Just wanted to write a quick update to let you know that I am undergoing an EMERGENCY KETAMINE COMA in the morning. Things have gotten to bad that I have to do it. I can’t take the pain anymore and the suffering has just gotten too unbearable. So… by the time you are reading this, I will probably be under the coma already. Please cross your fingers that everything will be ok and everything will go “smoothly” because it is very dangerous, especially because I am sick with an extra “bug” to begin with. But I will explain that soon. Hopefully the ketamine coma will give me some relief because I am literally climbing the walls. I am on so much pain medications such as methadone, morphine, dilaudid, nucynta, etc., but nothing is cutting it. I really need this coma to work.
Ketamine is my only option for my neurological disease. I have tried various treatments including medications, stimulators, sympathectomies, etc., but all were unsuccessful. Sadly, my condition has been spreading throughout my body, and I now have it everywhere. I have developed severe gastroparesis, my limbs are frequently turning purple and are swollen, and I am in excruciating pain (It is considered to be one of the most painful diseases out there). So… besides the multi-organ visceral transplant that I have to worry about that only 8 hospitals in the country do and aren’t really covered by the Insurance, I have to worry about affording this coma out-of-the-country as well. Who said when it doesn’t rain it pours?
Ketamine is the most potent clinically available inhibitor of N-methyl-D-aspartate (NMDA) receptors. These receptors permit the transfer of electrical signals between neurons in the brain and the spinal column. Studies support the idea that RSD results from a dynamic change in the physiology and structure of central pain neurons mediated by NMDA receptors. When these receptors malfunction, enzymatic and metabolic cascades occur in pain cells, and the degree of pain is magnified out of proportion. As an NMDA antagonist, ketamine blocks central sensitization. The theory is, the coma allows the constant throbbing pain connections from the body to the brain to reset, like a computer reboot.
Ideally, the amount of ketamine that I need is far too great than is FDA approved. As a result, I really need to go out of the country to get the amount of ketamine that I need. However, the countries that have been doing the experimental ketamine coma, which is extremely dangerous, are no longer doing it. As a result, my doctor is awaiting for the IRB review board to grant him the ability to send patients to Santo Domingo because that is where I will be able to receive the amount of ketamine that would be able to help me. In this version, the patient is placed into a medically-induced coma and given an extremely high dosage of Ketamine; typically between 500-700 mg per hour for 5 to 7 days. However, the cost of this coma out of the country would be astronomical, as it would be near or even over $100,000.
Since I cannot get the coma as of now out-of-the-country, I have had to make do with other options. I have been undergoing the coma within the United States even though it is not nearly high enough to even come close to “curing” me. The most I can hope for with this coma is that it will relieve the pain and suffering that I am in for the amount of time that I am “under” and perhaps contain the disease a bit. My disease is spreading like a wildflower and as a result, it really needs to be slowed down. The hope is that at the very least, this ketamine is slowing the progression. So, I have only the option as of now to go for comas that are for single days.
However, I have went to see a doctor in Florida who will give me three days of Ketamine infusions. If this procedure works, I will need Ketamine booster shots all of my life. Unfortunately, insurance companies do not currently cover this procedure, and it will cost over $10,000 for the first treatment and thousands more each year for the booster shots. So, I really need to raise money so that I can afford this treatment.
But… the ketamine coma is extremely dangerous. Ketamine is not a “everyday” drug. It gives me extreme hallucinations and as a result, I get really bad nightmares from them. I bring my iPod with me to try to use the music to block the “bad” stuff from happening. Even the night that I usually have the coma isn’t a “good” night for me. After the coma, my parents have to literally keep waking me up because the coma gives me so many nightmares that I can’t get myself out of by myself. As a result, my parents have to stay awake so that they can get me out of them because they are really scary. In addition, my autonomic dysfunction really stirs up afterwards. It is like my disease really doesn’t like to be “messed” around with and as a result, it literally “pays” me back. It is like the saying goes… “Payback is grand.”
Some people might ask why do I go for it then? I go for it because I am in so much pain 24/7 and never get a break from it. The pain is so severe that I would do anything for a minute without the excruciating pain that I undergo. People can’t imagine how bad the pain is. The pain is so bad that I don’t even wish it on my worst enemy. My father is constantly saying that he “wishes that he could take the pain away from me.” But I tell him that he would “never last!” This pain is the most excruciating pain you can imagine. If Hell was a clinical medical condition… it would be my disease. On the pain scale… it is way off the chart. So… if I can get one minute of relief… it is well worth it. At least when I am under the ketamine coma for the day, I am out of my pain. We are also hoping that since the I am rapidly deteriorating and getting worse, hopefully the coma will slow the progression as well. But, at the very least… at least I will have one day out of pain when I am “under” and one day that I will be able to “rest” because I never sleep. I can’t sleep because I can’t get comfortable. I can’t even have anything touch me basically… not even a blanket because the slightest touch of anything sends me up the walls.
So… my dad will be taking me in the morning for the ketamine. What would I do without my dad? I feel so bad though because he has to miss so much work because of me and then he works so much harder in order to make it up. My dad will spend the entire day sitting in the room just watching me “sleep.” He probably will take my iPhone like he always does and snap pictures. He takes pictures of just about anything. I love to see what he snaps the pictures of when I wake up because he takes pictures of dirt, his eyeballs, his teeth, his bald spot, his watch, the IV bag, the monitors, and of course me. He will literally take pictures of anything and everything. He says, “What else am I going to do for all those hours?” Of course he also sleeps during that time, which makes me feel better too because I know how tired he is. At least I know he gets some “rest” during this time too. In fact, one time when I went “under” my dad fell asleep before I did. He even said one time “Will you please go to sleep already so I can?”
My dad is certainly the best!! I know I can count on my dad for anything. I made sure I fed him very well today because he will need all his energy tomorrow. After ketamine, I can’t walk. I can’t walk in general without the aid of the crutches, but when I undergo ketamine, I can’t walk even with them. As a result, my dad becomes SUPERMAN and as a result, my dad will literally carry me out of the hospital, to the car and then when we get home… my dad will carry me into the house. My dad is certainly my HERO!!
But… hopefully everything will go ok because I am “sick” to begin with. I am not just sick with my usual ailments from my disease, but I woke up today with a bad stomachache and a fever. We are hoping that it will pass or that I will feel better by the time that I go “under,” but it does make the coma more risky than usual. We thought about postponing the coma, but this is really the only time that we can do it because we leave next week for Nebraska. As I am undergoing so much testing in Nebraska next week, we don’t want the ketamine to interfere with the results or skew them. As it is… we don’t really know for sure if they will impact them. We are hoping that they won’t because we sill have 10 days til the testing begins (as they begin on Tuesday, December 4th), but we can’t afford for the ketamine to be any closer to the date. Plus… with all the suffering that I am undergoing… it just can’t be postponed anymore.
I also need injections into my knees because I can’t even put pressure on them. The doctor has to inject some stuff into them, but due to my illness, I am too hypersensitive to just have the injections done without being in a coma. Therefore, that is another reason why a coma is warranted because I can’t even walk anymore unless these injections are given.
What a day I did have today. Who said it wasn’t BLACK Friday? I had a bad day right from the beginning. First off… I woke up sick. I had that huge stomachache and fever that I couldn’t shake off. Out of all the pains and such that I get, the worst thing for me to tolerate is stomach pain. I have always been that since I was a kid.
Since I wasn’t feeling well, I was resting on the couch during the day. My cat, Missy, never leaves my side. As I said in the past, Missy will always stay with me and when she hears me awake or moving, she will come running all the time. I even nicknamed her TWINKLE TOES. Anyway, I happened to get up to go to the bathroom and guess who came running with me to the bathroom? She was trying to get my attention for something and then I heard banging going on in the bedroom, which was right next to the bathroom. I was like “what is she doing now?” When she brought me into the bedroom, guess what I saw? She alerted me to a guest, as we had a bird in my mom’s room. I couldn’t believe it. I was like “O great. What do I do now?”
I couldn’t believe that there was a bird in the house. This was the last thing that I needed. I was waiting for the bird to come out of the room and start flying all over my house. I wanted to lock the bird in the room by shutting the door, but I didn’t want to leave my cat in there with it. I called my dad to come home to get the bird out, but my hero wasn’t going to be able to come home for another 30 minutes. You know how many things could happen in 30 minutes? So, I left my cat with the bird in the room for that time. My cat is simply the best. She finds everything. Whenever there is a bug or something in the house… we can depend on Missy to find it!!
Well… how was your Thanksgiving? My thanksgiving was ok. Even though I couldn’t really eat, my family said that it was very good. We had yummy turkey, as well as delicious side dishes. I found out a new way of making the turkey and I don’t know if it was because it was a KOSHER bird or because it was cooked differently, but the bird was out of this world. It was cooked the day before (Wednesday). Then I carved it on Thursday and smothered it in gravy. I then baked it again for another 30 minutes. It came out phenomenal. I think it was because the gravy soaked into it. As for the side dishes, we had Sweet potato pie, whipped potatoes, zucchini soufflé, stuffed mushrooms, rigatoni a la vodka, candied yams, and grilled veggies. Everyone said it was “too much food” but it went. Even with my dad talking about how the typical Thanksgiving meal was 4000 calories didn’t stop them.
It was just a nice day overall, my mom and I watched the parade together. It was so nice because it is a tradition that we always have done since I was a little girl. We would always watch the entire parade together until we see Santa at the very end. I always get told too by mom how she wanted to be a “rockette” when she was younger. To think… I was going to miss out on all this because I was going to be in Nebraska. I was really quite glad that things turned out the way that they did because I really am glad that I got my wish, which was to remain at home for Thanksgiving. I was just really upset that my dad had to work because he should have had to. He should have been home resting and enjoying the day off. I would have loved to watch MARCH OF THE WOODEN SOLDIERS with him because that is the show my dad and I have watched every year together. But… hopefully it will be on for Christmas and we will watch it together then.
I had so much fun. But, I couldn’t stop thinking that this could very well have been my very last year doing all this if a miracle doesn’t happen. It makes me more than ever hope that I’ll be able to receive the treatment/transplant that I need so that I’m all better and able to be here next year. I wouldn’t wanna miss this for the world.
However, I did take pictures to remember this Thanksgiving. I didn’t like the way I came out because due to how much weight I lost and as a result, I retouched them and edited them. Not only did I retouch them to remove the unwanted markings, but I also cropped out all the bad stuff that I didn’t want in the picture like my lower half of my body. I wanted to put them up on FACEBOOK, but I didn’t want to people to see them the way I actually look. So, I edited them to remove all the “bad” stuff on them that make me look so “sickly.” I must say that I did do a great job because I came out looking pretty good in the pictures.
I have wrinkles on my face and such. I don’t have any muscle or fat on my face and therefore, the skin literally just falls over the bones on of my body and you can see every crevice and bone protruding in my body, which includes my face. I am very self-conscious on how I look. In fact, when I go for glasses, I always go looking for the pair that will “hide” the lines or wrinkles. I don’t like them being seen. I am also very self-conscious about my body because I am so thin. I am so bone thin that I look like a walking skeleton. I hate when I get pictures that are of my entire body because they show how very thin I am and how my legs look like tooth picks. I always tell people to take pictures from the waist up to avoid this problem.
Well… we are onto the next event… it is holiday time. Time for Chanukah and Christmas. I already set my phone up with the ringtones and text tones for the holidays. I love this time of the year because I love looking at the lights on the houses. Even though I hate the cold and hate the snow, I love looking at all the decorations. I used to love driving in the car at night and looking at all the houses decked out in lights. I love seeing all the extravagant houses and seeing them all outdoing each other. It is amazing how competitive people get with their decorations!
My brother keeps asking me what I want for the holidays. I keep telling him I don’t know because I really don’t want anything that he can give me. As I have dreams of having a family of my own and leading a productive life, I refuse to give up hope. I really want to get well and therefore, what I want is that “miracle” of getting well. But, I am at least hoping that I get some funds so that I can continue treatment or at least hoping that some of the letters that I wrote to the media will be answered and as a result, they will feature my story so awareness can be brought to my situation. I am hoping I might have better luck since it is holiday time! But… like everything else… I don’t expect much and this way I don’t get hurt.
Anyway… it is getting late and I wanna do a few things before I leave for the coma. I wanna get my iPod ready with some music and rest a little because I am not feeling well. Hopefully everything will go ok tomorrow with no complications, which will be a miracle because something always happens. But… hopefully nothing MAJOR will happen and I will be able to go home tomorrow instead of staying in the hospital. I don’t count on everything being OK from the coma until I am safe and sound at home. It is amazing how when I get home and my dad carries me into the house, my dog always has to come over to check me out. He always has to make sure that I am ok. My animals are certainly the best.
Well… until next time!!