Tuesday, March 18, 2014

Losing the RA battle and it's only Tuesday!

Made it through the usual fire of biologic med side effects that kill my weekends (Fri PM to Sun afternoon) so I can continue to work, but between the impact of a terrible weather front and an insane workload, I came home in searing joint pain everywhere today.

Bed time? 6:15 PM. That's a new record for me.

Anyway, the reason I'm up now is to take some more Aleve to tide me over till I have to get back up at 3:30 AM for the next cocktail of meds so that I'm functional at work tomorrow. Otherwise I'd rather be unconscious to recharge my limited body battery supply before I have to get back on the hamster wheel again.

Even the popular biologic RA drugs (like Enbrel, Humira, or Orencia) can't perform those miracles that Big Pharma portrays in those commercials you see on TV. They seem to air with greater frequency these days. These ads really downplay the serious side effects - the narrators speed through a partial laundry list while showing the sunny, compelling visuals of people opening jars, digging in gardens, tossing a ball with kids, etc.

I guess visuals showing patients writhing with chills, experiencing crippling fatigue, and communing with the potty for 2 days a week after dosing their meds probably wouldn't go over well with focus groups...

The drugs don't stop progressive joint damage for everyone either, or stop the chronic pain entirely. They temporarily relieve some inflammation and, to their credit, for me have reduced sick days to nearly zero, a huge relief. Hell, I worked (though I probably should have been out, but duty called) even while suffering from shingles agony for a couple of weeks. Before biologics, I was probably down and out on average a day a week; that was at first diagnosis in 2011.

BUT, my effective high-functioning ("gee, you don’t look sick") hours per day are continuing to shrink, in the slow, steady decline folks with RA (and similiar autoimmune disorders) are all too familiar with. I look in the mirror and can now easily see the toll of the battle of trying to hold on to "normal" as it fritters away.

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