Wide Awake in New Jersey

Wondering what I'm doing up at this perfectly hideous hour? Me, too. I'm not particularly interested in being awake now. But sleep simply was not possible.

I went to bed around 2030, my standard bedtime. It felt okay, even nice, for the first 120 seconds... then my legs began to ache. I moved around a bit and it worked for a while. By ten I realised that sleep was not going to come, at least not the way I'd like. Luis came to bed and commented that I was really hot (no, it was not meant as "baby, you are smokin'!" More's the pity...). He was very gentle with me and softly rubbed my skin and I did finally doze off for a bit.

The pain in my hips - unbelievable, burning pain - woke me up and while I tried to find a position of comfort, none was to be had. It was just criminal. I ended up getting dressed and coming out here. I don't know what the hell to do.

The doctor, with a difficult to pronounce Russian name, saw me at around 1540. She checked my history, had a lot of questions about the muscular dystrophy (they all do... I went to the only specialist in the country, in Philadelphia. I can't go there for a spur of the moment need, obviously. She checked some of the basic strength points, then looked me over for onset of infection, such as flu. She did not find anything to indicate that this was achiness as a result of incipient flu symptoms.

Part of the decision to check for flu symptoms was the fact that the sleep aid ceased working and when I thought about it, it has happened before. 1. It does not work if my health is compromised and I am sick. 2. It does not work under severe emotional stress. It ceased to work when my mother when she was in the hospital and when both of my kitties died. The doctor at the time confirmed it.

Her analysis: a flare-up of the muscular dystrophy. She ordered a blood analysis to see if the CPK levels are high (although this is a newer doctor for me, so I highly doubt that they have a baseline blood workup to compare it to. My CPK levels are too high all the time, that is the basis for muscular dystrophy. But blood is all to easy to give for me. The phlebotomist was wonderful.

I was supposed to give a urine sample, too. But I'd gone to the bathroom just prior to leaving the house, so short of wringing out my bladder, it was a futile effort. I did try, but it just was of no use. They gave me a sample cup to take home and drop off. Wonderful...

Anyway, I was pretty upset about this. I've never experienced a muscular dystrophy flare-up before and if this is happening, then the disease has progressed. Is this something I can look forward to? My gods... this is not how people should live. This is the first time I have seriously had to question my future and wonder how this will go.

I don't know if this is what hip arthritis feels like but if it is, then I learned that hip arthritis is much more debilitating than I ever realised. I understand my father's difficulties prior to the hip replacement surgery. Unfortunately, my hip problems, unless I have suddenly have severe arthritis (highly unlikely; for starters it runs in neither side of my family), this is muscular, and there is no surgery that will help me. Great. Fabulous.

So here I am, wide awake and in pain.