Gettin' On Up Under My Skin... :-o/

Friday, May 30, 2008

Yesterday (Wednesday), I woke up in the same position that I had gone to sleep in, according to CC. Once I had opened my eyes, I attempted to set myself up, and found that my left shoulder, and bicep and tricep, felt as if I have broken it/them; I could not move my shoulder. I could not move my elbow. I was able to move my fingers, but I was not able to move my wrist around. The pain was excruciating, and though CC had to go to work, she fed me some yogurt before she left, and she helped to try and get me propped up so I could be sitting up in the bed. The process took a little while to be able to pull off.
For the most part, I stayed in bed all day yesterday, only getting up to go to the bathroom. My aunt came over that morning, after being called by CC while CC was on her way to work. My aunt stayed with me all day until CC came home. I can't imagine how I would have made it through the day without her help. As the day progressed, my hips and my thighs began to hurt as much as my shoulder was hurting. I was able to walk with the assistance of Missy or CC, or if I walked with the cane, I had to use the cane holding it in my right hand and walking very, very slowly; one step at a time. It's got to feeling like my body had just betrayed me and my options were minimal.

My regular home care nurse, K.aye, has been out on medical leave herself, so I have had two new nurses for the last two visits, and the nurse that came yesterday was fantastic. Her name is Debbie, and she is very familiar with HKPP, having studied it and worked with patients suffering from it on the East Coast, where she is from. As soon as she came into the room where I was, I explained to her what was going on with my arm and shoulder, and she nodded her head in acknowledgment and understanding of what I was saying. She then shared that this is part of the HKPP process, dealing with the muscle damage dealing with muscle inflammation and just dealing with the pain, for that matter. She shared with us that it is very important that I stay on oxygen, especially in the timeframe of taking the pain pills, because the lower lobes in my lungs have begun to not perform properly due to HKPP and that I'm at increased risk of dealing with advanced cases of bronchitis and pneumonia; typical issues associated with HKPP. Towards the end of the nurse's visit, I asked her if all the different things that she's read in my chart and the things that I have explained to her, add up in her opinion to a diagnosis of HKPP, and she said 1000%.

This morning, Thursday, I woke up in less pain than I did yesterday, but I was unable to lift my left arm and move it around without dealing with a substantial amount of pain. There is no question that the pain medicine helped to give me back some mobility, in that, I was able to work through the pain, because it didn't hurt as much thanks to the pain meds, but at least my hips were a little less painful than they were yesterday and I was able to become a bit more mobile as the day wore on. I was pretty tired today, not having gone to sleep last night until 2 a.m.(I guess what that means is, I went to sleep at 2 a.m. this morning...). I ended up taking a six or seven hour nap yesterday to somewhat make up for the lack of sleep. I slept a little bit today as well kind of dozing off, catnaps and the like.
It is hard for me to believe, and to accept that my body is just falling apart before my eyes and before the eyes of my family and there is very little that I can do to stop it, at this point. Missy has gotten to the point now where she is verbalizing more and more that she curses the disease I have and that it makes her angry and frustrated to see me hurt and to know that I am deprived the many things that only two years ago I had and I could do. One of her most favorite things was me driving them to school in the morning in my truck. At this point in time, I can't imagine driving any real distance at all due to the reality that the attacks hit so quickly and so fast now, that I don't have time to respond, I just react, and all within a matter of a few seconds, I am incapacitated and at the mercy of my company or surroundings.

As a matter of fact, if I didn't have the software that allows me to dictate to the computer, then I wouldn't be able to get these thoughts into the blog at all, because I can't bring my arms up to type with any consistency or price.
Josh has been away on a two day overnight with the school and he comes back tomorrow (Friday) and I have been missing him greatly. I suppose it is on to Friday now, being that it is 12:22 a.m..

Onward...