I just wanted to write a little to update on all that has been happening since some stuff has been happening. I am really not doing well and honestly, I am trying my best to hang in there… but it is really difficult. It seems like we keep getting hit with bumps in the road and they are getting harder and harder to get over them. But hopefully with the help of friends, family, and supporters, I will still be able to surpass all that has been happening and be able to go on to have that Ketamine Coma in May, which is the ultimate goal.
I have really been weakening lately. I know I have been weakening for a while, but it is basically at the point where I am feeling so weak that I can’t do anything. My lungs feel so tired and weak to breathe, my intestines feel to weak to move and go to the bathroom, my body feels to tired and weak to get off the couch, etc. I can barely even go up the stairs anymore or even get off the couch. In fact, even talking basically exhausts me. When I go to have procedures, I can’t even fight the pain anymore by screaming and crying. Instead, I just lie there and endure whatever the doctors do to me and cry silently to myself because I just can’t fight back anymore. I am really losing my strength.
My health is deteriorating so much that all I can do is just lay around. Thank goodness I have my pets, as they have been keeping me company and helping me stay in good spirits. They make the best of friends because they never leave you… no matter how bad it gets.
I really need to get treatment… especially get to Mexico before it is too late because my body is just shutting down and getting weaker and weaker. I already need a multivisceral transplant, which includes a new stomach, small and large intestine, liver, and pancreas. I have severe gastroparesis because of everything going on and basically my entire GI system is essentially “dead”! However, it has gotten to the point that even though I need this very rare and risky transplant, which only 6 hospitals in the United States do, I have really gotten to the point where I am too sick to undergo the transplant. If I should undergo it, I will most likely die because it is the most difficult transplant to undergo and I also would never be able to survive the drugs that are needed to take after a transplant. After all, I have not only weakened, but I also have dwindled in weight to the low 60s. That is why they are hoping also that I get this Ketamine Coma in Mexico, as they say that it would be committing suicide if I would have the transplant now. They are hoping that this Ketamine Coma will be able to prevent be for having to go for this transplant because it should help my GI system as well. It could be the “answer” to everything.
In the meantime, I still need treatment in the interim within the United States. However, all treatment that I need to help me is not local and therefore, I desperately need help in being able to see the doctors and go for the various treatments. As things are continuing to worsen, we can’t just be dependent on the doctor in Mexico. I have a whole team of doctors, but unfortunately they aren’t local. I desperately need help with my Gastroparesis to hold me over until we make it to Mexico. We are looking to go to Cleveland Clinic and Mass General. But of course it is dependent on fund availability. I hate how my life revolves around money. I feel like I a never going to get well because we are never going to get enough money to get me well.
If I could have one wish… it would be to have my health. People don’t realize that if you have your health that you have everything. I really wish I had my health because then we wouldn’t have all these financial problems. My family has gotten into such severe financial debt because of my health problems, and I really wish I could change it. They certainly did nothing to deserve this. Things have gotten so bad that we haven’t been able to pay the mortgage for 3 months, we can barely put food on the table, and I can’t even get the medical treatment or the medications that I need to save my life. No one appreciates their health as much as they could, but trust me… as long as you have your health… you have everything because it can take everything from you. My health not only wiped my life from me, which included being able to walk, eat, have FUN, have a social life, be a doctor, etc. but it also drained us of all money and basically is now making us live in fear of not knowing what is going to happen because we can’t afford literally anything… not even the mortgage or food. I never thought I would ever say that because those were two things I always took for granted.
Speaking of health, my health has really been spiraling downwards. I have been having severe osteonecrosis for a while. I have also been having severe jaw pain for a while too. However, every time I told the doctors that it was getting worse, no one could figure out exactly what was happening except for the fact that they saw the osteonecrosis and the nerves exposed. However, little did they know that I had an active infection stewing.
As I am extremely hypersensitive, I can feel everything. I can feel the slightest pain or the slightest sensation that a normal person can’t feel. Therefore, I can feel so many things that many doctors can’t really see or pinpoint as a problem. I can’t really blame them for it because it isn’t like they have microscopic vision. However, it sucks because I can feel things happening before they become “major” problems. If I tell you something is there or that something is “happening,” you can bet your dollar that it is really there or happening.
Anyway… like I said before I have been having this horrible osteonecrosis pain for a while that the doctors were just attributing to the osteonecrosis and the exposed nerves. However, it got to the point that I barely could close my mouth or bite because my entire jaw and teeth would hurt like crazy. Even the slightest ‘knock’ would send the most excruciating pain. I knew that there had to be something else going on and therefore, we went to the doctor today.
When we went to the doctor today…sure enough we found out that my worst nightmare was true. There was definitely something going on and surgery was needed. I needed to have something done, but there wasn’t a clear-cut answer. I had a very active infection going on and I also had nerves that were clearly inflamed going into the teeth. So in addition to the osteonecrosis now, I also needed root canal because it traveled. In a normal person, the bone and teeth should have come out because there really wasn’t enough bone there to support it. However, in my condition and with me having osteonecrosis, we didn’t know if that was the right answer because it could result in me not healing because we are dealing with ‘bone.’ Since my bone structure is extremely poor and I have taken the bisphosphonates for years to strengthen my bones and I have the Osteonecrosis, all bets were off as to what would happen if we would remove more bone and teeth. It really could quite make the osteonecrosis worse and it could make me not heal. It could also spread the infection as well. All this stuff could prevent me from having the Coma take place in May.
We really didn’t know what to do because in reality… we should have taken it out. But like I said, I am not a normal person. Plus, I really didn’t want to have no bone or no teeth because I wouldn’t be able to be like a normal person and get implants. Instead, I would be left with a space or the possibility of MAYBE getting a bridge, but even a bridge was a big MAYBE and that could also cause problems. I really didn’t want to have nothing there because not only how would I chew and eat, but I am ugly enough. I already look like a Jack O’Lantern because of my bone structure and teeth; I don’t want my smile and mouth to look worse. I am already self-conscious about my face, as I hate the bones protruding and how there isn’t any fat or muscle tone left. That is why I have to airbrush every single picture I put up on the Internet because otherwise I look like some kind of monster. I just look horrendous.
To tell you the truth, I already feel like a hideous and horrendous looking monster. I used to be a pretty girl in grade school when I was younger. Yet, when I was robbed of a life that entailed being able to grow up as I should have had and had a husband and family. I was robbed of being able to have my beauty stay with me. Instead, I turned from a pretty girl into a creature. I am just like a Stegosaurus, as I am so thin and emaciated that my spine literally looks like I have spikes going down my back like the dinosaur has. My face has no muscle tone and therefore, all you can see is the bones protruding and the skin sagging on the bones. I have wrinkles all around the mouth from no muscle tone as well. In addition, I change colors like a chameleon and therefore, I try to remain as covered up as possible in order not to scare anyone away. In a split second I can go from perfect coloration to a whole different array of colors such as purple, blue, black or to any other wonderful color. My left leg is the worst, but my whole body is capable of changing colors because of the stupid neurological disease and autonomic dysfunction, as it is known to cause vasomotor changes.
I know that the appearance of the colors should be the least of the problems because the doctors are more fearful of me losing my legs and such because the discoloration means ‘lack of circulation’ and they know that especially my left leg and foot has no circulation going there because it is mostly black and never goes back to normal coloration anymore. They are fearful of my limbs going gangrene and for amputation, especially of my left leg and foot. In fact, they said that even if I do get better… they still don’t know what is going to happen with my left foot because the tissue has been deprived of oxygen for so long and has most likely suffered too much. But, I am still staying hopeful that everything will be OK in the end.
To tell you the truth, my dad and I was watching “The Bachelor” tonight and he was like, “You should apply!” I told my dad that I couldn’t apply because I would never get on. I mean… lets be totally frank… I am no way as pretty as those girls on the show. I don’t think anyone would ever be interested in me. I want to get better so well so I can feel ‘beautiful’ again!
So it wasn’t a very easy decision because we didn’t know how I would heal, I didn’t want to look worse than I already looked because I especially wouldn’t be able to get implants, etc. So the doctor ended up calling the hospital and having a meeting with my other docs to see what they would do and obviously there was no clear-cut answer. It was essentially up to me. We could “try” to save some of the bone and teeth, but in the end it might be inevitable that they would have to remove everything. Knowing how much I didn’t want to look uglier and how much I didn’t want to lose anymore pieces of me, I told the doctor to do whatever he could to “save” my teeth and such. So they ended up doing some osteonecrosis surgery and removing the roots and such. Of course though this doctor couldn’t do the whole entire surgery though because it isn’t his specialty. Plus, what really needed to be done had to be done in the hospital because of my situation and everything. I really had to be put under general anesthesia to have all this accomplished and have a special surgeon do the work. But, this doctor did try to do all that he could to help make me as comfortable as possible, as well as to try to get the infection out because it was very dangerous to have the infection in me.
One big problem with the infection in me was that I am on so many medications already because of my other problems to fight the infection that was now occurring. This is one of the big fears that the doctor in Mexico has because he is worried that I will get an infection in Mexico when I am in the Coma because I will have so many sources of infection from having all these lines put in me. If I get an infection, I will not be able to fight it really because of all the current antibiotics that I am already on. I am so resistant to antibiotics and to make matters worse… any little infection is something MAJOR to me. So even this infection in my mouth was a major problem, especially when there was no medication to give me to combat it already since I am on so many already. The only hope was when the doctor went into actually flush it out as best as he could with antibiotics that way. But in terms of me taking antibiotics afterwards… that wasn’t going to look possible.
Since the actual surgery has to be done under “general” anesthesia, they gave me as much stuff as they could give me to kill the pain and take away all the ‘bad’ stuff that they were doing. However, nothing is like being under ‘general’ because I feel literally everything. However, like I said before… it has gotten to the point that I am so entirely weak that I couldn’t even scream or fight. All I could do was cry silently and lay there because any bit of fight in me took just way too much energy for me to muster.
As I was enduring the procedure, all the doctor and nurses kept saying was “think about Mexico!” I kept trying to think about having all this done so that I can be able to get my Coma in Mexico, but in the back of my head I was saying that I was never going to be able to have it because I will never be able to get enough money to do it. I know how desperately I need this Coma, but I also know how they are not going to do this Coma if I don’t come up with the money and there is no way that I have over $100,000 to pay for it. That is why I need as much help as I can from others… but I don’t know how on earth I am going to be able to raise that much. I know that if everyone would just donate even a $1, it would surely add up, but most people aren’t like that. People don’t realize that even $1 makes a difference, as it is 1 less dollar that we have to come up with. Any donation is much appreciated!
After everything was done, I had a really bad reaction. Not only was I in severe pain from all the work, but also it really exacerbated my illness. I was in so much pain all throughout my body that I couldn’t even walk. I literally had to be carried out by the nurses in the doctor’s office. I was so thankful that they were there to help and honestly quite surprised that they did such a thing. They even were kind enough to go home with my mom and me, as they helped to carry me into the house and get me situated. I would have never made it home if it weren’t for them. I was so thankful for them. I can’t tell them enough how appreciative I was for all that they did.
But… I am nowhere near finished. I am so sick now from the aftereffects of the surgery and work that was done today. The infection that was in the jaw and such is leaking out and all I can do is taste it. I am also in excruciating pain from all the work that was done, as well as from it exacerbating my overall illness. To think… I still have to go back for the MAJOR part. At least though it will be done under “general” and I shouldn’t feel it. However, the last time I had this surgery done… I ended up gaining like 8 pounds of fluid during the 6-hour operation and it really stirred up my illness and autonomic dysfunction. It was HELL afterwards. So… I am really not looking forward to having this all happen again.
I did speak to my team of doctors and they are extremely worried about all that is happening. They are worried about the infection spreading and getting worse because my body can’t handle it. They said this really needs to be taken care of ASAP. My surgeon that is supposed to do the second part of the surgery will be on vacation next week, but if needed, I was told to go to Schneider’s Hospital if an emergency arises. Never a dull moment when it comes to me.
I am having so many problems lately. I just don’t know how much longer I can hang on. Even my severe GI problems are getting worse. I am having such a difficult time eating. I can’t stand to eat basically anything. Even a sucking candy makes me nauseous. I can’t even tolerate the ice pops that have my meds in them, which is basically a necessity that I have. My weight is really going down. I am also bleeding a lot and having a lot of mucous and therefore, I am dehydrating. I can’t really drink because it makes the bloating and stomach pains worse. I am losing weight. Everytime I do try to eat or drink, I feel like these bubbles and this oozing in my intestines like something is ‘leaking.’ My stomach and intestines makes all these weird noises when you try to push things through them by manipulating them with your hands but yet, nothing moves because they are essentially “paralyzed.”
I spend the entire night in the bathroom because I am so bloated and I can’t go to the bathroom. I am in so much pain all the time that all I can do is cry. Sometimes I just don’t even want to get up to the bathroom because it takes too much energy. Yet, I am so bloated and everything that I keep feeling like I have to go.
The most that can happen is that mucous and blood will come out. We all know that something is wrong and the doctors know it too. Yet, they can’t even do a colonoscopy because I am so “blocked” with stool. They have tried numerous times to do one, but they have all failed. They can’t ‘clean’ me out enough in order to do the procedure. They even have tried giving me NG tubes and pouring the mixture in like that, but it only ended up in having to be pulled out and being a failed attempt. They would get less than a ¼ of a liter in and then the tube would back up and the mixture would come back up out of my nose. So, it would have to be just yanked out. No matter what they do, they just can’t clean out my intestines.
They know that something is going on though. They know that besides the problem of my intestines being too “weak” to expel things, there is another problem going on because I am having all this mucous and blood coming out. They also know from an x-ray that I have a blockage or a twist in my colon. However, they aren’t sure exactly what is going on. They just know that something is there and definitely needs to be taken care of. They are talking about giving me a ‘colostomy bag’ but I really don’t want one. How much more are they going to do to me? They want to put tubes in to feed me, colostomy bags to take stuff out, and tubes to relieve gas they are making me inhuman. That is another reason why I need to get to Mexico because they are thinking that the Ketamine Coma can prevent all this from occurring. They are thinking that the Ketamine Coma can potentially help all these issues. I know it sounds unbelievable to be put into a Coma and to be helped in all this ways, but it can happen and has happened in the past. 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. Patients are supported by a ventilator and monitored in the ICU. The Ketamine Coma shows great promise as a treatment for severe RSD and the other problems that I have such as the Gastroparesis and Autonomic Dysfunction that go along with it. However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition.
I just don’t know how much more that I can take. I know that I need that Ketamine Coma though. I am really hoping that it will happen. There is a fundraiser being held at the MELROSE BALLROOM on February 27, 2014 at 7PM called “FFF NIGHT!” I would love for all you to attend! Please tell as many people as you can about this venue. 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.
I have a ketamine infusion tomorrow, Wednesday. I am really looking forward to it because I am suffering so much. At least when I am under the ketamine for the day, it will be one day that I am out of pain and away from this illness. I am stuck with this illness 24/7 and never get a break. If I can stay in the ketamine coma all my life, I probably would be in heaven. I just can’t take this illness anymore. Ketamine infusions are like being on vacations for me. Hopefully it will go ok, but it is really getting risky because of how badly my bloods are dropping and how I am deteriorating and worsening. Yet, I desperately need this Ketamine, so it is worth the risks. I will let you know how it goes, but knowing that my dad will be right by my side makes it easier because I know that he won’t let anything happen to me.
I have also been trying to keep my spirits up and trying to build up my lung strength. It is important to do so because the doctors are worried that I won’t be able to come off the ventilators when I undergo the big Ketamine Coma in Mexico. It is already really difficult to just take a breath of air as it is, and I am also aspirating like crazy. The doctors fear that when I go on the ventilators, my lungs will weaken further. They are fearful that I will not only have to be in the Coma longer than supposed to and have difficulty coming off the ventilators, but that it will have to end up in me having to have a tracheotomy. I am really fearful of that because I really don’t want one. However, the doctors said that if that should have to happen, they don’t foresee it being permanent. They said that when I get better and stronger, it would be able to be removed. They said they will just need it to get me off the ventilators, but as I continue to improve and gain strength, it will be able to come out. I still don’t want it and hoping that it won’t have to happen though.
So… we have been doing everything possible to try to prevent that. I have a spirometer here to try to build up my lung strength and the doctor has me blowing up balloons. I can barely blow my nose because I have no lung strength let alone a balloon. But my dad bought me a whole entire pack of balloons and I am determined to be able to blow every single one up.
In addition, the doctors in Mexico are trying to get me off some of my opioids as they are making my lungs weaker as well. Normally they would take me off the meds during the Coma and I wouldn’t really have to worry about the withdrawal or anything. However, they want me off beforehand as much as possible so that I can have as much lung strength for the Coma. My other doctors don’t know how they are going to do this because of how many drugs I am on and how I am on such high doses too. I have been on them for so long that I am so dependent on them. They said that if I were to stop any of them, I would go into severe seizures and possibly die. So we don’t know what to do because we really need to try to stop them, but then again it is a huge risk of stopping them as well. I really wish that I could just stop them when I am in the coma so that I don’t have to worry about all those withdrawal effects and everything because I wouldn’t technically feel them, but I understand how they want my lungs to be as “strong” as they can beforehand and how the opioids are also compromising my lung strength. So I guess we will just take one thing at a time.
I also had my birthday. I didn’t do much to celebrate it because we didn’t have money, but my parents did try to make it as nice as can be. They bought me some flowers and 2 balloons. I really tried to cherish this birthday because I know how much I am deteriorating and I know how very realistic that this can be my last birthday. So I took plenty pictures with my family as well. I only hope that I will be around next year to celebrate my birthday again. But, I know that for this too happen it will mean that I will need to have the treatment that I need to save my life such as the Ketamine Coma in Mexico. So I am really crossing my fingers that I will be able to have it so I can see my 33rd birthday. I already am planning the biggest birthday bash for next year because I will be “well” and therefore… it is going to be one HUGE party. We are going to PARTY all night long and I am going to invite everyone and anyone to help celebrate. After all… it is because of all these people that I am able to see it and I am so grateful and appreciative for all the help that you and everyone has given me, as well as the support and encouragement you have given me too.
We did have a cake, but I just got to blow out the candles while I watched my family eat it at my expense. I may have not gotten any gifts, but at least I got a cake and candles to blow out so that I can make my birthday wish. I bet you can’t figure out what I wished for. LOL. I only hope that next year I will be able to enjoy the cake with my family instead of watching them eat it and enjoy it. My family also put candles on the cake not only to have me be able to make a wish and blow them out, but also as a way to “exercise” my lungs. After all, the doctor wanted me to do breathing exercises to strengthen my lungs for the Coma in Mexico. So this was just one more way to do it, as well as a way to see how much strength my lungs did have. Did it have enough energy to blow out all those candles in one breath? Not quite.
I did receive a really special gift in the mail though from a special person. I received an “angel” from a fellow patient that underwent the same exact coma that I am going to go through in Mexico. I was not expecting it and she sent me this Angel with a very heartfelt message. She said even wrote her favorite quote that she always says to me, which is “Where there is life there is hope,” and followed it with, “Don’t stop fighting and keep on smiling!” I have the ANGEL sitting right by my bedside and plan on taking it with me whenever I go to the hospital or for a procedure. You can bet your dollar that I will definitely be bringing it with me to Mexico and hanging it on my IV pole!
We both have the same doctors and the doctors say that we are very comparable. They have said, “Until they met me, they always thought that she has had the worse case.” But we have so many similarities that our cases are nearly identical. Knowing how bad her case was and that she is miraculously better gives me the hopes that I will be too after this Coma. In fact, she is the patient that I have shown you on the YouTube videos undergoing the exact Ketamine Coma that I am undergoing. She has been so supportive and helpful because not only is she a fellow patient, but she has been a terrific friend to talk to and help me through all this because she knows exactly what I am going through. After all… no one really knows or can understand what I am going through until they live it. I don’t wish this disease on my worst enemy. It is HELL. RSD is the most painful disease known to medicine.
Well… I guess I will be going. Just want to remind you about the bracelets again. 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!
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.