Allodynia

Another wonderfully cruel symptom of Fibromyalgia. Everything hurts. Brushing my hair, wearing clothes, breathing. Showering is torture. Bending to tie my shoe is agony. It sucks. And there’s no treatment. #ChronicPain #ChronicLife #StopTheStigma #LearnTheFacts

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True American Horror Story

So. I woke up depressed, teary, terrified, questioning everything I thought I knew. In addition to my usual chronic migraine pain and body aches, I now had to figure out how to go on from here. I didn’t want to get out of bed. My bed is my safe place. Always has been. Always will be. I can temporarily hide from reality. But only for awhile. Life goes on. It’s my only choice. Get up and deal with the situation the best way I can. So I got up, had coffee, turned on the TV, picked up my tablet, and it hit me. From every direction. This is real. This is reality. No do-overs. No going back in time to just yesterday, when things were manageable. When things made sense to me. When I had trust and faith in my country and it’s people. 

I did what I could. I voted. I shared facts and opinions with friends and followers. I truly believed that we as a people would make the right choice. In my opinion, the only choice. The SANE choice. The choice that would allow me to be sure that my rights wouldn’t be trampled on and taken away. That my disability benefits wouldn’t disappear. That I wouldn’t lose my affordable medical insurance that I so badly need. That everything I had grown up believing in wouldn’t be crushed under a hate-filled, bigoted, racist, fear-mongering heel. 

I sincerely don’t know where to go from here. I’m scared to leave my house. I’m scared of the blatant hatred, antisemitism, and fear that this decision has made a matter of fact. I feel lost, unsure, unstable, beaten, and defeated. This has rocked my entire existence to its core. I don’t know what to think. My future? Do I have one? Will I lose everything that I took for granted just yesterday? Can I push past my fear and go on? Honestly, right now, I don’t even know. Very hard to carry on at this time. 

Acceptance 

So. November already. Time flies when you spend much of it in pain and/or trying to sleep to forget pain. I was so relieved when I was finally (after a long, stress-filled fight) approved for Disability benefits. But I hadn’t thought that far ahead in the whole scheme of things. Disabled. I was officially qualified as disabled. The Judge ruled me as “Totally and Permanently Disabled.” What the hell?! The last three plus years of doctors, tests, diagnoses, treatments, medications, depression, anxiety, and stress hadn’t adequately prepared me for the final outcome. A label. A stigma. An end? I felt like a different person from that day forward. I was immensely relieved for the financial support, but devastated at the reason for it. This was one year ago. I’ve learned a lot since then. With the help of a wonderful pain management doctor and a stellar psychologist, I’ve begun to put things into perspective. No, I’m not the same person as I was before these illnesses took over my life. No, I can’t do a lot of the things that I used to take for granted. But I’m still me. I still matter. I have a good life, a home, the most supportive, strong, loving Mother in the world, my emotional support furbaby, some close friends, and hope. Hope for a better tomorrow. New treatment, medication, possibly even a cure someday. And as long as I have these crucial components in my life, I’ll always keep fighting! Better days ahead my friends! Carry on! 💜