dragonfyre's Journal

I get so frustrated with what seems to be going on with me. Doesn’t seem to really fit any of the forums so I guess it will go here instead. Probably just as well as fewer people will see it. As some may know I suffer from multiple illnesses and because of the main condition the rest go without any medication at all and naturally that’s where a lot of the pain and mental stuff comes from.

The Drs can’t do anything about the primary illness (thrombophilia. A genetic blood clotting disorder (first hit in 1985) other then try to keep my INR (blood clotting index) under control. Because of that illness and the meds I need to keep it under control they can’t do anything about the arthritis or the sclerosing panniculitis, both of which cause a tremendous amount of pain. Both these secondary illnesses are treatable but because of the way the warfarin interacts so badly with almost everything they can’t do anything for them so I have to learn to live with three pain sources and I’m stuck with it. Over the years it just gets worse and worse. What I used to consider a pain level of 9 or 10 I would now call a 2 or maybe a 3 at most.

Over the years things just keep getting worse and worse and the Drs seem to have their own pet illnesses they like because they have pills for them. Usually causing multiple bad results. The last one put me in ER with fears of a stroke. I was told to stop taking the blood pressure meds as it was dropping my heart rate to the low 30’s. I’ve been off them for about a month now and while my blood pressure is within an acceptable range my heart rate is doing good to be in the upper 40’s. If it hits 50 I guess I am just excited for the moment. I have not told my Dr yet about this but she is the one who doubled the dose that ended up with me in the hosp getting a cat scan at 1 in the morning. I suspect that the low pulse means that not enough blood is getting to the brain (got a cat scan so know I have one LOL) makes the memory worse, makes it harder to focus on the things I need to do, and possibly makes me so very tired all the time.

Anyway the problem seems to be in my ability to focus on the things I need to do. I forget things very easily, tired all the time even when I can’t sleep, I walk like a drunken sailor at times and often almost fall over if I should happen to bend over to pick something up. Not to mention some problems that are personal and won’t mention here.

I am just so tired of it all. Nobody seems to be able to do anything about it and there is apparently no help for what I’m going through. I have lost all respect for most Drs as it seems like they don’t know what they are doing and the few that do are so expensive I can’t afford them or they aren’t taking new patients. I just don’t know what to do. I know what I want to do but I can’t just yet although I am working on it even though the Dragon Lady has her doubts about my working on it. I just feel so totally tired, lost and confused. I don’t know what to do or even what I’m really capable of doing anymore.