My mother-in-law is fond of chirping “The only disability is a bad attitude.” By virtue of her profession, Crankenstein strongly disagrees with this, and we both find it offensive, but we often joke about it at home anyway. That means when Crankenstein tells me “You seem more disabled than usual these last few days,” what she’s really saying is that I possess a bad attitude. Lately, she’s right.
For the last week or so, I’ve felt fuzzy-headed. A possible culprit is my levodopa increase. When I told the MDS that my pills wear off after 3.5 hours, she said to take it more often. And because of problems I’ve had sleeping, she also prescribed an extended-release levodopa for bedtime. Adjusting to a new pill schedule has been irritating and it’s been hard for me to tell if I feel mentally slower than usual because of this change or if it’s tied to what is called ‘off’ time in Parkinson’s lingo.
Even before the dosage increase, I was a bit overwhelmed by my new medication. Levodopa comes with rules about when and how to take it in order to obtain the maximum benefit, including how long to abstain from eating before and after each dose. My food schedule is already challenging on account of my Crohn’s and j-pouch and this made everything more irksome. The MDS previously added a nightly ferrous sulfate tablet to my regimen, to see if it calmed my nocturnal leg movements. That, too, has empty stomach requirements.
Since my remaining intestines don’t always work that well, I can have trouble absorbing pills. A doctor might insist on name-brand Synthroid rather than generic levothyroxine, for more precise dosing, or put me on injections or infusions instead of pills. For that reason I’m extra-careful about taking things as prescribed. Once I’ve been on levodopa longer and have a higher comfort level with it, I’ll probably relax. But at the moment it feels like a stressful, annoying imposition, even though it helps a great deal.
My watch vibrates with pill-taking reminders all day long. First up in the morning, eight pills: one Synthroid, two levodopa and five folic acid (taken to prevent nasty methotrexate side effects). During the day there are additional doses of levodopa, an arthritis pill and three large biotin pills (again to mitigate methotrexate side effects). In the evening, more levodopa, stomach pills, a muscle relaxant, and ferrous sulfate. Then there are biweekly Humira injections and weekly methotrexate injections.
I can’t tell you how sick I am of this schedule or how frustrating it is to have so much cumulative time each day during which I shouldn’t eat. And then the pharmacy called a few weeks ago: there’s a shortage of injectable methotrexate, so I had to go back on pills temporarily. That means 10 extra pills now, every Saturday. I feel 800 years old, but it’s the fuzzy-headedness that bugs me the most. My recent Father’s Day post was torturous to write, and it’s a lousy read, because I was out of it.
Your brain either clicks ‘on’ or it doesn’t. Recently, mine is like a dead battery that needs a jumpstart. And so I get tetchy and Crankenstein invokes her mother, which helps me dislodge my head from my ass. Maybe I’ll start spritzing WD-40 like perfume to make the process easier.