A Very Bad No Good Terrible Day With Ehlers Danlos

I don’t often feel like this. I work hard at staying on the uptick but here’s the thing, for the last week I had only a few days out of bed. Today I found out my hand bone is sinking below my wrist and in physical therapy I managed to pop out four joints some that had just been relocated. I put on red lipstick today. When I put on red lipstick shit is getting real. My aesthetic leans more to wow you look great you brushed your hair. Is that a new sweatshirt you’re wearing? Are those the fancy Birkenstock’s. If I have redlipstick on I am trying. 

I am a bit heartbroken today. I have seen hand surgeons and rib surgeons. Each of them shrugs. I keep hoping there must be someone who can do something. It is a level of optimism even I feel silly with and I don’t often let myself think about possibilities. I use my energy to accept what has not been able to be changed.  

This last fl;are has leveled me. Spirit and body. I want a fucking chance at breathing without my rib flying. I want to go to see my daughter at her practice today. I want to energy to debate with my son. I am so very sad today. I am scared of hope but I really want it today. It seems as if the idea of decades like this is so VERY tiring. I want better. 

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