It is another snowy and disgusting day outside. I can’t stand this weather anymore. I feel like we are living the real-life version of the Disney movie FROZEN. Isn’t it weird how the year that this movie is released the weather is like this? But I shouldn’t be surprised in the weather because my birthday is tomorrow, February 7th, and it has always been known to snow during this time. In fact, it has snowed every year that I was alive except for the year that I had my Sweet 16. I was actually blessed with a nice beautiful and warm day for a surprise.
Even though my birthday is tomorrow, which is Friday, I am not really looking forward to it. It will just be any ordinary day for me. I can’t really do anything because of my illness to celebrate my special day. My illness has forced me to remain isolated and separate from the world, as it stole whatever happiness I could have in life. I can’t do anything for “fun” because of my illness and the only thing this 3-letter word and I have in common anymore is the first letter.
It is bad enough that I can’t go out to celebrate my birthday or do anything ‘special’ for it, but I can’t even have birthday cake. Due to the inability to eat anything, I can’t even have birthday cake. What’s a birthday when you can’t even have birthday cake?
I am not even expecting any birthday gifts. We really are struggling financially and we weren’t even able to celebrate Thanksgiving or the holidays. I surely miss unwrapping gifts. It really never mattered what was inside… I just loved unwrapping. In fact, when I was little, I used to absolutely hate getting ‘money’ for my birthday even though it gave you the ability to buy whatever you wanted. I didn’t like it because it came in an envelope and had nothing to unwrap.
But honestly I am not going to lie and say that I am don’t want anything for my birthday. I do have some birthday wishes that I would love to happen. One wish I would love to happen would be for me to of course get better. Another wish I would love to happen would be to be able to go to Disneyworld or Atlantis with my family, as I would love to go on a nice relaxing and fun vacation with them because we haven’t been on vacation in like 10 years. They have given up so much for me and I can’t thank them enough for it. They literally gave up their lives, as we don’t do anything except sit in the house. My parents should be at the point of their lives where they should be enjoying themselves. However, instead of being able to go out to restaurants, shows, etc. they are stuck at home taking care of me. They are working harder than ever and have nothing to show for it, as they have bills sky high and are in such financial debt because of me. I only wish I could make it better for them and I also wish that I could enjoy whatever time I do have left with my family. My third wish is that I get to have one big party when I am better for everyone that has helped me to get well because without their help, I would not be alive. I really owe them my life! I can’t wait for the day that my family gets to resume their lives and be more like a “normal” family. I owe them more that words can say and in more ways than I can ever show them. I am so grateful for all that they have done for me. I would definitely not be here today if it wasn’t for them.
But I know those wishes are just wishes! I know that the chances of those happening are not really that great. There is one wish though that I really would like and is more realistic. As I sold basically everything in order to pay for treatment, which includes all my jewelry, I would like a “good luck”. I always have wanted a necklace to bring me luck, but it isn’t so easy because of course it costs money and something we don’t of course have. It is also expensive because I can only wear real 14K gold since I am allergic to everything else. But I do have to say that Everytime I hear on TV about an athlete that wears a specific necklace for luck or a person who has a necklace for luck that they never take off… I always wish that I would have that one special necklace as well. But I guess that is why they call them “wishes” because that is all that they are. They don’t really come true. Plus… it would never pay to get this necklace because it is a “material” item when it comes down to it and the money can be better used elsewhere.
So just as the holidays are spent alone and treated like any other day… so will be tomorrow when it is my birthday. I will spend the day with my pets, which are my very true best friends. If I didn’t have my cat and dog, I seriously wouldn’t know what I would do. They really make the best companions. They are the ones who actually get me through those long unbearable days and nights. I am so fortunate to have such a great dog that stays with me throughout the day and a cat that babysits me at night. Between the both of them, I am never alone!
I have been so thankful lately for all the new support and encouragement I have received from people. I really can’t thank you all enough for all your help. In fact, I have met some really truly wonderful people in the past few days that have really taken up the cause to helping me get well. They are trying everything in their powers to get me the funds needed so that I will not die and instead… I will be able to receive the necessary treatments that I need in order to regain my life back. They are trying everything in their powers to help me get the funds needed so that I can receive the radical Ketamine coma that I need in Mexico! I can never tell them enough how appreciative and thankful I am for all that they are doing.
These people have so many wonderful ideas to help me get the funds that I need. They understand that unless I receive the funds, I will not be able to receive the lifesaving treatment needed and I will die. They understand that this ketamine coma is also my last option really and the ONLY way for me to get it is really if I raise enough money. Therefore, whenever anything is planned, I will also post it on my website so that others will know about it.
The first fundraising even that is being held will be February 27th. It is being called “F.F.F. NIGHT” and it is taking place at 7:00 PM at the Melrose Ballroom. The location is 33-08 33rd Street, Astoria, New York 11106. It is an entertainment venue, and there will be drinks and entertainment there. Any questions, please contact Maria Messados at (347) 642-1085 or (718) 849-9292. So hopefully this will be the start of many successful fundraisers so that I can receive the treatment that I need to get well and this time next year I will be able to be celebrating my birthday big time with having FUN and eating birthday cake and everything else that goes along with having a birthday bash! Of course if I do get better… everyone will be invited!!
In the meantime… let me explain to you how I have been since the last time I wrote. Things have not been too good as I am continuing to weaken. My bloods are continue worsen. My heart bloods continue to drop and to be honest… my heart can literally give out at anytime. My organs are also shutting down. I just hope that I make it long enough to get the treatment in Mexico.
I desperately need the Coma soon because I am getting weaker and weaker and if something isn’t done soon… I am going to die. Even though I spend the bulk of my day on the couch and unable to move, I have still been trying my best to do as much as possible to keep up my strength because you know how the saying goes… “If you don’t use it, you will lose it.” But it has been getting harder and harder. I can barely go up and down the stairs anymore and even getting off the couch is getting to be impossible. I am in such severe pain all the time all I can do is cry. In fact, I feel so weak that it feels too exhausting to even do that. My lungs feel so weak that sometimes it feels just to exhausting to take a single breath. My intestines are feeling the same way in the fact that I can’t push a single thing through… not even to go to the bathroom. Therefore, the doctors are becoming very concerned because I am not eliminating the toxicities of the drugs or whatever I am taking in. In addition, I am bloating worse than ever, which is causing me even more suffering.
I can’t afford to weaken because I need all my strength I could have when I have the Ketamine Coma. As it is, I also really need a multivisceral transplant, which includes getting a transplant of the stomach, small and large intestine, pancreas, and liver. However, I have gotten too weak and sick to undergo this transplant and now if I should proceed with that transplant now at this moment, it would be like committing suicide. I am like in a catch-22 because I desperately need this transplant because my GI system is completely dead and yet, I have deteriorated to the point where I probably won’t survive the transplant. We didn’t have the funds for the transplant to undergo it and therefore I weakened too much in order to have it. I can’t afford to have the same thing happen with the Ketamine Coma because this is like my last hope and option of surviving.
I really need to get to Mexico because that is the only place I can receive the amount of ketamine that I need. I will be the 38th patient to undergo this Coma, and as of right now it is scheduled to take place on May 1st. But of course it is all contingent on raising funds because if I don’t have the money to pay for it, I of course can’t go for it.
Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. However, Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.
I really need to have this Coma in so that I can be able to live. Therefore, I need to be as strong as possible because this Ketamine Coma is not going to be ‘easy’ as one my think. It is an extremely radical and risky procedure that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. However, even though I will be the 38th patient to undergo the Coma, it has been miraculous for the others.
However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition.
In preparation for the Coma, the doctor has me trying to build up my lung strength. The doctor has me planned to be on the machines for about 2 weeks. However, due to how severe my condition is and how weak my lungs are, the doctor doesn’t know if they will be able to get me off the ventilators at that time. My lungs are extremely weak and when I go on the ventilators, they will weaken more. In fact, it is very possible that I might need a tracheotomy, but I am not even thinking in that way because I really am petrified that it will happen.
Like I said before, my lungs are so very weak already and they are scared that they will even weak further during the time on the ventilators. I am having a really hard time breathing lately between the problems with the aspirations and the strength of my lungs. It feels as if at times I am too tired to even take a breath of air. My lungs just don’t want to work anymore. It has gotten to the point where it is even too much to blow my nose or blow up a balloon or anything else that I might need to use my lungs for. Therefore, in preparation of this Coma, the doctor is having me blow up balloons and use a spirometer so that I can hopefully build up some lung strength and it will also help me get off the ventilators. So I have been working on that and hopefully it will make a difference because I really don’t want to end up with a tracheotomy. The doctors did say though that if it did have to happen, it would hopefully be only temporary because as I recovered and got stronger, it would be able to be removed.
It is getting harder and harder to eat. Even the little things that I was able to eat before such as the egg whites and medicated ice-pops are getting to be impossible to get down. Nothing even tastes right anymore. It is a real battle to get anything in me and also to take my meds because I have to take over 50 pills daily and whereas it took a carbonated beverage to get the pills down before, it doesn’t even work nowadays. Yet, I really need those pills and we have to find a way of getting them down. In addition, I am really losing weight and only weighing in the 60s. So it is extremely crucial that I keep my weight on and my nourishment up. They can’t feed me intravenously or anything because the illness causes the IV lines to burn up my veins and wreak havoc on them. So it is quite imperative that I receive this Ketamine coma as soon as possible because my body is just failing.
My memory is also worsening. Once an A+ student and a student who remembered everything, I have trouble just remembering anything that I just read on a page. Reflex Sympathetic Dystrophy is a complicated disorder of the nervous system. The effects of can be very extensive and cause changes in both physical and mental well-being. Although, it is typically recognized for affecting the sympathetic nervous system, research has connected RSD to various cognitive difficulties in patients, such as memory loss. It is common to suffer from memory and attention deficits as well as severe pain from the condition.
The memory loss is speculated to be a result of limbic system dysfunction, which is similar to what causes various other problems from the condition. Doctor Hooshang Hooshmand described it well: “The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called “limbic system”. This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain.” This causes many problems that might not initially be linked to a disease like RSD; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgment. Another possible cause is from what doctors call maladaptive neuroplasticity. This can occur because the chronic pain accompanying the condition may distract a RSD patient’s mental resources. According to research, since a person’s brain always remains in a constant state of equilibrium the sensory perception of severe pain can prevent the brain from utilizing itself for more relevant activities needed for daily life. This effect will in turn cause memory loss.
I desperately need this Ketamine Coma as soon as possible. The days are getting so much longer lately because of all the pain and suffering. I am suffering so much that at times I don’t even want to live anymore. So many nights I pray that I don’t wakeup in the morning because I am suffering so much. I honestly don’t know how much longer I can do this and hold on. But deep down I know that I really am a ‘fighter’ and I really do want to live… I just don’t want to be suffering and living in pain like I currently am. I still want to become the doctor I always had the ambition to be so that I can help others, as well as do so many other things. I missed out on so many things because of this illness and I have yet to live my life. So I am keeping my fingers crossed that all this will work out and I will be getting the Coma and the necessary lifesaving treatments soon.
Well… besides trying to just “hang in there” I have been trying to finish up reading the book called CROSS MY HEART, which is written by James Patterson. I am so determined to finish this book, as this will be the first book I have finished reading in like 4-5 years. I used to be such an avid reader with photographic memory. However, this disease has taken that from me and I haven’t been able to read anything. I haven’t been able to finish a book in quite some time, but I am determined to finish this one. I am ¾ of the way through with the book, so I am hopefully going to finish it shortly.
In addition, I finally finished the album that I made of my trip to Mexico with my dad. I custom made it online and it is going to be like a published book. I not only put descriptions of what took place to serve memories, but I also put famous quotes in it as well. I really wanted to get this done so that my dad and I will always have great memories of our trip together. I really love making album books that look like real published books because this way it preserves the pictures better. This way you don’t have to worry about losing pictures or having pictures falling out from actual albums, and you are able to also custom make it so that you can put quotes and writings in it to soughta tell the “story!” I just think it makes a nicer and neater appearance of an album, as well as it will hopefully last longer. I can’t wait to receive it!
The Olympics will beginning tomorrow, so it will be giving me something to watch on TV. It is times like this that I remember the days when I used to be a competitive figure skater. I would do anything to be able to skate again. It was the best times of my life. I used to compete and even did shows. I even did shows at Rockefeller Center. I had the same coaches as 2002 Olympic Gold Medalist Sarah Hughes. Skating was one of my favorite things to do. I would skate before and after school and even though it was a lot of hard work and early mornings, nothing compared to the feeling of being able to soar over the ice or jump through the air. I also loved the smell of the ice the first thing in the morning, as it had one distinguished smell. I really do miss skating so much and only wish that one day I will be able to skate again. But in reality, I think that is one dream and wish that will never happen because even if I should get better, I don’t think that my body could tolerate it. I think my body is way too weak to do it because of how fragile it is… especially my bones. After all, the doctors are already scared that I am going to get a life threatening fracture as it is. It will take years to get my bones and body strong again after I am “cured!” I would no way be able to afford a fall. But I can hope and wish that I will be able to return back to the ice and in the meantime I have those wonderful memories to hold cherish.
Well… I guess that is it for this update. I will write again when I am another year older and another year wiser. LOL. Thank you again for all your help, support, prayers, and encouragement. I really appreciate all that you have done for me and continue to do. Remember… among the various fundraisers that will hopefully be taking place, we are selling bracelets to raise awareness as well as money for treatment. The bracelets come in 2 colors (pink or blue) and in youth or adult. If interested in buying or selling, please email at Femirsky@gmail.com. You can send a check via snail mail to the address I give you or deposit the money at my website and I will ship you the bracelet. However, I need to know your information such as your name, address, how many bracelets, and the color/size. So please email me if interested. All money goes towards treatment for my illness. Please share this link!
Thanks again for all your support.