So, things are bad and scary. I still have hope.

Yesterday I didn’t get out of bed.

After surviving the roller coaster of my aneurysm-that-wasn’t; seeing that I’m now down to two Imitrex tablets with no chance for refill; learning that my hospital has implemented a strict no narcotics policy after ten years of mostly kind and gentle last-resort care; and realizing I really can’t send so open and forthcoming a letter to a former neurologist I’d like to see again even though she’s almost 5 hours away…. all that took its toll. All within 2-3 weeks. And other things too, like Dr Mahmood saying he expected me to get erenumab from MHNI when it’s released, when I was never even a patient there, just a number in their research department. Finding out X has cough variant asthma and both options for daily meds can cause psychosis and suicide in kids. Contracting the flu. I could go on, but it’s exhausting to even write about, and I’m sure it is just as tiring to read it. So yesterday I hibernated. I cocooned. I rebuilt my spirit. I slept and slept.

Because all those seemingly bad things have happened, I refuse to believe that, despite all the changes to narcotics regulations in Ohio for 2018, anything will go wrong at my appointment with Dr Mitzi today. I couldn’t possibly be left THAT high and dry SOL by a universe that by all accounts seems to smile upon me most of the time. I can’t lose my OTHER necessary pain relief method now, it just can’t happen. And it won’t.

Here’s why. Pain management offices are the best equipped to handle the increasing demands of a terrified, placing-blame-in-the-wrong-place government. They have all the necessary mechanisms set already; it is all they do. Last month, Dr Mitzi was ill and they managed to coordinate every one of us going to her husband’s office to pick up our prescriptions. And even after that, I got a call from the nurse about the new prior authorization rule. She asked in a very calm, business-like manner what my new insurance was so she could take care of it for me. When I explained I had simply paid out of pocket when told I needed a prior auth, she said, “Okay, we’ll get it for next time.” And that’s the thing, if something does still fall through with the prior auth, my medicine is affordable without insurance.

Besides that, I now have additional pain going on other than migraine, which is a rather slippery illness to prescribe for. I have neuropathy on the left side which feels like constant, cold sunburn, and I have testing paperwork to show I’m taking it seriously. I am seeing a specialist in April about my mysterious NSAIDs-induced gastritis, which was never properly diagnosed. I’m in the process of returning to pain therapy / biofeedback AND have a promising lead on a new neurologist even if she is far away. I know people with migraine who are happy traveling farther than that for a good neurologist, because good headache docs are very hard to find.

Only the people closest to me know about my rose quartz… thing. It’s the reason I call myself a “magical” atheist. Right, I don’t believe in a white bearded old man in the sky, but I do know for sure a large chunk of light pink mineral appeared on the outside sill of my locked 4th floor dorm room window, the one facing the Hocking River, during a blizzard in 1993. And I know that I learned what it was and surrounded myself with it from then on, and my first email address was “rosequartz@wcnet.org,” and two months after I started working at the coffee shop, in 1997, an interesting man walked in and asked if he could write me a poem, so of course I said yes, and after a few minutes of scribbling with multicolored pens he handed me this:

And I never saw him again.

And 6 years almost to the day after that blizzard I gave John a polished rose quartz stone when he was having some issues about a month before we were a couple, which he had wire-wrapped and always wore around his neck on a long black cord, and a short 26 months later we were married.

Now, my daughter’s favorite beautiful show “Steven Universe,” in which she sees herself represented because LOVE is shown as fusions between “non-binary space rocks” that all use female forms and pronouns, has at its center a powerful leader of a human-protecting rebellion, very Princess Leia, and her name is Rose Quartz. Despite my Wiccan friend Tavia referring to rose quartz almost dismissively as “the pink fuzzy bunny stone” when she was instructing me in crystal lore, in “Steven Universe,” Rose Quartz is all-powerful. Rose Quartz believes in love and goodness. Rose Quartz gave up her physical form to create her half-human son, and could make objects sentient, and had healing tears much like Dumbledore’s Fawkes the pheasant, and could even use them to bring dead living things back to life, though they will glow forever pink and have hair magic. Rose Quartz fell in love with a human musician, an aimless confused long-haired dude in a one-man band.

It was a bit controversial. Kind of like a tattooed, pierced, migraine-infused 25 year old who had been around the block a few times with her new 18 year old, about to graduate from high school, artist / musician boyfriend.

So I do feel sort of protected by the universe. I do feel that every little thing is gonna be alright. I believe that my appointment today is going to go great, and my headache threshold will continue to stay lower, and that Dr. Dafer will agree to see me, and that when erenumab is released I will have access to it, and we either will or won’t discover the cause of the neuropathy but who cares, and that X will be okay without daily asthma medication, and that eventually we will pay down our debts and live more comfortably, and that life will go on and on and on and on, even if Trump stays in office.

I believe in the universe.

I believe in rose quartz.

I believe in February thunderstorms.

I believe in Dr. Mitzi, Dr Coates, Dr. McGrady, Dr. Coulturi, and Dr. Dafer as my (eventual) new health care team.

I believe in the Roberts-Zibbels.

I believe in myself.

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2 Comments Add yours

  1. spinster patty says:

    Love this post! So glad I found your blog. I can really relate to much of what you have written!

    1. Yay! It makes me very happy to hear that! You can read my more formal articles on migraine.com too. By the way, my appointment did go great! Thanks so much for reading 💜

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