Wow do I have a lot of news to share because so much has been happening. Sometimes I think I am living in a soap opera because there is always something happening. At least I can’t say my life is ever “boring” because there is always something occurring!
I guess I will begin with the biggest announcement! A special fundraiser is being held for me at the Melrose Ballroom, and I would love for you all to attend. It is very important for as many people to come because I am scheduled to undergo an intense treatment called a Ketamine Coma in Mexico on May 1st. This is my last option and will only be able to get it with the help of others, as it will cost over $100,000.
In addition, I am suffering immensely and need dire medical treatment even within the United States such as medications, the ability to see doctors (especially since they aren’t local), procedures, etc. I have really been deteriorating and unfortunately we are having difficulty getting the medical treatment that I even need within the United States because my treatment is extremely expensive and we no longer have the funds to pay for it. I have been sick for awhile and unfortunately, money can last only for so long and as a result, my family no longer has the financial means to pay for my medical expenses. I need to see so many doctors, have procedures, pay for medications, etc. and unfortunately they are not all covered by my health insurance. It is bad enough to suffer from all that I am going through because of the pain and everything. But knowing that there are things to help relieve some of my suffering such as medication (especially my ketamine that we can’t afford), it makes it so much worse. My treatment has really been at a standstill because we cannot afford any of it and in the meantime I am worsening and really deteriorating. The doctors have even claimed that “time is not on my side.” I desperately need help and help soon because my body is literally shutting down.
We are in such financial debt and to be quite honest… it has snowballed out of control. We have no money for anything, as we are even having difficulty paying the mortgage and even putting food on the table. I never thought that I would be in the state where I would be considering myself “lucky” on the weeks that my mom is able to afford to go food shopping. I never ever thought I was going to have to worry about having food on the table, but unfortunately there just isn’t any money for anything anymore.
Please come and show your support on February 27th at the Melrose Ballroom (36-08 33rd Street, Astoria) at 7 PM. It will be a great night that is full of entertainment and drinks. This fundraiser is being held so that I can hopefully be able to receive the very much needed money that I need to undergo the Ketamine Coma in Mexico, as well as to help with my current medical expenses so I don’t continue to downfall. I would love for you all to attend! Please spread the word! Any questions, feel free to contact Maria Tsikos Messados at (347) 642-1085 or (718) 849-9292.
In the meantime, my body is continuing to suffer and I am continuing to go downhill. I suffer 24 hours a day and never can catch a break. I am not watching my body deteriorate and shut down, as well as my life slip right away from me.
I had to undergo another procedure this week because of the osteonecrosis and due to an infection spreading. Osteonecrosis occurs when the jaw bone is exposed and begins to starve from a lack of blood. The bone begins to weaken and die, which usually, but not always, causes pain. Not only is the jaw hurting me, but the actual nerves that protrude from the teeth are killing me in the mouth as well. The doctors ideally would like to remove the bones and teeth that are affected, but in a case like me, it would not be the smartest option because I would never heal since I have been on bisphosphonates. Therefore, they are doing whatever they can to “save” everything.
Yet, the infection continues to remain there and I am in severe pain despite all the procedures that they have done, which includes removing nerves and trying to treat the infection directly because antibiotics won’t work. I am taking too many antibiotics that I am basically resistant. So we are currently taking one day at a time and seeing where this will lead. Hopefully I will not have to have any removals or extractions, but who knows? The doctor has been calling everyday to check up on me and to see how I am feeling, as I am in enormous pain. I can’t open and close my jaw nor can I bite. I am on huge pain anti-inflammatories besides my other pain meds.
Speaking about the osteonecrosis, we are in a huge dilemma because I desperately need something to be done for my bones, as they are extremely weak and the doctors are afraid of me getting a life-threatening fracture. Up to 1 out of every 2 women over 50 will break a bone (such as wrist, spine or hip) due to osteoporosis in their lifetime. Each year, about 250,000 will break a hip due to osteoporosis. Of these, up to 24% will die, and less than 25% regain full function. Vertebral (spine) fractures, which occur twice as often as hip fractures, also cause back pain and increased mortality.
However, there are drugs to help such as bisphosphonates and Prolia. IV bisphosphonates and Prolia have been shown to prevent 50-70% of vertebral fractures and 40-50% of hip fractures. Yet, these drugs will also put me at risk for more osteonecrosis, which I am already suffering from and as a result, the doctors are really hesitant to continue giving them to me even though I desperately need them. Even though my doctors, especially my doctors who are giving me the radical Ketamine Coma in Mexico, really want me on the medications to strengthen my bones and say it is a necessity, the doctor who prescribes it and gives it to me is hesitant to do so. He doesn’t want the liability of the osteonecrosis and as a result, he is leery about putting me on it. So, we are really in a huge problem because we need him in order to get it. Yet, it has ben determined from various physicians and even from the American College of Rheumatology that given the risk of osteoporotic fracture, and the low risk of ONJ associated with potent anti-resorptive therapy use, the benefit of preventing osteoporotic fracture clearly far exceeds the risk of Osteonecrosis.
I am now also suffering from extreme hypoglycemia. Recent bloodworm has not only showed that I am suffering from abnormal and severely low glucose levels. Whereas a glucose level should never go below 70 mg/dl, my glucose levels have been in the 40s. It is very dangerous because not only do I have an inadequate supply of glucose to the brain, it causes seizures, unconsciousness, brain damage, or even death.
So the doctors are extremely concerned about this because there really isn’t an “easy” and “quick” fix. I mean they said that I should always have like juice or hard candies on hand in case I have symptoms, but in someone like me because I can’t tolerate eating or drinking and I also don’t “absorb”, it really is not the answer. Blood glucose can be raised to normal within minutes by taking (or receiving) 10-20 grams. But if you can’t eat or absorb like me… I am kind of out of luck. This hypoglycemia is a result of my extreme gastroparesis and how I am not absorbing anything anymore. I have also been bleeding a lot and producing a lot of mucous. I have even lost some weight, which is definitely not good. I have lost 5 pounds recently, which for someone who weighs only in the 60s is disastrous. It is life-threatening to even lose an ounce at that weight! Some of the weight is dehydration because of the fact I am bleeding and producing the mucous, but in any state… it isn’t good to lose even an ounce.
Therefore it is a necessity that I receive treatment immediately. The doctors are thinking about putting in a central line to help “hold me over” until I get the treatment that I really do need such as the Ketamine coma or even the multivisceral transplant. However they really don’t want to do this because it will stir up and exacerbate my illness. In addition, central lines are very prone to infections and I can’t afford to get infections because the littlest infection is massive to me.
To make matters worse, I have also learned that my head doctor in Mexico has finally gone home from the hospital. He had to have open-heart surgery valves replaced, as he suffered from Aortic Stenosis. My head doctor is the hardest working doctor I have ever met in my life. He works 7 days a week and all hours throughout the day and night. In fact, he even gives out his cell number so that he doesn’t miss a call. He really cares for his patients, as he even goes out of his way to make sure his patients are the one is treated properly and is comfortable. Instead of making the patient come always to him, it is nothing for him to come and visit his patient. In fact, the day I actually arrived in Mexico, he even met me at the Hotel to talk. While we talked, he took every single call that came on his cell. He really made sure that all of his patients get the BEST care.
So I am really glad to hear that he is finally home. However, I know that he is still in need to recover. I know that there are other members on my team to take care of me in Mexico, but I really hope that Dr. Cantu gets better as quick as possible so that he can take over again. I know when he is around that nothing can go wrong. I know that May 1st is right around the corner, but I also know how strong Dr. Cantu is. I know that he will be healed and back on his feet and available to be back on my case in no time!
In the meantime, I am still trying to keep my spirits up. I am trying to keep my brain functioning and keeping my brain working as much as possible. I made it my business to finish a book finally, which I haven’t been able to do in such a long time because of my illness. It has really gotten difficult to concentrate and to retain anything that I read. It is really hard watching this because I used to have such a great photographic memory. Even though I still enjoy the same authors and the books, I just don’t get the same pleasure as I once did. However, I am determined to finish this book. So I am almost done reading James Patterson’s book called “Cross My Heart!”
Rare Disease Day is also approaching! I think it is so fitting for the fundraiser to be taking place on February 27th because the very next day, February 28th, is known as Rare Disease Day. In the U.S., any disease affecting fewer than 200,000 people is considered rare.
In the meantime, I just gotta hang in there til I hopefully get to Mexico. Bracelets are also being sold to support me. They not only are to raise awareness to all these mysterious diseases, but also to help pay for medical expenses. 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 continued support.