Please help SAVE MY LIFE!

May 15, 2014

on May 15, 2014


Well… I finally made it to Los Angeles and I had my doctor’s appointment so I have lots to tell. I would have written yesterday when we arrived, but like always, I was too ill when we arrived to write because the travelling really took a HUGE toll on my fragile body. I really wish that I didn’t have to travel across the country to get help, but unfortunately, it appears that the only help that I can receive is NOT in New York. It seems strange considering the fact that I live in New York and New York is supposed to be notoriously known for their great hospitals. But, I guess they aren’t willing to take as many ‘risks’ or anything as much as other places. So I really have no other choice but to travel to places out-of-state if I am going to save my life and get the help that I so desperately need.

It is so funny that the one state that I always wanted to live in all my life is the actual state that I am getting medical help in. All my life I wanted to live in California. In fact, I wanted to go to college in California, but my parents said that it wouldn’t be a ‘good’ idea because it was across the country and if anything should happen… there would be no family nearby. I guess they had ESP or something that something was going to happen that I would need family nearby me more than ever as I got older because there would have been no way whatsoever I would have been able to live in a place by myself. If I didn’t have the help of my family, I would have been dead a long time ago! Thank goodness I have them! But… I do have plans that once I do get better, I am definitely going to resume my life, become the doctor that I always wanted to be, and to live out my life in California like I always wanted!

But I still have time for that because the main thing right now is that I get my health back on track because without my health… nothing is going to happen. People don’t realize how precious your health really is and that “health is wealth.” When you have your health, you really have everything in the world because you are capable of doing anything and everything you want; the world is your oyster. However, when you are ill, you are at the mercy of everyone else. You can’t make a living, you can’t pay for things, you can’t enjoy yourself, you can’t do what you want, you lose people, you can’t live out your dreams, you can’t travel, etc. Believe me… I speak from experience. If there is one thing you should never take for granted, but always appreciate… it is your health!

During this trip I have learned one important thing. I learned that “if you are depressed you are living in the past, if you are anxious you are living in the future, and if you are at peace you are living in the present.” It is a famous quote by Lao Tzu. I have had so much happen to me during this trip that I learned that to truly enjoy myself and be at “peace”, I really need to just live in the current moment. We often spend a lot of time ruminating on the past or agonizing over the future. Instead, we need to take a deep breath and try to be present as much as possible. Don’t let your past and future lives get in the way of the wonderful life you’re living right now. We need to live life to the fullest at the current moment and take advantage of every single thing you experience because you never know when it can be taken from you. I have truly learned this the hard way.

Knowing that I am really running out of time and not knowing how much time I have left, I have learned to appreciate everything in life no matter how small they may be. I also don’t take anything for granted anymore and that is why I like to see and do as much as possible because I never know when I might never get that chance again. That is why when I traveled to California… I begged and begged my dad to please take me to see LA because I never have been to LA before and it was a place I always wanted to see. Thank goodness my dad listened to me and this trip wasn’t just filled with medical appointments. I finally had some happiness in my life, as I got to smile and feel kinda like a normal person in a way for the past few days.

737351_10101141920903340_6125556515126608943_oAfter a long 9 hours, we finally made it to California. It was a very interesting trip from the beginning though because even from the very start of our journey from leaving LaGuardia airport, we had an adventurous time. To begin with, we had the people from DANCE MOMS on our flight that went from LaGuardia to Chicago. It was really awesome to meet them in person. I first saw Jill and I was like “it can’t be!” But then when I saw the other ‘dance mom’… I knew that it just had to be!!

However, the adventure didn’t just stop there. When we got to Chicago, we were fortunate that even though we had a stopover, we didn’t have to change planes. Yet, when we went to takeoff for our final leg to Los Angeles, we had to turnaround and go back to the gate because of “technical difficulties.” We were delayed for about an hour while they figured all these problems out. Turns out that they had to add more fuel and to the plane and do some other workings on the plane. Made you wonder how this plane made it to Chicago in the first place without any problems.

When we got to Los Angeles, we were totally zonked from the trip. Traveling 9 hours is not easy. It really exacerbated my illness, which was expected because it always does. So even though I was really excited to be in Los Angeles and wanted to do something, we really were unable to do so because I was feeling too ill to do so. However, we met with the Concierge person and did set up a “private” tour for the following day because not only was I going to get to be able to see Los Angeles and Hollywood, but I was in for a treat because a great friend was coming to visit me as well.

I was really shocked when we got to the hotel on how nice this hotel was. It was simply gorgeous.  I felt so underdressed compared to everyone else that came because they were constantly having galas with actors, producers, etc.  There was always red carpets out and everything.  Apparently this was “the hotel” to be at.  When I did ask security who was coming though, they said, “We can’t really tell you because we don’t even know ahead of time because of security reasons.”  Even our room was gorgeous.  It had a little balcony and it overlooked the HOLLYWOOD sign even though it could only be seen in the distance.  It also had a huge bathroom and it had a window into it that you had to “fog” out in order to use it because otherwise you could see into it.  I felt like a princess in this hotel because it was just simply one spectacular hotel from the way the people treated you, to the way it looked, to even the way the beds felt! We only stayed at this hotel because it was closest to the hospital.  We are so afraid to spend any money here whatsoever that my dad literally walked across the street to CVS to get sodas because there are no soda machines here and he doesn’t even eat meals except for dinner.

However, disaster struck as soon as we got to the hotel.  When I went to take my ketamine because I was in so much pain, we realized that my entire ketamine bottle basically leaked out during the trip.  I had basically nothing left. I was literally freaking out because not only was I in severe pain, but the ketamine is basically the ONLY thing that works.  Plus, it isn’t so easy to get and I can only get it in New York at a special pharmacy because they have to compound it and everything.  Also, it is so expensive as well because it is certainly not covered by insurance.  Luckily, I was able to have someone pick it up for me so that I will have it when I returned home, but that didn’t help me now.  I also was stuck paying another $200 when I just paid for it a few days prior.  The next day though when we were getting ready, we turned the bag over and we saw that the bottom of the bag was covered in “white” stuff.  My dad was like “Well we know where all the ketamine went!”

Even though we came here because of my health and to see doctors, I was really fortunate and lucky to have one of my best friends come and visit me. For once a smile was put on my face and a trip was not going to be filled with all “bad” news. At the very least, I was going to have some kind of happiness. I couldn’t believe that my BEST friend was traveling 4 hours each way to come see me. Now that is what I call a GREAT friend. Even though she lived so far away and there has been great fires in California (forest fires that people have had to be evacuated from and there is even one literally five minutes away from her home now), she and her sister loaded up the kids and came to Los Angeles to see me. I couldn’t believe it.

So we all got to spend the morning together before I endured my doctor’s appointment and went on a private tour of Los Angeles. It was simply the best because the tour was catered especially to us and we got to see everything that we wanted. It was 3 hours of blissful happiness. In fact, it was a great experience for all because even though they live in California, they were never in Hollywood or Los Angeles either.

10257033_10101143416650850_8567188890227842041_oGosh… If I could live anywhere in this world… I definitely would want to live in Los Angeles. I would do anything to live actually in Beverly Hills. It is so nice and there are so many places to see and so many things to do. When I get better, I am definitely going to resume all my goals and become that doctor that I always wanted to be… all while living in California. It is simply beautiful here! I love it here as the people are amazing and so is the weather. It doesn’t get better than this!

We had an excellent tour of all the studios, the homes of celebrities, Rodeo Drive, The Hollywood sign, the Walk of Fame, and more. Gosh… These celebrities really know how to live it up. We saw the Playboy Mansion, Simon Cowell’s House, Janet Jackson’s House, Dr. Phil’s House, David Beckham’s House, Leonardo DiCaprio’s House, the Spelling Estate (which is HUGE), etc. In fact, when the gates opened at Christina Aguilera’s house, we were hoping that she would be coming out, but instead it was just someone that was servicing the house. Oh well!

10344314_10101143416995160_7005429830781015489_oWe also got a really close look at the HOLLYWOOD sign. We went to a special spot to get this look. It was really cool and we even got pictures of us ‘trying’ to holding up the sign!! I found it really strange though that a sign that was a landmark and as magnificent as this was not lit up at night though but only visible during the daytime.

10169382_10101143010295190_2744381616892164775_nWe also got to see the whole Walk of Fame of Stars, which consists more than 2,500 five-pointed terrazzo and brass stars embedded in the sidewalks along 15 blocks of Hollywood Boulevard and three blocks of Vine Street. Yet it is only at Chinese Man’s Theatre that you can see the actual handprints/footprints of actors. Since my mom wasn’t able to come with us, I made sure that I took pictures of the stars belonging to her favorite singers… Ringo Starr and Paul McCartney.

I couldn’t believe how my dad took to my best friend’s nephews. He really played around with the kids. Even when the littlest didn’t want to smile when we were taking the group shot, my dad picked him up and tried to get him to smile and such. My dad is such a wonderful person.

10371977_10101143208213560_2369429091654651577_nWell… like all other things… it had to end sooner or later. I had to go to the hospital for my appointments, so of course I couldn’t stay in my “fantasy” world forever. So I said goodbye to my friends and proceeded to Cedar-Sinai hospital for my appointments.

Everyone told me that when I go to the hospital that it would be very easy to bump into a “star” or someone famous.   Now I understand why all the rich and famous people are taken to this hospital when they say they are taken to a hospital for “rest” or for a “drug overdose” or something. This hospital is not only like top in the nation (it is ranked #5 in gastroenterology), but it is simply gorgeous. It really far surpasses any hospital I have ever seen in my life. The hospital is also HUGE.

The doctor was simply amazing that we saw. In fact, he was not feeling well and was thinking about calling in ‘sick’ today. Yet, when he saw that I had an appt for today and that I was coming all the way from NY, he knew that he was not cancelling under any circumstances. He took his time and spent about 3 hours with us. He was very knowledgeable about my condition, and he was extremely gentle. He explained everything to us as well and answered all of our questions.

The doctor said that I am a HUGE mess and I desperately need HELP ASAP! According to him time is of the essence, and I definitely do need emergency surgery.  However, he wants to do some further testing so that they know how to best proceed because they noticed a few other things that were not told to me earlier. In addition, they want to look into a few other things that can hopefully help me in not to have to have a bag. Unfortunately money doesn’t grow on trees and we cannot stay while we wait for all the tests and procedures to be planned and everything because those are all wasted days that we will have to pay for hotel, food, and other expenses unnecessarily.  It is also days that my dad is missing out on working.  With just testing and procedures, we will need a solid week at least, and therefore, we cannot afford to take more time away than already is needed because the more my father stays away from working… the more bills are not being paid and we cannot have that happen.

So… unfortunately we will have to return in another 2 weeks for about a week or so for testing because everything will be planned together.  But it is for the better because there is so much that has to be done before proceeding.  The only thing that stinks is that we need money to do this.  So I am hoping that we will really be able to raise a lot of donations during the next two weeks so that we can afford to come back because not only will the trip be expensive, but so will the testing.  The doctor also wants to put me on a new medication that is not covered by insurance, which is extremely expensive, and we will not be able to afford it by ourselves.

The doctor also knows how I don’t really want a bag. Therefore, he is trying to avoid having me get one and therefore, they are trying to access whether they can make a stomach pouch, then remove the colon and part of the small intestine, and then hook the rectum directly up to a very small piece of the small intestine that would remain. But of course that is all dependent on the results of the tests.

So when I return, I will be undergoing many tests. He wants me to go for an esophageal manometry test, an anorectal manometry test, gastric emptying study, even a special exploring colon study that is done under anesthesia, and more. He is already alerting the team and hospital about how “complicated” my condition is. This doctor is really amazing because instead of having a nurse or another member perform the test, he actually does it himself.

The doctor also wants to put me on a new medication. However, it is not FDA approved and therefore, I will have to get it out-of-the country and it will definitely not be covered under the insurance plan. But the doctor said that it really is necessary to try this drug because I am really on my last options and I am going to die. Yet, this pill is almost 10 dollars a dose and I will have to take it about 3 times a day. So unless I can get some help paying for it, I don’t know how it is going to be possible to use it.

The doctor also told me that I have to really watch my diet. I know it might sound strange but I cannot tolerate any fats whatsoever anymore. The doctor wants me on high proteins, but no fats or sugars. So I really need to be careful in what I eat because I definitely need the calories and such, but I just can’t have them in the way of fat or sugars. So I have to make sure that my ice cream that I live on is fat-free and sugar free.

So a lot has been happening. I don’t know the exact day that I am returning, but it should be like in about 2 weeks, and of course it is contingent on the funds. I am really hoping that you will be able to help me spread the word that help is needed and to ask people to please donate at www.gofundme.com/FallonMirsky or at the very least to say a prayer for me. The doctor said that I really need to hang in there because he knows how difficult it is for me, but I have to hold on as long as possible. He said that he would love to jump into surgery, but he doesn’t want to go in “blindly” and he wants to do what is BEST for me as well.

10330413_10101142982276340_8811492113079657494_nSo I guess I am going to have to hold onto all the strength that I have. My friend when she came to visit bought me a key on the tour that said “STRENGTH.” I am really going to have to keep that close to my heart and hopefully be able to hold on as long as possible. I am going to need all the support and encouragement that I can get because it is definitely not easy.

I also want to add that I am $90 away from hitting $25,000.00 from when I first started my fundraiser at www.gofundme.com/fallonmirsky.  I really hope that I will be able to hit that number!  Unfortunately though even though it is great that I raised that amount of money, it has taken since the day before Christmas in 2011, to raise this amount and as a result, the medical expenses that have occurred have far outweighed that amount.  It would have been great if I made that amount in a ‘short’ time like the time I have been asking just for Mexico.  However, even though it does state that I raised $25,000.00, unfortunately it was from before I had the trip to Mexico and some of the funds had to go towards medical expenses to pay for past surgeries, medications, etc. that existed prior to Mexico.  If only I could raise this money in a shorter amount of time, it would really be great.  Don’t get me wrong, I am really thankful that I raised that large amount, but it really isn’t that great of an amount when you take into consideration how expensive my medical illness costs me and how much I paid during the 2 years that I raised it.  If only I can raise this amount in a shorter time.

I am hoping and praying that through the help of others that I will be able to get well and be able to get the necessary treatment to save my life.  However, in order for that to happen I of course need plenty of donations.  Even $1 is one less dollar that I have to come up with and is very appreciative.  So if you can please help spread the word, I would really appreciate it.  Hopefully I can raise another $25,000.00 really soon and it won’t take me another 2 years to do so because I will never make it.

I want to thank everyone for supporting and getting me this far. I will definitely keep you posted, but as for now… I better get going because I gotta start getting dressed. Our flight leaves shortly to go back to NY. When I know more, of course I will write more.




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