Thursday, February 9, 2017

Absurdly grateful

Ah. I'm home after a day in town, doctor/store/store/pharmacy/store/pharmacy again. The roads were wet and easy to drive as this thaw continues. Getting out was a little more exciting – I did some sluing around in the foot of slush and had to back up and try the curvy hill again. I came splorting out of the drive, landed sideways in the road, and couldn't get any grip on the slickness to go up the hill. Had to weasel around and go down and around. Messy and inelegant, but not difficult.

Two town days in a row wipe me out. My MS guy was great, though. He offered the new MS drug again, and I refused, and we moved on. It's oralzibub or some damn thing, the first big drug for PPMS. (Ocrelizumab, actually. Those drug companies really need some help naming their concoctions.) Studies show it may slow the progression of MS by targeting certain B cells thought to contribute to myelin damage. That's a little too vague to appeal to me. "We don't know what causes MS and we don't know why this might work, but we think it could, and you should give us $30,000 a year to take it..." And since I'm soon to be without insurance, there will be no $30,000-a-year drugs.

We talked about the Wheldon protocol, using long-term antibiotics to kill underlying infections that may trigger MS. David Wheldon is a British microbiologist whose wife came down with incredibly aggressive MS. She's regained 90 percent of her pre-MS function and is doing very well. My doc is skeptical, since there are no clinical studies of this approach. Wheldon apologizes for that, but says he'd be a widower if he waited for clinical trials. And antibiotics are no longer under patent, so no drug company is going invest the millions that trials cost. I'll consider going that route if MS starts messing with my right hand. None of the big drug treatments offer the hope of regaining lost ground – only slowing the inevitable decline. Antibiotics I can handle – not so sure about oralzibub (onozimab? Beelzebub?). But for now, I'm going with not working, with resting, with quiet, with mindfulness, with spending time with my animals and my people. And working to get Vitamin B12 and D levels up.

Anyway, he suggested Ritalin as a help with MS fatigue. I'll try it, and continue with it, or not. It's up to me. Nice man. He listens to me, seems to understand what I'm saying, and is flexible. I've had neurologists recommend some treatment, and refuse to see me again when I hesitated or declined.

Shop shop shop, I did. Earl was angelic, waiting patiently in the car while I shopped. He is mi compaƱero. He received bagels. (Snap! Snap! Gone.)

And we finally, FINALLY! slued through the slushy driveway and dropped into the bare spot in front of the house. Sigh. There is no place on earth I would prefer to be. I was so grateful to be here. The lights were on and the fire was warm and C. unloaded the car. Home is very, very good, and I am lucky to have such a one.

Four eggs.

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