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I'm learning, really embodying, what it means to trust the process (a mantra I use with my students).

If you’ve been following my posts, you know that beginning on January 7th, my PCP let me know that the Kaiser pharmacy was now creating too many obstacles due to my prescription of both Methadone and Oxycodone for my severe chronic pain.

The prescription for Methadone came about following my appointment with a neurologist down at Kaiser in San Francisco. This was two years ago, decades into my progressive autoimmune disease.

That doctor, he did ask me how I felt about the stigma of taking Methadone. At the time, I thought he meant if I had any stigma that would get in the way. No, I just needed the best treatment. He’d had experience treating patients with a similar combination of conditions as mine. His exam was thorough, and he really did listen to me. He did come off as a little too self-assured that he could help me, but I have to trust the process.

Leading up to that appointment in SF, I’d had a prescription for Norco, 4 5mg pills six hours apart. The neurologist thought I would be better off with the Methadone, 2 5mg pills every 12 hours. I took that advice.

Back home, within just a day or so, my flaring was out of control again. This was not an occasional thing, but it never ever got/gets easier. When I’m at a ten, I do not go to the ER. The notion of suffering while waiting—I’ve been there; I can’t go to there.

I emailed the neurologist, but soon learned that he was not really part of my healthcare team, that I couldn’t rely on him for follow up care, communication, or to expect him to work with me as an individual, as a human and not a standard. Which is crazy, considering there is no standard of symptoms, nor of treatment, for the combination of conditions I suffer.

Soon, I also learned that the stigma was not on my end: pharmacists—they’re the ones I’d have to contend with.

For what feels like the majority of my adult life, at home, in private, only Paul and my cats as my witness, I’ve suffered at a ten for 24, 48, who knows how many hours, too often. I do have PTSD from it as I live it; it feeds itself. When I’m in that torture chamber, all I can do is seek some relief in cold water, anything to quell the sensations of my skin burning off as though I’m being drowned in a chemical/acid, unrelenting. My loves there, helping me find my way through.

That week two years ago, following starting the Methadone, I began emailing then having a few phone calls with my PCP, finally getting my situation clearly across. He understood that I knew what I needed: the Methadone can work on baseline pain (my hands and feet are like wounds that never heal), then, what I needed was an add on. He agreed to Norco, 3 pills in a 24-hour period for flaring not controlled by the Methadone, which it never was, at least not after about 4pm.

I was good with that. That combination allowed me to disrupt the flaring and keep it from progressing from an 8, a regular occurrence, to a 10, which leads me to not want to live. I could sleep.

However, the Kaiser pharmacy was not thrilled: time and again, creating barriers, causing me more stress and flare ups.

So, finally, this last January 7th, we made the switch, taking me off the Methadone and adding one more Oxycodone, making that 4 5mg pills in 24 hours.

What a horror show! Neither my doctor nor I had any idea what I was in for, apparently.

Turns out, that move meant a sudden reduction of the morphine I had been getting by 1/2, launching me into withdrawals and a massive flare. Sleepless, anxiety ridden, tortured. What a month!

Last Friday, I had my in-person follow up with my PCP. For all that I went through, truly, I am so grateful for him. He listened, we brainstormed. I was forthcoming about my confusion for how to schedule my meds, for taking 3 sometimes at once, still not sleeping, not knowing how to move forward.

Together, we developed a new plan. He explained that the 1 every six hours norm comes from older research. While it does apply to the notion of “staying ahead of the pain,’ it doesn’t necessarily work that way for chronic pain. For sure, it doesn’t work for mine.

So, now, under his supervision, as well as my Pain Management specialist’s, my prescription is much more tailored to my needs. I’m still on less morphine than when on both the Methadone and Oxycodone. Now, though, I am not restricted to a schedule that makes no sense for me, for what I go through.

On Friday, I started my new schedule, which includes taking 10mg at a time in a 24 hour period, focusing on evenings through nighttime, when my pain regularly becomes unmanageable. And, yes, I’m sleeping! It’s not perfect—but nothing ever is or will be.

I still and will continue to struggle, but just being able to disrupt that daily/nightly flaring cycle means I can do this. I can sleep, and, already, I’m feeling more myself again.

Last Friday, the day of my appointment, my feet and ankles were so swollen! When I have to go out and be out for several hours, I know I’m in for it. And after a month of the constant hard core flaring, even my blood pressure, which is always low, was high!

And that blister, that’s one of many chilblains. Not from friction on my skin; from blood vessel spasming, blistering from the inside out.

Thankfully, I can now see my ankles again, my feet—still outrageous—looking more human than elephant.

I’m just grateful, for what I have, for being able now to relax and snuggle. That’s the medicine.

Speaking of: River’s personality and activity have bounced back! She’s all healed from having oral surgery. Now we realize, it’s been months of her being in chronic pain. She’d stopped playing fetch more than 2-3 throws, stopped being as snuggly with us; though still into us, we had to beg her for it. We thought maybe it was just aging, but she’s back, fetching and wanting all the human affection. Poor baby.

Thank you for reading and being here for all the details. I appreciate being able to document my experiences and express myself in this public space that feels safe.

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I will be participating in the event below! Save the date. I don’t get out often, and I would LOVE to see you!

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Want more of Eve’s writing and Paul Imagine’s drawings? You can get my book: Body in Script, available at many online retailers.

You can find it at my publisher’s bookstore, or other places, like Amazon. Or, chat with me here. If you’re local, come get one from me personally. I would love that!

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