Laura's Muscle Myopathy: A Quarterly Report

October: a month of extremes.

It’s been a long time since I’ve reported in, mostly because things are (mostly) going really well. Which, I’m discovering, is hard to write about.

Yes, folks: Normalcy — the goal I’ve been working toward since getting diagnosed with this muscle disease back on July 2 — is, for the most part, boring. 

Nevertheless, I present to you: highlights from the past two months:

August 11: Started titrating down my steroid dose. (Was at 80 mg back in June but have been at 60 mg since July 8. Stepping down 20 mg per week until I get to 20 mg total.)

August 27: First rituximab infusion.

August: Yoga and PT daily. Began walking without my ski poles. 

September 6: Got all excited when I walked to Walgreens and back for 2.7 miles — the most I've done at one time since last spring.

September 11: I had my second of two rituximab infusions, and I was such an old pro at infusions by that time that I slept right through it. Steroids are now at 20 mg.

September 12: My primary care doc called with results from bloodwork done the day before, and my serum CK level (Remember, that's the magic number for this disease because it's an indicator of the extent of muscle damage.) was 150! To show how exciting this is: Average CK level in a healthy body is around 200. Mine was at 6,800 in May. 

September 13: Tim and I got up before the sun to try to continue our years-long tradition of early Sunday morning long walks. It was so beautiful and so thrilling to be out strolling that — after months of feeling crippled — I accidentally walked five miles! Went home and promptly napped. 

September in general: More yoga and PT. Lots of walking. Getting stronger.

October 1: Got permission from the rheumatologist to continue with steroid taper (after having been at 20 mg for three weeks). Titrating down 2.5 mg per week.

October 3: Did a headstand! Not a pretty one, but I'll take it. . .

October 8: Another serum CK: 221. Higher than the last one, but since we're reducing steroids, I suppose this is not surprising.

October in general: Brain fog seems to be resolving — is it the lowered steroid dosage? or work-deadline-inspired adrenaline? Continuing with yoga and PT. More walking. Getting stronger.

November 5: Steroids are down to 5 mg prednisone. 

When your hair falls out, just pick it up and put it away for later! 
(I know this is kind of gross, but isn't it also at least a little resourceful?)

And, keeping things from getting too ho-hum, here are some . . . lowlights:

September: Got more energy but can’t get myself to think clearly. Brain fog? Cognitive dysfunction is listed as a side effect of long-term steroid use. Is this what’s happening? [Note from the future: by late October this inability to put thoughts in order had lessened.)

October 1: My hair seems to be falling out in record hair numbers. Doc said I could up my folic acid intake to 2 mg, which she said should help. (Folic acid is the synthetic version of folate, which the body needs for several tasks, including healthy cell growth. And folate is destroyed by methotrexate, but can sort of be replenished by folic acid. So when you’re prescribed methotrexate, you get a bonus folic acid prescription along with it.) 

October 29: In an apparent Grow Your Own Halloween Costume move, I fell hard while walking (but walking beautifully! And fast!) and appear to have broken my nose and cracked a rib. I tripped on a pipe sticking out of the ground in a dirt lot and landed on my face. Trying not to think of it as a setback, but yet again I find myself in a place where movement is not easy. Perhaps there’s a lesson here I still haven’t learned?

New face, new opportunity for some Zoom background fun