different medications towering over a person

Drug Denial: I Think I Need Meds Again

It's funny how chronic illness works. It really forces you into the present moment, in a weird way. When you're good and pain-free (or at least having minimal pain) you think, "God, this must be the new me!" — and then bam, your hip...and then your knee...and then your SI...and then everything is on fire.

In that moment, of course, you can't even remember what it felt like to be pain-free or feel somewhat normal. Many people with AS don't get relief. They live on a pain scale between seven and ten. Good days don't exist. There are only bad days and awful days.

I feel like I've been in that camp for the past two months. I guess it's a long flare — but it's hard to see a future where it's not my eternity. It's hard to remember that back in February I was doing great. Even typing the word great is weird, because I feel anything but. It's funny — for about nine months before that, my flares were at a minimum.

And ever since I lost my insurance (when I was on Humira), I've been managing AS without biologics (I also got super sick on Humira so I came off it). With the few flares I had (although my god, I had some hard effing times here and there), I felt: I've got this. I exercised daily (I still do). I walked. I meditated. I journaled. I ate well. I cut back drinking. I cut back and then quit social smoking (I knooooow, please don't judge me). I let myself sleep as much as I needed. I took care of my body (I still do). I took CBD and it helped. And guess what?

All of the things that worked aren't working.

My lifestyle changes are not working...at least not like they did

This is a realization I've been denying for some time — for at least two months. Even though it's just two months of horrible pain (and I know COVID contributes to this — I lost my swimming pool, which kept my mobility intact), I can't help but think: Is this my future? Is this what will happen if I keep trying to manage this monster on my own?

Maybe. Maybe not. If you've been reading me for some time, you'll know I'm a big fan of holistic living. I believe that medicine is necessary and I'll never, ever deny that — but I always try to do everything I can to take care of myself. But sometimes we need intervention, and that's okay. That's okay. Especially with a disease like this.

I still don't have insurance and we're still in the middle of COVID here in NYC, so going into the hospital for X-rays and blood work isn't exactly super feasible. But I think I need to set my denial aside and face the music: I need and probably will continue medication.

It sucks to face the fact that I will need medication to live a normal life. It's just a lot. Three years post-diagnosis and here I am on that same roller coaster of grief, moving between denial and acceptance and anger and acceptance — and back to denial.

What are your experiences with medication and AS?

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