain that nothing gives me any relief. I literally max out on all meds lately especially at night because of all the pain that I am on. I take so much medicine that doctors say that the amount of medications that I take would kill a horse. They don’t even know how I am tolerating all the meds that I am on because there is no way that a person weighing over 300 pounds can take this amount. They said that my body is just metabolizing the drugs so very quick and that is one of the problems.

I really also need to get my GI tract checked out. The gastroparesis has also gotten really bad. Not only am I bleeding worse than ever, but the vomiting has worsened as well. I can’t tell you how many times we have to change my bedding or anything because of the vomiting/bleeding. Nothing is worse than when it is the middle of the night and you wake up with blood in the bed. It is horrible.

In addition, we I recently broke a rib. I have gotten so fragile that the littlest thing will cause me to break. My bones are so brittle because of my illness and I haven’t been able to get the very needed medication that I need to help strengthen my bones because of the severe osteonecrosis that I am suffering from. Since I have Osteonecrosis, the doctors are fearful of giving me the infusion that I usually get to strengthen my bones and therefore, my bones are deteriorating even further. I really needed that infusion too because my bones were still even deteriorating and really weak with the infusion. To think how much worse they would have been without it. So I know it is really bad because I haven’t had the infusion in awhile.

It shows how brittle and fragile I am because all my dad did was pick me up. He didn’t realize that his pen was in his pocket and as a result, he ended up breaking my rib when he picked me up because my rib pressed against the pen. To think that something as simple as this ended up breaking my rib. So… I am in so much pain because of this and I am in even more pain than an ordinary person because I am hypersensitive to everything. A simple needlestick is like someone driving a knife through me. So Everytime I breathe, I get the hugest pains you can imagine. Plus, since I am always vomiting… it isn’t helping the problem either.

I am not going to lie… I am so scared. I really don’t know what is happening. All I know is that something isn’t right and that I really need HELP and help badly. I am so thirsty and nothing quenches my thirst. It is getting extremely hard to breathe as well. Even taking breaths of air is so exhausting. I really feel my body deteriorating and shutting down. It is the weirdest feeling in the world… a feeling that only someone experiencing it can understand. I really just hope that if anything should happen that I go quickly and not painfully and that I go in my sleep. But I really hope that it doesn’t have to come down to that, as I am still praying that I get the lifesaving treatment that I need and will be able to live my life to the fullest. There is still so much in life that I haven’t done and so much that I want to do.

My dad hasn’t been doing well either lately and he is also freaking out.   He looks horrible, as he has aged so much in the last few weeks. He can barely walk, he is exhausted, extremely stressed out, etc. I guess I can’t blame him. He really wants me to get better. In fact, if something would happen to me, I don’t think my dad would ever get over it. It hurts him so much to know that I am suffering and that there is nothing that he can do. It hurts him so much that he can’t provide the money and what is needed for me to get well. He would do anything for me to be able to get to Mexico so that I can get the much needed treatment that could save my life. But, he knows that his hands are tied. He keeps reassuring me that we WILL get to Mexico, but sometimes I think he is just saying it because he is just trying to keep me going when deep down he knows it will never happen because we are never going to have the funds for May and I won’t make it until July. I am just afraid that he is going to have a heart attack with all the worrying, stress, and work that he has been doing. If something would happen to him, I would never forgive myself. He is not only my father, but also my very best friend!

1597818_10101095064114720_1301869948_oThank goodness that I have my animals. They have really been the only “good” things lately in my life. They have really been my only friends throughout this. I have felt so alone lately. You really learn who your true friends and family are when you are sick. By having this illness, I really had my social life end and I really just spend my life cooped up in a house… isolated from the world because it is so hard for me to get out because of how sick I am. Not only can’t I go out because of how I am feeling, but even the weather affects me, as I can’t tolerate the temperature, humidity, the wind, etc. Even the gentlest breeze against my skin will send the most excruciating pain throughout me.

I am not going to lie, but I really miss my social life. I really wish I had one again. I just wish that I was normal. Sometimes I wonder why I bother even having a phone. The only people that call my phone are the doctors. I would love for people to “text” me, but all my phone does is remain as gateway to talk to doctors and a place that keeps my appointments, which is filled all with doctor appointments rather than FUN social events. I just wish my life was different. I am 32 years old and my life has literally been taken away from me. I really want to experience life like everyone else has.   I know it sounds stupid but I even get upset and jealous of people “working” or “exercising”. I just want to be normal! I will do anything for that day for it to happen!

Well… I guess that is it for right now. I really just wanted to bring you up-to-date a bit on what is happening and also ask if you can please say a prayer for me because I really do need it more than ever. I am really worsening and really need to get to Mexico ASAP. Please say a prayer for me!! If you can think of any way possible to raise funds for Mexico or for my other medical expenses such as the motor scooter so that I can be mobile…. Please let me know. I am really desperate.   I really am a time bomb waiting to go off and it is going to detonate soon. I need help faster than ever now.

Thanks again for all your help. Again, please continue the prayers and please continue to spread word of my donation site at www.GoFundMe.com/FallonMirsky. Bracelets are still available and can be purchased by sending me a message at Femirsky@gmail.com. They are $5 and all expenses go towards my medical expenses. The “Help Fallon Fight” bracelets come in pink or blue.

With spring finally arriving and the flowers in bloom… I am hoping that the gray and gloomy skies will not only clear up outside, but it will also clear up in my life!! However, I know that isn’t going to be possible without the help of others. Please help!! I am desperate.

Love,

Fallon

Leave a comment »

March 20, 2014

Clip Art Illustration of Spring Text with FlowersHi-

Just wanted to wish you a HAPPY SPRING even though the weather outside isn’t so springlike.  I can’t wait for this weather to change because I certainly have had enough of this cold.  This winter has been like no other winter that we have had, as it has been unbearably cold.  However, I know that now that Spring has sprung, I am really going to have a hard time adjusting and a few hard weeks ahead of me.

As much as I love spring, I hate the change of weather because it wreaks havoc on my illness.  My body doesn’t do well with “changes” and therefore, I will be in extreme pain even more (if there is such a thing) because of the change.  My autonomic dysfunction will also worsen as well.

Speaking of my disease worsening, I can’t really take advantage of springtime weather like others do.  Most people love springtime because they can have the windows open and enjoy the fresh air going through the house.  However, I can’t have that in my house because of my illnesses and autonomic dysfunction.  I am too hypersensitive and therefore, I need the perfect weather and perfect temperature of like 74 degrees with no wind whatsoever. The windows can’t be open because there is too much of a wind that will come through it and it will wreak havoc on me.  In addition, just the texture and the humidity of the air will bother me as well. Therefore, at least when the heat or air conditioning is on it is on a set temperature and the heat or air-conditioning will turn on or off in order to maintain it. When the windows are open, there is no way to maintain the temperature.  For me, I can’t have it too cold because I can’t put clothing on because anything that touches my skin gives me horrendous pain, and I can’t have it too warm because I can’t cool myself off or sweat.

My dad jokes around saying how I need to be in a “bubble.”  He says it because not only do I need to be in it because it will be a way of protecting me so I don’t injure myself, as my disease spreads through trauma, but this way I can be in the perfect environment for me.   I did tell my dad though that if I ever got better… he can be certain that I am building a “bubble” because I am not going to chance having this illness ever come back because there will always be a chance of it coming back if I ‘injure’ myself or have a traumatic event.  No way can I go through this again!

Springtime is such a wonderful time.  It is a time to be happy and cheerful, which is something I definitely need… especially lately.  I wish I could stay in my dream world! I think about times when I am going to be married, be a doctor, be socializing and hanging out, etc.  But then reality strikes back and I realize I am back in the real world of this horrible disease filled with unbearable pain and in a world where even the gentlest touch is painful.

I have been suffering so horribly lately and I just wish I was better and had my life back.  I see others enjoying life and doing stuff…whether it is just going out to eat, going for a run, working, going to school, hanging out, texting each other on the phone, having friends, having fun, etc.… and I want that so much.  It bothers me that I can’t do any of those things!  To be quite frank with you… I don’t even know why I have phone because it isn’t like anyone calls me anyway?  The only people who calls me is the doctors.   All I can really do is spend countless days isolated in my house and in pain.  I feel like I am cut off from the world because I can’t do anything.

Mexico is quickly approaching, as we are supposed to be leaving May 15th and I hate to say it but I don’t know if it is honestly going to happen.  I need this Ketamine Coma more than anything in the world because I am rapidly deteriorating and yet, I don’t know if it is going to be a possibility because we really don’t have the money for it.  I don’t know what is going to happen if I can’t undergo it at that time because I am not going to make it much longer.  I am rapidly deteriorating and suffering immensely.

Yet, this Coma is going to cost me over $100,000 and I am no way close to having that amount.  Plus, I need to put down a deposit in the next 2 weeks or so of about $40,000 and I don’t even have that.  I really keep praying and hoping that we will find the funds somehow and that I will be able to go, but I know deep down that it isn’t going to happen.  This is one dream and wish that is not going to happen despite all the “trying” I have done to raise the money.

My dad constantly keeps telling me to “Not to worry” and that we are “definitely going to make it to Mexico.”  But to tell you the truth, I don’t know how on earth he is going to pull that off especially when we don’t have the money to do so.  I know he wants me to get better more than anyone and would do anything at all to have that possible, but I don’t think it is in his powers to have it done.

To make matters worse, I am so scared because I don’t even know how we are going to be able to go for the Coma either because we literally are flat broke.  We don’t have a single cent.  Therefore, I don’t know how my dad is going to be able to go to Mexico with me and then work as well at the same time because without him working, there will be no income to be made.  It isn’t like we have any “backup” money either to fall back on either. So I don’t know how we are going to survive with my dad not working and him being in Mexico with me.  We already can’t afford to pay the mortgage, utility bills, phone bills, etc.  We have a hard enough time putting just food on the table.  Never before did I think that my life was going to turn out like this.   I don’t even know how my dad’s company is going to exist without him being there to run it for the amount of time that he is going to be away.  There is just nothing left to fall back on.

I just want to get better so bad.  I hate what it has done to my family as well because they don’t even have money because of me.  We are really suffering and they don’t need to be suffering at all because of me.  You know?  Meanwhile… we can’t go out, go on a vacation (haven’t been on family vacation in like almost 10 years), can’t buy anything, can’t even go out for a simple dinner, etc.  My family had to literally give up everything because of me and are working harder than ever because of me.  Everything that they once had is now lost and even if they wanted to “retire”… they can’t because they can’t since they lost everything.  Everything is just maxed out and we are at the point where we never even know what the next day is to bring.  We can’t afford our health insurance, mortgage, heating, electric, utilities, phone, etc., which are all necessities in order to live.  I can’t believe what our lives have turned into.  Never in my life did I think that my life was going to be like this.

To make matters worse… we now have to put a tire on the car, which will cost more money and we all know putting tires on cars are not cheap.  Yet, we have no choice because without tires there is no way that the car can take us to my appointments or any other place I need to go. It just never ends.  It seems like everything revolves around money.  Everytime you try to save it… you need it for something else.

Things are really not good here.  I am trying to keep up my spirits, but to be honest… it is really hard.  I feel all “alone” in this battle and I am solo scared.  I am suffering so much, and I never been so sick and in pain before. I hurt from the very surface down to the very core of my bones.  My intestines constantly feel like they are leaking and I know that there is something wrong with them in the sense that there is a “twist” in them or a blockage because not only has it shown up on an X-ray, but I can feel it.  It has really been getting worse because I spend the entire nights and days in pain with my intestines and I can literally feel my intestines “oozing” and “leaking” inside. It is freaky and annoying and painful.

1658500_10101088840382130_1151687055_oNot only am I suffering physically in pain, but also emotionally I am not doing well either.  I feel like an ogre.  My skin literally sags on my bones because there is no muscle tone.  It really bothers me especially because I love to take pictures, as it is a favorite hobby of mine, but I am now so fearful and hate taking them because of the way that I look.  That is why I end up taking so many pictures of my pets.  I love to take pictures, but I am so self-conscious about what I look like.  I am so embarrassed and see myself looking like an “Ogre.”  Therefore, I literally end up airbrushing every single one and touching each one up before I let them to be seen.  But even with the airbrushing and touching… it still looks horrendous.  I hate the way I look. I am so scared that even if I should get better… the ogre will remain.

Not only do I look like an “ogre,” but I had to even cut my hair because of this illness.  I would do anything to have long hair.  However, due to my illness and medications, it has wreaked havoc on my entire body from my bones to my muscles to my organs to my nerves to even my hair.  It has literally taken over my entire body.  In terms of my hair, I used to have such wonderful gorgeous blonde hair.  However, the disease and medications have now caused my hair to thin and fall out.  It has gotten to the point where my hair has become so thin that it had to be cut short in order to actually look soughta thick.  I hate myself in short hair, but what other choice did I have?

1960808_10101085180920720_547243135_oI really belong in a forest because of the way that I look. It doesn’t really matter either because it doesn’t feel like I have a person in the world to lean on.  I can’t even talk to my parents because of the stress they are under. I literally have nothing going for me, as I can’t work, have no friends, can’t go to school, have no money to get well, etc.  I spend all my days basically cooped up in my house looking at the four walls because I am too sick to go out.  All I have is my cat and dog as “friends!”

I have ketamine tomorrow (Friday), so I am excited for that.  At least I will have one day of rest… well the hours when I am under.  I only wish I can stay under ketamine forever.  But just like everything else… all good things have to come to an end!  But hopefully everything will go smoothly.

Well I have bloods in the morning.  I wonder how bad they can be because they seem like they are never good.  It is at the point that the lab literally calls my doctor’s office and tells them that my bloods are not just “low” but I am listed as “critical”!

So much needs to be done, but I am at the point where I have exhausted all my resources in the area. The only thing I can do is travel to other places because they are more equipped to handle my condition.  I need to get to places that can better handle me like the Mayo Clinic in Minnesota, Stanford in California, and definitely Mexico.  However, going to these places aren’t exactly “around the corner” and they aren’t cheap either.  I am having a hard enough time paying for my medical expenses already; it is even harder when you have to pay for traveling expenses as well.  Plus when my dad and I travel, it is time my dad can’t work and as a result, no money is being made.

Doctors are always saying that I am a “time bomb waiting to go off.”  I know that I am worsening. I know that I definitely need something to be done sooner rather than later. That is why I need to get to Mexico.  I have a meeting tonight or tomorrow with my doctor from Mexico to further discuss everything, but it is getting to the point where they need a deposit and unfortunately, I don’t have that money as of now.

I am really hoping to go to Mexico. But like I said before, I am still far from my goal.  I know that you are extremely busy and I know that I am asking a lot, but I was wondering if there was any other ideas that you can think of that I can do to “fundraise”.  I am so far away from my goal of raising enough money to go to Mexico and to be honest with you… it is basically around the corner that I leave for Mexico and I can’t afford not to go.  I know that many people have helped out already and believe me… I can’t tell you how much I appreciate it, but I was wondering if you might have any other ideas about fundraising or if you were able to help me on any way possible.  Anything that you can do would be greatly appreciated.  If you have any suggestions, please email me at Femirsky@gmail.com.  I can’t tell you how much all that you have done means to means and how thankful I am for all that you did.  You are forever in my heart.

1602107_10101039548822810_1814389083_o

I also want to remind you that the “Help Fallon Fight” bracelets are continuing to be sold. They are $5 each and come in blue or pink.  If interested, please email me at Femirsky@gmail.com or send me a message on Facebook.

In the meantime, I am still trying to keep my spirits up.  I am busy reading James Patterson’s book called “First Love!” I am really hoping to be able to finish another book, which will be a great accomplishment for me.

But, reading isn’t going to get me to Mexico or get me well. I really need help from other in order for it to happen because I need medical treatment that we can’t afford. Please say a prayer, spread this post, and donate at www.gofundme.com/fallonmirsky. Please help NOW because time is of the essence and I don’t have a lot of it left!!

Thanks again for all your support.

Love,

Fallon

Leave a comment »

March 16, 2014

1262623_10101085180790980_1252186070_oHi-

I know it has been a little bit since I written, but I figured I would write and catch you up on all that has been happening. A lot has been happening since the last time I wrote, but I have unfortunately been too ill to write.  In fact, there has been so much happening that I don’t even know where to start.

I guess the best place to start is to say that I have spoken to my doctor in Mexico and the date for the Coma is pretty much set.  We have two dates in mind, but I am leaning more towards the latter date because of the fact that I want to be here for Mother’s day.  I want to be able to celebrate that special date with my mom because after all, this can very well be the very last holiday I can be celebrating because of the way things have been.  Also, if things don’t go well in the Coma, I don’t want to ruin her special day either.  I know it is just a “day” that can be celebrated earlier and on any other day, but she has given up so much for me already that I really want to make that one day special for her and I don’t want her to be “alone” on that day either since she won’t be making the trip to Mexico with me.

We have been given the option of two days to go to Mexico.  The first day is to go to Mexico on May 8th and go into the Ketamine Coma on Sunday, May 11th, which is also Mother’s Day.  The other option is to leave on May 15th and going into the coma on Sunday, May 18th.  It is only a week later and to be able to be home to celebrate Mother’s Day, I really think I am leaning more towards the latter date.

In addition, I am going to need a second person to come to Mexico when I am extubated because I will need someone to stay with me 24/7 for about a week. The doctors say I need another person down there besides my dad because they said it would be way too much for him.  So they will only go through with the Coma if I have someone with him.

Thank goodness my cousin will be coming to Mexico during that time to help out.  It will be for about a week, but I am so fortunate for him because this Coma definitely wouldn’t have been possible without him. The thing is that when I am extubated, I won’t know anyone… I won’t know my dad, the doctor, not even myself!  The ketamine will wipe out my memory and give me horrible hallucinations.  Therefore I will need someone to say with me all the time (even sleep at the hospital) because I won’t be able to be left alone.  They will have to help me get my memory back and be able to eat again.

henry ford quote puzzleBut of course both dates are contingent on the fact that we are able to provide the funds to pay for the Coma.  The Coma will cost us OVER $100,000 and although we did raise some money, we are far from our goal.  We have to may a deposit of at least $50,000 by the end of this month and I don’t even have that much money.  So I am hoping that I will be able to receive as much help as possible because unless I get the money to pay for the Coma and especially give them the deposit, I don’t think that this Coma is even going to be a possibility.

I need this Coma more than anything in the world and I really can’t wait any longer for it.  I am really not doing well and really deteriorating faster than ever.  Even the doctors say we can’t wait any longer.  It has gotten to the point where I am extremely weak and I can’t really even get off the couch.  I also cannot breathe and my organs are failing.  I barely can even go to the bathroom.  Eating is another task that is basically impossible and something that I can’t afford not to do because I weigh so little already.

In addition, the pain has been out of this world. The weather isn’t helping much, but the pain is uncontrollable that I am literally climbing out of skin.  Nothing is working at all to control the pain.  Even the lightest touch sends my pain soaring further. I have come to despise those three little words. I can feel the weather changing. Muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out.  I feel like I am on fire…especially my legs and feet.  It constantly feels like I am doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week.  It is so bad that nothing is tolerable on it.

To make matters worse, I am having horrible edema especially in my legs.  This is not a good sign because it can be a sign of heart failure, kidney failure, or liver failure, which are all organs that are giving me problems.  My organs are not doing well and my bloods are very critical.  Yet, even things that would perhaps alleviate the edema such as raising the legs won’t help.

Eating has been horrible, as I can’t eat anything.  The slightest thought of food… even something so simple as my medicated ice pops make me nauseous.  The only things that I can possibly get down are eggs and ice cream… and that is with a problem.

My intestines have been giving us problems as well.  I can’t go to the bathroom for the longest time and it continues to worsen.  I keep producing this mucous because I am so backed up that mucous keeps getting expelled.  It really stinks because it basically can come out anytime… even when I am sleeping.  The doctors and my parents have told me not to feel embarrassed because it isn’t anything I can really “control” but it still really bothers me when I “make” in my pants.  After all… I am 32 years old and shouldn’t be making in my pants.  When is this ever going to stop?

It just worsens and worsens.  To make matters worse… not only are we having problems affording the lifesaving treatment that I need in Mexico, as well as the current treatments and medications that are not covered by insurance in the United States, but also now we have had the additional problem about having problems with our actual health insurance.  To put it simply… we have had absolutely NO health insurance whatsoever.  Therefore, I had no coverage to get medications, see doctors, receive treatments, etc.

People don’t realize it, but when you have your health… you have everything.  Due to the expenses of my medical condition, we were a little late paying for the health insurance.  Well, of course they didn’t want to wait for payment and were quick to take it away. I guess that stupid money was more important than helping to “save” my life. Therefore, my health insurance refused to reinstate our policy unless we paid the amount that we were missing for the month and they tacked on that we had to pay a month ahead.  For us to come up with over $6000, it was basically impossible.  So I went through a period of no insurance, which was horrible because it really complicated. Yet, we really had no other choice because we didn’t have money to pay the amount that they wanted.  After speaking and pleading with them, they still wouldn’t give in to us. As a result, we had to literally scrabble for the money, sell whatever we could, etc.  My mom even ended up selling her wedding band, which is something I never thought she would.

1017139_10101083726076240_1720197714_nI have really been trying to keep my spirits up though even though it has really been difficult.  I try little things like make a mug up saying things like “I am the best” just to make me feel better.  I feel really worthless lately, as this disease really took away all that I desired to be. I had such goals of having a husband and kids, going to college and becoming a doctor, etc. but this illness has forced me into living a life that is confined to staying within the 4 walls of my home because of the pain and suffering it brings with it.

The only companions that I have felt that I have had throughout this are my pets.  They make the best if friends because they are always there for me.  They spend the nights and days with me and are my joys of life.  I only wish I could bring them with me to Mexico.  Whereas everyone walked out on me when I got sick because you really learn who your true friends are when you get sick, they have stayed with me throughout it all.

1909183_10101084233579200_605876158_oIt is definitely not easy always being “alone”.  Yet, having my pets make it a bit easier.  But I really wish that this disease really didn’t rob me of my social life and didn’t take the FUN out of my life.  Thank goodness for them.

I am also glad I have my animals because they have been my sources of comfort as well, as it has been very difficult to talk to my parents because they are under so much stress already that they can’t handle anything else.  I really also don’t want to further burden them with my problems.  My dad has really been trying to make ends meet.  He has been working harder than ever, which is pretty hard considering how difficult he already works. But with the weather being the way it has been in the sense that the winter has been so bad and long, the economy has literally shut down and my dad’s business is really suffering.  He works so very hard just to try to survive and make an income.  It scares me so much because it isn’t like he is sitting in an office and doing deskwork. Yet, he is 60 years old and running around.  Then he comes back and has to do the office work as well, as he is the owner and CEO of the company and has to make sure that everything is situated in the company and set up appropriately in order for it to function.  He works basically 6-7 days a week and he’s up at 3AM to go to work and whereas he used to come home at 6PM, he now even goes out on additional inspections afterwards.  He is so very tired.  Yet, he does all this to help the family… not to mention all the running around he does for me when I have to see doctors, go for treatments, etc.  Then when he comes home, he doesn’t rest either.  Instead, he dedicates his time to take care of me. I only hope that my dad will be ok because if anything ever happened to him, I would never forgive myself.  I know my dad considers himself “Superman”, but even Superman has to rest sometime.

On a better note, I finally finished a book. It was a real accomplishment for me because it was the first book I finished in such a long time… like over 5 years.  It was written by James Patterson and called CROSS MY HEART.  It might have taken me awhile, but at least I finished it.  I am now reading another one of his books called FIRST LOVE!  Hopefully I will be just as successful and finish that book as well.

I have been extremely thankful for the rainbow loom charms that I have received.  I am planning on bringing them with me to Mexico and decorating my hospital room with them.  This way when I am there (Since I will be there for sometime), it will look more comfortable.  I am also going to put them on the IV poles as well to help bring some happiness to such a scary situation because they are so cute and make me smile.  I am also using them as a way of “luck” because I read in a book when I was younger about this girl who was dying of Cancer and she was making 1,000 paper cranes for luck.  So I decided to modify that and try to make 1,000 rainbow looms.  It would be amazing if I receive that many.  I would love to make it myself, but they look incredibly difficult and I have absolutely no idea even where to begin.  They are also expensive and I can use the money for something else.  But I want to thank anyone who will be willing to make them and send them to me… especially the person who is organizing this.  At least they make me smile!

1966111_10101084500863560_1881607250_oMy mom also finally gave me a necklace that she wanted to give me for a while.  She was holding onto it for some time… and she finally gave it to me because she thought that the time was right.  I felt kind of guilty taking it though considering the fact that we are having all these financial problems and I could sell it or something to use the money towards my medical expenses, but my mom said that she wanted me to have it because it was a heart pendant that meant something to her.  It really is truly beautiful and I am so lucky that she gave it to me.  She gave it to me because she won’t be in Mexico with me when I undergo the Coma.  This way I will have something with me around me neck to always remind me of her and to have her always right by my side.  I love my mom!

Well… I have a busy week coming up.  This week I have an appointment with another bone doctor because I need to have my bones made stronger and my old doctor is too afraid because of the osteonecrosis. Yet it is the consensus of my other doctors that something has to be done because my bones are so weak that all I need is a life-threatening fracture, and I will be in a worse situation.

I also have another ketamine coma/infusion on Friday.  Thank goodness because I can’t stand this pain anymore.  At least when I undergo the ketamine I get one day of relief when I am “under”.  Too bad it doesn’t last.

I just want to get better so badly.  I hate what my life has turned into.  My life has really been turned upside down.  I even hate to take pictures of myself.  I mean I love taking pictures, but I just hate the way I come out.  People don’t realize how bad I really do look because they don’t realize that every single picture I send and they see are “touched up” because I hate the way I look in them.  Since I am so thin and have no muscle tone in me, my skin literally just sags on my bones.  My face is just full of wrinkles because it has no fat to fill it out.  So I airbrush all the wrinkles out and try to conceal all the stuff that I am ‘self conscious’ about.  My parents keep saying that I am beautiful, but I feel like a hideous beast.  Between the colorful changes this illness has given me, the swelling, how emaciated I look, etc., I really don’t consider myself beautiful anymore.  I only wish that one day I would be beautiful again.  It scares me though because I don’t want to chase people away based on how I look.  After all, even though people don’t want to necessarily admit to it… appearances do mean a lot and go a long way.  I can’t tell you how many stares I get when I change colors or because I look so emaciated.  It really stinks.

1391429_10101085503868530_351517363_nI only pray that one day I will get my life back.  I pray that all my pain and suffering ends.  I pray that I get my dream of becoming a doctor fulfilled so that I can help others who are suffering. I pray that I will not be a burden on anyone… especially my family.   I pray that I will be able to be “touched” without pain searing through my body. I pray that I will be able to have a family of my own with a husband and kids.  I pray that I beat this and lead a long and happy life.

So I am just focusing on May and hoping and praying that I will have the funds to undergo the Ketamine Coma.  I don’t know what will happen if we cannot do it because of insufficient funds.  That is why I am begging for all the help that others can give me.  Please help make a difference today! I desperately need your help to receive lifesaving treatment that we can’t afford. I need expensive treatment especially a radical ketamine coma in Mexico that’ll cost over $100,000. Please say a prayer, spread this post, and donate at www.gofundme.com/fallonmirsky. Please help NOW because time is of the essence and I don’t have a lot of it left!!

Thanks again for all your continued support.

Love,
Fallon

Leave a comment »

March 5, 2014

1973441_10101076307198730_199068122_oHey-

Just wanted to update you briefly!

It is March 5th and from the looks of the weather outside… you would never know it.  When is this weather going to end?  Not only is it unbearably cold, but also it is wreaking havoc on my body.  I really need some warm weather so desperately.

This weather has to let up soon or it is really honestly going to kill me. When we went to the vascular surgeon today, the doctor told me that since the winter has been so relentlessly cold with no real “warm-ups,” it really has affected me. He had confirmed that the cold has caused my circulation to really shut down and that is why my foot and left leg is blacker than ever. This winter has been like no other winter that we have had.  It has been so cold and it has basically had no “breaks.” Therefore, my body is really reacting to it.

So the circulation worsening is contributing to the weather, but it is also because of my over all disease worsening as well.  My body is deteriorating and my organs are shutting down.  It was confirmed also that my organs are shutting down worse than we thought and therefore my circulation is also being affected.  In addition, the added stress of all that is occurring with my illness and because of being so worried about what is going to happen with Mexico and worried about the medical expenses isn’t helping either.  Everything is just causing me to deteriorate further and causing my circulation to worsen. However, I really have to be careful because it is at the point now where the circulation is so bad now that not only am I discoloring, but also unlike before where I would just change colors and sometimes resume somewhat normal coloration at rare times, I am darker than ever and it is remaining black no matter what I do. This is definitely not good because dark/black means no oxygen and tissue dying. It is when body parts remain black that the doctors are extremely worried and amputation becomes a real concern and possibility.

Therefore, the doctor really wants to start putting me on a new medication called POT.  You might also know if it as Marijuana.  I couldn’t believe that the doctor actually suggested this to me.  He said, “The disease has gotten so severe that I think that the only thing that can possibly help is marijuana. At least it will help with the pain to some extent.  It has helped in certain situations where people have had the most horrendous pain from Cancer and other diseases and nothing else has worked.  Even though it won’t help per se ‘cure’ your illness, at least it will make you more comfortable.”  I have really been on everything under the sun and I already take over 50 pills daily.  However, I continue to suffer and I am being tortured 24/7 with absolutely no relief whatsoever.

There are only 2 problems that stand in my way.  One problem that stands in my way is that I of course don’t have the funds to pay for it.  Of course this is not going to be covered by insurance and therefore, it will have to come all out-of-pocket, which is something we definitely can’t afford.  The bills are skyrocketing and snowballing all out of control here that we can’t even pay the mortgage, electric and heating bill, put food on the table, or even pay for my other medical expenses.  Not to mention that I desperately need to go to Mexico, which is less than 2 months away and I need to come up with over $100,000.  That is why I so desperately need the help of others.  If you know any fundraising ideas or possibly can share my website for donations, I would really appreciate it.

Another huge problem that stands in my way is that it is illegal in New York.  Even though I need it for medical reasons, it is still illegal.  The doctor told me to go to a state such as California to get it, which it is legal in, but that doesn’t really solve the problem because I live in New York and still can’t bring it back. Why can’t New York legalize Marijuana already for medical use?  So many states have already done so.  Even Jersey has.  So I don’t know what to do. The doctor really thinks that this is what it has come down to because I have gone beyond traditional medications.  Even though I am rapidly deteriorating, the doctor wants me to at least be ‘feeling’ better!

In addition, the doctor also noticed that I have a plantar wart on my left foot. Never a dull moment! The problems just keep adding up!

This is definitely not good because my left foot is where the illness is the worst and I can’t afford for anything to touch this foot.  I am so hypersensitive that I can’t be touched anywhere in my body… let alone my left leg and foot.  The slightest touch will literally send me up the wall.  So for anyone to even touch my left foot to treat the plantar wart will literally be impossible.

In addition, the skin on my body because of my illness is extremely thin.  It is even thinner on my left foot because of the nature of the illness being worse there.  Therefore, if anything happens to even bump my body, especially my left foot and leg, my skin will instantly open up.  This is not a good sign because not only will it cause me excruciating pain, but also I can’t heal like a normal person.  I risk the chance of getting infection so much and they are so fearful that it won’t heal at all.  The doctors are especially fearful of any cuts happening in my left foot because that is where the circulation is the worst and if anything happens there, it is quite possible that it can lead to an infection, which would lead to gangrene and then result in amputation.  So we really don’t know what to do because we really don’t want to risk getting an infection and having my foot amputated.

It appears that the plantar wart in my foot is extremely deep and big.  The roots go really deep and it really should be removed. However, the surgeon said that in my case, he doesn’t know what to do.  He said that he doesn’t really want to remove it because of the fact that it is not only going to be excruciating painful for me, but because it entails scraping and such, it will easily open up my skin for a possibly infection, which is extremely likely in my case.  However, it is a huge problem because not only is a plantar wart an infection of the skin and a benign growth, but also they are also painful.  So it only adds to the pain that I am already experiencing, as people who get plantar warts may feel as if they have a stone in their shoe.

So we don’t know what to do in this aspect. I guess we are just going to have to figure this out!

Well… in a few hours (since it is the middle of the night and I am like the only one awake because normal people are usually sleeping at this hour) I am going to be on my vacation from life.  I will be undergoing a ketamine infusion/coma for the day and at least I will be away from my life for the day.  This is the only time I can get relief and I look forward to it so much.

If only the ketamine would last.  Unfortunately I need a dose that is way too high and it isn’t FDA approved.  That is why I need to go to Mexico to have the ketamine coma performed there because the amount I need can only be given there.  When I undergo the Ketamine in New York, it barely lasts longer than when I wake up.  People might wonder why I put myself under the risk and go for it at all if it doesn’t even last beyond waking up.  I go for it because at least while I am under, I am at least at peace and away from this torturous illness.  I am out of my Hell for the time I am under the ketamine, which is for quite a few hours.  When you are suffering like I am, you will take any relief that you can get… even if it is a split second.  Also, even though the suffering comes back basically immediately, we are still hoping that it is slowing down the progression of the illness and “buying” me time.

So dad will be taking me in a few hours to get the ketamine.  Thank goodness for my dad because I don’t know what I would do without him.  He is so amazing.  I only wish I didn’t put him through all this because he doesn’t deserve this.  He is 60 years old and deserves to be enjoying his life.  But instead, he is working harder than ever and he can’t even enjoy his life.  He barely can rest, can’t go on vacation, can’t buy himself anything, can’t go out to dinner, or anything else that a normal person would take pleasure in.

My dad is really something else!  He is not only my dad, but he is my best friend, confidant, someone I admire, and my Superman.  But I only wish I could get better because I am so afraid that he is going to have a heart attack from all that he is doing.  After all, he is no youngster and he is so overworked… not to mention how stressed out he is.  But there is nothing that he wouldn’t do for me to try to get me well.  He wants to get me well so badly and it kills him so much that he can’t get.  He constantly tells me how he wishes that he could take the disease away from me or that he wishes he could ‘switch places’ with me.  I tell him though that even if he did, he would never be able to handle this.  He may be Superman but he wouldn’t be able to handle this for more than a second.  He would gladly give this back to me immediately.

1655792_10101076228521400_917636827_oBut I only wish I can get better so that I can not only enjoy my life and get back all that was robbed from me by this illness, but I want my dad to be able to enjoy his life as well.  I want to do so much with my dad and I want to be able to even have him around to see me become a doctor, walk me down the aisle, etc., which I know is probably only going to happen when I get well.

So we will be off to Ketamine together in a few hours.  Going for ketamine doesn’t just help me, but in a way it helps dad too because dad is able to finally ‘rest’ when he takes me.  After all, I am there for basically the entire day and therefore he ends up resting and sleeping. What else is there to do while I sleep?  I pack him a snack bag, he brings the paper, and he is all set!  Even though my dad is Superman, even Superman needs to rest at times.  Since he works so very hard and so many hours of the day, at least he gets this time to rest.  In fact, when we went to the vascular surgeon today, he fell asleep waiting for the doctor because he was so tired.  He was so tired that he even was snoring.  I videotaped him to show him because I knew he wouldn’t believe me.  This way I didn’t just have the proof that he was sleeping, but that he was ‘snoring’ too.y dad to be able to enjoy his life as well.  I want to do so much with my dad and I want to be able to even have him around to see me become a doctor, walk me down the aisle, etc., which I know is probably only going to happen when I get well.

I also got an amazing gift today from a dear friend.  I received some little knickknacks that someone made me from scratch.  You know those rainbow looms?  Well, I was fortunate for her to make me quite a few things such as a panda, bracelet, peace sign, etc.  I am so incredibly thankful for the lovely things she made. I’m decorating my IV poles and going to bring then to Mexico with me. This way I have a little touch of home to bring with me for luck!!  I remember reading a book that entailed a girl who had cancer and she built 1000 paper cranes for luck.  Well, I was 1966817_1457097984520534_1650326707_nthinking of doing the same thing but I was going to make 1000 rainbow loom critters.  I was going to then bring them to the hospital with me.  However, not only does it looks very complicated, but it is also expensive, and I don’t have the money to waste on rubber bands.  But it would have been a nice idea to do because not only would it have been nice to bring to the hospital and decorate the IV poles and room, but also it would have given me something to do.

Well… I am going to get going.  I will write more when I know more. Just a tidbit reminder like always that “Help Fallon Fight” Bracelets are still continuing to be sold.  They are $5 and come in pink or blue.  Contact me through Facebook or by emailing Femirsky@gmail.com, if interested.  All money goes towards my medical expenses!  Please also email me if you have any further fundraising ideas.

Thanks again for all your support and encouragement.

Love,
Fallon

Leave a comment »

March 4, 2014

1959318_10151995819238284_493937604_nHi-

I am just having one of those weird nights, so I figured that I would write and explain a little what has been happening.  I have received some bad news today and I will be heading in the morning to a vascular surgeon.  So I thought maybe also it might   clear my head a bit and let me sought a few things out because so many things are happening and I am so mixed with so many emotions.  I am not doing well and things are continuing to get worse and worse.  I can’t actually remember being pain free; I mean I can remember a date, but not the feeling. Pain has become the norm; it’s a constant companion.

I am having one of those nights where I want to get better so badly that it hurts.  I want to get better so badly that all I can think of is all the things that I am going to do when I get better.  I just hope that I am able to get that chance.  I have been feeling really down lately to be honest with you… thinking about all the things that this illness has robbed from me.  I don’t even know where to begin with what this illness has done to me.

I never thought my life would be like this. I can’t believe that once led an active life, as I figure skated, rode horses, and even played soccer. Yet, now I am totally incapacitated.   The disease has taken over my entire body and even involves my inner organs, which is extremely rare, and doctors have confirmed that I am the worst case to ever exist. I used to have big plans.  I wanted to get married, have a family, travel, become a doctor so I could help others, etc.  But all this now is put on hold because of this horrendous disease.

I’m having trouble finding the words to even describe how horrible the pain is!  If you name a type of pain, I guarantee I experience it.  I get crushing, burning, tearing, stabbing, slicing, heavy, aching, pulsing, throbbing, shooting, boring, sharp, gnawing, stinging, splitting, exhausting, sickening, suffocating, terrifying, vicious, blinding, intense, unbearable, radiating, piercing, penetrating, tight, cramping, horrible pain. It’s all those things and more. Imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out.  That is how my entire body feels all throughout.  RSD is ranked on the McGill Pain Index as the MOST PAINFUL form of pain that exists. To put it in perspective… Arthritis pain is ranked about a 18, Cancer pain a 24, Chronic Back Pain a 26, and then RSD is ranked a whopping 42 a pain that is worst than amputation, childbirth, etc.   The only thing close to the pain I experience on a daily basis is the amputation of a finger and that is quick; my disease is 24 hours a day, 7 days a week.  It is a pain like no other.

Right now every single muscle in my body is aching. My left leg is cramped up and curled into an awkward position.  My skin is very sensitive and every time something touches my skin it’s agony. Deep in my arms it feels like there’s something shooting through them, tearing everything it passes, along with hot pokers being shoved into my elbows. Then there are my joints, they pop or crack with almost every movement, they swell, they’re stiff, I get too cold they stop moving, I get too hot they stop moving it’s a delicate balance.

I also have severe allodynia, which is extreme sensitivity.  Now, because of the allodynia, any normal touch causes my pain; clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by me in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. I am totally sensitive to touch especially on my left leg and foot, and I have spasms throughout my body. I get spasms not only in my body but in my inner organs as well such as my bladder.  It feels like all of the muscles are being torn off the bone. My left foot is so swollen that I can’t wear a sock or shoe. If I hit it on something, the thin skin will split open.

Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain. In addition to the enormous pain you are already experiencing from RSD itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer.

Besides being in pain all the time, there is so much else that has been robbed from me.  I’ve been on crutches for the longest time and it is only a matter of time until I am forced into a wheelchair, which I have been fighting. I’m unable to weight bear at all on my left leg and I can stand on my right leg for a very limited time but only with a stick and physical support from another person. My left leg is currently in constant spasm.  I can’t eat or drink!  I can’t shower!  I can’t be touched! I can’t sleep! It constantly feels like I am being stabbed with a hot poker. If the weather is humid, my skin turns bright red and is hot to the touch. I constantly get strange glares because of the changes that occur in my skin color. My feet also get extremely cold really quickly, but this isn’t just normal cold, as I am cold right down to your bones. It’s like you’ve been out in the rain in the middle of winter for hours the only thing that will warm you is hot water, which of course I can’t tolerate.

I am just so exhausted, as energy is severely limited, even on a good day. If I do anything for a long time, say an hour or so, and it wears me out even if it’s just sitting on the couch. Every movement draws from my supply of energy, every time I try to concentrate on something it drains some more, I can’t do anything without it affecting my energy levels for the rest of the day and often even for the next couple of days. If I do too much I end up not even being able to sit myself up, I become reliant on my family for everything, it can sometimes take weeks to recover.    I live a life that is alone, watching others flourish while I stay behind in the dust, and a life that is filled with tormenting agony 24/7 because I constantly feel like I am in Hell by being struck with the most horrible pain you can imagine!

Even though I very rarely do get “good days” and living my life seems a bit grim, I am still continuing to push on because I don’t want the “poor me” syndrome.  I desperately want to get better.  I desperately want to regain all the stuff that I lost out on.  I want to be able to have that life that was taken from me and have a family, become a doctor, and do everything else that I dreamed of doing.  Therefore, I am really hoping to be able to undergo that radical ketamine Coma in Mexico.

The radical Ketamine Coma in Mexico is my only chance of living. There really isn’t much else that I can do to combat this illness, as I have tried every other treatment modality. I desperately need that radical ketamine coma in Mexico as soon as possible because it will actually “reset” my entire nervous system and hopefully cure me.  It is like my only hope!  However, we cannot afford it alone, as it will cost over $100,000. That is why I am so desperate for the help of others.  I know that without this coma, I am not going to make it much longer and I really don’t want to die.  I have too much to live for and I really want to get better so badly.  I really want to get better so that I can make a difference in society and get back all that I have been robbed of by having this illness.

But I know I need this help as soon as possible because I am really deteriorating and deteriorating fast. My body is shutting down and I desperately need this lifesaving treatment.  I also need help in paying for my medical expenses, as we can’t afford even the current treatment and medications and appointments that I am receiving in the United States.  I desperately need this treatment to help keep me alive, to keep my as comfortable as possible, as well as to “buy” time until I am able to get to Mexico.  I am supposed to be undergoing the Ketamine Coma May 1st, but if I don’t have the funds, I won’t be able to do it.  Therefore, I am praying that all will work out.  If you have any fundraiser ideas, please don’t hesitate to email me at Femirsky@gmail.com and let me know.  If you can please spread the word about donations needed to save my life, I would appreciate it.

In the meantime, I am progressively getting worse.   I am going in the morning to a vascular surgeon because my left leg is completely black.  We are not sure why it is remaining so black, and we are scared because black means that no oxygen is getting to the tissues and it is dying.  I recently went for Hyperbaric Oxygen treatment in hopes that oxygen can be restored and blood flow could be resumed, but nothing was accomplished.  In fact, I took a before and after picture and there was absolutely no change.  When I actually showed my dad the picture after the treatment, my dad didn’t even realize that it was the “after” picture because there was absolutely no change.  Usually the coloration gets better because the chamber causes more oxygenation into my tissues.  So when I still saw the blackness and that there was absolutely “no change”, I was really scared.

We really need to have it checked out because I don’t want to lose my foot.  Turning black could also mean that it is going “gangrene” and it needs amputation.  This would not be good because you can’t just cut off my leg or anything because this disease is a disease of the central nervous system and therefore, it encompasses the brain, spinal column, and entire nervous system.  So typically if you even amputate the limb or anything… it will continue to spread and even spread even worse.

In addition, I am also scared that the blackness means that there is something wrong with my heart.  I already know that my heart does have problems and is weak.  I did receive my bloods back today and it came back abnormal.  My bloods have gotten worse and one value that worsened as well was the carbon dioxide level, which means that I am not getting enough oxygenation.  So I am scared that this blackness could mean something more seriously wrong with my heart is occurring.

So I guess I will find out in a few hours hopefully what is going on because I have an appointment with the vascular surgeon.  I am really nervous because I really don’t know what to make of the blackness. I am used to changing colors and for my body to even go to black at times, but this is remaining black at all times.  It never has done this before.

I have also been getting sicker in other ways as well and I don’t know if it could mean anything.  I have been extremely weak lately and barely able to even stand up.  I don’t know if it is because of my illness or because maybe because I have lost weight, which is a major problem because any weight being lost when you only weigh in the 60s is a major problem.  It is really a matter of life and death when you lose even an ounce.  I definitely can’t afford for that to happen.  I just can’t keep my weight on.  I also am having a hard time going to the bathroom, as I think my kidneys might also be failing me. They have had problems in the past and I was on medications for them, but it has gotten a lot worse.  I am going to have to make an appointment with the kidney doctor now because of all that is occurring.

Gosh… so much is happening… between going to see the vascular surgeon, having to now see the kidney doctor, and I still have to find out what to do about my intestines because I am bleeding and can’t go to the bathroom either. I am just so tired already.  I am holding on and pushing forth, but I am weakening.  I really need to remain as strong as possible for the Coma, but it is getting harder and harder.  That is why I also need to have it ASAP.  I can’t afford to put the coma off longer than May 1st.  My body won’t make it much longer.  So as I said before, any help that you can give in helping me get the necessary funds for the treatment, I would really appreciate.

At least tomorrow, Wednesday, I will be out of pain for the most part.  I have a ketamine infusion/coma for the day.  Even though it definitely doesn’t last, at least it takes me out of pain for the time that I am “under”.  I will take any relief that I can get.  We are also hoping that even though it doesn’t last long with the pain relief, we are still hoping that it slows down the progression of the illness.  I need a dose that is so much higher and that is not FDA approved.  That is why I need to go to Mexico to get that amount!  Sometimes I only wish that I could live in a ketamine coma because at least I won’t be in pain!  I can’t take the pain anymore.

1975211_10151992893038284_929536637_nWell… I am going to get some rest.  I will let you know what happens with the vascular surgeon and the other appointments when I know more info.  Thanks again for all your help and support.  Remember… “Help Fallon Fight” Bracelets are still continuing to be sold.  They are $5 and come in pink or blue.  Contact me through Facebook or by emailing Femirsky@gmail.com, if interested.  All money goes towards my medical expenses!

Love,

Fallon

Leave a comment »

Follow

Get every new post delivered to your Inbox.

Join 561 other followers