I dwell too much on the past. I’m optimistic about the future, but I am not a futurist.* I would like to be more of one, but it’s hard when the past is so heavy and every time you try, some new medical development comes along to shake up plans and expectations.

I think sometimes that this state of being has hindered my development as a person. A lot of my biggest medical milestones – none of them good – happened during the years when most people are developing their socially personalities.

I am a luddite. If you’ve never heard of luddites, they were the anti-tech people In England during the industrial revolution who would burn down factories because they were afraid automation would take their jobs. These days, it’s a word that describes people who are generally resistant to technology.

If you know me, you know I would much rather be using a pen and paper than my computer. And I often let my voicemail box fill up so I don’t have to interact unless I want to. (To be fair, that may be more anti-social than luddite.) I use social media minimally and I still won’t deposit a check by taking a picture on my phone. I could continue, but you get it.

These days, I am irrevocably tied to technology.

I wasn’t great at science or math when I was in school. I wasn’t bad, I just wasn’t that interested. There was so much fantasy to read and history to learn. I guess the joke’s on me that I now have to practice biochem literally every day.

That’s what having a chronic or autoimmune condition is. You learn how your body works in its unique, broken biology, and you learn how your biology works with the chemical treatments prescribed to manage it. Everyone’s set of symptoms and severities is different. There are parameters, but there is always the possibility of being thrown for a loop. The period right after diagnosis is rife with indicators, but sometimes it takes a while to notice them.

Do you remember Successories, those posters (and so many other products) that had “motivational” sayings on them? Fifteen or twenty years ago, they were everywhere – offices, dorm rooms, and gyms across the country. [Full disclosure: I had a desk calendar. Our office manager chose it.] I suppose the idea was that if you were struggling with Gratitude, Collaboration, Excellence, Integrity, Perseverance, (all those things you’re already bringing to the table), you could just look at one of those posters and muster the strength to be all you could be, to borrow an Army slogan from roughly the same timeframe.

I have seen a lot of articles mimicking that sentiment directed toward patients struggling with difficult conditions. The main theme is, “Everything is going to be ok. You’re going to be ok.” That’s good some of the time. Not all of the time. The fact is, these conditions are scary. Sometimes you’re not going to be ok. And that’s ok.

I’m not an activist. Or I wasn’t. Too much of a commitment. Takes too much time. Too public. Too much baggage attached to that word. I just wasn’t interested.

But the same change in perspective that helped me start sharing my experiences on this blog also caused me to start rethinking other positions I held. I was hesitant when the first activism opportunity came to me. I was already spending several hours a week on the blog in addition to my full-time job and taking care of my conditions.

I didn’t know I was self-advocating when I did it.

I just knew that I was right and they were wrong.

I was on a panel recently about becoming an influencer, and I remembered something that was probably my very first act of self-advocacy. This little act of defiance and protection took place when I was seven, so if there was one before that, I’m kinda glad I don’t remember.

How often do you feel powerless?

As patients, we often feel like we are at the mercy of fate or a higher power or our own bodies. There’s not a lot we can do about it when our bodies break. Even when it’s gradual, there are ways to address symptoms sometimes, and perhaps halt the decline but, at least for most of mine, I have had to sit back and feel it happen until the damage is done, and my body settles.

It’s not a topic I am fond of examining. If I avoid talking about it, I can pretend that living in my body doesn’t make me feel powerless.

But sometimes it works in our favor.

Last week, a friend with a couple of jobs, a family, and a house-flipping project asked me “how I did it”. She meant how do I find the time and energy to deal with everything my conditions throw my way that healthy and mostly-healthy people don’t have to deal with.

It was an interesting question, and sent me back 30 years to an evening in the midst of The Great Noncompliance Rebellion™ of the early 1990s when we had friends over for dinner. I was taking my blood sugar on one of the old meters that required a “hanging drop” of blood. One of the girls fairly close to my age commented that she didn’t know how I did it. Did what? Hurt myself on purpose every day.

The Affordable Care Act (ACA, also called Obamacare) became a teenager this week. For many of us, its passage changed a lot of things.

It was far from a given, though.

The ACA was passed at great political cost. Not everyone in the Obama administration wanted the President to spend all that political capital on healthcare. Some of his advisors wanted him to stick to something more bi-partisan, like infrastructure. But once the President made it clear he was set on this path, everyone worked their butts off to get it passed. And here we are, despite numerous legislative attacks chipping away at the original law, both attempted and actualized.

I was at a conference earlier this week, and like most of the conferences I attend, patient-centricity was a primary focus. Unlike my last conference, I was one of few patient representatives. Both speakers and attendees were decisionmakers in government, research, and advocacy. I was pleased by a focus on increasing patient engagement to improve everybody’s data.

During one of the panels, the discussion turned toward adherence -- what they used to refer to as compliance in the good old days. Or rather, non-adherence. Adherence, the new word used in the healthcare industry as a nod to sensitivity – apparently ‘compliance’ connotes too much blame – is a complicated and nuanced challenge. There are lots of reasons a person might not follow a treatment.