On Monday, yesterday, I mercifully had an appointment with my amazing pain therapist, Dr. Mac. She’s a professor and works with neurology patients who are dealing with chronic pain and also does biofeedback and relaxation. I have felt extremely lucky to have her in my corner, and when I explained through my tears what happened on Friday she was absolutely horrified. She told me I’d been through a terrible trauma, that it could never be repeated, and encouraged me to report what happened to the Neurology Dept immediately. She explained that other patients she shares with Dr T were allowed to have strong narcotic medications, as long as there was someone to act as a “gatekeeper” for them. She was most alarmed by the suicidal ideation I’d had during the headache, how I’d been treated the second time in the ER, and what I’d have done if I hadn’t found the pills which eventually made me better. We were also both intrigued by the fact that the oxygen had worked, and she thought maybe I had some aspects of cluster headaches and that maybe I could get oxygen for home use as well. We did some relaxation and biofeedback, during which I was able to raise my hand temp 11 degrees, and when I left there I felt so much better. I assured her I would go right up to Neurology and talk to them. If she had not suggested I do so, I wouldn’t have thought of it.

I went upstairs and waited to speak to the busy receptionist in Neurology. Even she was incredibly kind, typed what I had to say into my file, and then, when she couldn’t find a sooner appointment to give me (my scheduled one was in August), she insisted I wait until she could find someone to talk to about it.

I sat out in the hallway and soon heard a familiar, reassuring voice. “Hi, oh, I’m so sorry!” N said, one of the nurses who ran the Chronic Pain class I took. I stood and she hugged me and I got weepy again, and I realized that THIS was the care I’d needed when I had told Dr P the truth about how much medication it was taking to break my worst headaches. Ever since he threw me out of his office that day, I’d felt deep down like maybe he was right. After all, didn’t Dr. T agree that I would do better without all the narcotics? But what about the fact that I sometimes NEED them to get rid of my pain? Apparently this was now going to be addressed.

N took careful notes and passed no judgement at all when I explained my less-than-legal use of the Norco. She agreed with Dr Mac that maybe I could get some oxygen for home use as well as narcotics for emergencies, if my Mom would be willing to keep them for me (both Dr Mac and N agreed J would not be the best person for that job due to his PTSD and wanting to make me “happy”). N said she wanted me to see C (the headache nurse coordinator and Dr T’s assistant) as soon as possible, and she’d give me a call. She did, and I now have an appt with C tomorrow morning, which Mom is going to with me.

Today I learned that my SSI payments are continuing to be delayed. At the suggestion of some Facebook friends I contacted a few local politicians to help, and received immediate responses. Maybe I’ll start receiving my payments sooner rather than later after all!

“I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything…”

I plan to roar from now on.


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