Very difficult month

My health issues make everything so much worse, and easy concept to think you understand from the outside but very hard to really know the implications.

But most people think I really do just have a jolly time sitting here every day sewing and gaming and that’s really not my life.

Every time I point out I can’t work due to my disease they say “oh so that gives you time for your hobbies.” No. I spend that time doing normal tasks such as showing and making meals. Every thing I do comes at a cost, and I have to balance my future self with my current.

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Unfortunately most people, even people with another form of arthritis have no clue why this xray is so bad. This damage is classic to Rheumatoid. You will not deal with this if you have sore hands, or if you have osteo. If you have RA, I am so sorry but eventually you may have to deal with this. If you are in your early days of treatment please please make sure you have someone to advocate and push for the treatment that works for you. This is irreversible, and once started cannot be stopped. That’s bone gone not cartilage.  In fact it looks like some fusing is happening too.

Anyway, This mangled mess has not yet caused joint deformities in my fingers but my fingers are very fragile. I am facing having my main hand out of function fully because I have tendon damage that requires the tendon to be partially excised. Given fingers are a carefully balanced set of tendon powered spindles this will cause distortion and will start the joint deformations that I have so carefully avoided. I can feel my tendons pulling from just below the nail bed, I have to type with the outsides of my fingers just so I can slow that damage down. I can’t write any more (even my signature can be difficult) nor can I sketch.

So I can’t just make stuff, I have a vast amount of ability but my body holds me back from being able to express it. But that means I need to be very careful. And I need people to understand that what they see as an inconvenience is actually a huge amount of struggle to the point of me often missing out on opportunities. And I do still try which winds up with me incapacitated, with even more unfinished projects and those projects wind up never worn or finished due to the emotional battles they feel imbued with.

Needless to say I’m also mourning and my entire body is burning and aching, and I am having difficulty sleeping and other fun semi related things.

I am unable to bounce back right now. I am in trying to get through a day of needed tasks let alone anything else.