That being said, I have to come off many medications that would interfere with the more invasive coma and as a result, it means that I have to come off some of the painkillers that I am taking to ease the pain. I also suffer a lot of comorbidities such as Gastroparesis, Osteonecrosis, pituitary tumor, etc. and taking me off these medications are not just affecting the neurological illness and causing me to feel worse in that area, but it is causing me to feel worse in the other areas as well because the Gastroparesis, Osteonecrosis, etc. is just so very painful. You know things are bad when you speak to other people suffering from these conditions and who underwent this procedure and they say that they had to take sleeping pills just to make it through this ordeal because it is too painful otherwise. However, I am on so much medication and the coma isnt right around the corner and I cant sleep the next few months. I cannot be Rip Van Winkle even though I really wish I were. Unfortunately the coma isnt scheduled until the latter part of the summer like in the beginning of the September or October because it takes time to come off of all the necessary medications, and I cant sleep til then. I cant come off them too fast because it can easily kill me if taken off too quickly. So it looks like I will just have to endure what is to come on top of everything else. I have really been suffering worse than ever though. The pain is just so excruciating and the autonomic dysfunction is totally out-of-control. I keep breaking into blisters because I get so hot and I cant sweat because of the autonomic dysfunction. Nothing cools me down and I cant even tolerate things blowing on me or a cold compress or an ice pack anyway because of my extreme hypersensitivity. I am in extreme pain 24/7 and having the a/c directly blow on my skin or putting water or ice on me literally sends me through the roof. I cant even tolerate anything on my skin like pants because I am so sensitive especially when I get these hot flashes. In addition, I have been getting the worse pains in my abdomen. I never had pains like I have been receiving. Every time I eat or drink it is even worse. It really is hard because I am so thirsty that I am dying of thirst. Yet, every time I drink the pain worsens so much that all I can do is curl in a ball and cry. I cant even walk with my crutches because every step feels like there is a knife going through my abdomen. We dont know what the cause is. When I spoke to the doctor he said it could very well be pancreatitis, which is extremely painful, or it could be a result of the obstruction or colon twist that I have in my abdomen. I never had it so bad. Knowing how bad I am suffering, something has to be done. Like I said before, we are planning that intensive ketamine coma in North Carolina, but it isnt for a while. I just hope that I will be able to make it that long because every day is extremely CRUCIAL. We arent even sure each day if I am going to make it through the day because everything is touch and go. But we are just keeping our fingers crossed like we always do that I will make it. No one thought I would make it this long, but I am still here. I am defying all odds, but to be honest with you I dont know for how long. I also dont know how we are going to afford this treatment, so we are hoping that in the meantime we will be able to find a way to pay for this coma as well since it is very expensive. It would definitely stink to suffer all this and wait all that time to have the coma and then I wont be able to go for it after all because we cant afford it. So if you have any suggestions or can spread the word that we need desperate help, we would really appreciate it. In the meantime though, something has to be done in order to buy me time or I am definitely not going to make it. This is another reason why I am writing. As I told you before, we have an upcoming trip to California planned for July 21st. During that time, I will be having multiple surgeries including surgeries to have a PICC line inserted, surgeries to have tubes placed so that they can try to feed me, surgery to try to remove the stool that I am so loaded up on, etc. It is really going to be a difficult time with all these surgeries. Even though I have had some of these surgeries before like a PICC line and tubes to feed me that failed in the past, they are going to try to do them again in hopes that it will work. After all, we are running out of time and running out of options. In terms of the tubes to feed me they are going to try to position tubes into my intestines in a low enough portion in hopes that they can find even a very small viable portion that would still be able to accept food. But I am really nervous because not only am I going to be undergoing many surgeries, it will really be in a tight timeframe because I just found out that my head doctor will be leaving Stanford right afterwards. I will be my head doctors final patient at Stanford. I was told that he will be leaving right after me and therefore, it is important that I be out of the hospital and everything accomplished by a certain date since he will no longer be there. I am really upset because I really hope that I will continue to be a patient of his because he is the only doctor who is knowledgeable, capable, and willing to treat me. Never before have I met a doctor that is so knowledgeable in my GI condition and know what to do. In addition, he has such terrific bedside manners and doesnt do anything that will hurt me. He takes my overall disease into consideration when he works on me and understands how doing anything can affect another condition that I suffer from. Instead of him doing what he wants, he works WITH me so that I am not suffering even more even though by textbook and medical books it might be the right way to go and the best option. For me, I cant always go with what always is written in medical books as the appropriate treatment. I am extremely complicated and what is normal for a regular person is definitely not normal for me. Doctors really have to use their brains with me and what is obvious on the surface is definitely not what is going on with me on the inside. That is why most doctors cant treat me and refuse to treat me. I am not an easy case and since I am a challenge to them, they dont like to treat me. Doctors hate to think, as they always say it is in a patients head when they dont know something or cant figure something out. My doctor is the first to admit that I am a real challenge. But no matter what, he always is able and willing to help. He always takes his time with me and lets me ask as many questions as I want too, as he never shuns me away from asking something no matter how stupid it may sound or even if he doesnt know the answer. Like I said before, he is the only doctor willing to even touch me and do something without handing me off like a hot potato because most doctors are scared because I am not in the best condition. Doctors usually dont want to do anything that will threaten their reputation. However, my doctor is always willing to help me in any way possible.
Posted on: Wed, 26 Jun 2013 05:04:20 +0000
Trending Topics
Recently Viewed Topics
© 2015