A lot of my emphasis on my health is, as long-time readers know, on the concept of management. I’ve had various health problems all of my life, sometimes feeling like too many to count.
A couple of years ago, I started keeping a Google document for my current medications, medication allergies, health history, etc. — things new or emergency providers need to know. The current version is three pages of small type. Eight daily prescriptions, before even getting into OTCs and PRNs. Six or seven current providers in different specialties. A dozen entries on the surgical history. Prosthetics in both ears, so I have to carry a card. Family history is kinda long, too. And so on, and so on. And I keep realizing I’ve left things off, too. “Oh, right, I had scarlet fever once — I’d better add that.” “Jalan, have I mentioned that I had juvenile disc disorder? That should probably be on the list. It’s the main reason I get back spasms.” Things I hadn’t thought about in years, that just faded into the background of my lengthy medical history. Even as I’m writing this, I just remembered a surgery and a condition to add (meniscus repair in my knee, and associated arthritis).
Then there’s the weird shit, some of it never formally diagnosed, like a mild prosopagnosia (face blindness). Jalan once flat-ironed her curly hair before we were meeting somewhere out, and I was trying to figure out if I knew this person and from where as she walked in the door. This was after she became my dominant, so not exactly the second date.
New doctors see the list and are often kind of amused that I bring it. Then, as they see how long it is and what’s on it, they begin to understand why. There’s no way I could remember all of that every time, much less fit it all in the tiny blanks on the intake forms. Sometimes I feel like I’ve got the health history of a 70-year-old. And not a particularly robust 70-year-old.
This actually isn’t part of the pity party, just facts of life as I live it. So many of the things on the list — the prosopagnosia, the bipolar, the arthritis, now the probable LEMS — aren’t cured, or even curable. They can only be treated and managed. Sometimes, as I wrote about last Fall, some of the management strategies fail — potentially disastrously — and have to be revised. The psych meds have ruined my long-term memory. I’m not amnesiac, but far fewer things make it into accessible long-term storage than did before I started them. They’ve dulled my cognitive edge, too. It’s been long enough that I don’t even really have a sense of what it was like to have a good memory, though I know that I used to.
If you know someone without a thyroid, or who is diabetic (thankfully neither is true of me at this time), you know the concept. The management strategies need to be constantly monitored and sometimes adjusted, and life is never quite the way it was before onset, but it is possible to adapt and life does go on.
Oddly enough, when I look at it, and how I live my life, and barring the imminent heart surgery, I usually feel like I’m in great health for somebody with so many problems. Weird statement, maybe, but it’s perspective. Even with the heart issues, the problems are largely asymptomatic right now. And the psych side effects are every bit better than the diseases. Maybe the perspective is something to do with being raised largely by a stay-at-home dad with even more problems. Some is to do with years of therapy. It’s a lot to do with a loving partner who knew what she was getting into and is still fully supportive every step of the way — sometimes the health news feels harder on her than on me. As I said yesterday, sometimes to me it’s just one more bit of fuckery and I have to laugh rather than worry. “Heart surgery? Ok, I can do that. At least it’s a positive step out of limbo.”
I’ve had trouble holding onto the perspective off and on for the last couple of months, mostly because there’s a new problem discovered or revised every week or three that breaks my progress in regaining my equilibrium. But, on a good day, I know I’ll get it back, and feel healthy again — limitations, management needs, side effects, and all.