FALLON MIRSKY

Please help SAVE MY LIFE!

January 30, 2014

on 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.

1529760_10101044034234010_1086216298_o

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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