My Episode Of House M.D. Continues

Today’s telehealth appointment with my pulmonologist, a doctor I have due to the sarcoidosis diagnosis, focused mostly upon my consistently low lymphocyte and white blood cell counts, going back five years.

It could be for longer than five years, but that’s when I got Medicaid and therefore had doctors who ran blood tests. It drives me crazy that we don’t have blood lab data before 2018, because right now that sure seems like it’d be a useful thing to have had.

My doctors and I haven’t previously pursued the low counts because other things kept getting in the way, primarily the bladder diverticulum and related complications. At this point, it’s important to pursue it for a couple of reasons.

  1. Because one of the primary potential treatments for sarcoidosis itself suppresses the very counts that in my case already are low.

  2. Given that sarcoid itself does not typically cause these low counts, it’s time to determine what is causing them.

Up next is yet another round of blood tests (my pulmonologist warned me not to stress out that it could be something like ten vials) and another CT scan, I think, but maybe we delayed that for now.

In addition, I’m now being referred to Hematology, but not yet to Immunology.

We also discussed the fact that trying out an inhaler before exertion has not seemed to have had an impact upon the fatigue or windedness, which I felt more or less was in line with the stationary pulmonary function tests we ran which showed a negligible difference between my default breathing and that after using an inhaler.

For some immediate context: yesterday I hopped the bus to go hang at The Belmont Goats for part of their regular visiting hours.

This required a several-block walk in the bright, warm sun (a debilitating thing), then social interaction, very lightly assisting with vaccinations, then back out into the bright, warm sun to run three different grocery errands on my way home before I even could have lunch.

(I’d been out of SNAP funds for a couple of days, and it was re-up day, and I didn’t want to have to come back out, so I hit the stores in order on the way home. When I am low-resources, poor decisions get made, which explains why rather than waiting twenty minutes in the bright, warm sun for the next bus between stores, I walked.)

Today, while I woke up at around 10:30AM, I didn’t get out of bed for another two hours, at which point I went right for the shave, haircut, and shower. This was a dicey proposition because when I’m this worn out, the dyspraxia ramps up because my brain can’t run its compensating calculations.

I almost sawed into my ear with the clippers and then had nearly no sense of balance when I closed my eyes to shampoo.

It took most of what I had left to not fall asleep an hour before my telehealth appointment and then actually have the cognitive capacity even to have that conversation at all.

Not depicted above is that while for about three weeks now I’ve been back on the daily, evening walk, for the past several days the walk has been short and slow, after a couple of the full-length and exercise-paced walks left me light-headed. Then last Wednesday when I went to relax at the goats by myself, I moved a single, six-foot 2×8 maybe about thirty yards. Immediately winded, I had to sit down and do nothing for the next fifteen minutes. This gave me a three-day back ache.

Watch, though, as whenever Social Security gets around to its current turn in the back-and-forth of my disability application they nonetheless will deny that I am disabled.

It’s an open question, of course, whether or not or to what degree my low blood counts factor into my fatigue, but regardless I maintain that the extra work my autistic and dyspraxic brain does just to get through a normal day, combined with now being middle-aged, very much are not irrelevant.

Meanwhile I’ve still to decide on a schedule for yet another bladder surgery, this time to remove the diverticulum altogether.

Also, I managed to stay on Kaiser’s case long enough (finally!) to officially receive the developmental coordination disorder diagnosis I’ve deserved since a late-2021 evaluation by Occupational Therapy.