Just figured I would give you the latest since stuff has happened and figured it was enough to share before it was too much to write.
First off…just want to let you know that I am heading into another ketamine coma this week. I am supposed to be going into the coma tomorrow (Wednesday), but there could be the possibility that it might be switched to Friday. But…more than likely it will be Wednesday. I am really kinda nervous because I am not doing so well and my bloods have fallen. I was supposed to go for a blood test today to see where my bloods stood, but I had to cancel it because I got to wrapped up with other appointments. So… hopefully everything will go ok.
I really can’t wait for the ketamine because I really need a break from this pain and disease. When I go for ketamine, it is the only time I get a break. It is like I get a break from life. I suffer 24 hours a day 7 days a week. I never get a moments rest. I can’t even sleep because of the suffering and lately the pain has gone from just feeling the unbearable pain to being a gnawing sensation of pain. So on top of all that cramping, knife stabbing, aching, bloating, searing, shooting, stabbing, throbbing, cutting, burning, radiating, etc., I am not having this ‘gnawing’ pain that is nonstop. Gnawing pain is nonstop aching pain that will not stop. It feels like my whole body especially my toes and feet) are being hit with hammers nonstop. You know when you are hammering nails and you accidentally miss the nail and hit your finger instead and you feel that shrill of pain go right through your finger and throughout your entire body? That is exactly what I go through throughout my entire body all the time. I just can’t take it anymore and this ketamine treatment is the only time I can ‘escape’ it.
Unfortunately though this ketamine treatment that I receive in New York is not permanent and cannot ‘cure’ me. However, it is thought that ketamine has the potential to actually ‘cure’ my neurological disease and autonomic dysfunction… or at least make me a whole of a lot better if I was given the high enough dose. However, that dose that I require is so huge that it isn’t FDA approved in the United States and as a result, I would have to travel abroad to get it. It is an extremely dangerous procedure where they literally ‘shut down’ my entire body and fully intubate me. I would be in a medically induced coma for that time. They keep me as a ‘vegetable’ for awhile (about 2 weeks or so) while the ketamine does its magic.
Ketamine has emerged as a viable and potent treatment for patients with my neurological disease. Supposedly, ketamine first “turn off the pain” and then “reset the whole system” of pain transmission. RSD appears to be caused by central sensitization and pain “wind-up,” a gradual, cumulative hyper-excitable neuronal response resulting from repeated painful stimulation of peripheral nerves. The N-methyl-d-aspartate (NMDA) receptor complex appears to play a major role in the development of this overall central sensitization; additionally, evidence shows that NMDA receptors are present in the peripheral nerves. According to doctors, When NMDA receptors are open, calcium enters the pain transmission neuron and initiates cascades that end up making pain transmission neurons more easily fired and to be much more easily excitable. Ketamine works because it is an NMDA receptor antagonist and that blocks that mechanism of calcium entry into cells; once you’ve turned this system off, you’ve turned off the genetic transformation that occurs with persistent pain.
Since I cannot go out of the country to get the necessary dose to ‘cure’ me, I have been going for ketamine comas in New York. However, the amount I get is nowhere compared to the amount that I need. However, there are 2 places that can potentially help me more than I am getting in New York and it can make a huge difference and perhaps buy me a huge amount of time. I really need to get those ketamine comas because not only will it help with the excruciating pain that I can’t take any longer, but it will also ‘save’ my life in the sense it will buy me so much more time because even though it won’t ‘cure’ me, it will calm the nervous system so much and let it function better. Therefore, my body won’t be shutting down as much as it is and the stuff that is happening can perhaps even be reversed. I know it sounds bogus and is difficult to imagine, but it is one amazing drug!!
The only place that does this kind of coma treatment, which is a higher dose than I am getting in New York is in Florida and in Iowa. I really wanted to go to Iowa to have the coma done there because I feel like the doctor is so much more knowledgeable in my illness (he is known as the “father of ketamine”), but he wants about $25,000 just for the coma alone and of course we cannot afford it. Therefore we are kind of forced to go to the other doctor in Florida even though the treatment will not be the same as if I was to go to Iowa. However, this doctor in Florida is covered by insurance either and is also very expensive. This doctor wants about $20,000 for the coma.
I desperately need help from others because I need to have so much treatment done to me and time is ticking by. I am really running out. RSDS can be as painful as cancer, as costly as AIDS, and as crippling as arthritis. My entire body is shutting down and unless something is done quick, I am fearing that I won’t make it much longer. I am trying to hold on as much as possible, but it is honestly getting to the point where I can’t take it anymore. I am in so much pain that I just want at times to cut off my legs and cut out my stomach because I just can’t take it anymore.
My legs have been so painful lately and literally remaining black no matter what I do. Before they used to go back to somewhat normal coloration when they were raised, but that isn’t the case anymore. I really need to have something done to help with this because they are so afraid that I am going to lose my legs. After all, when limbs are black it means that they aren’t getting oxygen.
We are planning to leave for Florida a week from tomorrow (May 15th). We are meeting with the doctor to go over everything and to set everything up. I have seen this doctor before so it isn’t like we are going to a ‘new’ doctor. He is very familiar with my case and knows how difficult I am. However, I don’t even know if I want to go because to be honest… I don’t want to go and find out afterwards that I can’t have it done because we don’t have the funds to proceed with it. It is like being TEASED because here there is something to help me and here the doc is literally holding something that can potentially save my life right in front my eyes and yet… I can’t have it because we can’t afford it. It is a shame how my life revolves around money and how much money dictates the world. That is why as I always say, “If you have your health you have everything” because no one realizes how much not having your health can cost you. It is like you have to be extremely rich to be sick otherwise you are out of luck.
I really need to have something done and done urgently because I am getting really bad. I can barely get off the couch, I am extremely weak, I am in so much pain, etc. I get this horrible spasms and twitches that can actually send me across the room. I can literally be sitting on the couch and when I have the spasms or twitch, I can literally fly across the room and land on the other side. It is really bad when I am standing and get the spasm or twitch because I end up flying across the room and then falling to the floor. It is really embarrassing too because there will be times when I am with people and I will have the hugest twitch/spasm and people will be like “What was that?”
One horrible aspect that I am dealing with right now is my memory. I used to have the best memory out there. I used to have photographic memory. However, lately my memory has been getting really bad and deteriorating. I never thought that after all that has been robbed from me (i.e. the eating, walking, etc.) and the pain that I have been experiencing that I would also have my memory taken from me. It is bad enough going through all that I have been going through already, but to now watch my brain deteriorate now… I just honestly can’t stand it. I never thought it would come down to that.
I have been having memory problems for awhile. However, I always thought that it was because of all that I was going through since I was going through so much and had so much on my plate. I was under so much stress, so I thought it was ‘normal’ to be forgetting some things. I also thought possibly it was because of all the medications that I was on because I am not on a little amount. Plus, the stuff that I am on is ‘hardcore’ stuff too like methadone, morphine, dilaudid, etc. So I thought it was no wonder that I was forgetting things. However, it is at the point where my short-term memory is horrendous. I lose track of the days and where I am at times and what I said before and more. Sometimes it will take me like 10 minutes to figure stuff out. I can’t even remember at times what people said a few minutes ago. It is definitely not normal. When I realized that this was definitely not ‘normal,’ I went to the doctor and asked about it. I also did research and found out that this is totally because of my illness. I just don’t know if I can handle watching my brain and memory go after all that I have went through already. I need help badly but unfortunately my life depends on treatment and that treatment is just too expensive for my family to afford alone. That is why I am so desperate for help from others.
I found out that unfortunately, Short Term Memory Loss and RSD tend to go hand-in-hand. Who would think that misfiring of nerves would cause a whole body to malfunction and ‘die?” As it misfires, the whole cycle of problems start. The disease affects everything including the limbic system because that is where the nerve polysynaptic sensory fibers terminate. As RSDS progresses, the abnormal pain of the sympathetic nervous system has an effect on the rest of the body and can finalize in total disability when the muscles, bones, skin and the autonomic immune system become involved.
RSD greatly affects the brain. When there is poor circulation to the brain stem (which is in most cases with RSDS patients.) memory loss, dizziness, poor focusing of eye muscles, poor balance, and migraines result. These are the problems when the disease causes constriction of the vertebral arteries. There can be constant pain in the limbic system (Frontal and Temporal lobes), which also causes the memory loss.
So, like I said… we are supposed to be heading to Florida on the 15th. Hopefully I will get some more donations and I will be able to get the comas that will help me, but who knows. I am really praying. I desperately need it. But of course I am not counting my chickens before they hatch because I have been disappointed so many times in the past. I just keep telling my dad that I don’t want to go to only be let down because I won’t e able to have it done in the end. There is nothing worse than being ‘teased.’ It is like having your favorite piece of candy being swung right in front of your eyes and you can’t have it.
I am also supposed to be leaving Memorial Day, May 27th for Minnesota. I am really hoping that they will be able to help me. I am going there for my GI system. Hopefully they will be able to do something because they are the top hospital in the United States and they are supposed to be the hospital that sees all the rare diseases and diseases that can’t be helped elsewhere. Besides seeing the top GI docs and hoping that they have something up their sleeves to help me, I am hoping that perhaps I can participate in their study that they are doing there with hemin cells because they are showing that it has been successful in treating my paralysis of the GI system.
However, the Mayo Clinic said that they wanted me off my meds for 2 weeks prior to coming. I am on so much medication and I am so sick that if I came off of them, I would surely die. When I spoke to my docs in California, they said that I should still go even though I am not coming off the meds. They said that the docs at the Mayo will still see me even though I am still on the meds. I am really hoping that they are right because I don’t want to make that big trip out there for no reason.
I am also scheduled to go back to California in June for another surgery. They have to buy me time because I am not going to last. They are going to put tubes in me again and try to get my body to ‘accept’ them even though it didn’t work before. So I am really having a busy agenda coming up. I just need the funds so that all this can happen.
The bones protruding out of my mouth are also getting worse. My doctor is going to the hospital tomorrow and therefore, he is going to talk with all the head doctors there tomorrow and see if there is anything that can be done because I am suffering so much. No matter what we try to do to stop the pain such as lidocaine or numbing stuff, it just doesn’t lessen it. The pain is just horrible. It makes eating and drinking so much worse. I barely can eat or drink as it was without the osteonecrosis. Not it is even worse. Ideally I really need to have a graft put on. But the problem is that there is really no place to take the graft from because I am so tiny and even if I had the graft performed, we don’t know how well I would heal with everything that is going on because it is in such a bad place as well.
I also have another problem because I am due for another infusion coming up for my bones. I need this infusion because I am a life-threatening fracture waiting to happen. The doctors are always afraid that something is going to happen to me because my bones are so brittle. This is also due to my wonderful disease. Talk about a disease that doesn’t stop giving, right? Anyway, even though it should be a no brainer to get the infusion because I desperately need it, I don’t know if I should because it only will kill the bones in my mouth more; it will make the bones protrude even more and die. So I don’t know what to do. It is like I am in a no-win situation. So I really have to think what I am doing.
Well… I guess that appears to be everything right now. Nothing else is going on. I am reading an amazing James Patterson book right now. I started to think he was getting ‘old’ and boring because his books lately were getting to be really bad, but this book that he just released last week is simply amazing. Its called “12th of Never.” I strongly recommend it.
We had a pool in our backyard for ages. We built it for me when my brother was born so that it would give me something to do because my brother was an infant and my mom couldn’t really take me to the beach or pool because of him. But we haven’t used it for like 2-3 years and instead of still keeping it up, we finally decided to take it down. It was about time because the amount of times we used it towards the end was only like once or twice anyway. To think… my dad would ‘baby’ that pool and take care of it all throughout the summer (open it in the beginning of the summer and winterize it at the end of the summer) for just that one or two times. We used to refuse to go into it because it was way too cold. Despite my brother and I pleading for a heater… we never got one and therefore, we stopped using the pool. But my dad never wanted to take down the pool. I am not sure if it was because he was hoping that we would use it again or he just didn’t want to do all the work. But it was supposed to be my brother’s project since he wanted it down so badly. Yet, it turned out to be my dad’s project because even though he started it, he gave up and gave it to my dad to finish. My dad was stuck doing it as my brother watched while playing on his phone. I knew that was going to happen. I knew that my dad who didn’t want to do it would be the one stuck in the end doing it.
So now we have a huge pit of dirt in our backyard because that is where the pool was. I have a turtle named George and he loves going outside. He is more like a dog than anything else. He isn’t your typical turtle that just stays in his shell. Instead, he loves to watch TV, chase the other animals (dog and cat), go out, take baths in the bathtub, etc. In fact, when you come into the room, he will literally start banging on the cage to come out. Then when he is mad, he will literally have a hissy fit and throw around his dish and spits.
George is too much. Everyone loves George (including the other animals). The best part of him is that he is totally clean (we had him tested) and he is one-of-a-kind. I have had him for so long. He is definitely unique. He is an escapee from China. When I got him there was a embargo act and there wasn’t supposed to be any shipments of turtles or anything from China. Well… I always wanted a turtle and after waiting so long, the aquarium called me and told me that they smuggled one in and asked if I wanted it. I went down to see it and it was love at first sight.
He is such a funny turtle. No one can believe he is a turtle because he acts more like a ‘dog’ than anything else. He isn’t afraid of anything and loves to eat bugs, worms, etc. He is also spoiled. He has to have premium food and he doesn’t even like to bend to eat. The pile of food has to be high enough so he doesn’t have to bend down. He is too much. I already gave strict orders to my parents that if something happened to me, they better take good care of George.
I don’t think I have anything to worry about because my father loves him way too much too. Every Sunday morning when my dad sits on my bed and watches a movie with me, he always takes George out and lets him walk around. He also loves to bother George with his toes by rubbing his toes on his shell, which drives George absolutely crazy. As a result, George always goes after his toes and his toes only and my dad has to wear shoes when he’s out because he tries to nip them. George is so smart because he knows exactly whose toes belong to whom because he won’t touch anyone else’s toes except my dads. We don’t have to really watch him because he is ‘toilet trained’ and he knows not to go out of the room and not to go down the stairs. He is really smart.
I have the weirdest pets. Even my cat Missy is too much. She won’t leave my side. She likes to baby-sit George too. So since I don’t sleep at night and watch TV throughout the night, all three of us end up spending the night together watching TV. Missy also loves to see what I am doing on the computer so whenever I am on the computer, she is right beside me watching.
I just love my animals so much and that is why when I go away and when I am in the hospital it is so much harder. I miss my animals… my cat, dog and turtle way too much.
Well… gonna get going because not feeling well and I wrote a lot already. I’ll keep you posted on what is happening. If you can, please spread the word about how much I need donations. I really have a lot coming up and it is contingent on funds. Without the funds, I won’t be able to go for it. I am rapidly deteriorating and like the doctors have already told me… I probably won’t make it through the summer unless I get some kind of ‘help.’
Thanks again for everything. Any help that you can give me would be much appreciated.