Still waiting. I see some movement on my app. Things that were approved in the background and calls to medical aid from a specialized pharmacy my current rheumy uses. A pharmacy I signed consent for to distribute the Cosentyx. So I’m hoping they will email me with good news soon! Pretty please.
Today… When you think you can’t feel worse and still survive, you do. You keep breathing, despite. You move even though your bones feel like they will split. Somehow, you keep living.
I was so excited reading of other women’s struggles with showering. Fatigue overwhelms us and we do it through sheer force. Some don’t shower daily. And others go shower only when the husband tells them they’re becoming a bit stinky. I’ve never reached the “Nope, not this week” stage, but there have been days I’ve wished I could just turn the water off without putting soap on face cloth. Or mornings I am even more tired than when I got out of bed- more tired half way through my shower than before I got up. I’m so relieved to know it’s not just me.
The one person who commented that she USED to feel like this is someone who has found the right biologic for her needs. Will I ever find one?
I was also grateful to read that many of us struggle with tight clothing. Or clothing that is skin tight. Like leggings, bras, waistbands… I prefer dresses over skirts because of that. It feels like my skin is being pressed hard. Like my clothing is painfully tight. Knowing others also prefer to be naked in summer (Well, not also because I don’t ever stay naked!), are looking for comfy bras for when out in public… Winter is hard with its need for layers. Will see. Maybe look for long long hoodie tops that are as long as long dresses, and wear tracksuits under them, instead of leggings, or track pants with skirts and petticoats. Way before my diagnosis I bought one top fromTruworths which was advertised as long but it only reached my knees. I know. Boring if you’re not living this discomfort! Sorry!
But again, I’m thankful. If we can’t even shower how am I teaching and smiling and planning and printing?? How am I making things happen every single day without collapsing from the sheer mental strain of keeping my body moving when it only wants to rest?
I wish I could share my suffering with my family. They’d really appreciate every grain of rice, every veggie burger if they knew how much effort it took.😅
But, I can’t! So, if you’re friends with an AS warrior and they never seem to want to go out, this could be why. Terribly painful bones, and/or a body that wants to collapse and feels like it’s carrying the weight of the world.
They said I should write a book 