We’re halfway through September and it’s still too hot and humid here for spray painting (and priming) on the patio. I’ve done the prep work on my resin models (some of which will complete the lighthouse interior), I have the paint and the 3M respirator and other supplies, and every weekend I glance at the seven-day forecast and sigh, knowing the wait will continue.
So many parts of my life are in stasis right now, not just silly hobbies. It seems like I’m always waiting for appointments or results, waiting to see if this medication tweak or sleep strategy moves the needle. Normally I take it in stride, but occasionally — especially on days when I’m already in a bad mood about something else, as I was today — it gets under my skin.
My levodopa was slightly increased again at the August checkup, though I didn’t mention it here because I’m unhappy about it and uncomfortable with doing anything more that might (possibly, but not certainly) hasten the development of dyskinesia.* Our health insurance company recently switched the Humira I’ve taken since 2017 to a biosimilar, which is happening across the board for many patients, and that was a stressful process as well, even though I’m enormously grateful to finally have access to lower-cost options.
I just want a break from pharmacies and doctors, from therapists and tests — and from plans. We have plans to aid sleep, plans to avoid naps, plans to mitigate fall risks, plans to minimize coughing and choking. The latter includes its own plan for chewing, which I’m supposed to concentrate on the right side of my mouth whenever possible.** LSVT is all about plans for speaking louder and with greater clarity, along with bonus plans for stronger breathing.
Taken together, these schemes and systematic approaches are so numerous and span so many categories that it sometimes makes me wonder if I can do anything right. That’s obviously an unhelpful (and flagrantly stupid) attitude to take, particularly when the problems in need of correction aren’t ones I personally caused. Still, they’re mine to live with and my responsibility to address, which I don’t mind overall — I’m lucky to have issues that can be improved — but felt resentful of today.
We’re at the halfway mark of LSVT and the reconsideration phase of my SSDI claim should be over soon; the exams ordered by the adjudicator are coming up in just over a week. The finish line is in sight, and by the time I’m through with all of it the weather might allow for the completion of some of my projects. Maybe I should work on plans for that.
* Not everyone with PD gets dyskinesia and my doctor’s advice is to ignore the possibility when making medication decisions, which is a conversational detour for another day.
** The funny thing is, it’s not even the first time in my life I’ve had a chew plan. “Eat slowly, chew thoroughly” is drilled into your head by doctors, nurses and surgeons as soon as you’re allowed to eat again following the removal of your large intestine.