FALLON MIRSKY

Please help SAVE MY LIFE!

January 30, 2014

1548212_10101044763213130_550662907_oHola!

Finalmente estamos en casa. Ha sido un largo viaje a casa, pero finalmente lo hizo. Gracias a Dios. Pero a pesar de que estoy en casa, echo de menos México. Sé que mi sueño más grande y mejor regalo que podía recibir está allí.  In English… “Finally we are home.  It has ben a long trip home, but we finally made it.  Thank goodness.  But even though I am home, I kind of miss Mexico.  I know my biggest dream and best gift I could ever receive is there.”

We ended up taking a different flight home because our original flight went through Atlanta, Georgia and they were getting a huge ice storm and we didn’t want to get stuck.  So we decided to leave the night before and avoid Atlanta.  Even though it was not the best option for my body because my disease really worsens as the day progresses, I really had no choice.  It was either leave at night and suffer, or basically risk having our flight canceled and getting stuck in the airport.  I definitely couldn’t afford for that to happen so there really wasn’t any choice.  So… we have been traveling and been up forever.  We left Mexico at 9:00 PM and didn’t arrive at JFK until 7:30 AM.  Some might think it would be better because it would be a ‘night’ flight and you could sleep on the plane and such, but for me the nights are absolute “hell” on me.  So… to have to travel, which is already torment and then compound that by the fact that it is nighttime… you can imagine how much pain and agony and suffering I was in.  I couldn’t wait to get home.  The only thing that kept me going was the thought that this was better than getting stuck in the airport with no place to go.

What a trip it was home!  It also was so cold yesterday in Mexico, as they were having a cold spell.  Usually Mexico is in the 80s.  Yet, it never came out of the 40s.  The airport was so cold and it had settled into my body. This was not a good thing because between my illness acting up in general and then the coldness, my body really started to “shut down.”  My dad and I really thought when we were waiting for the plane to leave in Monterrey that we were going to end up in the hospital.  I was declining really fast from my overall disease, as well as from the coldness settling in.

My dad was doing anything and everything to keep me warm, but nothing was working.  He walked me all over the airport searching and searching for warm places.  He even put me in a “cubby.” But Monterrey’s airport basically is all made of glass windows, so when it is cold outside, it is cold inside.  Plus having the doors open from the jet ways don’t help! At least I knew that if anything did happen in Monterrey, I would be in good hand because the best doctor in the world would be there to treat me.  I knew that Dr. Cantu would not let anything happen to me. But of course I still wanted to get home and not go that route.

We had a stopover in Mexico City and when we went there, my dad and I were a little bit more fearful of something happening.  We knew at least that if something happened in Monterrey that if something happened I would at least have Dr. Cantu there to help me.  Yet, we knew no one in Mexico City.  We couldn’t wait to get home.

We don’t know how it happened but it just so happened that we had the best seats on the plane.  At first I was a little upset because we were given the first row, which meant that armrests didn’t go up and I couldn’t comfortably lay against my dad.  Nor did we have seats in front of us so that we could put our baggage underneath, as I hating putting one of my carry-on baggage overhead because I need to use it throughout the trip.  But luckily, no one sat in the middle seat of our row and therefore, we put everything on that seat and covered it up with a blanket so that the flight attendants wouldn’t know we had it there and wouldn’t have to put it in the overhead compartments.  In addition, even though we had the very first row, which not only meant that we had the most leg room, but we were the only ones that had a pillow, were given a meal, and had a TV to watch.  I wondered why we were the only ones that were given options and when I asked my dad, he said, “its because they don’t want you to look at a wall.”

1414968_10101044028879740_1520030348_oEarlier that day we toured the hospital that I would be hospitalized in. I am going to be the very first patient to have the Ketamine Coma in this hospital even though I am going to be the 38th patient ever to have the Coma and will also have the same team that did the other patients.  I must say though that I was quite impressed with this hospital.  We were so fortunate because the wife of one of the doctors on my team, who was also a person who worked in the infectious disease department, gave us the grand tour and showed us everything, as well as answered any questions that we may have had.

We were really impressed with the hospital.  The hospital will be Santa Engracia, which is also known as CIMA.  CIMA Monterrey is a 70-bed hospital with six operating rooms and it isn’t far from the hotel, which is good because it will make it easier for my dad to visit me.  One of the top hospitals in Mexico, it employs the best board-certified surgeons and physicians. More than a quarter of CIMA’s staff speaks English, which is a very high proportion for a hospital in Mexico.  Hospital CIMA follows standard US protocols on patient care, infection control, and has a very low infection rate of 0.002%.

I honestly feel more comfortable being hospitalized in this hospital than in a hospital here in the United States.  When they showed me the exact room I would be in when I was in the ICU, it was simply amazing.  The room was so spacious, and they had so much equipment to monitor every aspect of me.  I was also shown the room that I would go to after the ICU.  All rooms were private and they were so nice that they looked like hotel rooms.  There were couches and pullout sofas so that my dad would be able to sleep there with me.

I am not going to lie when I say that I am “not nervous” about having this Ketamine.  I am extremely nervous.  After all… so many things can happen and I can easily die.  This is a very radical, risky, and dangerous procedure, but I am more afraid of living like this.  I am also afraid that by not having this done, I won’t have long to live because I am rapidly deteriorating and my body is literally shutting down.

I am undergoing so many risks by having this Coma besides having that huge risk of never waking up.  But, I am willing to put them all aside in a chance to have my life back.  I asked the doctors when I saw them the day before on their opinion about what they would do.  I asked them if “would they have the Coma if they were in my shoes” and they said they definitely would because the “benefits far outweigh the risks.”  When I went for the tour today, I again asked Norma, who was the wife of the doctor on my team that was giving us the tour.  She also said that she would definitely go through with the coma and that she would be at the hospital all the time to keep a close eye on me.  She said that she would be my “guardian angel” while I was there.  She also told me that even though that the doctors had to tell me all the risks and dangers of having the coma such as death, having the tracheostomy, infection, the hallucinations, paranoia, etc., she did say that I was in the BEST of hands.  She really didn’t have to tell me that to convince me though because I already knew that I was.  Dr. Cantu is like no other doctor I have ever met.  He is the BEST doctor I have ever met and I never felt so comfortable with a doctor.  I also know that even though these risks are possible, I know that I am in the best hands ever and Dr. Cantu would not let anything happen to me.

Dr. Cantu is such an amazing doctor that he didn’t even let us leave the hospital without seeing us.  Even though he was in the operating room, he wanted to be paged and to see us before we left.  What doctor would come out of an operating room to see a patient like that?  I was really shocked.

So right before we left, we went up to the ORs and saw Dr. Cantu.  Since we were leaving later that day we said our “goodbyes” and also said that we would be in touch.  We also said that the Coma will be most like May 1st because it really needs to be done as soon as possible, but he also understands that time is needed to raise some money as well as get things organized such as the tests needed and for my cousins to get their passports and such because they are needed to be in Mexico when I am extubated.  As always, Dr. Cantu referred to me as “ERICA” and I told him to remember that he can call me that all he wants and I will permanently change my name if he gets me better.  He also told me that we were a team and if I ever needed anything to call him.  I must say though that I was a bit misty eye when I left him because I really didn’t want to leave the best doctor that I had and the only one who understood me.  At least I know though that I will be returning to him (hopefully) and he is only a phone call away.

When we got back from the tour of the hospital, we went to have ‘breakfast’ since we couldn’t have it beforehand.  My Spanish has been getting better and better.  I never realized how much speaking a new language in the country that you are visiting changes the experience.  Not only was it such a great experience being in Mexico, but also I greatly loved it because I got to speak Spanish. On the other hand, my dad was a bit frustrated at times because he couldn’t understand or talk as much as he would have liked because he didn’t really know Spanish.  His Spanish vocabulary consisted of very few words that he just continued to say.  I was the translator for both of us and every time he needed something I would hear, “Fallon… you tell him!”

1064537_10101044016803940_179933476_oIn fact, one of the biggest things my dad wanted to know was what was on the other side of the mountains, as they surrounded us. However, he couldn’t find out because he couldn’t ask anyone.  So when we were in the taxi (we had a personal car driver that we always used because it was arranged by the other patient that had the Ketamine Coma in the past), I asked him since I could speak better Spanish and my dad found out that on the other side was San Pedro.  My dad found out that Monterrey was like a Valley, as mountains surrounded it.

I never really realized how much Spanish I could really talk until I had a whole conversation with the driver to the airport.  I literally was able to talk with him the whole way and talk to him about various things.  I was pretty impressed with myself especially since when we arrived I basically couldn’t speak anything.  Even though I took Spanish in school for so many years, I was away from it for so long and I really forgot how to speak it.  But I guess it is like riding a bike… you never really truly forget it and once you get started, it all comes back.

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My dad and I were really impressed with my Spanish when we went for breakfast because I was able to negotiate with the waiter to have eggs for $4.   I barely eat because of my extreme Gastroparesis and it is even hard to get down egg whites.  However, they are one of the limited things that can slide down to a point.  So when I asked them for 2 hardboiled eggs so that I could just have the egg whites (not even the yolks), they wanted to charge us $8 per egg in US dollars.  Can you imagine? You can buy a whole case of eggs for less than that.  There was no way we were going to pay $8 per egg.  But with my Spanish, I was able to explain to him how detrimental it was that I had these eggs because of how sick I am and how I really can’t eat anything else.  I couldn’t believe how well I did because he ended up giving us both eggs for $4.  Thank goodness because otherwise I was going to go without because there was no way I was going to spend that much money on eggs. What was I crazy or something?

In fact, we don’t know if it is just a ‘flare up’ or if it is that my illness has gotten again progressively worse in this area as well, but I am having a very difficult time swallowing anything… both medication and food. Even the limited medication and food that I was able to swallow before is basically impossible to do now. 

I am really scared because not only was I having even more difficulty swallowing in Mexico, but I am continuing to do so now.  I thought that it was just occurring in Mexico because of the the trip and possibly because it was food from a different country, but it is still occurring now that I am home and resuming the food and drinks that I normally used to have. This really worries me it wasn’t like I could swallow a lot of stuff before.  I keep hoping that it isn’t my disease worsening and that it is just possibly a ‘flare-up’ but I don’t know what will happen if this continues to happen because I literally am having trouble swallowing anything.

I must say that overall the trip was very nice.  The hotel was gorgeous and the people there were so accommodating.  When we were packing to go home, they came and delivered these Mexican cookies to our room.  They are really delicious from what I heard because I of course packed them to bring home and gave some to my mom.

774236_10101045652930130_317300747_oI really wanted to get a souvenir from Mexico.  I didn’t think it was going to be so difficult though to get one.  I was quite surprised that hospitals in Mexico don’t really have gift shops.  So I ended up buying something in the airport.  I really wanted to get a sweatshirt or a mug, but unfortunately they didn’t have any sweatshirts and the mugs didn’t look like they were so dishwasher safe.  So I ended up getting a little tiny cup that was hand painted and said “Mexico”.  I also exchanged some money into Pesos to keep.  I also took some pictures and tried really good to edit them and touch them up as much as possible to look ‘professional.’  I used filters and everything.  So I am also going to make an album to remember this trip as well.  I am also going to try to make a YouTube video of it, so be on the lookout for it!

Well… I guess that is about it for now.  All that I can do now is hang in there and hope and pray I make it back to Mexico.  I really need to go back because my life depends on it.  It honestly does feel weird to be home.  From speaking Spanish so much in Mexico, I sometimes find myself thinking of what I want to say now in Spanish and sometimes going to talk in Spanish despite the fact that I am home.  I even have been having dreams when there are a bit of Spanish language in it.

1519370_10101044026619270_1658284493_oAt least now that I am home I can go back to talking on the phone.  Since we were out of the country, the only contact we had with anyone was through Wi-Fi, which meant through texting or the computer.  So I constantly was on the computer and texting home because my mom was home while my dad was in Mexico with me and I greatly missed her.

It is going to be a long night.  I am getting severe cramps and spasms throughout my body because of my illness.  Dr. Cantu was actually the first doctor to explain to me why they are so bad after traveling.  I really have dystonia as part of my illness, which causes the muscles to contract and spasm involuntarily.  It gets so bad because my traveling exacerbates my illness and autonomic dysfunction immensely and therefore the dystonia is exacerbated as well.  So as a result, I get these killer contractions and spasms that don’t let up.  I basically look all contorted and such.  They are particularly bad in my legs and in my calves and ankles that my ankles are literally inverted.  It makes walking basically impossible and I can’t even use my crutches to walk either. These are the spasms and contractions that wake you up from the dead of night and you have to literally walk them out because nothing you can do really stops them.  However, in my case, that doesn’t even help.  It is just plain torture.  It is like my body punishes me for traveling.

Next week is my birthday (February 7th)… so you can bet you know what I will be wishing for.  I am not really honestly expecting much because we didn’t celebrate Thanksgiving or the holidays because of lack of funds… so I doubt we are going to have money to celebrate my birthday either.

1602127_10101039391692700_874790554_oRemember… Please help me get the very life-saving treatment that I desperately need. The bracelets r here and are $5. The bracelets come in 2 colors (pink or blue) and in youth or adult. If interested in buying or selling, please email at Femirsky@gmail.com. You can send a check via snail mail to the address I give you or deposit the money at my website and I will ship you the bracelet.  However, I need to know your information such as your name, address, how many bracelets, and the color/size.  So please email me if interested.  All money goes towards treatment for my illness. Please share this link!

Hasta luego (Later)!

Erica (Fallon)

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January 28, 2014

1557250_10101043092466320_330945438_oHola!

Es un “go!”  Ya es oficial.  Estoy muy emocionado, pero muy nerviosa también.  Pero yo sé que todo va a estar bien.  Yo estoy en el lugar correcto y todo va a estar bien.  Este es primer paso de mi nueva vida.   In other words… It is a “Go!”  It is official.  I am very excited, but also very nervous.  Yet, I know that everything is going to be ok. I am in the right place and all will be ok.  This is the first step of my new life.

Well… another day here in Beautiful Mexico and I have so much to say because I met with the doctors for the Ketamine Coma.  I can’t believe how much has changed in just a day!  First of all, my Spanish has greatly improved, which will come in handy especially now that we will be returning because the coma is an official “GO!”  Even though I knew that it was going to happen before, it was never official until I met with the entire team and they all saw me because I always had a fear that once all the members on the team saw me… they were going to change their mind.  I am so used to having my hopes squashed and having someone pull the rug out from underneath me.  But I no longer I have to worry about that part because it is official… I will be undergoing the coma! It is a GO!  Well it is a GO as long as I can pay for it!

What a day today has been.  I have been so sick today.  Between the traveling, my overall illness, and we think possibly I might have picked up something in Mexico; I am not doing too well.  They always say don’t drink the water in a foreign country unless it is bottled or filtered. We have been extremely careful not to drink the water, as the only water substance I have had was a drink that did have ice in it once, but we asked if the ice was from bottled or filtered water and they did say “yes”.  I also had coffee, which was boiled, which should have been ok as well.  In addition, both were taken from the hotel, which we were told were definitely safe to drink because the hotel had safe water to drink.  Although because my dad drank the exact same things as me and he is not sick, we are wondering if me being as sick as I am in general had anything to do with getting sick from the “water” even though it was filtered.  We are wondering that since I am so sick in general with no immune system and everything… we are wondering if possibly I could have picked up something in the water that a normal person wouldn’t have.

I have been so sick with a severe stomachache and the bleeding worse than ever.  I know my bloods are dropping, as I can feel myself weakening and cramping up.  I was sick all day today, but it really got bad after we got back from the hospital seeing the doctors.  I literally collapsed on the bed and couldn’t move.  I couldn’t even make it downstairs for dinner.  So we ended up having to call up room service.  I still feel really ill, but I wanted to share all that has happened today, as I promised to keep you abreast on all that is happening.

Well… let me start with the important stuff.  I will hopefully be changing my name to “ERICA” because Dr. Cantu in Mexico keeps calling me that and likes it better than my original name.  He even told the other doctors today that my name was “ERICA” and they too agreed that my name should be ERICA and were calling me that too.  So I told them that if they get me “well”, will change my name to my middle name.  But in the meantime, I am known in Mexico as ERICA.  It is my alter ego!

So like I said before… the Coma in Mexico is an official GO.  I will be the 38th patient to undergo the Coma.  I will be the first patient though to undergo the Coma in the new hospital, which will be Santa Engracia (CIMA) even though I will be having the same team as the one that did the other 37 patients.  I am really excited to be able to have this opportunity, but I am really scared.  I am not going to lie, but after meeting with the doctors today, I am more scared than ever about this Coma because of how dangerous and risky it is.  But, when I think of the alternative, I am of course more scared of staying the way that I am because I am suffering so much, deteriorating so rapidly, and going to die.  The life I have now is like living in HELL 24/7 and I don’t wish it on my worst enemy.  In fact, I even asked the doctors at the very end even though they said that they were not going to “make up my mind for me” if they would go through with the Coma if they were in my shoes and they said “definitely.”  They said, “In the state that you are, the benefits far outweigh the risks, but of course it’s your decision.”   I always knew that I was making the right decision but needed to hear it from the doctors.

1669804_10101043148798430_317492597_oI met with the “team” of doctors that will be taking care of me today and never have I met such a nice and wonderful doctors.  They are simply amazing.  I can’t remember their names, but all I can remember is one doctor wearing these banana yellow sneakers. These doctors surely have unique personalities and characteristics that make them stand out. This Ketamine Coma is so very dangerous and extremely risky.  The doctors said that if they thought before that they saw the worst case that could exist, I for sure have taken the trophy.  He said that I for sure have the most complicated and severe case that they have ever seen.  But, they are still want and willing to do it.  We are just crossing our fingers that all will go ok.

These doctors were so incredibly knowledgeable about my disease and were so kind too. They spent so much time with us and we were not on a stopwatch.  They went over everything with us thoroughly and made sure everything from head to toe on me was went over.  They also told me that prior to the coma that they want like every test under the sun done because they want to know basically every number on me and every function of my body so that they can monitor me the best way possible. They know also how quickly my body can change in a second and therefore, they don’t want me to go for the tests until the last possible minute before the Coma.  This way they have the most accurate results.  They are taking the most precautions possible.  They are even doing the Coma in such a top-of-the line hospital with state-of-the-art machinery, which includes this new machine that can monitor your abdominal organs.  I forgot the name of it though.

When they met with me they examined me thoroughly in order to get to know me inside and out.  The noticed also along with everything else that part of my jaw is missing.  I do have osteonecrosis and had some of it removed, but it was inside and further up.  It would definitely not have been where the doctors were noticing nor would it have been as noticeable as they were saying.  But they saw how a huge piece of my jaw has just worn away from this illness.  It is like my whole entire body is not only shutting down, but it is literally deteriorating.  It is wearing away.

This Ketamine Coma is for the severest cases.  We found out that when I come for the Coma, I will need 2 people here along with me.  We had it planned that it was going to be just my dad and me, as we really don’t have many people who can go with us.  My mom can’t go with us because she has multiple sclerosis and she can’t really travel.  Plus, she has to stay home and take care of the business, the house, pets, etc. so we have something to hopefully come home to.  This is going to be a great hardship on all of us and she has to do her best to keep everything going when we are away.  We are planning to be gone for about a month or so, but it can easily go longer.  The doctor said that there is no definite way of knowing how long I will have to be here for.  He hopes that it will be only about a month or so, but if I run into complications (which is very possible because of the circumstances and how high risk I am), it will have to be longer.  After all, there is no guarantee that they are even going to be able to extubate me when they want to.  They might have to leave it in longer than expected because of the condition that I am in.

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But fortunately, I have great cousins who are willing to come to Mexico to help out.  I feel so lucky to be able to have them because without them, I would never be able to have this Coma.  I must say that when the doctor told me that I would only be able to have this Coma if there were 2 people here along with me that I thought that this Coma was never going to be able to happen because no one was going to be able to come here.  But when my cousin in Florida said that he would come, you can’t imagine the true relief and happiness that I felt.  It was like a whole load of weight was lifted right off my shoulders.  I don’t know how I can thank him.  I owe him more than words can say or money can buy.  After all, he is basically “saving” my life!!

My cousin only has to be here when I am extubated and for a few days afterwards because once I am “conscious,” I will need someone with me 24 hours a day.  When I said to the doctors that my dad will be able to do it, the doctors said right away “there is no way your father can do it.  This goes way beyond his powers.  He has no idea how draining this is going to be.  In fact, when you are in the Coma, it is important for him to rest as much as he can because he is going to definitely need all his strength and energy when you are conscious!  He has no idea what he is going to be in for!  It would even wear us down!!” For my superman not to be able to handle this… it has to be hard and a lot to handle.

The doctor said when I awaken that I will be suffering from the worst hallucinations, paranoia, etc.  I will think that everyone is trying to hurt me.  I will not even know anyone… not even the closest people to me such as my dad or even myself.  I will not be able to drink or anything because I won’t know how.  It isn’t guaranteed that this will happen to me, but it is most likely that it will.  So I will need people that I am most familiar with and people I can recognize to help me through this very difficult time. I will suffer the worst nightmares for about a month or so after.  He said that they are really horrible dreams too.

I will be given so much ketamine during this time I am in the Coma that the only way I will be able to survive it is if they completely shut down my body.  That is why they are going to be putting me all on machines and on lines.  I will essentially be having lines everywhere from central lines to arterial lines to catheters to ventilators to feeding tubes to others.  I will only be kept alive on these tubes and machines.  In fact, when I go for the Ketamine infusion in New York, I usually get about 200 mg.  However, when I go for the Coma, I will be getting more than 5 grams.  There is no way a human body could survive that amount without being put on machines.

As I am really sensitive and cannot even tolerate a simple IV line, I was a little scared about having all these lines in me.  Dr. Cantu assured me though that I wouldn’t feel any of them, as he would put them all in when I am asleep.  He said that he would just start the IV and put me asleep.  Then, he will do the rest.  So once I am under, he will then place the feeding tubes, catheters, central lines, arterial lines, etc. so I don’t feel anything.  When I asked him if I would have all these things when I awake, he said I probably will have them but won’t really remember them.  The last thing to go is the Central Line, and I will definitely remember that though because it stays in for some time.  However, it only hurts getting put in and not while it is in or taken out.  So the bad part will be done with.

The doctors said that due to the condition and state that I am in, it will be an extremely dangerous time for me.  It is very possible that I can even die during this Coma, and they literally told me that flat out numerous times.  There just is no way of knowing what will happen because of the state that I am in and how dangerous the ketamine coma is.

The doctors are extremely worried about me getting an infection because I will have all different lines in me, which are all sources of ways of getting a possible infection.  They are scared because if I get an infection, not only will it affect me worst than a normal patient because my illness magnifies it and I have no immune system as it is, but I also am on antibiotics already and it will make fighting it off even more difficult.  They are really afraid of getting pneumonia since I will be intubated.

In addition, they brought up that I might have to have a tracheostomy.  I am so fearful of that and I really do not want that to happen under any circumstances whatsoever.  But they said that my lungs are so weak and when I go on the ventilators, my lungs will weaken further and therefore, I might not be able to come off the ventilators.  I am really scared because I am especially having a hard time breathing even now because they are so weak already.  The doctors did say though that if I did have to get a tracheostomy, it hopefully would not be permanent, as once I get stronger and everything, it will be able to be removed.  After all, when I come out of the Coma, I will hopefully be able to get more strength and not be this weak fragile thing anymore because I will be better and able to eat better.  In the meantime though, I have balloons to blow up so that we can try to strengthen my lungs as much as possible.

In addition, Dr. Cantu is going to try to get me off most of my opioids prior to the Coma to hopefully make it easier to come off the ventilators.  The opioids are also causing my lungs to weaken and will make extubating and coming off the ventilators more difficult.  So we are going to try to come off the methadone.  I don’t know how we are going to do this.  With all the pain and suffering I am in currently, I don’t honestly know how I am going to be able to do this  .Usually patients don’t have to come off of the drugs prior and they come off all the drugs during the Coma.  This way they don’t have to worry about all the withdrawal symptoms and the body detoxes during that time.

Between getting everything organized, coming off the drugs, trying to get my lungs a bit stronger so I can come off the ventilators, giving my cousins time to get their things together and to get passports, as well as to get funds to be able to pay for this Coma, we had to push back the date of the Ketamine Coma.  Even though I need it ASAP, we really had to take everything into consideration and when we did, the soonest we could do it was the end of April or beginning of May.  So it is so important to start raising funds now because I don’t have that much time.  The doctors are only hoping that I will make it that long. They are hoping that I won’t deteriorate much more, which is extremely taking a great risk because I am rapidly deteriorating.  In addition, they want me to have all these tests before I go for the Coma so that they can have exact numbers on me and know my body inside out, which will also take some time.  So… please mark your calendars… please pray for me… and please help me raise the funds that are so desperately needed for this procedure!

I was a little worried about my dad and the communication barrier when I was in the Coma because my dad doesn’t speak really any Spanish or understand it.  The doctors said that they all (meaning the doctors themselves) speak English, but the nurses probably won’t.  They said that my dad would be able to reach them though all the time and they only live within 5 minutes, if needed.  They also said that they would make up cards with the most common phrases to give to my dad so that he would be able to communicate with the nurse and know what to say/ask.  I did ask them if they would “sugarcoat” anything or be completely realistic with y dad no matter why.  They told me that I had nothing to worry about because they said my dad will know everything that is happening… good or bad!  That is one thing about these doctors… they are so caring.

Well… today (since it is already early morning) we are going for a tour of the actual hospital.  The hospital we went to see the doctors at yesterday was just the hospital where their “office” was.  The wife of one of the doctors on my team will be showing us around, as she is a critical care unit nurse.  Dr. Cantu will be in the operating room today, but he said that he wants me to page him as soon as I get there so he will come out and meet us.  I am telling you… I never met such a more caring team of doctors.

155784_10101043150485050_477420787_nBefore I left Dr. Cantu though he did say a few things to me. I looked at him and pleaded with him to please help me, but he said, “I don’t really need to convince him because he knows how much I need the Coma and how much I am suffering.”  He said that he wants me to know that this Coma will “help” but it isn’t a miracle.  It isn’t going to be like I wake up a totally “cured” person who is ready to conquer the world.  It will hopefully put this disease into remission and I will hopefully regain my life, but it isn’t going to happen once I wake up.  As he said to me… “small steps, but HUGE achievements!” Dr. Cantu also saw me smiling a little and he said that he wants me to “smile” more because he said that I am so “beautiful” when I smile and this smile will also bring positivity to me  as well, which will help fight all this too.

We are going to the hospital in the morning because we are planning on leaving to go back home tonight. There has been a change of plans because we were supposed to leave Wednesday but due to the storm that is in the south, we decided to leave tonight instead.  We didn’t want to leave Wednesday and hit the storm because we would most likely have our flights canceled and be stuck.  That would be a disaster for me because I don’t have extra medications, I can’t be around a lot of people, and I really wouldn’t be able to stay in an airport for a huge amount of time like that, which can even be days.  After all, they said that the storm is the worst that the South has experienced in 25 years because of the extreme cold and such.  They are closing schools and canceling everything.  There is even a gas shortage down there.

So we didn’t want to take the chance.  So we had to pay additional money to come home earlier.  Even though it is costing us, it is so much better because at least we know we won’t get stuck.  I just hope my body will be able to do it because I can’t really walk at night and I am usually in my worst state at night, as the pain is then at the max.  But at least we will be avoiding the south.  Instead, we are heading to Mexico City and then having a straight flight to JFK.  So we should be home by morning.  After all, it is even going to be so cold here too.  It has been in the 80s here, but today it isn’t going to be out of the 40s.  Can you imagine?  This winter has been horrendous!

1655688_10101043705707380_61368153_oI have had a great time with my dad while I am here though.  I love being with my dad and having quality time with him. I also love the ‘warm’ weather.  When we were outside today we heard these really weird sounds coming from the tree.  We had no idea what they were.  Finally we saw the bird that was causing it.

I have really been impressed with the mountains.  They have been so gorgeous.  One day I am going to be able to climb them.  They are just so breathtaking!  Since the weather has been so great, I have been able to go out a bit.  We went sat outside a bit and even went to the mall for a bit.  I really wanted to get a souvenir that said something with Mexico like a sweatshirt or something, but I got too sick and had to turn around.  Maybe they will have something at the airport before we go back.

Since I have been so sick tonight, we ended up having room service because I was too ill to go out.  It was so funny because dad had such a hard time speaking to them.  All we wanted was eggs, coffee, orange juice, and an orange.  Do you know it took them like an hour and 5 trips for them to understand that my dad wanted the actual fruit of an orange?  They also ended up giving him a double order of his eggs.  I couldn’t believe it.  I must say though… just being here for 2 days… both of us do speak a lot more Spanish and we can communicate so much better.  But don’t worry… by the time we come back, I am sure that will be all lost!

1026128_10101043149646730_199341294_oI don’t know if it is just me or if it is because I really don’t feel well, but nothing tastes or drinks right.  According to dad, everything is fine but then again dad drinks and eats anything and everything that is edible. Even a diet coke doesn’t taste like the diet coke we get at home. Dad said it is because we are in Mexico and it is a “Mexican Diet Coke.”  But I don’t know if he is serious or not.  I can’t imagine foods and drinks that are the same like something like a diet coke tasting differently because they are actually different, but they do have different labels despite being the same.

Well… I guess that is about it. I will write again to let you know all that happens today and especially about the hospital.  If I forgot anything about the Coma or what the doctors said, I will add it to the next email.  I just am not feeling well and it has been a long day, so I might have forgotten some things.

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

Hasta luego (Later)!

– Fallon

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January 27, 2014

1780248_10101041819677000_217387450_oHola!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hasta luego (Later)!

– Fallon

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January 26, 2014

1604389_10101041626149830_545459132_nHi!

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

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

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

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

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

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

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

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

1602127_10101039391692700_874790554_oOne of the ways we are fundraising and hoping to raise funds, as well as awareness, is through the selling of bracelets.  The bracelets are $5, come in 2 colors (pink or blue), and 2 sizes (youth or adult).  The bracelets say “Help Fallon Fight!” If interested in buying or selling, please email at Femirsky@gmail.com. You can send a check via snail mail to the address I give you or deposit the money at my website and I will ship you the bracelet.  However, I need to know your information such as your name, address, how many bracelets, and the color/size.  So please email me if interested.  If you want to sell bracelets, I can also give you a bunch and you can return the ones that you don’t sell.  All money goes towards treatment for my illness. Please share this message!  I am really hoping that these bracelets will not only bring in money so that I can receive the treatment that I desperately need, but hoping it also brings awareness to this mysterious disease.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Fallon

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

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January 20, 2014

1492234_10101011609792850_1691868988_oHi!

I just wanted to write tonight because I wanted to ask if you would be so kind to spread word of my website because I desperately need to receive treatment, as I am really deteriorating and not going to make it much longer.  My body is giving up on me and shutting down.  Yet, my family can’t afford the lifesaving treatment that I need without your help.  I desperately need your help because I don’t want to die.  Not only do I need your help to continue to receive the treatment that I am receiving in the United States, but also I need your help so that I can receive a radical Ketamine Coma in Mexico, which is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.  Only about 80 patients worldwide have undergone this Coma.   Even though I am extremely fragile, there are significant risks; it continues to be my only hope because there are really no other options available.  Unless something is done soon, I will die, which is something I really don’t want to happen because I have so much to live for and so much I still want to do in life.

Going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!!  I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.”  I think that everyone in this world should know about my disease in the same way that they know what cancer or AIDS are.

I spent today watching figure skating on television and it really hit home how sick I really am and how much I really want to get better.  I would do anything to be able to be free from this disease and be able to skate again! All I kept saying when I was watching the skating on TV was that I would do anything to turn back the clock and go back in time.  After all, I had such a great life before I got sick.  Never did I think that my life was ever going to turn out the way it did.  Me… just like everyone else… never appreciate what we really do have until it is too late and we don’t have it.  I guess I always kinda took it for granted that I would be able to walk and eat and be “healthy!”

I watched the ladies compete on TV and I remembered my days as a skater and how good it felt to be able to soar over the ice and jump into the air.  I felt free as a bird!  It was the best feeling in the world.  I was an avid figure skater growing up, as I competed and performed in shows.  I even was fortunate to perform at Rockefeller Centre.  My whole life was skating.  I would skate basically almost every day, and I would even skate before and after school.  Even though I would have to wake up very early to skate before school, there was nothing like smelling the ice first thing in the morning and being able to feel free as a bird!  I felt untouchable when I skated.  Skating was one of my happiest times.  I only wish I could go back to it.

My dad sat beside me as we watched together the competition.  I asked my dad, “Do you ever think I will be able to skate again?”  My dad looked at me and said he “hopes”, but in reality we both new deep down that those great years that I had skating were years that are gone forever.  Although my dad wouldn’t say so, I knew deep down that even if I did get better, I would never be able to skate again.  My body has suffered way too much because of this illness and even if I did survive this illness, there would be no way my body would be able to survive a fall or anything because not only could a fall also restart my illness up (because this illness never officially goes away… all I can hope for is that it goes into complete remission), but my bones would never survive a fall either because they are so weak and osteoporotic that the slightest impact or fall could cause devastating effects (my bones are so weak that the doctors are so fearful of me even getting a life-threatening fracture).

I just wish I could turn back the hands of time.  I had such a wonderful life growing up.  When you are young and growing up, you never really appreciate your childhood and you are always looking forward to growing up.  Yet, if I knew what was ahead of me, I would have never wanted to push ahead and grow up so fast.  It is amazing how little kids always want to be older than they are.  Yet, they don’t realize that growing up means also having to deal with the world and huge problems. Kids don’t realize how good they have it.  My dad used to tell me when I was younger that “you don’t know how good you have it and don’t be in such a hurry to get older.”  I only wish I would have listened.  But I guess all kids don’t because they think that the “adult” world is so much better.

Not only was life better years ago when I was younger because I skated, but also life was better because we didn’t have to worry about financial issues.  We were the typical middle class family who were self-sufficient.  We definitely had more than others, but certainly less than others too.  I can honestly say that we were living “comfortably” and we were able to pay all our bills. We were also the type of family that always gave to the less fortunate and to people in need.  In fact, every holiday season we would help the homeless and play “Santa” to kids that were less fortunate than us.  Never did I think that we would ever be in a position where we would be on the other side of the coin.  Never did I think that we wouldn’t be able to afford to pay our mortgage and was at risk of losing our house.  Never did I think that the weeks we are able to pay for food shopping that I would consider ourselves “lucky”.  Never did I think we would be selling everything that we owned just to get by.  That light that was so bright at the end of the tunnel at one time quickly disappeared.

Not only do I wish I could change back the hands of time because physically I have changed, but I have changed mentally as well.  Sometimes I wonder if the word “FUN” will ever exist in my life again.  The only thing that the 3-letter word and I have in common right now is the first letter.  All things that used to give me pleasure has been taken away from me.  Even the littlest and simplest thing such as reading was taken away… another thing many take for granted. I used to read books like crazy.  Yet now, I can barely even focus and concentrate.  I can barely retain what I read.  By the time I reach the end of the page, I can’t even remember what I read at the top.  Even though I continue to try to read, I can’t remember the last time I was able to finish a book.   Nothing is worse than watching my brain deteriorate.  I used to be so keep on everything.  I was sharp as a whip.  I had photographic memory.  Yet, now between the drugs and illness,  something that I thought I would always have, which was my brain, has been taken away from me as well.

Family life for me also changed dramatically.   The years when I was younger that were filled with fun times, happiness, laughter, and smiles as we ate out and went on vacations, and did fun activities such as go to amusement parks, the beach, the movies, shows, apple picking, etc. are now a big blur. Not only did my life change as I got older, but so did the lives of the rest of my family.  As I grew sicker and sicker, it really took a huge toll on my entire family.  We no longer were able to go out and have “fun.” Even going out to eat stopped.  Everything stopped!  At first it all stopped because my parents gave up their lives to care for me because I became too sick to do anything.  But then we couldn’t even do anything even if we wanted because my medical illness had taken a toll on the family as it was extremely expensive and put us financially in debt.  There was no way that we could afford the treatment that I needed and do other things as well.  My family literally gave up their lives for me.  They worked harder than ever, as their 5 day work week became 7 days and they even worked longer hours as well.  Yet, even with them working more hours… the bills and debt continued to build.  Everything seemed to snowball out of control.

I really only wish I could turn back time so not only I can have my happiness back, but so that my family can have theirs back too.  They have given up so much for me, and I am so grateful for them.  I would have never made it this far without them and I am so thankful that they are my parents.  Not only is my dad my “father”, but also he is also my knight and shining armor, my superman, and my best friend. There is nothing that he wouldn’t do for me. He always tries to bring whatever happiness he can to me and tries to make all my worries go away even though it’s literally impossible.  My dad is the one who carries me from place to place when I can’t make it and he is the one who takes me all over the country in search of help.  I can’t thank him for all that he has done and continues to do for me.  My mom is also amazing. She stays home and tries to run the business and house when my dad and I are not around.  She isn’t well herself, as she suffers from Multiple Sclerosis.  Yet, she continues to do all that she can so that my dad can continue to take me to whatever appointments that I need to go.  I only wish that she could come with us when we travel, but I know that is literally impossible.  Not only can we not afford for her to come, but also someone has to watch the business and the house.  One day we will be able to go on vacation as a family again and have a good time.  One day we will be like every other family and be able to be enjoy life so that we can be “all smiles” again.  I know it hurts my mom immensely to hear when other people go on vacation because we haven’t been away on vacation in close to 10 years.    But one day I will hopefully be better and we will be able to afford to go.  One day all this will be a memory and this will be all in the past.  I only hope that I will get well so that I will be able to live out my life and dreams, and my family can get their lives back.  It isn’t fair what I did to them.  I only wish I could make it up to them.

Thank goodness I have my animals.  My cat Missy, my turtle George, and my dog Max are not only my pets, but they are also my companions.  I don’t know what I would do without them.  As I spend a lot of time alone and isolated in my house, my pets have been such a source of comfort.  They really have kept me going and have provided me so much comfort.  My cat Missy spends all night long with me and we call her my “babysitter!”  As I spend countless nights awake because this disease makes you not able to sleep at all, she stays right by my side and makes sure that I make it through the night.  She loves to watch me on the computer and loves to watch TV with me as well.  If an emergency ever arises during the night, my parents always can tell because Missy alerts them.  She is such a smart cat.  Max is my buddy during the day.  He spends the day laying on the couch with me.  He knows just where to lay and is especially careful not to hurt me.  When I come home from treatment, he is always there to come over and check me out to me make sure I am ok and to give me a kiss.  My dad likes to call my dog “Fallon’s Service Dog!” Finally, I have my turtle, who is really something.  Not only does he have such an unbeatable personality but he also watches me all throughout the night.  He stays in the corner of his cage watching me and he loves to also watch TV.  My dad likes to say that George is learning “English!” I really owe it to the three of them to keeping me going because at times they are my only companions and friends I can lean on besides my parents!

Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat.  This disease is excruciatingly painful all throughout my body 24/7.  It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me.  RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.  This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

This illness has caused severe Gastroparesis and therefore, my entire GI system is no longer functioning.  Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition. I can barely eat anything because of the Gastroparesis.  I literally am surviving on ice pops and egg whites.  I try to get down ice cream because that is my favorite, but it isn’t so easy.  In addition, I have trouble drinking.  I can’t even drink because of the Gastroparesis.  Not only does it cause me to “bloat,” but also it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia.  If I drink anything, it has to be frozen and made into a “slushy.”  I guess it has to be like this because it slows down the speed it goes into your body and the different texture makes a difference as well.  I also need a multivisceral transplant (stomach, small and large intestine, pancreas, liver), but it is very radical and risky, and we are hoping it can be avoided by having this Ketamine coma performed in Mexico.

I have tried various and numerous treatments, which have put a great financial strain on us since they all aren’t covered by insurance and aren’t even in the local area since not many doctors are familiar with this condition. I have tried many (if not all) opioids, anti-depressants, etc. but nothing has worked. I take literally over 50 pills daily and the medications that I do take are enough probably to kill a horse.  I am currently on Nucynta, Methadone, Senokot, Colasce, Ducolax, Avinza, Topamax, Singular, Domperidone, Bethanechol, Colchicine, Vancocin HCl, Misoprostol, Ketamine, and Relistor.  Since I have the extreme gastroparesis, taking all these medications is even very difficult, as I have to take them with a carbonated beverage made into a slushy in order to help get them down.  Even taking it like this though has been getting increasingly more difficult.   In addition, the medications aren’t always absorbed either.  I can literally take medicine in the morning and when I throw up 12 hours later, I can throw up the pills and they aren’t even dissolved.  So we never know what pills are going to be dissolved and how much will be dissolved on a given day.

In addition, I have had countless procedures/surgeries such as implanting a spinal column stimulator, sympathectomy, epidurals, sympathetic nerve blocks, Botox, aquatherapy, physical & occupational therapy, biofeedback, TENS unit, acupuncture, ketamine infusions, and hyperbaric therapy.

Unfortunately all these treatments haven’t been really too good in treating my disease.  Therefore, I really need to get to Mexico to have a radical Ketamine Coma that is made only for the patients with the most severe, intractable cases.  There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top-notch care.  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

My doctor in Mexico is absolutely amazing.  I have never met such a wonderful and caring doctor.  His name is Dr. Cantu and even though I will be going to Mexico to have this treatment because the amount of Ketamine that is needed in this Coma is so high that it is not FDA approved, the doctor was actually a graduate of the medical school at the University of Texas.  He is like no physician I have ever met because not only is he the most knowledgeable physician I have ever met about my illness, but he is the most caring as well.  He just doesn’t treat me as a “patient.” Instead, he treats not only me but also my dad as well as family.  He doesn’t even wear a doctor’s jacket, but just a plain shirt because he knows the negative stigmas that patients associate doctors with.

Only 80 patients worldwide have gone through the treatment.  Since this Ketamine Coma in Mexico is made only for the severest cases, it means that Dr. Cantu has actually seen the worst cases in the world.  In fact, he actually stated that I am actually the “worst” case in the world that he has seen and only 2 other cases have ever been similar to mine.  Luckily, I have been fortunate though to be able to speak one of the patients of those cases.  I am including two links to her story so that you can see exactly what he went through and you can get a better idea what I am going through and what I will be undergoing with the Ketamine Coma in Mexico.  The links are: http://www.youtube.com/watch?v=rh35hyDklP4&feature=share&list=ULrh35hyDklP4&index=1 and http://youtu.be/0W98atXl1XM

I really wish and hope that all this will disappear.  I really hope that I will be able to get the lifesaving treatment that I need in order to survive.  But, I know that this is definitely not possible without money because no one in this world does anything for “free!”  Sometimes I wonder what this world would be like if money didn’t exist.

Unfortunately my family has spent all their lifesavings on my illness already and the well has run officially dry.  We sold all that we could and we made whatever cuts we could.  Yet, there is still no way that we can afford the treatment that I need.  I have tried to post flyers, post on Facebook, make a website, contact the media, contact celebrities, etc.  I have even been so desperate that I wrote to President Obama and Queen Elizabeth to ask for help. You wouldn’t believe it but I actually received a letter back from Queen Elizabeth expressing how “sorry” she was and how she would love to help me but I am not in her country.  I really thought it was really ‘cool’ to get a letter from the Queen.  However, no matter what I have tried to do, I really haven’t been too successful in getting the needed funds.  After all, you know how the saying goes, “It isn’t what you know, it’s whom you know”… and unfortunately I don’t know anyone that really has connections.  I know the real secret in this is “word of mouth” and therefore, I am asking you if you can please help me out and please spread word of my website so that I can receive the funds to receive the lifesaving treatment that I desperately need.

I am also going to be selling bracelets.  The bracelets are very similar to the LIVESTRONG bracelets, but they are custom-made to raise awareness to my cause.  They come in two different colors, which are blue and pink.  The bracelets say “Help Fallon Fight” and also have my website on them.  They are going for about $5 each, so if you are interested, please email me at Femirsky@gmail.com and put “Bracelet” on the subject line.  Also, if interested in selling them as well, it would be much appreciated and please email me as well to let me know.

Please help me raise awareness and funds so that I can hopefully go to Mexico to have this coma.  Time is of the essence, so I am in desperate and in urgent need of your help. Sometimes I wonder what my life would have been like if I never was afflicted with this illness.  But then I say to myself that “everything happens for a reason” and this has helped me become the person that I am. My goal is to one day become a doctor and I can only think that this experience will only help me in that.  I will be a great doctor because when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”

220xauto_1381651453Thank you so much for all your continued support and encouragement.  I really hope that I will be able to get my life back.  But I know that it will take the help of others to get me there… both through donations and prayers.  Yet, I am not “giving up” yet.  I really hope that I will get to see that  “light at the end of the tunnel that looked so good when I was growing up!”  One day I will be able to get to enjoy all the joys of life again even if it is just going to the beach, have the breeze on my face, to eat, to walk, to be touched, to have the sun on my face, etc. … All the things that others take for granted and that I have learned that you can’t and won’t ever again!  Remember… please spread the word that donations are much needed and greatly appreciated at www.youcaring.com/HelpFallonFight and if you are interested in purchasing or selling a bracelet, please contact Femirsky@gmail.com and put “bracelet” in the subject line!

Love,

Fallon

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January 18, 2014

1523779_10101028198763420_412283546_oHi!

I know… it has been awhile since I last wrote, but I haven’t been doing well.  I wanted though to write tonight and update you on all that is happening because so much has happened and is happening.  We are getting ready to leave for Mexico, so you can imagine how hectic everything has been on top of everything else!

Like I said… We are getting ready to leave for Mexico, so we have really been trying to get everything organized.  It is going to be a really big trip in more ways than you can possibly imagine.  Not only are we having problems coming up with the funds to pay for the trip, but also we have to do so much to prepare for this trip.  After all, traveling is definitely not easy on me.  This isn’t even a “small” trip.  We are basically traveling across the entire country and then compound that by having to travel internationally.   It is going to be one exhausting trip.  We first have to fly to Atlanta, Georgia and then we have a connection to go to Mexico.

We are only going to Mexico for about a week this time.  We are going just to finalize everything with the doctor because we don’t have the funds right now to do the entire Ketamine coma.  Ideally, I desperately need the Ketamine Coma as soon as possible because I am rapidly deteriorating and not going to make it much longer.  My organs are really shutting down faster than you can imagine and the disease is taking over and spreading like a wildflower.  Yet, no one is going to do this Coma for free and therefore, I need to come up with about $100,000.  We cannot afford it on our own, and therefore, I desperately need as much help from others as possible because I will definitely not be able to receive this lifesaving treatment otherwise.

As we are only going down briefly this time to finalize everything with the doctor and get everything adjusted and such, we are hoping to actually undergo the Ketamine Coma March 1st.  So that gives me about a month to come up with the funds.  I really don’t have long that my body is going to last and since my body isn’t going to put up much longer with things (the doctors are even shocked I made it this long), we really need to undergo the Coma by March 1st.

So as you can see I desperately need to raise a lot of money by that date so that I will be able to undergo the Ketamine coma to save my life.  I really don’t have a lot of ideas to raise funds, but if you have any ideas, I would greatly appreciate it if you let me know of any.  I have already tried posting some flyers, but if you want to post some yourself, please let me know and I will give you some to post.  I also have written to the media as well as to some congressmen.  However, I really haven’t gotten anywhere because you know the saying… “It isn’t WHAT you know, it’s WHO you know and unfortunately I don’t know anyone.”  However, I was fortunate that one congressman did happen to reach out to me named Dean Skelos.  I received a very nice phone call saying that he wanted to help me, so we will see what happens.  He told me that he wanted to get the newspapers involved such as the Herald and such, so hopefully that will work out.  After all, any little bit helps!

Screen Shot 2014-01-18 at 2.06.20 AMIn addition, I am going to be selling bracelets to raise money.  The picture is not the picture of the actual bracelet I am selling.  I would appreciate it if you would want to sell them on your own for me and forward me the money.  If you are interested, please let me know.  These bracelets are the “LIVESTRONG” bracelets that are custom-made to bring awareness to my illness and me.  I am hoping that through these bracelets that I will not only raise the much-needed funds, but I will also raise awareness to this mysterious disease that very few people know about.

I really hope that I will be able to come up with the money so that I will be able to have this lifesaving Ketamine Coma in Mexico.  It is very rare and radical, but it is basically my only option. The coma has only been done in less than 40 patients in Mexico already and I will be the first patient to actually undergo the Coma in this new hospital.  Even though the doctor has done this Coma before, I am going to a different hospital than he has done the other patients at.  However, this hospital is supposed to be just as superb.  It is also in Monterrey, Mexico and it is called Hospital Cima Santa Engracia.

Everything is a “Go” for the Coma.  I finally got the approval from the hospital in Mexico, as well as the government.  Like I said before, all that is needed is the funds.  I am heading down to Mexico on Sunday, January 26th so that I can meet with the doctor and the entire team and to finalize everything.  After all, I am literally putting my life in their hands.  They are essentially going to be shutting down my body and putting me all on machines.

This Coma is done to patients who have the most severe cases of RSD and who have tried everything—including blocks and hyperbaric chambers—for their pain.  I have been all over the country and had every treatment imaginable from blocks to stimulators to hyperbaric chambers to ketamine infusions to sympathectomies to more.  I have been on countless amounts of medications and have literally tried every medication that can possibly exist.  Right now I am currently on enough medication that can probably kill a horse, as I am taking Methadone, Morphine, Dilaudid, Oxycontin, Ketamine, Nucynta, Bethanechol, Misoprostol, Colchicine, Macrobid, Vancocin, Azithromycin, Senokot, Colasce, Ducolax etc.  I take over 50 pills daily and even take injections besides that. Besides being in tremendous pain 24/7, my organs are shutting down and I am dwindling in weight, as I only weigh in the 60s.

Leading my Mexican medical team is Fernando Cantu, MD, who was trained at the University of Texas.  I never met a doctor who I feel more comfortable with.  He is such a nice and caring doctor.  He understands me, which is a HUGE plus because very few doctors do.  He said, “I am the worst case in the world and only 2 other cases were very similar to mine!”  However, knowing that he has seen those 2 other cases and they have gotten better through his Ketamine coma, it gives me great hopes that I will have the same results.  In fact, I have been so fortunate that one of these patients named Jessica has been talking to me and letting me know firsthand what it was like and what to expect in Mexico.  It is so great to be able to talk to her because it is so good to hear from a person who has experienced the exact same things that I am going through.  I finally have someone that understands me. She is the one who was in the Ketamine video that I displayed to show what the Coma was all about.

Jessica has been so informative of what to expect.  I had so many unanswered questions, and I am so glad that Jessica was able to help me through them.  Not only did she tell me what to expect when I came out, as most patients lose their memory temporarily and experience hallucinations and such, but she told me about all the lines that were put in you.  After all, you are kept alive during this time on machines because the coma literally shuts down your entire body.  You are given so much ketamine that you are basically just living on machines.  I will be getting between 500-1000 mg of ketamine an hour.  I was so scared of the lines and all the tubes and such, but Jessica assured me that Dr. Cantu was extremely gentle and like no other doctor.  She said that he does everything once you are asleep and you don’t feel anything because Dr. Cantu knows how painful everything is especially in us because of how hypersensitive we are already.  She also told me that Dr. Cantu knows how we are petrified of doctors and what we associate doctors with because we have had such horrible experiences with many and therefore, he never wear a doctor’s outfit.  She said that he always just wears a regular shirt so that we don’t have negative stigmas about him and associate him as just being “another” doctor.

I feel so fortunate that I am able to speak to this person because it is such a great comfort to know what lies ahead.  We have such similar stories and it is so nice to hear that I am not “alone” in what I am feeling.  She also has aspirations and is going to school to become a Physician Assistant. Since she has undergone the Coma and has gotten better, she has been able to resume her studies and life and is moving towards that goal.  Therefore, we have it planned that after I get my Ketamine Coma, I will be able to follow the same path as she, and then we will both work side by side Dr. Cantu and help him treat this horrible disease in Mexico.  But like she keeps telling me… “It is small steps, but huge advancements!”

I am really nervous about leaving on Sunday.  It is going to be one BIG trip.  I never was out of the country before.  But everything is set up including the hotel and plane and everything else.  Everyone in Mexico and even Jessica have been so kind and helpful in everything that needs to be done and have worked with us to make sure it all went smoothly especially since my dad and I have no clue in what we are doing and don’t speak Spanish.  Jessica helped us get a great hotel and she gave me more insight into Dr. Cantu.

Dr. Cantu has also been wonderful and I feel so blessed to have him as my physician.  Not only does he talk to me anytime of the day and night because I have his cell number, but he actually treats us like family.  He wants to make sure that everything is taken care of and that I receive the treatment that I need.  In fact, he even said to us that he wants us to call him when I arrive at the hotel because he wants to come over to visit.  Can you imagine a doctor coming to the hotel on a Sunday just to visit? I think that is incredibly sweet and nice of him.  He is also scheduling a whole tour of the hospital and surroundings while I am down there so I can get adjusted to everything and meet the entire team.

So… I will be heading down on Sunday.  We have our passports and tickets. The doctor would have liked to do the Coma now, but like I said before, I don’t have the funds right now to pay for it. So, we are hoping to do the coma March 1st.  So if you can please help me raise the funds by buying/selling bracelets, spreading word of my website for donations, or even doing another form of fundraising… I would extremely appreciate it.  Money is tighter than ever, as we can’t even pay our household bills anymore.  All the money went to pay for this trip on Sunday and we are basically up over our heads in bills.  I never thought I would see the day when I would say that the weeks that we can afford food in our house and for my mom to go food shopping that I feel “lucky!”  We have been having a horrible time paying our bills including our mortgage.  I swear… if we lost the house because of me, I would never forgive myself.  My family has given up and lost out on so much because of me.  I don’t want them to lose the house too. After all… the house is basically all they have left.  I rather not get the treatment that I need than to have my family suffer more!

Besides getting ready for Mexico, I had another ketamine infusion/coma yesterday.  However, I also found out from this ketamine infusion/coma that the disease has continued to spread and takeover, as it is moving closer to my brain and went into my jaw and mouth now.  We already knew that I just didn’t have this disease in my body, but it was visceral.  However, now we know also that it is in my jaw and mouth too.

It just so happened that I had more dead bone removed this week as well.  I have severe osteonecrosis in my mouth and jaw and therefore, I had to have more of the dead bone removed. However, it ended up spreading and flaring up my disease.  After I had the bone removal, I couldn’t even open or close my jaw.  I couldn’t even bite down on anything because it would cause the most excruciating pain.  Even just drinking or air blowing past it would cause so much pain.  Yet, I thought that the pain was related to having the bone removed and I was going to go back to the surgeon to see what could be done.

However, I ended up going for the ketamine infusion instead because I also needed to get my medications since I was leaving for Mexico.  It just so happened though that after I underwent the Ketamine Coma, the pain that once existed in my mouth and jaw and was so excruciating was gone.  I could open and close my mouth, I could bite, and the air didn’t hurt as much.  Therefore, since I had a reaction to the ketamine, it showed that it wasn’t the pain from the removing of the bone that I was having before but it was actually that the disease had spread and flared up.  When I told Dr. Cantu about this today, he sad that the disease had spread, but he was glad that the ketamine did make a difference because it showed great promise that since I responded to the ketamine during the infusion, I would have a great response to the ketamine when I underwent the huge Ketamine Coma in Mexico.

1559506_10101030745619500_112812242_oSo… that appears all that is happening.  Like I said before, I am getting ready for Mexico.  I am definitely going to miss my mom and pets.  We are trying to find all different ways of communicating with her since she will be home in the USA and we will be in Mexico.  We know the phone will be expensive because it is international calling. So we found out some Wi-Fi programs that let us call for free.  Thank goodness for iPhones because not only will it enable us to see my mom because of FaceTime, but it will also allow us to communicate and get along while we are in Mexico as well because we downloaded translating programs.  This way we will be able to find out how to say certain things and find out what certain things mean.  I just hope that the TV is in English even though we are in Mexico.  I think I am going to download some movies onto my iPad or something just in case because I don’t want to be stuck with nothing to watch because I don’t really know Spanish.

Like I said before… I am really nervous and excited about going.  At least I know that I am coming home this time.  I just hope that I will be able to return before it is too late.  Like I said in the beginning of this… If you are interested in buying or selling the bracelets, please let me know.  My email is at Femirsky@gmail.com.  Any help that you can do would be much appreciated.

Thanks again for all your continued support.  I will let you know more when I know more!

Love,

Fallon

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January 11, 2014

mmexicoHi-

Just wanted to give you an update on all that is happening as well as desperately plead with you for help because I desperately need your help more than ever.  I know I sound like a broken record already with always saying how I am “getting worse” and how I “need to raise funds”, but the truth is that I am at the point now where my family is literally unable to afford any treatment whatsoever and I desperately need treatment to save my life.  I have deteriorated to the point that unless something is done soon, I am not going to make it much longer.  In fact, I am hopefully going to be leaving for Mexico soon because I am in need of this lifesaving procedure and it is basically my last hope.  I need to have it done very soon because I am going against the clock right now.  Let me explain!

Unfortunately I have taken a turn for the worse.  I am really not doing well and desperately need your help if I am going to be able to live because I need lifesaving treatment that we can’t afford on our own.  Things are worse than you can imagine.  My disease has become such a financial burden on my entire family that the bills are just astronomical.  We can no longer even pay for the limited treatment that I was receiving.  It is like it completely snowballed out-of-control.  The medical bills are just piling up and has gotten to the point that we can’t even pay our mortgage, have been having trouble even putting food on the table, and couldn’t even pay our monthly health insurance bill.  As a result, my health insurance was even taken away and I have been going without health insurance because the cost of my health insurance per month was just too much to come up with.  So now I can’t even receive the limited treatment that the insurance was covering.

I know that people might think that I would be “ok” because I could always receive state Medicaid.  However, in my case Medicaid is definitely not the answer.  I really have no use for Medicaid because first of all in terms of my doctors… my doctors are specialists and since my disease is so rare and complex, the doctors that I do see don’t really take Medicaid.  In addition, most of my doctors are out-of-state and therefore Medicaid won’t even help because it is only good in the state of New York.  Second of all, it won’t cover the procedures or surgeries that I need because not only are my surgeries and procedures also out-of-state and Medicaid won’t cover those, but Medicaid also doesn’t cover the surgeries/procedures because they are not your “everyday” ones.  In terms of my medications, Medicaid coverage doesn’t work because I take very potent medications and I have even difficulty having my private health insurance cover them.  So… Medicaid is definitely not the answer for me.

So I really need to have private health insurance, which is so very expensive. To think… the private health insurance is so expensive and yet, it doesn’t even cover everything that I need.  I still need to pay so much out-of-pocket for surgeries/procedures, doctors, medications, etc. because all of them are still not covered under the private health insurance. Plus, the copayments also add up and it basically comes out to us paying over $25,000 annually in just copayments alone.  But at least it does help in some respects so I definitely need it because believe it or not, with as much money as I need to put out to pay for my medications, doctors, surgeries/procedures out-of-pocket, it is still a lot less than I would have to pay if I didn’t have insurance.  Believe it or not the insurance does pay for things even though I am stuck paying out so much money too.  It is just that it costs so much money to be ‘healthy!’  As the quote definitely goes, “Health is Wealth!”

So not only are we in desperate need of raising funds to help pay for my health insurance, but we are in desperate need to raise funds for my treatment as well.  After all like I said before, even though my health insurance does cover a lot, it doesn’t cover everything and my treatment is extremely expensive.  One thing it doesn’t cover is the trip to Mexico to receive that radical Ketamine Coma, which I desperately need and finally got the call for.  The doctors want to do the coma ASAP because things have gotten so bad and I am running out of time, but unfortunately I won’t be able to go unless I have the money behind me.  We definitely can’t afford it and that is why we desperately need your help.

I spoke to the doctor from Mexico today and it is a “Go” for Mexico.  The doctor wants to see me in a week or two to finalize everything in person.  He said that we really are working against the clock and really need to have the Coma done as soon as possible because I am so very sick.  He said that unless something is done soon, I am going to die.  We have made it to the final stages of finalizing everything.

The doctor said that I am one of the worst cases in the world.  He said that there really have only been 2 other cases that have been like mine.  However, those two patients both had a miraculous recovery, so I am really hoping and praying that I will be as fortunate.  However, he said that I am one “really sick person!” He said that the way the disease has affected me is extremely rare.  Not only is the disease in my body, but the disease is “visceral” as well.  It is very rare for the disease to go “visceral,” which means that it is all in my organs and tissues.  So it is extremely difficult to treat and extremely life-threatening.  He said that this Ketamine Coma is basically my ONLY option that I have left.  It is the only thing that can possibly help and save my life.

This coma in Mexico is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.  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.  The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU.

Going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!!  I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.”  So I am only hoping that I will be able to be able to raise the money and be able to have this opportunity to have this Coma.

The doctor said that the coma should cost about $100,000.  He said that the average person spends about 1 month in Mexico.  However, he said that all bets are off with me because I am such in a horrendous condition.  He said that I could down in Mexico so much longer and therefore I need to be prepared for that.  He said that I might be able to be able to come off the ventilators after about 2 weeks or I might not be able to come off the ventilators for a month.  There really is no protocol and therefore, we don’t really know what is going to happen once I go under.  Therefore, we really don’t know the final cost of the coma, but it will cost at least $100,000.

This really scares me because I know we can’t even afford the $100,000.  If I need to stay longer and if it costs more… I don’t know how on earth we are going to be able to afford that.  The other two cases that were nearly identical to mine ended up having to stay longer and costing them so much more money.  My mom is going to be staying behind in the states to hopefully take care of things while we are gone, but how long can she do it for?  My dad’s business will never survive especially longer than a month without him.  That is why I am asking for so much help and pleading with you to help me raise funds.  Not only can’t we afford the $100,000 to get me the treatment, but also we are definitely going to need money afterwards in case I have to stay there.

I really have strong hopes for this Ketamine coma.  Not only am I looking for it to save my life, but also it will let me live pain free and let me be able to eat again!  The other patients that were identical to me and couldn’t eat a morsel before the Coma are now eating full meals.

The doctor is extremely kind.  I really like him.  He is trying to make this as ‘easy’ for us as possible.  He is helping us make all the arrangements and everything. He even gave me his cell number and he said I could call him anytime to ask him anything.  I even have a meeting with him tomorrow morning because he is going to be gathering information for me regarding my visit to him and also he has one of the patients coming to see him that I am “identical” to.  So he is going to have me talk to her so I know what to expect. Her family will also talk to my dad so that he knows what to expect as well.  This way they can help get us situated too in Mexico in terms of hotel, airfare, where to go, etc. because they have gone through this before.

The doctor wants us to come to Mexico to meet with the team and finalize plans in person so we can know everything that is going on prior to the Coma.  This way we can have all our questions answered and we can explore the hospital and surroundings.  This will be the first time I will ever be out of the country.  So we are planning on leaving Sunday, January 19th or the following Sunday, which is January 26th.  We are only going to be going for a few days just to meet with the team and to finalize everything, so we should be back by the Wednesday of that week.  But of course this is all dependent on the funds as well.  We will then return shortly afterwards for the real coma.  This trip is just to ‘explore’ and get used to the surroundings and to see what I am in for.  After all, I really have no idea what I am in for.  I know from what people tell me, but I really don’t know.

So I have the passports and the “go ahead!”  All I am missing is the funds, prayers, and support.  So hopefully I will be able to soon get those in my basket as well and be on my way to Mexico and a new life.

angel-emoticon-15453195Not only am I hoping for a miracle to take place in Mexico… to go from a life of excruciating pain to being able to smile, talk and move again, but I am hoping for a greater miracle of having the community came together to raise enough money to benefit me and contribute to research for the disorder that afflicts me, reflex sympathetic dystrophy or RSD.  So I am really pleading for your help.  I really need all the help and support that I can get because without it I will definitely not be able to make this trip and have this coma that can potentially save my life.  I am really pleading that you please help me spread the word of my website and help me raise funds.  If you can please think of any way of fundraising or do anything on your own to help bring in donations, it would be so much appreciated.  I know the trick really would be media coverage, so if anyone has connections… please HELP!

In addition, this Ketamine coma is going to be extremely dangerous. I am going to need all the prayers and support that I can get during this difficult time.  This Ketamine Coma is both terrifying and hopeful. As the doctor explained to us, due to the nature of the coma and my debilitated state of health, it will be a long slow path back to some normalcy. The road to recovery will prove to be difficult as well as an incredible challenge.

I will be getting enough ketamine in my body that can basically hold a hospital.  When I come out of the Coma, I will have to basically relearn everything.  After the coma, a lot of retraining is involved—learning how to sit up again, how to walk again.  But this experience has shown me things I probably would never learn in a lifetime.  Now I realize how much more grateful I am for the simple things.

So hopefully we will be off to Mexico in the next week or so to meet the team and finalize everything.  Like I said before, this will be the very first time I will be out-of-the country.  We will going to Monterrey, which I am hoping will speak a lot of English because I really don’t know that much Spanish even though I was pretty fluent in Spanish in High School.  But that was so many years ago and you know how it goes… if you don’t use it, you lose it!  I heard Mexico is really beautiful, so I am really excited.  It is supposed to be really warm.  I only hope I get to see some things.  The doctor wants us to explore not only the hospital and meet the team and everything, but he wants us to explore the surroundings too so we get used to the area. So I am hoping that I will get to see a lot of cool things.  I will of course bring my camera and take pictures of everything.  I just hope my body lets me explore because I am so weak.  But the weather should be beautiful there, so that should help.  One thing my dad and I won’t be doing though is drinking the water or having ice because my mom keeps telling us not to drink the water and of course since ice is made of water… that is off limits too! I only wish that I was headed to Mexico under better circumstances.  But after I go through with this Ketamine Coma and I am better… I will be able to travel the world and nothing will stop me or get me down!

Well… just wanted to update you on what has been happening and all the news that has happed.  I will continue to keep you posted as we prepare for this trip and for this upcoming treatment of HOPE as it evolves.

An article featuring Fallon was also written recently by Stephanie Kulish and can be found at:

http://www.liberalamerica.org/2013/09/12/fallon-mirsky-girl-looking-miracle-video/

My dad and mom also set up a website to raise funds for the trip to Mexico at:

http://www.youcaring.com/medical-fundraiser/help-fight-for-fallon-/124348

Love,

Fallon

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January 8, 2014

1504020_10101024455470010_2035405173_nHi-

Sorry it took me this long to write, but I haven’t been feeling well at all.  In fact, I am very ill as I am writing this, but I promised that I would write and therefore, I wanted to keep my word and let you know all that has happened during my trip to HOPKINS.  I just don’t know how long this letter will be.  If I should forget anything, I will put it in the next time I write.

I have been so very sick during this entire trip.  I have been sick from the moment we have left the house to even now as I am writing this.  Thank goodness I have my dad because he is trying to take such good care of me.  I am so lucky to have him.  Even though we are making the big drive home in a few hours and my dad should really be resting and getting all the sleep that he can because not only that, but it is also very late at night and it is the time that people should be sleeping, But instead of sleeping and getting his “rest,” he has remained awake to make sure that I am ok and going to make it through the night.

I just have the BEST dad in the whole entire world.  There isn’t anything that he won’t do for me.  In fact, since I have been so weak, my dad has been picking me up off the bed and carrying me to the bathroom Everytime I need to use it since I can barely walk.  My dad makes sure that I have taken all my meds and have eaten.  He also tries to make me smile even when there doesn’t seem to be anything to smile about.  He also always tries to keep my “hopes” alive and always tries to keep me going even when I don’t see that there is a light at the end of the tunnel.

I only hope that I get better not only for me, but for him as well.  I pray for the day that I become a doctor because not only do I want to be a doctor so that I can help others and make a huge difference in the world, but I know that would make my dad so proud.  It is a dream that I have for myself and a dream that my dad has for me.   I only hope that I get to become it and my dad gets to see it because it will make us both the happiest in the world.

I want to get better so badly because I want my life back.  I was robbed of so much and made a prisoner to this horrendous disease.  However, not only has it affected me, but also it affected my family as well especially my dad.  It really took affect on him because not only has it cost him emotionally, financially, physically, etc.  He has lost so much because of this illness and it isn’t fair to him.  He works harder than ever because of this illness because of how expensive the treatments are and how he has to take me to treatments as well.  I also see the stress and the emotional toll this illness has taken on him.  He watches me suffer and he wants to help so badly.  He keeps saying that he would “take away this disease if he could.”  I definitely know he would.  He even told me that he would take it for “himself” if he could, but I told him that he would give it back in a second and wouldn’t last if he even did that.  I don’t wish this disease on my worst enemy because it is so horrible.  I see the despair in his eyes because as much as he wants to help, his hands are tied.  Not only can’t he wave a magic wand and make me well, but also he can’t even afford the treatment anymore necessary to get me well.  It really kills him to watch me suffer like this and know that he can’t really help.  I know that if he could do anything… he would.

My dad and I have such a special bond and I know that if anything would happen to me, my dad would never make it through it and recover.  My dad even threatens me and tells me how he would never be able to exist without me.  Since I am the one who is the “nurse” in the family, he even states that he wouldn’t watch his weight or take his medication because there would be no one to make him do it and watch him with it.  He says this because he does anything to make me “keep going,” but he thinks that I am in control and by saying this that I will be able to last and continue on.  He would be at a complete lost if something happens.  But as much as he wouldn’t be able to live without me, I would never be able to live without him and it really scares me that something will happen to him because he works so hard and is under so much stress.

Anyway… getting back to all that has happened on this trip.  What a disaster this entire trip has been.  We are so lucky in a way that we ended up driving to HOPKINS.  We would never have gotten out the airport with the way the weather has been.  Flights are being cancelled like crazy because of the weather, as it is cold, snowy, and rainy.  You never know what to expect anymore with this weather because it is even freezing cold and having ice storms in Florida (something you would never see or expect).  The airlines still even haven’t really caught up from the delays and cancellations from the snowstorm that we had last week.  In fact, the day that we were supposed to leave for HOPKINS, they ended up having to actually shut down the airport because of the way the weather was.  So we wouldn’t have gotten out anyway.

So we drove down to HOPKINS.  Yet, a normal 4-hour drive took us like 7 hours to get here.  I can’t tell you how many times we almost turned around to come home because I was not feeling well at all.  My autonomic dysfunction was really flaring up and I was really suffering.  I definitely can’t sit in a car for this length of time.  In fact, I am dreading driving home because I don’t know how I am going to do this.  Despite all the extra medications that I took and how early we left so that I would hopefully “sleep” in the car, I was really suffering and in excruciating pain.  I definitely learned that there is no way that we are going to be able to really take a car on trips like this.  We really have no choice but to “fly!”

But we continued to HOPKINS despite how bad I was feeling because we knew we had to come.  My body was so bad though when we arrived from the trip that I was so extremely sick the entire day. To make matters worse, we ended up driving to HOPKINS the same day as the first appointment with the doctors because we wanted to save as much money as possible since we don’t have any extra funds available.  We don’t even have the funds to pay for this trip and don’t know how we are going to pay for it.  So instead of coming the day prior to my appointments like we usually do so that I can “rest” and how the doctors usually prefer, we ended up coming the same day so that we could avoid one night of paying for the hotel because every little cut helps.

I had the first appointment with the doctor and things didn’t go very well.  The doctor didn’t like what he was seeing, but unfortunately he didn’t do very much.  I saw my regular GI doctor here at HOPKINS, and she also had me see another doctor who was supposed to be very knowledgeable in my illness.  However, I really felt it was a waste of time to see this other doctor because he really didn’t do anything. Instead, he wants us to come back in about 2 weeks for lots of tests because he wants to see how bad things have gotten since he sees a huge difference in me from the last time I had these tests.  So he wants me to come back for another weeklong stay, which I will undergo so many tests, which include a 4 day gastric emptying study, esophageal manometry, pH study, anorectal manometry, Breath study, etc.

The doctor that we saw said that I am doing extremely horrible and something of course needs to be done or I am going to die.  But he told me that there really aren’t any good options.  He said I need TPN desperately through a central line, but he said that is a very bad way to go because it will give me lots of life-threatening infections and I can easily die from it.  He also said I can go the route of get a J-tube, but my body is very accepting of it because of the neurological disease and autonomic dysfunction.  So there just isn’t an easy answer.

The doctor also told me that one of the medications that I am taking is actually contributing to killing my heart.  I didn’t know that this was occurring, so in a way it was good that we saw this new doctor in that aspect. At least I know this new fact.  The doctor told me that it causes heart failure and that is why it has not been approved in the United States.  So now I have to worry about that causing my heart to fail in addition to my heart failing because of my illness in general.  My heart is already suffering like crazy because my bloods are falling, I am malnourished, I can’t absorb, I have lots of pressure being put onto because there is so much ‘air’ on it from the gastroparesis, etc.  So… to have the added problems of the medication causing me heart failure on top of all the other chances, it is not good.

I really have no choice though but to stay on this medication.  So I don’t know what to do.  I get this medication out-of-the-country, but it seems like all the medications that are somewhat helpful for my stomach have been shown to cause problems.  In the past, all the medications that I have had been on such as Zelnorm and others have been taken off the market because of heart issues, so I am not quite surprised that this medication that I am taking also causes it.  You know?  But I really have no choice but to stay on this medication despite the fact that it is “killing” my heart and causing it to fail as well.  It can easily cause an arrhythmia, but I cannot stop it.  I did at one time try to lower the dosage and try to come off of it because it is also a drug that feeds my pituitary brain tumor, but unfortunately I couldn’t even do that.   When I tried to lower the dose, I became even more incapacitated with pain and I couldn’t manage.  Things were so much worse without the drug and I couldn’t even live without it.  So there is honestly no way I can stop it.  So… I guess that only leaves that there really needs something to be done… a cure for my stomach and GI problems before it is to late because not only are my GI problems extremely life-threatening because not only do I weigh only in the 60s, I can’t absorb, I am malnourished, it is affecting my organs, it is causing me to aspirate, etc. but the meds are affecting my heart and killing it as well.

My GI doc is now also telling me that I need to go someplace else that can help me before it is too late.  As a result, it appears that I am being sent to Cleveland Clinic.  They made an appointment for me in about 2 weeks there, but when I spoke to the Cleveland Clinic, they said that they might want me to see a different doctor. So I will know more information about this tomorrow.  Never a dull moment.

They are also sending me to CLEVELAND CLINIC because not only is it hoped that they will be able to do something, but that is the hospital where the transplant can occur.  HOPKINS doesn’t have the transplant, as very few hospitals in the country are able to do it.  So since Cleveland has this option and since there is supposed to be very knowledgeable doctors in my disease there…we are headed there.  I am also heading there because I desperately need surgery because I have the blockage/twist in my colon and I cannot go to the bathroom at all basically.  I also am ‘fermenting’ or ‘rotting’ inside with the drugs and whatever limited else I am taking in and therefore I can easily go into Sepsis and die. However, I really need to be in the best of hands for this surgery to occur, and it is thought that the doctors in Cleveland might be better able to handle me. I just hate being a little ‘hot potato’ being bounced around.  But unfortunately I am in such bad shape and have a very rare condition that I need to go to a place that can handle me and see specialists that are knowledgeable in not just one part of my illness but in my overall disease as well. It just stinks that I am going to have to go on another trip because I don’t know honestly if my body can last that long, if I can make another trip, or even how we are going to afford it.  But I guess we really don’t have any other choice.  All we can do is hope that I make it until then and hope that I receive funds.

So this trip really wasn’t as helpful as I thought it might have been.  I really wished I would have gotten better news while I was here, but unfortunately I didn’t. All I was told was three things.  I was told about the medication that I was on that it causes heart failure and arrhythmia, that I need to have all my testing repeated because of how bad things have gotten, and that something has to be desperately done because I am rapidly deteriorating (which is something that I already knew) and that is why I am being sent and will be heading to Cleveland Clinic

What a trip though this has been.  Not only did we have to deal with all this stuff, but also we had to also deal with stuff from home because of the stupid weather.  My mom stayed behind like always because she had to watch the house/business and we really couldn’t afford for all three of us to go.  However, we are kinda lucky that she did even though I would have loved for her to be with me because the weather has been so very cold and it has caused so many problems at home.  For one thing, the smoke alarms in the house keep going off out of nowhere.  In fact, my mom was literally coming down the block because she was coming home from work and she could hear the fire alarms going off in the house.  Of course she was freaking out because she didn’t know at that point it was a ‘false alarm.’  My mom isn’t a person that can take surprises and she didn’t handle that very well.  Then she went to the thermostat and for some strange reason it was reading really cold in the house.   My dad and I are still trying to figure out how it dropped so low because the thermostat is set at certain temperatures and it never is supposed to drop that low.  So we were scared that the heat broke or something, which would definitely be a disaster because it is only like in the single digits.  Finally, we got a phone call that you can’t flush the toilet.  It appears that the water doesn’t come out.  My dad is thinking that the pipes froze in the wall.  So my mom picked the heat up and hopefully it will not only warm the house up, but also it will also make the pipes unfreeze.  I really hope that the pipes unfreeze by the time I get home because how am I going to use the bathroom if it doesn’t?  What a disaster!

So… that takes care of everything.  I am getting ready to leave in about an hour or so to head back home.  We want to get on the road early because we want to beat rush hour.  The less time in the car… the better for me because I am going to have a hard enough time in the car as it is.  I just hope that I make it home without too much pain.  Thank goodness we are kinda leaving now because I am out of clothes.  I did pack a lot, but since I have been so sick, I ended up going through it between all the vomiting and blood coming out.

I am still working on Mexico as well as trying to get funds in general for my medical treatment.  I again tried contacting all the news stations such as ABC news, CBS news, DATELINE, TODAY SHOW, GOOD MORNING AMERICA, EARLY SHOW, etc. If you have any ideas or can possibly help, please let me know.  I am in desperate need of help because I desperately need treatment and I can’t get it without these funds.  We have made so many cuts (even cuts in my treatment that are hurting me too), but we still can’t afford it.  The bills are so great, as we can’t pay the mortgage and barely can put food on the table.  It is like things are just snowballing out of control and I am not going to lie that I am not scared.  I know that I am having a hard enough time getting the treatment in the United States… there is no way I am going to be able to afford the treatment in Mexico that can save my life because just Mexico alone will cost me over $50,000.  All I know is that I am deteriorating and I desperately need help.

The fact is that I need help and I am really getting tired.  I am tired of suffering.  I am tired of being in physical and emotional pain.  I am just plainly tired of this whole thing and watching my life being taken away from me as everyone else moves on.  I’ll be honest with you, I am trying my best to hold on and keep my spirits alive, but it is definitely not easy.  I am tired of being hopeful to only have the carpet pulled out from underneath me.  I am tired and really disgusted of there possibly being out there and it being like a ‘tease’ because I know it can possibly help me and regain my life back for me, but I can’t get it because it comes down to that green paper. Unfortunately I don’t have the money to get the necessary treatment I need and no matter what I do… It feels I will never be able to raise the money I so desperately need.  I am also tired of hearing bad news.  It is at the point where I say, “I don’t get any ‘bad’ news… I just don’t get any ‘good’ news.”  I really need something good to happen already.  I have been suffering too long.  How much longer can I do this? I would do anything for my life back!

So that is why I am still going and keeping my fingers crossed that someday I will get to the other side of the rainbow and be done with all this.  I can dream, right?  One day I will be a great doctor and when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.” I just know that I need help in raising awareness and funds so that this can all occur, so I am hoping that you will be able to help. Time is of the essence, so I am in desperate and in urgent need of your help.

Well… I am going to get going.  When I know more info, I will definitely write!

Love,

Fallon

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January 5, 2014

map1_baltimoreHI-

Well we are off!! Just figured that I would update you on the plans that are happening this weekend and what is doing with going to HOPKINS.

Well… it looks like we are heading to HOPKINS on Monday in Baltimore, Maryland.  Unfortunately we are forced to be leaving at like midnight because we cannot fly like we were expecting to and planning to.  Due to the expenses and such, we had to make cuts in every which way possible and therefore, one of the ways that we had to make a cut was in the way of getting to HOPKINS.  I desperately need to go because I am deteriorating really badly.  The truth is that if I don’t get there… who knows what is going to end up happening because I am really getting bad.  Not only am I in severe pain, but also I am really weakening and deteriorating.  I am only weighing in the 60s, my BMI is nonexistent, I am bleeding in my GI tract, I can’t eat, I cannot go to the bathroom, I am literally fermenting and rotting because I can’t move things through me like whatever little food I do take in and all those huge powerful meds I take, and so many other problems are happening due to my failed GI system such as it is causing my other organs to fail because of the extreme pressure that it is putting on my other organs (even my heart) and causing my bloods to be bad and everything.  It is also causing me to aspirate a lot and therefore, I am literally drowning in my own fluids.  It is really horrible.  Dad keeps saying to hanging in there because we are almost there at HOPKINS, but the truth is that even though HOPKINS is only a day or so away… it still seems like it is forever away.

So we are headed to HOPKINS in hopes that they can help me.  I am going in search that they can because we have numerous appointments.  I have appointments for my neurological disease and for my Gastroparesis as well.  Supposedly the doctors that I am seeing for my Gastroparesis are the best in the country, so hopefully they will be able to help me.  The other doctors in the country actually call the doctor that I am seeing “the guru!”  So… my fingers are crossed so much that something can be done because unless something is done and done soon… we really fear the worst.

I desperately need the multivisceral transplant, which means that I need the transplant of the stomach, small and large intestine, pancreas, and spleen, but the transplant is very radical and risky… and extremely dangerous.  We really hope that we can avoid that as much as possible because we don’t even know if I will be able to survive it to be honest with you.  It is very dangerous and risky for a ‘normal’ person… let alone someone as sick as me.  Some of my doctors are saying that I am “too sick right now to even undergo it and if I do undergo it… I will immediately die.”  Yet, if I don’t have it immediately, I will die as well.  So we are really against the wall.  Hopefully this doctor that we will see at HOPKINS will have some further option or will have some way of helping.  You know?

So… we desperately need to get to HOPKINS ASAP.  There really isn’t any other way because we can’t put it off any longer.  Even though we really don’t have the funds to go… we really can’t stall it out because if we do… I probably won’t make it. So… we have tried to make cuts in any which way possible just to get me there.  Therefore, one way we tried making a cut is by how we are getting there.  Even though I ideally need to fly there because sitting in a car for that length of time for me is really impossible and really causes me severe pain and exacerbates my condition, we really have no other choice.  In addition, whereas it would really be better if we arrived in Baltimore on Sunday because the appointments begin Monday morning, we are first leaving Monday morning very early so that we don’t have to pay for an additional night at the hotel.  So… not only is it going to take a lot out of me with the traveling because I am traveling in the car for that many hours, it is going to be even harder for me because shortly right after we arrive, I have to go straight to my appointment instead of being able to rest for the remainder of the day (or at least for awhile) until I have my first appointment.  I know it doesn’t seem like I would really be ‘tired’ or have to rest much after sitting in a car for that length of time because you really don’t do anything, but for me I do have to rest because it really takes a lot out of me to travel.  It really causes me even more severe pain (if that is possible) and really works on my entire body.

I just hope that I will be able to make it there! I know it doesn’t seem like such a huge dilemma or problem to get there because you can just drive, but for me… it is really horrible and a HUGE problem.  It is really going to take a toll on my body.  We are really going to load me up on medication before we leave and hopefully between loading me up on medication and it being like midnight, I will be able to maybe “sleep” through the trip.  I just feel bad for my dad because he will have to literally drive throughout the entire night just to get us there because Baltimore isn’t exactly around the corner.  So… you know dad will be resting today in preparation of the trip.  I just feel bad also because his back isn’t the greatest and he also can’t sit in the car for great lengths of time.  But, he said that he would do whatever he can to get me there because he knows how desperately we need to get there.

We did have an offer of someone to fly us on a private plane to HOPKINS.  However, we couldn’t take the offer because of the weather.  As the plane was a Cessna, it wouldn’t fly if it was snowing or freezing rain, and with the weather we have been having lately… we really couldn’t take the chance of it not flying and getting us there.  The pilot told us that we really wouldn’t know for certain if we were able to go or not until that day that we were supposed to leave, which was Sunday afternoon, and we really couldn’t afford to wait until the last minute to know because we desperately needed to get there.  We really had to get there no matter what and since we didn’t know definitely that we would be able to get there, we really couldn’t chance it.  You know?  Plus… even though we might have had a flight to get to Baltimore, we really didn’t have a flight back.  We would have to wait and see if someone would be willing to take us back to New York and therefore, between the weather being the way it is and then not even knowing when and if someone could take us back later on in the week when we need to come back… we thought it was not the greatest idea.  You know?  Plus… we also figured that we could cut costs as well by eliminating staying a night by driving because we would be leaving Monday morning at midnight instead of leaving Sunday, which ideally should have been when we left.

I am kind of wishing that we could have taken the plane though because it would have been a lot easier on my body.  The trip would be a lot shorter for me and the pain that I will probably be enduring during this trip would be a lot better.  I know that by driving to HOPKINS, I will not only be suffering physically more in the car, but my body will be ‘paying’ me back more afterwards for what I am putting it through.  So… I am really not excited about what I will have in store for myself even after I get there.  But I understand how it probably is the best option considering the fact that we didn’t have a return flight set up and we really didn’t know how the weather would be either (so it wouldn’t even be guaranteed that the plane would fly).  Plus… those planes aren’t really the safest anyway.  After all, a piper just landed on the Major Deegan Expressway today in an emergency landing.  Out of all the times it had to happen… it had to happen the day before I was supposed to leave.  Why is it that things always occur when you are about to need it?   So I guess considering the circumstances and everything… driving is the best option.

smiley-carEven though we are cutting costs by driving, there are just so many more costs to endure though.  Not only do we have the medical costs that are astronomical when we get there because of all the tests and appointments and such, but we still have to worry about the cost of gas (which is like $50-60 a tank and it will easily cost us 2 tanks… 1 each way), hotel, parking, etc.  The hotel is nice enough to work with us regarding the price of the room, but the cost of parking there is astronomical.  I can’t believe how much parking for the car is per night, as they want nearly $40 per night.  Can you believe it?  Gosh… not only do hotels make a killing when you stay there because the amount they charge for the room is a lot, but the price for parking in their own garage is ludicrous!  I think that if you are parking in their garage… everything should be included.  Don’t you agree?  In addition, we also have to worry about food and such.  So… it just adds up and adds up.

We have tried to make whatever cuts that we can and we did whatever we could to try to get me to HOPKINS.  I feel really bad because my family is really suffering because of me.  In order to get me to HOPKINS, we didn’t even pay the mortgage.  I am really scared because we have been having such a hard time paying our bills because my medical bills are astronomical.  Even putting food on the table has been a difficult task.  I never thought that I would be saying that the weeks that we are able to go food shopping and have food on the table that I feel extremely lucky.  To think that I always took that one thing for granted before all this happened.  It just shows that you can never take nothing for granted because even the simplest thing and the very littlest thing that you always think that you will have ALWAYS can be taken away from you in a heartbeat.  There are no guarantees in life and I definitely have learned that through this illness.

We have really made cuts even in my treatment, but even with those cuts… the cost of my treatment is so high.  I desperately need so much treatment and I can’t even get it because of how much it costs.  I really need the help of others because we definitely can’t afford it on our own.  Yet, we are hoping and praying that the media picks up my story or something so that others know about it and others can possibly donate, but nothing has really come about as of yet. But I am still not giving up hope as of yet.  So… whatever you can do to facilitate that everyone else is aware of my condition and how desperately funds are needed, I would extremely appreciate it.  The website that people can donate at is at http://www.Gofundme.com/FallonMirsky or there is donation information at http://www.FallonMirsky.wordpress.com.

So… I will let you know how Hopkins goes as soon as I have more information regarding that.  I just hope that we make it there because I am really doing so horrible.  Dad keeps telling me to “hang in there because we are leaving in a day” but that one day seems so far away and so long.  Anything can happen during this time.  After all, when I had surgery the last time, my jaw literally collapsed and things went from bad to worse in the last four hours before I went to the hospital.  I only fear that the same thing is going to happen this time.  I just gotta make it to Monday.

mmexicoI have also been busy with getting things situated and finalizing with Mexico, as I am in desperate need of getting there and having that ketamine coma there. With the holidays and such, it has been a little difficult talking to him and getting in touch with him.  I have been trying to call him tonight, but I haven’t gotten through.  Perhaps I will speak to him tomorrow or Monday at the very latest.

I desperately need to get to Mexico.  That is the trip that I really am holding out for because that trip holds the chance for me to be “cured!”  It is the only chance where I can receive that special ketamine coma that can potentially put my entire disease into remission.  Whereas going to all these doctors in the United States are helping the individual problems such as the Gastroparesis and neurological diseases, the ketamine coma that I will undergo in Mexico will hopefully take care of everything all at once.  It will reset my entire body such that it will hopefully put the entire neurological disease, autonomic dysfunction, Gastroparesis, etc. into remission and it will hopefully give me back my life.  It will also hopefully allow me to eat again and not make me have to undergo that rare, radical, and dangerous transplant.  But unfortunately, not only is the coma very radical and risky and only can be done in Mexico, but it is extremely expensive, as it will cost me over $50,000 and I will definitely not be able to afford it without help from others.  So… it is really important that I receive that attention from the media because I need my story to be known so I can get as many funds donated as possible.

I am really hoping that the trip to Mexico will work out.  My birthday is coming up, as it is February 7th and that would be the best birthday present I can ever get.  It would be great to be able to be able to have the coma and wake up for my birthday with a new body.  It is hoped that I will be able to have the coma a the end of January or beginning of February because I am doing so horrible and need it as soon as possible because I am deteriorating so much.  However, it is also contingent on the fact that I can afford it and that our passports arrive.  Our passports should be arriving hopefully soon and I am hoping and praying that I will also have the funds soon.  So… I am hoping that I will be able to undergo the coma in the latter part of January or the beginning of February.  But of course I need the help of others in order to make that happen.  So again… if you can do whatever you can to facilitate this and spread the word… it would be much appreciated.  Of course prayers are extremely helpful as well and extremely appreciated.

Well… I guess that takes care of the medical treatment talk.  I can’t wait for this winter season to be over.  But I honestly think that this “winter” has actually just begun.  It has been so brutally cold lately and therefore, I can’t even go outside.  Not only does the cold affect my illness because it causes me severe pain because it constricts everything and I am so hypersensitive, but I have to be extra careful because I have no immune system and I literally can catch “everything.”  The chance of me catching even a simple cold is so high and I have to be extremely careful because the littlest thing is magnified for me because of my condition.  Therefore, the littlest cold is like catching the flu to me and can easily cause me to be hospitalized.  I have no body fat on me and with the illness also being autoimmune and such… it doesn’t really help.

Snow-shovel-shovel-frozen-freeze-smiley-emoticon-000799-largeTo make matters worse, I hate the snow.  Even though the snow is gorgeous to look at, I shriek when I hear that snow is on the way. I hate when it snows because it means that I am stranded basically even if I have to go out.  I can’t walk, as I am on crutches and therefore it isn’t so easy to walk in the snow with crutches.  They have yet to invent snow boots for crutches. In addition, when it snows, it means it is really cold outside and everything usually freezes.  This also causes me a lot of problems because I have to be extra careful.  Not only can a normal person easily fall on the ice, but also being on crutches causes me the added problems of falling.  I must say that I am pretty good at maneuvering with the crutches and I do impress a lot of people with how good I am with them, but it is still a HUGE risk to go out with them when it is snowy and especially icy outside. So I am kind of really stuck in the house when it snows or rains and it is extremely cold.

I can’t wait for the time when I am better because I can’t wait to be able to play in the snow again.  I can’t wait to be able to go out and help my dad shovel and such.  You think that I would be happy because I get out of “shoveling” and helping to clean up the outside.  However, the truth is that I would do anything to be able to help.  I kind of miss it.  I miss the old days when I used to go out and help shovel and such because not only would we be cleaning up, but also my dad and I would have snowball fights in the meantime.  My brother and I would also have our own fun as we would go sledding and make snowmen and snow angels and have our own fun in the snow.  When we were little, we used to use our little hill that was maybe 3 ft. high on the side of our house as a hill to go sledding down.  Even though it was so little and it ended up with smashing into the house, it was a HUGE hill to us and we had a great fun time too.  So when we couldn’t get to the park to go down that HUGE mountain of snow, we would use our own hill and it was just as fun and just as good!  Gosh… I guess when you are small, you can make anything work and can make anything fun.

We would also make the best snowmen.  A snow day would not be the same if a snowman wasn’t made.  Every time it snowed, we would make a snowman no matter how small it was.  We would then use carrots, licorice, and bones and whatever else we could find for the face.  It was so much fun.

I miss the days when we would bundle up and go out to have all this fun, and then we would come in to have hot soup and hot chocolate.  I would do anything to be able to relive these days again. But unfortunately we can’t move time backwards.  I can only hope that I will someday be cured and I will be able to have this opportunity to do this stuff again.

IMG_0555In the meantime though, Max loved the snow. He couldn’t stop wanting to go out.  He would keep begging at the door to be let out and he went on more walks that day with my dad than I could count.  My dad surely got a lot of exercising that day because of him.

I also have a turtle named GEORGE and he was even interested in the snow.  Of course he couldn’t go out, but he loved to walk around and look out the window at it. I guess everyone seems to love snow!!IMG_2010

Because of the snow, my family got to stay home together.  My dad didn’t go to work and either did my mom.  My dad is so funny because ever since we got him the iPhone and got him to join the “technology age”… there is no stopping him.  He is literally addicted to his phone.  He swore he would never leave his “flip phone!”  In fact, he was really upset when we got him the iPhone because it wasn’t the “flip phone” and he had absolutely no idea how to use it.  But he surely has come a LONG way because is so good on it now. He is so funny too because he loves to check his email and his LINKED IN account.  He loves to see how many “contacts” he has and how “popular” he is.  He really gets a “high” on that.  In fact, he is so addicted to his phone that all we ever see him do is check it. He even checks it as soon as he wakes up in the morning and the last thing before he goes to bed.  I told him, “In order to talk to him, I literally have to ‘facetime’ him or text him!”

IMG_6739Well… I guess I better get going.  There is so much to do and I am not really feeling well.  I have less than 24 hours until we leave and there is so much to do.  I will keep you postedwhen I get down there and let you know what happens.  Hopefully I will have good news.  Keep your fingers crossed.  I only wish that it was springtime or summertime because at least when it was that time we would be able to sit in the harbor and watch the boats pass.  Now that it is cold outside and wintertime, I don’t think we will be doing anything but sitting in the hotel room this time.  Even though I really can’t do anything because of my condition, I must say that when we went to Baltimore in the warmer months, I did enjoy sitting by the harbor and watching the boats since the hotel is right on the Baltimore harbor.  However, I guess I will just have to watch the Harbor now through the view of my hotel room, but I doubt that will do any good because I doubt anyone will be outside especially in this weather.  I am sure it is going to be totally night/day from when we were there in the warmer months.  But like my dad says “we aren’t there for a vacation!”  But the difference is that it really relaxes me to watch the boats and such… especially since I used to love to go to the beach when I was younger and so wish I could go back there now.  I haven’t been to the beach in the longest time and miss it.

So… I guess I will be watching movies and reading to pass the time since we really can’t do much else.  If you have any suggestions on any good books or movies to see, please let me know.

823520_10101022499330130_1107267927_oI just wanted to share also a picture of me.  With everything happening, I haven’t been doing really well.  However, I was fortunate enough to have someone try to make me feel better today by doing my hair because after all… if you look good, you feel good.  So they did my hair all with curls and everything.  It looked so pretty.  I never felt so pretty before.  I only wish it would have lasted forever.  But at least it made my day!  Thanks for bringing some happiness into my life!!  I don’t get to feel “pretty” very often!! 

Well… talk to you soon!  Wish me luck.

Love always,

Fallon

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January 1, 2014

Happy-New-Year-2014-Wishes-WallpaperHi-

This isn’t going to be very long, but I just wanted to wish you a very HAPPY and HEALTHY New Year and a very wonderful and successful 2014.  This is the very first blog of 2014, which I am hoping is the start to a great year… a year that I will be able to tell you of wonderful and interesting information instead of the same old information of how “horrible” I am doing.  I am hoping this will be the year that I will be able to say that a MIRACLE has happened and I am better instead of sounding like a broken record already by always saying how “horrible” I am doing and always saying how I am “deteriorating.”  I am only hoping that this year is not a great and wonderful year for me, but one for you as well.

I tried to have 2014 start out on the right foot right from the beginning.  I have been extremely ill… especially tonight.  I really need to have something done and something done fast because to tell you the truth… I am really deteriorating.  I don’t know how much longer I can honestly hang on.  I am barely hanging on by a thread.

1522909_10101011610436560_484141944_oI am so very weak.  I can barely keep my head up and I barely can get off the couch or out of bed.  I do have my VERY FEW good moments and I try to take advantage of them as much as I can, but on the hold… I am so incapacitated.  I spend the bulk of the day and night on the couch or in bed screaming and crying because the pain is just beyond belief.  I ache from the very core of my body and the center of my bones to the surface of my skin.  It is nonstop!

Not only is the pain out of control, but also so is my stomach and Gastroparesis.  I can barely eat anything and I can’t even go to the bathroom at anymore.  It is at the point that barely anything comes out and if I am lucky (and only if I am lucky)… I will get some mucous.  It is so foul smelling and smelling like rotten eggs because nothing is moving.  The doctors are worried that I am going to go into Sepsis or something because the food and drugs that I am taking in are just “rotting” and “fermenting” in my body instead of leaving, as they should.  It is also getting to the point where my intestines are getting so “weak” that they don’t even want to “push” anything through.  Therefore, it is even harder to go to the bathroom because I have lost that “Pushing” and “contracting” feeling.  Whereas I used to be able to push and contract my intestines to try to eliminate the wastes even though nothing would come out because there would feel as if there were a blockage, I now don’t even have that ability anymore.

In addition, I lay on the couch in a curled up ball because my stomach hurts so badly and is so bloated.  I can’t eat or drink anything at all because even though I am dying of thirst, the little amount I do drinks only bloats me further.  I literally look at times like I am 9 months pregnant and all I can do is hope and pray that someone “pops” me.

I am also having extremely hard time breathing.  I am aspirating like crazy.  I am drowning in my own fluids.  Therefore, even the littlest amount I do drink is causing even more breathing problems because it is going directly into my lungs.  The doctor said it is really bad if I am aspirating when I am “awake” and sitting up because usually people only aspirate when they are sleeping or lying down.  They are blaming a lot on the failed GI tract, but whatever the cause is… the fact is that unless something is done… I am going to drown in my fluids because I can’t breathe.  All you hear is “gurgling”. In addition, I am starting to go through the exact feelings that I went through with my intestines in that I can know longer have the energy and ability to contract my lungs and actually “breathe.”  Just as I explained earlier in how that they are so weak that I can’t even contract my intestines anymore to push things through in order to go to the bathroom and eliminate things, it is getting to the point that I am feeling too weak in the lungs now too to get them to “squeeze” and “breathe!”  It is really freaking me out because the exact same feelings I went through with the intestines in how they felt really “weak” and it ended up with not being able to push them anymore at all… that is what I am feeling now with my lungs.  So I am really afraid that if something is not done fast… I am not going to be able to breath soon especially since it’s getting so bad so fast!

To make matters even worse, my heart isn’t doing well either.  I went for my bloods the other day and like always… they have fell.   I got the call from the doctor that the bloods have fallen again and I desperately need to go to the Hospital for a transfusion.  No longer are my bloods even listed in just “out of range” anymore but they are listed in the extremely “critical” values.  I know that I am really walking a dangerous line with those bloods, as I can easily have an arrhythmia and cardiac arrest, but I don’t go to the hospital because there really isn’t anything that they can do around here.  The truth of the matter is that I need to go to a hospital like John Hopkins or even to Mexico where they can handle me because not only do I need a transfusion that will stir up my entire disease and I need to be in a hospital that will be able to handle my entire disease (which very few hospitals are able to), but I need to be in a hospital that can correct the issues as well because otherwise it will just be a merry-go-round back to the hospital because there are underlying issues causing these problems.  The hospitals around here are unable to handle me and they have even discharged me in the past even when they have acknowledged how “sick” I am because they say that they can’t “help” me because they can’t “handle” my situation.  I am extremely complicated and I need to be in a hospital that is able to give me the care that I need.  Unfortunately there aren’t hospitals around here that can do that.  So… not only does it mean that I have to worry about traveling to the hospital and having my dad away from work and such, but I have to worry about expenses as well.  There are so many burdens that come along with this disease… and one of the worse burdens is the financial burden.

1492234_10101011609792850_1691868988_oI spent the last day of 2013 having a ketamine coma/infusion.  With everything happening, at least I was able to “sleep” the day away and it was a way of “peacefully” ending 2013 even when the year was such “HELL” for me because at least when I am under ketamine… nothing bothers me.  If I can remain under ketamine 24/7… I think I would.  The doctor gave me an all-time high of the amount of ketamine today.  He gave me 200 mg per hour.  When he told me how much he was going to give me, I was a bit hesitant because I knew that was a lot. I was scared a bit because I never had ketamine at that amount.  But when I asked the doctor about if he was “sure it was safe and ok?” he said, “When I go for the ketamine in Mexico, it will be much higher.”  But the difference is that when I go for the ketamine in Mexico, I will be fully on breathing machines and other machines to keep me alive, which is not occurring today.  So I was afraid that the amount of ketamine that my body today would not be able to support the amount of ketamine that I was given today.    But he told me now to worry.

The ketamine that I was given today was extremely strong.  My dad said he never saw me so deep into a “sleep” before.  He said that I was making the weirdest noises when I was breathing, as I was making these very deep “snoring” noises.  My dad said that I looked like I was gasping for air, as if I couldn’t breathe.  I was told that not only was my dad getting worried, but so was the doctor. It appeared that the ketamine was a really heavy amount and it really suppressed body.  My dad couldn’t wait for me to awaken because of how “out of it” I was.

Not only did we run into that complication that the ketamine was too heavy of a dose and it was suppressing me into a really deep sleep and such, but I ended up waking up when the infusion was only halfway through.  I ended up kinking the line somehow and therefore I woke up because the infusion had stopped.  Yet, when the doctor realized the half the ketamine had not entered my body, they had to knock me out again to put in the remaining half of the bag.  What a day!

The truth is that I really need to get to Mexico.  I need to get to Mexico in more ways than I can tell you.  In fact, that is my New Years wish.  I am doing so horrible.  Mexico is like the ONLY place that can help me to tell you the truth because that is the ONLY place that can give me the amount of ketamine that I need to hopefully put this illness in remission.

This coma in Mexico is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.  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.  The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU.   So far, only about 100 patients have underwent this coma. For many, it has been miraculous!  However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition.  Yet, it continues to be my only hope because there are really no other options available, and unless something is done soon, I will die.

1490701_10101011606664120_515885515_oYes, going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself. !!  I have lost even the simple things in life that people take for granted… eating, walking, taking showers, even having that three letter word known as FUN.  I think that everyone in this world should know about my disease in the same way that they know what cancer or AIDS are.

I have been in constant contact with the doctor who is supposed to be doing the coma, and he is a really nice doctor.  Even though he is Mexican and I will be in Mexico, he does speak English and extremely helpful.  I was a bit scared about going because my dad and I barely speak any Spanish whatsoever, but the doctor has been really helpful in helping us in understanding everything that we need to do and getting things done.  He even said that he would make sure that he would make sure that my dad understands everything that is happening when I am in the coma and he would be fully in the picture on every aspect.

This doctor really seems like one amazing doctor.  He even gave me his cell phone number, which is very out of the norm for a doctor.  It is so weird when I call him because everything is in Spanish… even him when he answers the phone.  However, when he hears my voice and I tell him it is me, he then of course changes to fluent English.  However, until he changes, I have no idea what is said.  I have no idea what the messages are being said if I do incur any because sometimes I reach an answering service and I also call the hospital and the calling card.  I guess I better start brushing up on my Spanish if I am going to end up going.

The truth is that I need to get to Mexico ASAP.  In fact, I was just telling my dad tonight that I need to get to a hospital because I am going to die soon.  I am barely hanging on and I need help.  But the truth is that I can go to any hospital, but the only place that really potentially help me is going to Mexico because only that intensive ketamine coma can really hopefully “cure” me of this Hell of a disease.  Doctors have once said that if “HELL was a clinical medical condition, it would be known as my illness.”  Everything basically stems from the neurological condition and autonomic dysfunction.  In fact, they are saying that this ketamine coma not only can “cure” me of this neurological condition and autonomic dysfunction, but it can also cure me of the severe Gastroparesis as well.  They said that they had patients who couldn’t eat for years are able to eat again.  In fact, the doctor even said that he would definitely choose this risky and radical ketamine coma over going for that multivisceral transplant that the doctors want to do if I don’t get to Mexico because that transplant is the most dangerous kind of transplant that you can have.   This doctor really feels strongly that even though this ketamine coma is radical and risky, it is very hopeful that it can make a huge difference and “cure’ me.  It can be the great answer we have been looking for.  He said that I need ASAP.

The doctor says that this ketamine coma really can make this whole entire disease go into remission.  He said though that I will have to have the support of friends and family especially after the coma though because this procedure is so powerful that not only does it “reboot” your entire body and essentially wipes out your nervous system and “resets” your body, but you have to actually relearn everything.  You have to relearn how to use your entire body and therefore, I will really need the help of friends and family.  So I am really hoping that this coma can really make me a “Changed” person and leave this old life in the past.  I can’t wait to be able to start anew and have a fresh start on life again.  I can’t wait to be able to enjoy all the stuff that life has to offer and be able to achieve all that I ever wanted to do and was robbed of such as become that doctor that I dreamed of becoming.

Yet some things stand in our way.  First…one of the major things is that we can’t get out of the country without passports.  Since my father and I never really have been out of the country, we had to get passports issued.  We immediately went to get them issued, but of course they couldn’t be done overnight.  We couldn’t believe the cost of getting them, but we had no other choice but to pay the high price of them.  Even the cost of getting them sent regular mail, which took 4-6 weeks, was astronomical.  To have it sent “regular” mail they wanted $180 per passport and then to have it rushed to 2-4 weeks, they wanted an additional $60 per ticket, which would mean it would cost “$480.”  Of course we couldn’t afford that amount, as we are having even a problem even managing coming up with the “regular price” of $360.  To make matters worse, they didn’t even take credit cards, so we had to even have the money up front.  So… we are hoping that the passports will come as soon as possible and as close to 4 weeks as possible even though they allot 4-6 weeks.  I just don’t know how long I can manage, so I am hoping it is soon.

In the meantime, it will give us time to get money to pay for the trip.  This is another HUGE problem.  The coma will cost OVER $50,000, which is something that I definitely can’t afford without the help of others.  I desperately need help from people, so if anyone can think of any way of raising funds, please let me know.  My life literally depends on this.  I am rapidly deteriorating and desperately need it.  I have tried to contact the media, post on Facebook, make posters, asked to spread my link, etc. but nothing really has been successful.  The truth is that I need help from you.  I know when you go to my “gofundme.com” site, it looks like I might have raised a lot of money, but the truth of the matter is that I raised all that over the course of nearly 2 years and as a result, it was really like raising nothing because the amount that was spent during that time far outweighed that amount.  So even though it did make a difference and was extremely helpful in paying for things and much appreciative, it didn’t make much of a difference as you might be thinking and it isn’t where this money is still available to have to put towards Mexico.  You know?  So if you can please help me in anyway possible… please do.  My website is www.Gofundme.com/FallonMirsky.

1504234_10101011605830790_696019875_oIn the meantime, my dad and I are supposed to be leaving on Sunday for John Hopkins Hospital in Maryland.  I am supposed to be going to see my team of doctors there.  I desperately need to see them because of how bad things have gotten.  Plus, this is my last and basically only option that I have if I can’t get to Mexico.  If I can’t get to Mexico to have that really intensive ketamine coma to help things, I need to take other actions.  I definitely can’t last the way that I am doing now.  I might even be forced to undergo that multivisceral transplant that is very dangerous because I just don’t have many other options.

When we go to Maryland, we are supposed to be seeing not only my team of doctors who have been caring for me, but a new GI doctor who is supposed to be the GURU of Gastroparesis.  He is supposed to be one of the best in the nation.  I am really hoping that he can help me.  Everyone seems to know of him, as when I was talking to my doctors in California, they wanted me to see him as well.

However, we also run the problem of the financial problem with this trip as well.  Like I said before, I desperately need your help because we can’t basically afford anything.  I don’t mean to sound like a broken record, but that is the truth.  I never thought that I would ever be writing about this, but the weeks that we have food on the table, I actually feel “lucky” and “fortunate” because there are so many weeks where we cant even afford that.  We have been having so many troubles paying our bills… including our mortgage.  We honestly are at our wits because despite all the cuts that we have made (even cuts that had to be made in my treatments and have caused me to suffer more), we just keep getting deeper and deeper into a hole.

Even though we are scheduled to go to HOPKINS this Sunday, we really don’t know 100% sure if we are going.  I am hoping that we are going to be able to go because I am suffering so much and I also need to see those doctors, but like I said above, we are having these financial issues and we don’t know if we are going to have the funds necessary to pay for this trip. As it is, we already had trouble with the plane tickets to even get to HOPKINS.  I had discounted plane tickets that expired the last day of 2013, and the airline refused to extend them for one more week.  Can you believe that I was just one week short?  Anyway, I ended up having to pay an extra $250 in order to be able to still use those tickets and it wasn’t like we really had that money to do that with.  Luckily, we recently received a donation that at least covered that part.  So now all we have to do is worry about the rest of the trip, which is still plenty because we still have hotel, doctor bills, food, car rental, hospital, etc.  It just never ends.  But at least this donation got us there.

I just hope that I get the tickets in time for the trip too.  In fact, in order for the tickets to be reissued, I had to literally send back the old ones along with the money so that they can reissue me the correct tickets.  I immediately sent them overnight mail, which of course ended up costing me even more money because overnight mail is so expensive, but I had not other choice.  So the airline should have received it Saturday.  Even though they don’t work on Saturday, they would have it on Monday when they opened and therefore they hopefully could work on it right away.  I also sent along a letter explaining how URGENT this was that they did it ASAP and also asked them to not process the check that I sent them because I really needed the money because of the medical treatment that I desperately needed and couldn’t afford.  I am only hoping that they will find it in their hearts to acknowledge my letter and refund me my check and issue me the tickets without taking the money, but I doubt very much that will happen.  After all, this is the 21st century and people care more about the green dollar than a person’s life.  I am just hoping that that they will at least listen to my letter and at least listen to my request about sending my tickets back to me as soon as possible and with overnight mail because I desperately need the tickets back by Saturday at the very latest.  It doesn’t give them very much time, especially when there is no mail and no one working today because it is New Years.  But I am keeping my fingers crossed that it will all work out.

New-Year-Champagne-new-year-holiday-celebration-smiley-emoticon-000764-large

Well like I said in the beginning of the letter… today is New Years.  I was fortunate to be able to celebrate it with my parents.  Maybe this year will be better because the year 2013 had the number “13” in it and we all know how unlucky “13” is.  Maybe that was why I had all this bad luck this year?  So… that only gives me more reason to be more optimistic that 2014 is going to be a much better year!

I only hope that 2014 is good for my parents as well.  They certainly deserve it.  We all wished at one time or another that our parents were cooler. Well, how much cooler can parents get than superheroes?  Well… my dad is MY superhero. Not only does my dad me everyday lessons—cover your mouth when you cough, wear your seatbelt, etc.—but his real hero work may be saving me from the utter darkness and Hell of this disease which consumes me.  My dad always makes me feel better when I am sick. He always tries to wipe the tears from my face, and always tries to do trick to make me smile.  Even when I was little, he used to buy me toys and played with me acting like one of those powerful superheroes.  As far as he is concerned, I am his “little” girl and does whatever he can to “protect” me and bring whatever happiness he can into my life.

Dad superhero_edited-1There is nothing that my dad wouldn’t do for me.  He wants me well more than anyone I know… maybe even me.  I only wish I can grant him that wish.  I can’t wait to be able to be well so that I can be that doctor that I so dream to be and so that my dad can see me become that doctor as well with that white coat.  I can only dream of that day!  I only wish and pray that day will only happen.  I feel so bad because he runs himself ragged because he is trying to do everything that he can in order to provide whatever he possibly can for me.  He gets up at 3 AM and is out the door by 4 AM to go to work.  Then he doesn’t come home to nearly 7 PM.  Complicate all that by taking care of me, taking me to doctors, and taking care of the home… he really is a superhero.  I only fear that he will run out of his power.  I see the pain in his eyes though all the time because he knows that even though as much as he is trying to help and change things, his hands are tied.  He keeps saying that “I am not going to let you die,” but the truth of the matter is that he isn’t in control.  If he could help it… I would be having every treatment in the world and I would be in Mexico undergoing that coma right now.  But unfortunately it kills him that he can’t provide that for me.  I am only hoping that nothing happens to me because my father will never get over it.  We have such a special bond and everyone that knows us even says that if something happens to me, my dad would never get over it.

886795_10101011609463510_79932422_oMy mom is also very special to me.  She always knows where the hurt is and knows how to make it go away.  Even though she doesn’t come along with my dad and me on our trips, she is never far because we constantly talk to her on the phone.  I only wish that she could come with us as well, but unfortunately someone has to stay behind and take care of the house and business to a point.  Plus, we have a hard enough time affording my dad and me to be able to go… it is even harder to have her go with us as well.  But even though she may not be with us, she is always calling and making sure that things are being done.

Even though it is so difficult to eat and such, it is my mom who is always trying new and innovative ways to get me to eat.  She and I lately have been making this new butternut squash.  I love cooking with her and I love being with her.

So I was so glad I got to celebrate the start of the New Year with the people I love most.  Even though I was too weak to stay up the entire night until the ball dropped, my parents made sure that I was with them by 11:30 when the ball dropped.  My dad came into my room and carried me into the room so that I could be with them when the ball came down.  It was really nice of them to want me to be with them to start the New Year with and I felt so special that they wanted to wake me up and bring me into their room so that they could have me with them when it happened.   So the last half-hour of 2013 and the start of 2014 were spent in my mom and dad’s bed together including the dog.  We watched the Miley Cyrus perform and the ball drop.  Then when it was all over, my dad brought me back into bed by carrying me back.  What a nice way to ring in 2014.

So I will let you know definitely what is happening before Sunday.  I should have news about whether we are definitely heading to HOPKINS or not because it depends on the funds received and saved up, as well as if the tickets are received.  I desperately need to go because I am so very sick.  As it is my dad carries me all over the place because I am so very weak.  I am also supposed to have a meeting with the doctor in Mexico on Friday to further finalize some more plans.  So I will have more news regarding that matter as well.  If all goes well, I hope to have the coma and be better for my birthday.  From the looks of it… I will hopefully be spending my birthday in Mexico because my birthday is February 7th.  That would be the BEST birthday present ever… the gift of getting better… a new body… and a new life! Wouldn’t that be wonderful!!

Just wanted to write and wish you a very HAPPY and HEALTHY New Year. I also wanted to bring you up-to-date on all that has been happening.  I also want to please ask if you had any ideas or can you at least please spread the word that funds are desperately needed.  I desperately need to receive treatment in Mexico and at Hopkins because my life literally depends on it.  Not to sound like a broken record, but I am barely hanging on as of now.  I am walking a tight rope and it is ready to snap at any moment.  As it is… I am collapsing when I walk.  Remember… the website is www.gofundme.com/FallonMirsky.  If you can manage to do anything, I would really appreciate it.  I also recently made up new cards to hand out.  If you want cards sent to you so you can give them out as well, please email me at femirsky@gmail.com and let me know.

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Thanks for checking in & catching up! I am so thankful for all of the amazing people who continue to take this journey with me!  Having your love, support and prayers mean the world to me!  My prayer is that this year brings healing, peace and comfort for not only myself, but also for you.   I won’t stop praying for the cure to be found soon – and I pray 2014 will be the year for it!

Please stay prayerful and hopeful!

Love,

Fallon

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