Not Even a Minute

Today, I have experienced not a minute, not even a single minute without extreme pain. Not enough to make me writhe in agony, but enough for me to wish I was sedated. All day. Not even a minute during which I could say, “Ahh, the pain tablets have worked.”

And this is while still using the Enbrel. Toes up to neck. Pain. Swelling. Pain. Stiffness. I could hardly walk today. It’s like my joints- hips and SI- were made of hard cement.

If I needed any further sign that Enbrel is not working for me, today is it.

I did write to Discovery yesterday, asking them their reasoning. The auto reply said it would take 30 days to get back to me.

I don’t have 30 days.

I don’t even have 3.

Everything is getting worse TODAY.

My mobility is frighteningly reduced. Where will I be next year? Or, at the end of the year?

I’m praying that this is “just” a winter flare, though they do say that every flare causes even more damage than normal AS.

Pink is me last week. I can’t get any higher. Black was in December 2023 and even then, I had been frightened because I’d become worse than I’d been in August.

I feel worse.

I am worse.

I hate AS

And though I keep thinking I’m ok psychologically, my husband says I am depressed. I guess I fit in with the description of those with AS in every aspect.

I still think though, that my depression is more because of the helplessness around getting my children the intervention they need, and thereby, getting the REST I need. It’s the combination that is so vicious. Pain, fatigue, hard work – inescapable work. No leave. No time off.

I need a miracle. Maybe more than one.