I just wanted to personally invite all to tonight’s fundraiser that will be held at the Melrose Ballroom (36-08 33rd Street, Astoria) at 7 PM. It is going to be one fun-filled and exciting night that will be filled with entertainment, drinks, raffle prizes, an auction, etc. Please come and show your support, and please help get me the necessary medical treatment that I need. All money is going towards my medical expenses, which includes the Ketamine Coma in Mexico that I desperately need and is scheduled for May 1st and will cost over $100,000. I am rapidly deteriorating and desperately need treatment. However, without the help of others, I will not be able to receive the necessary treatment that I need and I will end up dying. Any questions, please don’t hesitate to contact Maria Tsikos Messados at
I really need medical treatment as soon as possible, as well as I desperately need to get the Ketamine Coma that is scheduled on May 1st because without it… I will end up dying. A lot has been happening lately and I am worsening faster than ever. I can’t even believe how bad things have gotten since the last time I wrote, which was not so long ago. In fact, I have a very busy week ahead of me because of everything that is going on. I have a hyperbaric treatment scheduled for Friday and a Ketamine infusion scheduled for Wednesday in hopes that something can be done to possibly ‘slow’ things down and help me buy time until I get to Mexico. We are hoping that it will hopefully change things and help because I am really deteriorating and deteriorating fast.
I have been weaker and in more pain than usual. Not only that, but I am also having severe discoloration in my left leg… particularly in my left foot. My entire body discolors, as my illness is known to cause vasomotor changes throughout my body, but it has gotten to the point where my left foot is literally black and it remains black even when elevated. I am really scared because discoloration that I received before Even though I had severe discoloration throughout my entire body from this illness that ranged from turning blue to purple to black, it would always fluctuate and resume somewhat ‘normal’ coloration especially whenever I raised whichever limb was being turning. However, no matter what I do with this foot, the discoloration is remaining black.
I am so afraid that there is really something wrong that it’s going to lead to amputation or something. The doctors have already said in the past that even if I got ‘better’, it was quite possible that the leg might have to be amputated at some point because the tissue has been dying for so many years. They told me that all this discoloration meant that the tissue was dying and it can only take so much damage. They were also worried about any infection setting in because of the fact that it was very possible for it to get easily infected and for gangrene to set in.
I am also very nervous that the discoloration is further showing that my heart is failing because we all know that when your heart can’t pump enough oxygen, the first thing to turn black is the limbs, which is the furthest part of the body. I already know that my bloods are bad and I have been extremely weak. The doctors are fearful that I a suffering from hypercarpenia, as my carbon dioxide level is extremely high. Hypercarpenia occurs when there is too much carbon dioxide, the waste product of respiration, in the blood. Severe hypercarpenia may eventually lead to respiratory failure and possibly death. The doctors are fearful that I have it because it is caused by chronic obstructive pulmonary disease and insufficient oxygen supply. After all, I have been aspirating like crazy and my lungs are weakening so much that it is really making it impossible to breathe.
So we really don’t know what is going on. It definitely isn’t feeling like it usually does. Even the pain that I am suffering is not the ‘usual’ pain. All we know is that my left foot is black, and it feels like there is someone taking a string and tying it around it and cutting the circulation off. I literally feel like someone is strangling my foot and wanting to pluck it off. It is sooo painful.
Therefore, we are headed to Hyperbaric on Friday in hopes that it will help bring oxygen to the area. I am really hoping it does because I am really afraid I am going to lose my foot… not to mention that I am in so much pain. After all, having a black foot is definitely not normal. Besides the primary symptom of RSD being intense, continuous pain, RSD affects blood flow leading to color changes in your skin (blotchy, purple, pale, red, black, etc.). I am used to having my body change colors and fluctuating to blackness, but when it is remaining this color all the time and the pain isn’t the ‘regular’ pain that I am feeling but rather a strangling feeling… it freaks me out even more.
I have also been having trouble swallowing more than ever. It is really scaring me because I am having a difficult time actually drinking things out of cups. I need to only drink things out of straws or have slushies or something. I am losing the ability to actually drink liquids out of cups. I don’t know why that is occurring. But I do have to say that it is scaring me because I remember that when my grandma was dying, having the very same drinking problem was something that she developed as well.
In addition, I am in so much overall pain and I am getting extremely weak. I am having a harder time than ever going to the bathroom and I can’t even eat. All I feel in my abdomen is blurp blurp blurp and it feels like something is ‘leaking.’ We knew that my intestines had a blockage or a twist, which needed surgery, but of course we were putting it off. Therefore, it could be very possible that it caused further problems. I am also bleeding in my GI tract somewhere. Something just isn’t right.
I have ketamine scheduled for Wednesday to hopefully deal with this illness as well. It was supposed to be Friday, but we figured it was more important to go for hyperbaric than ketamine because we wanted to see if the hyperbaric could possibly help brig oxygen to my foot and help with the discoloration. We are still waiting to hear from the doctor for the hyperbaric, but they are thinking about putting me in the hyperbaric chamber under a higher pressure and for a longer time than usual. I am usually under between 2-3 atmospheres. So we will see what will happen.
My illness has really gotten bad lately… worse than you can imagine. I really belong in the hospital, but unfortunately there really aren’t any local hospitals that I can go to. I am way too complex for them, as they discharge me saying how they know I am sick and can’t help me. I can’t believe how I live in New York, which is a state that has such amazing hospitals and yet these hospitals are not equipped to handle me. Unfortunately it takes to traveling across the country to California or to Cleveland Clinic or to Mayo Clinic to get something accomplished. We are looking into seeing a doctor possibly at Mass General, but that will be the closest we can get from home so far and that is still like at least 4 hours away.
In addition, we really can’t even afford to go to the hospital either or even to see a doctor. I honestly never thought I would see the day that we were literally “flat broke.” My dad is literally walking around with $20 in his pocket, we haven’t paid the mortgage in months, and we can’t even afford gas in the car. We don’t have any money whatsoever. I never thought this was ever going to happen. That is why I am so glad that the fundraiser is tonight so that I can hopefully have money to pay for this treatment that I am getting this week and the upcoming treatment that I desperately need. The debt from my medical expenses is just snowballing out of control.
I am really hoping that this fundraiser will go well tonight. I really hope that you will all be able to attend. I am a bit nervous because of the weather though. It is very cold outside and in fact, it is going to be one of the coldest nights. It is only supposed to be in the teens, and I really hope that it doesn’t cause people not to come out. I am really afraid that between it being a weekday and people having work that day and on Friday, as well as with the weather, people may not show up. But I am keeping my fingers crossed that I will still have a big turnout and things will go great.
I really hope that I will be able to come. I know I won’t be able to stay the entire time, but I at least want to make an appearance. Not only do I want to come to see everyone and thank everyone personally for what they are doing for me because I can’t tell them enough what it means to me and how much I appreciate it, but it is going to be one fun-filled night and really never have any “fun” in my life anymore. The only thing that 3-letter word has in common with me anymore is the first letter. However, I don’t know if it will be able to happen.
I don’t know if I am strong enough to be able to go to the event. In addition, the nights are the worst for me. I am the strongest in the morning and I get weaker and weaker as the day progresses. In fact, by about 1 in the afternoon I am literally completely done with that I literally can’t even walk anymore. That is why I need to have all my appointments in the morning if I were to have any. I also take lots of medications during the night and it will affect my medication schedule if I should go to the event, which is something I don’t know if I could tolerate. I am in so much pain as it is and so uncomfortable and I don’t know if I can afford to put off my medication a bit until I get home.
In addition, the weather is not great for me either. I am extremely hypersensitive and I can literally feel everything and anything. This means that even the smallest touch or breeze can cause a pain so excruciating that it’s difficult even to comprehend let alone describe it. Therefore, the coldness really does affect me majorly. I also don’t have any insulation on me since I only weigh in the 60s, so the cold really goes right into me as well. That is one of the reasons why I remain isolated in my house. I can’t go out unless it is the perfect temperature, there is no wind, the sun isn’t so strong because it could burn me, it isn’t raining because the raindrops hurt, etc. So between it being the nighttime and the nights being the worse time for me because I am in the most pain and I am the weakest, as well as because of putting off my medication, it really makes doesn’t go well with it being so cold outside too.
Also, we don’t know if I can come because we are scared that I am going to get sick. As I don’t have an immune system and there really isn’t a bit of fat on me, I am very susceptible to getting sick in cold weather. In fact, the doctors literally ban me from going out when the temperatures are so low because they are afraid that I am going to get sick. I can’t afford to get sick because the slightest cold is like getting a major flu to me and can literally kill me. So even though I would love to come, I don’t know if it is worth the risk.
I also have to be able to eat dinner because I have to keep my weight up. With the fundraiser occurring at night, it will make eating dinner virtually impossible because I can’t be at home eating dinner and then at the fundraiser at the same time. You know? I can’t really eat out of the house because there are only very few things that I can eat and I really get sick afterwards. It really stinks how I have to make sure that I eat, but if I lose any weight, it will be so detrimental and dangerous to me. As it is already, I am already having a lot of trouble keeping my weight on lately. I don’t know if it is because of the bleeding or what not, but I have been having trouble keeping my weight on, as I have lost some weight. When you weigh only in the 60s, you really can’t afford to lose an ounce. Some times I wonder what the point even in eating is because I end up throwing it up anyway, but the doctors and my parents still say that I “have to eat because something is staying down and giving me nourishment.” After all, the doctors have even said that I must be doing something right to have lasted this long… perhaps that could be it!
So I really don’t honestly know what to do because I know how much I want to go and how much I really need to eat as well. I would say that I would eat earlier so that it would make it possible to go, but with my medication schedule and everything… it really makes it impossible. My life is literally like living on a time schedule. Everything has a specific time of day and there is always something going on…whether it is eating, vomiting, taking meds, etc. It seems that whenever I finish something up, it is time for another thing.
So I guess I will have to see what happens later on today. I really hope that I will be able to come… even if it is just for a little bit. If I don’t get to go though, I want everyone to know that I am so incredibly thankful for everything that they are doing for me. They are truly my angels and none of this would be possible without you. Thank you for trying to get me a second chance on life.
Before I go, I want to share a funny story with you. My dad is the one who helps me at night get ready for bed and stays with me while I take my ketamine and until it kicks in. Well, we just got a new bottle a little while ago and the pharmacist put it in a different kind of bottle than I normally receive it in. When my dad showed me the bottle I was like “oh great” because that bottle gave us so many problems the last time we had it and we basically couldn’t use it at all. So I thought for sure that I was in for the same thing this time again.
Well, I gave the ketamine to my dad to shake up and ‘prime’ that night because it was the first time being used. I am so weak and I needed a big strong person to shake it up and make sure it was thoroughly mixed. Plus, I needed it to be ‘primed’ so that it would be able to be squirted out since the ketamine that I take is compounded into a nasal spray. Well after all was done, he gave it to me to use and guess what? When I tried using it… nothing was coming out. I couldn’t understand why nothing was coming out when my dad said that it was “primed,” which meant that something had to be coming out when he did prime it. Then I realized that it was leaking too just like the other one did and I was like “here we go again… it is leaking and unusable just like the other one!” I then took a tissue to wipe it down and guess what? It turns out that there was a cap on the top of the bottle the whole entire time. So that was the reason why I couldn’t get any this time and why it was leaking. The cap was so small that I couldn’t tell there was even one on the bottle. Now I know why very same bottle that the pharmacist gave me last time didn’t work either. I didn’t know it had a cap on it. Stupid me. But I still don’t know how my dad ‘primed’ it and saw things squirt out of it if there was a cap on it. He probably just thought he saw something come out because he heard it. Only my dad!! So I can’t believe all this time I was complaining about the other bottle that didn’t work, it probably did but I didn’t know it had a cap! Once I realized that this bottle had a cap and I took it off, this bottle actually worked better than the other.
Well… I guess that will be all for now. Thanks again for all your continued support and encouragement. Please don’t forget that bracelets are still available and can be purchased by contacting me through Facebook or by emailing Femirsky@gmail.com. Bracelets come in blue or pink and say “Help Fallon Fight!” They cost $5 and all money goes towards my medical expenses!
Well… hope to see you all tonight. Remember, any questions about the fundraiser event at the Melrose Ballroom, please contact Maria Tsikos Messados at firstname.lastname@example.org. So please come and spread the word! Every $1 makes a difference because it is one less dollar that we have to come up with!