Migraine Babe

It’s something I have to remind myself daily, and still is something that deeply frustrates me — because I don’t feel productive. But, when you think about it, rest also makes life happen.

So if you have an energy-limiting condition like I do, remember that **rest is doing something,** we just live in a hyper-capitalist society that frowns upon an afternoon nap or siesta. So next time you put on your 2pm blinders and feel a twinge of guilt, remind yourself: rest is productive, rest makes life happen. 💓

I’ve needed low dose naltrexone for weeks.
My pharmacy has had my prescription for LDN for weeks.

I followed up with them daily. Twice daily. Now the woman greets me with a resigned sigh and says she knows who I am as I start to give my birthdate (ma’am—don’t you need that to pull up my file?).

It took ten days before I discovered the pharmacist had questions about my prescription. Several more before I learned that my specialist’s conversation with them did not answer their second question (bc that pharmacist did not ask it).

I am trapped in a Kafkaesque labyrinth of pharmaceutical telephone where every day I’m told the pharmacy will call me back and… they don’t. And so I call. And call. And I’m only able to speak to… ~Ana~.

And I get bits of information here & there, like Ana & I were so on the phone at the exact moment my specialist’s office messaged to let me know that the updated Rx had been sent in and Ana was reporting that the had received zero contact from my specialist… but he had spoken with the pharmacist twice at that point & updated the prescription!

Liar, liar Ana’s pants are on fire 🔥

Finally I took off my polite hat and put on my worked-17-years-in-fashion-gird-your-loins hat, and I told Ana that she was lying bc I was looking at a time-stamped message from my doctor’s office confirming the new rx had been sent & all details were OKd by the pharmacist. Then I told Ana that she was going to transfer me to her manager or to the accounting dept so I could pay for this medication or else I would call her every hour on the hour until I received it.

Well I paid for the medication two days ago. It’s all OOP.
They said someone would call to arrange its delivery.
No one called me back.

Now Ana can expect to hear from me on the hour of every hour until I get this prescription, then it looks like I have to find a new compounding pharmacy bc, while this one has been good to me for 3 years, no patient should have to go this long without their prescribed meds.

My pain levels are now so high I can’t sleep. I’ve returned to daily attacks. my energy is below the floor. LDN treats so many of my conditions.

Some extra special Galentines & Valentines for your ride or dies.

MyChart test results are a precarious thing.
You want answers & validation...something in writing that says yes! You're not making it up!

Stigmatized conditions like , , , , & live in a strange intersection of diagnostic criteria, confusing diagnoses of elimination, and diagnostic tests that exist on the border of absurdity, and...is this actually real?

Living with multiple complex chronic conditions is a bizarre tragicomedy, where you're gaslit into believing your symptoms are a manifestation of a cosmically large imagination & labyrinth of anxiety; then you receive a life-changing note, written as though it's for the appendix of your life (the one you've spent wading through a quicksand of ellipses & failures to launch, hoping to one day catch a break), saying that the bloodwork came back and...it's not good. For the first time in your decades-long patient tenure, the bloodwork says *something.*

Upon reading the note, you're flooded with emotions: disbelief, incredibly dark humor, denial, and that almost alien, punch-drunk feeling of hope? Because if there's a test to confirm it, maybe there's an effective treatment, finally? Psssh.

While you remain skeptical, some try to comfort you—you'll learn to live with it, this 20th diagnosis. But do they know how exhausting the onboarding process is? We must learn about every condition & how they interplay, bc our specialists & sub-specialists see us in a silo.

On top of researching the best specialist & getting a timely appt, there's onboarding: finding legit medical resources & advocacy groups, determining which materials can be trusted & which... are an MLM's playground, and then informing the rest of your care team about how this new condition will affect all that was planned for the year (surgeries, treatments, etc).

It's so much work; you're exhausted. There should be a notification system that, when you reach X diagnoses, you're automatically assigned a care manager to help with *all the things.* But instead, we're left on our own, with no other option but to carry the weight of them, all their information & management needs, & the emotional burden they carry.

It's been five months since my big ME/CFS post-exertional malaise crash, and good golly has it been a challenge.

Like so many others, one of my biggest challenges is explaining how bananas complex this condition is and how what appear to be behavioral or psychological changes are in fact due to what feels like a multi-system collapse.

Not only is the body deeply exhausted, but it's also enduring immune-system dysfunction, neurological impairments, autonomic dysfunction, and cellular dysfunction, to name just a few.

Explaining how severely my body is affected during a crash feels absolutely absurd — there are days when I'm too weak to lift my arms to type, at this moment, my eyes are so strained that I'm typing with my eyes closed (a skill I've honed over the past however many months). A walk around the block may result in a sore throat and voice loss, even when I stay within my energy envelope.

Things and activities that seem perfectly harmless may provoke a crash that can linger for months.

We all get asked the absurd questions of *have you tried,* or *what about XYZ*... but they feel particularly bizarre when fighting to simply brush our teeth. So here's a little ditty addressing that. Save what you want and share a slide or two with the person who asks the absurd questions. Let them know what you're really up against.

Because we're all behind closed doors, sitting in the dark, fighting to be seen.

And as a reminder, if you've had multiple covid infections, be aware that ME can be a risk. Take the necessary precautions. Use hepa filters, open windows, wear a mask — a mask is so not a big deal compared to the deep isolation experienced when stuck in a crash lasting for months (or even years) on end.

My sleep hygiene is impeccable.
My body is not.

Does anyone else feel like their body gets in the way of completing everything they want to do? Somehow, I start getting ready for bed at 9:30 and end up going to sleep at 11:45. And these are the reasons why. 🫩