Confusion & Worry.

What do you do when your chronic illness provider is world renowned, but doesn’t give you the kind of care you feel you deserve? What do you do when your pain diary doesn’t show the improvement you are supposed to be seeing? What do you do when you are told at two separate appointments that the goal is to get pain under control by the time your 5 and 9 year old daughters are teenagers (at which time they won’t need you nearly as much)? What do you do when control of your pain is taken out of your hands, and then you’re told your treatment is “up to you, and God”? And you’re an atheist?

Tomorrow, I am going against my neurologist’s wishes in seeking narcotic pain killers to deal with some of the headaches I’ve been getting daily for five years, almost daily for thirty. She was always fine with me having them before, until they were cut off by another doctor and she said I’d already done the “hard work” and that was it, done. Since then I have gone to the ER seven times, had forty days completely confined to bed, and experienced the worst headache I have ever had in my life. After that suicide headache I got an emergency appointment with my neurologist’s assistant, who again denied the additional medicine that would make me feel safe, despite the recommendation of my pain therapist. And pulled that God thing.

I talked to my GP and my pain therapist, again. My GP referred me to a pain management clinic she trusts, and my pain therapist supported my decision. Still, I’m terrified. I am terrified it won’t go well, and I’m terrified to cross Dr T and C. I feel like everything depends on this. And I feel like it’s a betrayal, even though I am fighting for my own well-being.

I am supposed to take all my prescriptions in their original containers:

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