RA never stops surprising me. I'm used to pain in many areas, and variable pain at that. Yesterday, though, sharp and continuous pains inhabited the place where tendons and ligaments attach to bone in my legs, above and below the knee. Felt like broken bones. Like someone cracked me a good one with a baseball bat about four inches above both knees. Like the legs would give out upon taking a step. There was one point where I was walking in my kitchen to let the dog in and the pain was so intense in both legs that they almost stopped walking on their own -- I had to logically think about moving my left leg then my right as automatic movement was being denied. Not sure what that is all about. Must be nerve related or just the body's defense against pain. Anyway, I stood there for a minute trying to figure out where I left my canes and realizing no cane in this earth will hold my weight anyway. Then I thought about sitting, then thought better of it because then I would have to get up again (hips are unhappy, too.) So, as Toby banged on the door to come in from the rainy outside, I slowly gimped to the door, leaning on chairs and tables and taking micro steps. Just ridiculous. I write all this not to garner sympathy (please no!) but to explain what it is like to deal with this stuff. I know I was not aware of the severity of the disease even though my Dad lived with it or something close to it. He never complained. I'm a big mouth!
So the day progressed, with pain levels climbing and the onset also of multiple Raynaud's attacks in my hands, feet, and breasts...yup, breasts. Yikes!) I bundled up like an elderly lady and took lots of breaks to listen to cool audio books -- completed "Dead Mountain" about the horrific and unexplained deaths of a group of experienced hikers in the Ural mountains in the 1950's, and almost completed "Helmet for my Pillow" by Robert Leckie, who was a young Marine stationed on Guadalcanal during the early part of the second world world war. Nice positive reading to put things in perspective! Things went from bad to worse and by 7pm I was praying it would get dark enough outside to put the birds to bed and call it a day. Finally did so at 8.
When I went to get my night pills, I suddenly remembered something -- I hadn't taken any of my morning medication, besides the pain med and tylenol. Whaaaaaa? No prednisone? When on a hefty dose of the junk the body Is Not Happy when it doesn't get its daily fix. How and why I remembered at 8pm is baffling to me, but at least I can understand why the pain was so bad. Pred reduces inflammation and "masks" disease activity. I went from a high dose to zippo, and after being on the stuff for so long my body no longer makes its own, and relies on it. That explains the sluggishness, swelling, pain, etc. pretty well. As I've written here, I've been trying to taper down to a better dose recently (shooting for 5mg or less, as I've been on 15mg for years now to stay functional and keep working.) Going from a high dose to nothing can induce shock and other serious symptoms. Several days without the chemical can induce severe reactions, including coma.
So, yesterday was a glimpse of what life might be like without this wonderful, horrible drug. No thank you! If it shortens my life to stay on it, which is usually the case, I'll take it. Yesterday was a challenge I hope not to repeat. This morning I got up at regular time for school to get back on a schedule and routine that will let me get more done each day. If I sleep in, it hurts the body too much. I've set a permanent reminder on my phone about taking prednisone so that never happens again. So today's post is a combo whine and a slice of RA life, be it what it may. Hoping today is different and that art happens under my roof. The end!!
What will you make today? Don't forget your meds!!