I just wanted to write an update since I haven’t written in awhile. It is honestly getting harder and harder to write these blogs and that is why I don’t write as frequently as I would have liked. I am really deteriorating fast and trying to hold on, but to be honest… it is getting to be impossible.
Any activity that utilizes energy is getting to be an impossible task. It really scares me and upsets me because I was never like this. I was the person to always push… push…. And push more. But I finally have gotten to the point where my body is just “done” and can’t be pushed anymore. It is as if my body finally ran out of batteries. I always thought I would be the “Energizer Bunny” that kept going and going and going. But unfortunately, my batteries are depleted and I can’t get them to get recharged. I never thought it would get this far.
I never thought I would get to the point where I am too tired and weak to do anything. Even the simplest task of making dinner, which is something that I loved to do is basically impossible to do anymore. Even typing my blogs is getting impossible. I can’t even give my mom her injections anymore for her multiple sclerosis. I was the one who every day gave her an injection to combat her MS, but I am getting to weak to do even that. Everything that I was and did… this disease has taken from me. It is so unfair. Yet, I am still hoping that this will still turnaround and I will be able to be “helped” and be able to resume a normal life. I am still hoping to become that doctor that I was hoping to be since I was a little girl so that I can help others.
I would never think that this disease could have taken so much from me. Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.
I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition; I cannot keep any food or liquids in me, and I vomit constantly. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body is just shutting down. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8. In addition, it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia.
The pain I feel is indescribable and all attempted treatments have not even come close to relieving all my suffering. I have seen many, many doctors, undergone numerous painful tests and procedures, has been prescribed over 50 medications, and has been hospitalized frequently including being intubated and on a ventilator. As a result I now need to have surgery to remove my colon (a complete colectomy), as well as a multivisceral organ transplant, which will encompass receiving a totally new digestive system (new stomach, small and large intestines, pancreas, and liver). Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am ‘cured’ and able to live my life to the fullest!
Yet, I still love life and want to get better. I am still hoping that through the efforts of others that I will be able to get well. I don’t want to be sick. But unfortunately, I am deteriorating and getting sicker at a markedly fast rate. I hate knowing that in order to get better, it depends on other people because we can no longer afford the very lifesaving treatment that I need to survive. I wish I were independent and only had to count on myself. But unfortunately, my life depends on the help others. So I am hoping and pleading that you help me. I don’t want to be sick and I have so much to offer the world. I can’t take the suffering anymore. The toll this illness has taken on my physically, medically, psychologically, emotionally, etc. is unimaginable. I desperately need help and in order for that to happen I really need help from everyone to make that happen because unfortunately we cannot afford the very lifesaving treatment that I need.
It’s a shame how money dictates so much of how the world functions. But unfortunately it does. So unless I raise some money through donations and fundraising, I don’t see how I will be able to get the very imperative treatment that I desperately need. If you can please help me in any shape or form, I would really appreciate it. No donation or help is ever too small and all is extremely appreciated. Please help me get the treatment that I need because I am not going to make it much longer. I am literally hanging on by a thread. I would be forever grateful for any contribution that you can make.
Unfortunately, we had to cancel this past trip to Cleveland Clinic that we had scheduled because of lack of funds. It was a very important trip too, but since we were unable to come up with the needed funds and no one is going to do anything for “free,” we had no choice but to cancel the trip.
As a result, we now had to reschedule everything and it is all planned out what is needed to occur. It is very imperative that I get to these appointments because I will literally die without them. The doctors are even afraid that I won’t even make it until then, but they don’t know me… I am going to hold on and make it.
We are scheduled to go to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. Although it is a little while off, I am hoping that it will give us enough time to raise enough money because we are definitely going to need it. The upcoming medical treatments and trips are going to be very expensive and therefore, I am hoping that I will be able to use the next few weeks to raise enough money to help us out so that this all can happen.
I will be seeing so many doctors when I go down that week. Among them includes an endocrinologist because I need a bone infusion that cannot be given to me in New York as well as one of the most knowledgeable specialists in my neurological disease. I am also seeing the cardiologist because my heart is not doing well and I will also be getting all the final clearances done so that I will be able to have all the necessary surgeries that I need in the following weeks.
I need to see the Endocrinologist at the Cleveland Clinic because my bones are so very weak and I can easily get a life-threatening fracture. I desperately need a specific bone infusion that cannot be done in New York and the specialist in Cleveland can only do it.
I also need to see the specialist in my neurological disease because there are VERY few specialists that are very knowledgeable about my neurological disease. A lot of doctors may claim that they know “something” about it, but there are only about 3 doctors in the world that actually are fully knowledgeable in my neurological disease and actually doing research on it. This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it. However, the doctor that I am seeing in Cleveland is one of the most knowledgeable doctors in the world, as he has published and spoke about my disease in depth. Since I am one of the worst cases that have ever been seen, it is extremely imperative that I seek his expertise.
In fact, the doctor in Cleveland is actually not seeing patients because he is considered “retired,” but we are very fortunate that he will see me because he continues to see past patients and since I have seen him many years ago, he will see me again. There is not many treatments or stuff known about my illness and not only is it important to seek his expertise because I am suffering from this illness in itself, but I am also going to be undergoing mega surgery and my illness spreads through trauma, which includes surgery. As a result, it is very important to seek his expertise because since this illness does spread through trauma and surgery, we need to know best how to “control” this illness and best how to help me during these upcoming surgeries. After all, this illness spreads like a weed and it is the most painful disease that you can imagine. In fact, it is the most painful disease in medicine, as it ranks higher than Natural Childbirth, Amputation, Cancer, etc. on the McGill Pain Index.
I suffer from pain 24/7 and never get a break from it. The only time that I can say that I am at “peace” from this illness is when I am under ketamine, which is why I really need to get to Mexico so that I can undergo that radical ketamine procedure that will reverse the disease and put the disease officially in remission. 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. The Ketamine Coma shows great promise as a treatment for severe RSD. However, even though I do get ketamine here in the United States, the amount of ketamine that I need and is required for this procedure is not FDA approved and can only be attained in Mexico. However, this procedure is extremely costly, as it will cost over $100,000 and we cannot afford it without your help.
In addition, I will also see one of the top cardiologists when I go to Cleveland as well. My heart is not doing well and it was discovered that I have dense calcium calcifications in the coronary artery. I will be undergoing heart surgery to put ports and lines in because the doctors need central and emergency access into me for the surgery to remove the colon as well as because I am doing so poorly, but the doctors are also concerned that I will need further surgeries now because of these dense calcifications in the coronary artery.
The cardiologist that I will be seeing is really supposed to be the best. Fifteen of the top 50 cardiologists are working at Cleveland Clinic and ranking in the top 15 is the cardiologist I will be seeing. I will be seeing the legendary Dr. Irving Franco, who joined and worked at the institution since 1971. He trained under the legendary Sones and subsequently trained two generations of the Clinic’s cardiologists himself. Sones is considered the father of “coronary angiography” and credited with one of the most important discoveries in the history of cardiology, as he discovered a way to form a road map of the heart for medicine and surgery. Sones’ innovation made possible, for the first time, accurate diagnosis of coronary disease and set the stage for the modern era of cardiology and cardiac surgery.
So I am really hoping that Dr. Franco will be able to help me because I am a very difficult case. With my autonomic dysfunction, my poor bloods, etc. my heart is suffering a lot. Not only will I need heart surgery to put the lines and ports in at the very least, but heart disease and every member of my dad’s family has had a heart attack and open heart surgery. Thank goodness my dad has been the only one so far in his family who has not had a heart attack or open-heart surgery, but it does run in his family. In fact, his younger brother just got out of the hospital this past week from a heart attack and quadruple bypass.
I will also be undergoing medical clearances so that we can come back 2 weeks later to have the necessary surgeries that I will be having. However, I am fortunate that the doctors are going to allow me and get me home for Thanksgiving. I was very fearful that I wouldn’t be home for Thanksgiving because I really wanted to spend it with my mom because Thanksgiving is family time. Plus, with the new upcoming surgeries, I will be missing the holidays, which includes Christmas, Chanukah, and the New Year.
So the even though I am going to Cleveland Clinic in November and will have many appointments, the doctors promised that I would be able to go home for Thanksgiving. Therefore, we are scheduled to leave Cleveland to go home on the actual day of Thanksgiving. There is only 1 flight out the entire day and we are on it. So at least we will be home for some turkey dinner. The doctors feel that with everything that I am going through that it would be an excellent idea to have me home for Thanksgiving and be able to celebrate it as a “family!”
We will get to stay home for only a little bit because we are scheduled to return to Cleveland on December 7th. I will be undergoing surgery on the very next day to put the ports and lines into my heart. The doctors need to do this because not only do they need central access and emergency access to me when I have the surgery, but they also need a way to give me TPN.
The surgery to remove the colon is very intensive and the recovery will be very hard on me. Therefore, they want me as strong as possible. I am so very ill right now that it is extremely dangerous to undergo any type of surgery let alone a very complicated and dangerous surgery to remove the colon. So the doctors are going to be giving me 14 days of TPN before removing the colon.
Even though TPN hasn’t worked on me before because I am extremely hypersensitive and I can’t take anything “foreign” in my body, they are going to try to keep me as comfortable as possible by giving me pain medication as well as keeping me a ketamine drip. Hopefully through all these medications and the ketamine, I will be able to tolerate it because removing the colon is going to be extremely hard on me.
I am then scheduled to remove the colon on December 23rd. It is going to be a very long day when I have that surgery. My mom won’t be there for the surgery, but my dad will be there. I am very scared, but it is something that desperately has to be done. My colon has to come out because it is ‘dead’ and toxins are spilling into my bloodstream and going into my organs. I am literally becoming intoxicated and poisoned because of this. If the colon is not removed, I will literally die.
I will need a multivisceral transplant, which incorporates getting a new small and large intestine, stomach, pancreas, and liver, but it is all dependent on how bad the small intestine is when they go into me and remove the colon. If the small intestine is very badly affected, it will mean that I will need this transplant faster. It is the most dangerous transplant that you can have and only 6 hospitals in the country actually perform this transplant.
I won’t be able to go home until after the New Year. I am a little upset that I will be missing the holidays and won’t be able to see home for so long, but at least I will be starting the New Year as a “new person!” Helpfully I will be able to start the New Year as a HEALTHY person and brand new person! I just hope that nothing bad happens during any of this time because I don’t want to ruin the holidays for my family.
Well… that appears to be the schedule of what is going to be happening. It is going to be a very difficult time until we see 2015. But hopefully it will all be worth it.
I am just scared because I don’t know how I am going to last all this time though in Cleveland. We are literally going to be in Cleveland at least 5 weeks when we go back after Thanksgiving. I don’t know how we are going to be able to afford this because we dad won’t be able to work because he will be with me and we cant even afford it now with him working. That is why I am hoping that these next few weeks will hopefully bring in some much needed donations and hopefully I will find a way of raising the money that I need so that I can receive this life saving treatment. So like I said before, if you can please help me in any shape or form, I would really appreciate it. Any help would really go a long way!
In the meantime, I really must hang on. I am really not doing well and in fact, the doctors have really increased my meds because they are not helping or holding me anymore. In addition, the amount of times that I have the ketamine comas/infusions is being increased as well. I usually have them every other week in addition to taking ketamine at home. However, now that I am deteriorating and nothing is really working, they are now going to give me the ketamine infusions/coma every week. Thank goodness because at least I don’t suffer when I am under the ketamine.
I am also still continuing the weekly surgeries for my intestines. I have to go for “cleanings” of my intestines because since nothing really passes through my colon, it literally stays in my colon and rots. It can easily perforate my colon and cause me sepsis. Never a dull moment. But not only does it help me medically and help me “buy” time because without these cleanings I can literally die, it also makes me more comfortable as well. I really look forward to Fridays and having this surgery because it really makes a huge difference in how I feel.
I don’t know why but besides getting so weak, I am even having a very difficult time eating… even more difficult than ever. I constantly feel something is stuck in my throat and nothing goes down. Even the littlest things that I used to be able to get down like the ice-pops and egg whites and ice cream are getting to be impossible to get down. To be honest, the only thing that feels somewhat ok or better than other things is gummy worms. I know… sounds weird, right?
I can’t believe that it is already October and the holidays are basically around the corner. I think that I heard that Christmas is less than 100 days away. Gosh… I hope it isn’t going to be a bad winter like it was last year. I can’t take the cold.
This month is Halloween, which used to be one of my favorite holidays. I used to love cutting open the pumpkins, decorating the house, and giving out the candy to the kids. However, as I got sicker and sicker the “fun” of this holiday kinda disappeared. I used to deck my house out with all the decorations and stuff, but nowadays I don’t really decorate. I only cut open the pumpkins because I make the seeds to eat for my family because what would Halloween be without pumpkin seeds? No pumpkin seeds taste the same as when you get them fresh out of the pumpkin. It is like apples… no apple tastes the same as when you freshly pick them from the tree. So I bought a pumpkin that really caught my eye because it has all this stuff all over it. I thought it looked really cool so I bought it. Maybe when I get better next year my love for decorating and celebrating the holidays will come back
So… I guess that sums everything up. I will write more when I know more. My parents’ anniversary is approaching quickly, as their anniversary is October 19th. I only wish I could get them a present or send them out to dinner, but unfortunately with everything happening, I can’t. They deserve so much. They have been married for 39 years. I am glad to call them both my parents and I only wish I have “love” like they do some day. I cannot begin to describe how blessed I am to have such amazing parents in my life.
Well… I am going to get going. Thanks for keeping me in your prayers and for all your encouragement and support.