yellow background with orange-ish text: "Tough Decisions Ahead" and white text: "Not Standing Still's Disease"
health adventure

Tough Decisions Ahead

The last few weeks have been incredibly difficult.

On the last half of my prednisone burst, I started experiencing worsened arthritis symptoms. Once the burst was over, I was exhausted AF.

I saw my rheumatologist two weeks ago for a scheduled follow-up, and it was good timing. I’m clearly still flaring. We did a triamcinolone injection that really didn’t help. This week she wants to try a second shot to see if that helps.

It’s hard. I have so many things to work on, things to do. I’ve had to slow things down a lot. Standing in place for more than five minutes is horribly taxing. My knees have been swollen every single day with hand swelling and pain popping in most days of the week, too.

The hand pain is frustrating because things like using my cane that would be helpful just aren’t feasible. My canes both hurt my hands far too much to be for daily use when I’m dealing with such hand pain. It’s probably time to start considering more heavy duty assistive devices, but I’m not sure what would work best for me, either.

A wheelchair seems like a good idea until I recall how much pushing my hands would have to do – likewise with a rollator. With conferences coming up, though, I need to at least consider making a decision.

I don’t like these tough decisions. I will say, though, that I’m far less afraid of using these things than I would’ve been in the past. Having friends who rely on these things is helpful, and talking together is even more useful. I’ve been able to confront the internalized ableism I’ve held since childhood about assistive devices.

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