THE ODDS (Debbie Does ALS)


Clinic: 25 June 2010

I've waited too long and can't remember all of my stupid dream. I'm sorry but you will not be treated to a glimpse of my twisted inner self. Dodged a bullet there, didn't you?

Instead I'll give you a clinic report.

First, the obvious. I still have ALS and, also obvious, it's getting worse. No surprise there.

Second, despite all my efforts to maintain my pleasingly plump person, I lost 5 pounds. I was sure the nutritionist would say something but she did not, perhaps because she was leaving to catch a flight to Spain. My 5 pounds was not noteworthy -- to her -- but I was delighted. I always had to work hard to lose weight, so losing weight without trying is a whole new experience. I know, I know, it isn't necessarily a good thing but I am making lemonade today.

Third, my FVC dropped from 70% to 53%. (My first attempt actually measured a 48 but I always get a do-over.) (Captains log, star date July 1, 2010: received the follow-up report from clinic which indicates a measurement of 49%.) This reading surprised me; I expected it to drop but thought it would be in the low 60s, even high 50s. As expected, there was conversation about using a bi-pap (which I really do not want to do) and, after inquiry from Lynne, Dr. Bayat advised that an FVC of 20% was not life-sustaining. Lynne asks ridiculous questions. On the plus side my blood oxygen was 98%.

An abnormally high blood pressure reading was duly noted and, if the trend continues, blood pressure medication may be prescribed. I am so sick of medication, the thought of taking more makes me nuts. I would take up running again, but my heart is not in it. You're laughing, right? That is funny on so many levels, I am impressed with my own wit.

Next report to be issued at the end of September.

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