Friday, September 23, 2016

silently tracking the monster

The rheumatologist thinks I have myositis. He drew seven vials of blood to run a slew of tests.

I have been watching my online medical chart as they are slowly trickling in.

While its nice to have a the name of the monster that is slowly crippling me, I am still wrestling with it.

I had a huge flair in 2015 of these same symptoms. We ran some of the same tests when I demanded the doctor do so, All but two were normal.

I was in the early stages.  I am in tuned enough with my own body to be able to detect small changes.
I new over a year ago something wasn't right.

This go around with the lab work, things are cropping up, finally showing what I have been enduring.

All this is a two sided coin that keeps flipping in my head.

heads - we are getting closer to finding a diagnosis
tails - its a rare disease ...meds will be too exspensive
heads - it's not a fatal disease
tails - its not a fatal disease
heads - symptom respond to medications
tails - I have adverse reactions to the top two used to treat it

I am relieved that at last, its showing up in the blood work. Everyone who thinks I am just being lazy, or I'm too old, or too fat can kiss my ass.

and then the coin flips...

and omg, its showing up in the blood work. I'm going to be diagnosed with something I don't really want.

Fears of being left in a state where I can't take care of my self. Too sick to be able to be a functioning member of society. Too impaired to work.

A year ago at work I was able to work four days in a row with few issues. Now days I can make three, and that last night is only accomplished through sheer will power.

I work in a three story building. I used the stairs for exercise. A year ago I could go up to the top floor with only my legs starting to complain the last 6 or so steps. Now there burning and screaming after the first 6 steps. I find my self taking the elevator more and more.

I am struggling to get back up after I squat down. The day where I can't make it back up is coming.

I go back in early October to see the doctor again. I am quietly hoping there is help coming. My tolerance and patience for being in this much pain and discomfort is gone.

I have reached out for support and help like I have never before to help me cope with all this and to keep safe.

I have a good pit crew on my team.

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