Disease Progression

There was a day when even modifying my back stretch exercise to a much easier version didn’t work. When it caused too much pain. I thought, “Is this the beginning of the end? Am I headed inexorably to being hunched or fused straight?”

There was a day I couldn’t do my shoulder and back exercises. I gave up in dismay, but hoped it was “just a bad day” and not something more sinister.

There have been DAYS where I have told my husband that I can’t search for my clothing because my shoulders hurt too much and I need to bring my arms down. Days when just hanging laundry tires me out and my arms shout NO. Times when I realised my arms weren’t moving as far as they should during my AS exercise. But I told myself I had begun badly -unable to do that exercise ever- so maybe it was not any worse.

I have mentioned the increasing pain here too many times to count.

And so, it should not have come as a surprise when my rheumatologist tried to move my joints, felt me and things were proven to have gone bad. My shoulders wouldn’t move as much as they could. She felt them protesting. Stiff. My fingers, wrist are swollen. My foot is swollen. My neck… My back… The measurement test she conducted on my back show progression. The phrase “incurable and progressive” doesn’t really show the horror to many non native speakers of English. Nobody ever says, “It gets WORSE? You mean this is the best you’ll be? But this is already bad!!” It’s too benign a description for what it means.

And so, medication change. I get sick too often to get any benefit from Enbrel. Consentyx is a once a month injection that ironically costs way more than Enbrel😔 and medical aid doesn’t even pay half the costs even though we are paying them way more in monthly premiums after moving to their most expensive plan.

I was extremely down yesterday. It’s one thing to feel pain and increasing stiffness. But I thought it was some prolonged flare. I didn’t know it was that bad.

So, we await medical aid approval and for the panel if rheumatologists to convene and agree. In the meantime, I’m not crazy. I really am worse. And will continue at a fast pace given I’m off treatment anyway for surgery.

I loathe all invisible diseases. Nobody can see the fatigue or the pain. My teens didn’t know I was suffering because I never verbalized it and my body language didn’t show it. I need nurturing. But I can’t rest.

I hope for better nights one day. I hope Cosentyx will be the one. After all, my husband said he felt the second biologics were try would be the one, let’s hope!

😝Not that he’s even close to being a prophet!