Viral load: full

Realized today I’ve reached maximum Corona saturation. Which means I really topped out weeks ago, but seeing as I consume information and oxygen interchangeably, I was not careful to notice when too much was too much.

They say your gut is your “second brain,” though, so after the sixth(?) day of this IBS runs, (haha! oh how we laugh!), I had to wonder what was up. (Also, Corona panickers, stop fucking hoarding toilet paper, some of us need it right now.)

But considering that since the beginning, I have not actively sought out ANY information on the shit besides the breakdown on the ages catching it and the mortality rates, I’ve still been absolutely bombarded with everything I didn’t want to know about it at every fucking turn in at least two languages on every possible platform and outlet. For months.

And today, it was Too Fucking Much.

The Norms have started panicking in earnest and I just do not have the energy left to carry one drop of water for them or their fears.

See, I don’t like to brag, but I don’t ever have the privilege of walking through the world feeling even modestly invincible — not against health systems which are not set up for patients like me, with chronic and complex needs, during the BEST of times; not against economic systems that push those health systems farther out of reach during the BEST of times; and certainly not against microscopic invaders lurking anywhere/everywhere, ready to wreak havoc in my immuno-modulated body.

Maybe it’s maybelline, or maybe it’s the lifelong complex trauma history, chronic illnesses, a good eye for patterns, chronic pain, a chemo-customized immune system, being a long way from home, going through menopause and puberty at the same time…

Maybe it’s all of it, or none of it.

But from the first mention of this novel threat (which came in addition to the annual seasonal influenza threat, against which I cannot be effectively vaccinated), the question was never really

“oh no, what if I get Corona?” or “what can I do to keep from getting Corona?”

the question was always just

“How long until I get this?” and “Will this be one I can get better from, or the one that gets me?”

I don’t have the luxury of panicking.

Anxiety is the fear of fear, and panic is anxiety turned up to 11. You don’t panic in front of a firing squad; the inevitability precludes it. You might panic when a plane experiences turbulence and bounces around, but have you ever read survivor reports about what happens when one really crashes? It’s often eerily quiet, not screamy like in the movies, because once the uncertainty vanishes, so does a certain degree of the anxiety/panic.

And it’s not just me feeling stuck between damned and doomed. I WISH it were just me, so I could take my little whiny worry and wrap it up and bury it in a hole somewhere and sit on it until this thing passes, but there are so many others in the same or worse situation. Nicer people! People with jobs, and pretty smiles, and polite children, and bright futures! People who serve their communities, in spite of pain and limitations! People who are basically the polar opposite of me in every way, except they are also more likely to catch this fucking virus for no fair reason, and it could very well kill them.

So many valuable, vulnerable people out there who, in addition to all their other lacks, also lack the luxury of panic about this new threat. They can only add it to the stack of all the old threats — maybe build a cabin one day? Or at least a nice bonfire? I’lm brng mrfmrllws, I say through a mouthful of marshmallows.

In the meantime, I’ve muted my local grouptexts #indefinitely. I’m spending more time drinking (I mean, if these are the last days, I want them to be good ones), starting now. Well, 30 minutes ago, here’s mud in your eye.

I think self-congratulatory”social media fasts” are silly, but I’ll probably log in less for a bit — those who know me IRL are welcome to reach out directly in the meantime. I’m trying to avoid the public firehose, not real people who really matter.

18 Aug 2019, CVS pharmacy, Georgia, USA. But yeah, TOTALLY ready for this threat.

Nevus Say Nevus

In which I play with gifs because I can’t draw.

Yesterday I went to a new dermatologist office.

Nurse: What brings you in today?

Me: I have this big mole on the side of my face that isn’t getting smaller, so I’d like to see about having it removed. Also wanted to ask about these skin tags around my eyes.

Nurse: Ok, we can help with that. The PA will be in shortly.

[shortly]

Disembodied voice behind me: Hi, it’s great to meet you.

Me: I hear a voice behind me but I see nothing. Is that you, god?

This office has the patient chairs face away from the exam room doors. It’s HIPPAA-approved and probably good for modesty, but who brings THAT to the doctor’s office? Plebes.

PA, appearing finally in my line of vision: What brings you in today?

Me: I have this big mole on the side of my face that I’d like to have removed. It got like 3 times bigger while I was pregnant, and they said it might go back down, but wow obviously THAT hasn’t happened so here I am [don’t say how many years don’t say how many years]

PA: Yep. Sure, we can do that. Is…that all…you want to ask about?

Me: I know a trap when I see one. Why don’t you just tell me what you’re seeing?

No matter what I point out, it’s bound to be the wrong thing. I’m a 36yo woman with weird acne behind my ears, nose blackheads big enough to break your axle if you drove through them, skin tags a plenty, allergic shiners despite the 3 allergy meds I take every day, eyebrow hairs in at least 3 colors with the propensity to get shockingly long overnight, a chickenpox scar on my cheek (well, that one I’m actually a bit fond of).

One Direction Scroll GIF - Find & Share on GIPHY

How much time have you got, PA McTeasey?

Besides, she was the elephant in the room: 7+ months pregnant, a perfect baby belly under her bold horizontal-striped top. She asked about my kids but never said *a single thing* about her own obviously impending one. And I, having taken the sacred vow to Never Assume a Pregnancy Unless I am Personally Witnessing its Exciting Conclusion, was powerless to ask.

PA: I have to tell you 3 things first. First, we have to send the tissue to the lab to biopsy, so you can have peace of mind that it’s not cancerous. And so your insurance will pay for it.

Me: A-yup.

PA: Two, there may be a small scar left afterward. It will be white and flat.

Me: Yep.

PA: I mean, anything’s better than what you’ve got, right?!

Am I Right Maya Rudolph GIF - Find & Share on GIPHY

Me: [highfiving myself in the face] Ok, so you get this. I like you.

PA: Third, it might come back.

Me: oh. I was “expecting” you to tell me you were pregnant. But yeah, fine. Slice n dice.

Approx 10 painless seconds later, it’s all done and I have a tiny bandaid over the previously nipple-sized mole. Hot damn.

PA, snapping off gloves: Ok, simple aftercare. Anything else?

Me: No. I mean, yeah! Could you make a quick recommendation about these skin tags around my eyes? My previous derm said I could just clean some scissors and snip them off, but I’m kind of afraid of poking my eye out, or cutting off my eyelid or something.

PA: THAT IS HORRIBLE ADVICE. I CAN’T BELIEVE THEY SAID THAT.

Me: weeping softly: It’s been so hard.

PA: Those are flat so we’d have to cut out all the skin under them, which, yikes! So instead, what we’d do is dip a qtip in liquid nitrogen and dab it on.

Me: Sounds…better? Approximate costs?

PA: Very low three-figures.

Me: Wow, great! I’ll schedule that on my way out!

PA: Yeeeah…just pick a Friday or something, because after we do it, you’re going to look like you were in a bar fight. Swelling, scabbing…

Me: Will you marry me? You can have our baby!

Outcome: all win.

I now have one less nipple on my face (aerodynamic win) and maybe a new scar once it heals (character win).

And someday soon, I will look like I’ve been in a bar fight (badassery win) and then have less face clutter (ultimate goal).

Happy Fun GIF by reactionseditor - Find & Share on GIPHY

I’m finally in the 1%

While the number of patients with annual [drug] spending above $50,000 was just 0.2% of patients, the amount of drugs they and their health plans or employers paid for accounted for 16% of total spending…

via Drug Costs Top $50K A Year For Half Million Americans – Forbes.

yeah…one of my drugs alone (a biologic) costs about $156,000 a year.

It comes with no guarantees. It will not cure my disease. It will not save or extend my life and in fact, carries the “rare but serious” potential side effect of taking my life.

The rest of my meds are older, cheaper generics, largely prescribed to help deal with the shame of taking a drug that, in one year, costs more than my house.

More than most of the houses in the world.

Happy MS-aversary to me? 8 years and counting

The actual day was yesterday — I started a post and babies woke up and and and…

Anyway.

Eight years ago today yesterday, I got an official diagnosis of multiple sclerosis.

I’d been having symptoms for six months prior, and doctor visits and diagnostic workups for a couple. At each blood draw, MRI, and lumbar puncture, the providers rattled off lists of differential diagnoses they hoped to rule out (brain tumor, HIV, lupus, transverse myelitis, B12 deficiency, sarcoidosis…and yeah, MS) so it wasn’t exactly a huge surprise.

A first.
A first.

The biggest surprise was that nobody ever actually said, “EJ, you have MS.” There was no tearful meeting in the doctor’s fancy office, no fat acceptance envelope in the mail, opened with shaking hands.

The doctor ticked a box on the checkout sheet, and I scheduled my next MRI and started picking a DMD to try. I went home. I went back to work.

Life went on the same as always.

Life went on completely different.

Life went on.

And that’s about the grand sum of everything I’ve learned so far.

Life goes on until it doesn’t.

Here we are today.

We’re the lucky ones, even when we forget we are.

Thanks for being here with me, today.

Today I lost a bet with myself

I’ve had a pool going for a couple of years now as to whether Georgia would first recognize gay marriage (aka “marriage”) or legalize cannabis.

With the Supreme Court likely to rule soon in favor of enforcing the former, I’m intrigued that a bill just passed to also begin the process of making way for the latter.

Georgia Gov. Nathan Deal on Friday said he would sign into law a bill that would make the Peach State the 24th state to legalize medical marijuana, continuing the rapid expansion of cannabis into the Deep South and underscoring a dramatic shift in pot politics for social conservatives in the US.

I was the only participant in my pool, so financially it’s kind of a wash. But historically? 2015 is shaping up to be a pretty interesting year.

via How ‘marijuana refugees’ brought legal cannabis to Georgia – CSMonitor.com.

Keep Your Laws Off My Body? MS Edition

I hear cannabis can really be of benefit people with neurological conditions like my own, and those fringe hippie wacko slackers over at the American Academy of Neurology agree.

I’m too sick and tired to get my hopes up, but boy, passage of a bill like this sure would restore some of my faith in our elected officials.

Well, not MY elected officials, because my candidates never win. But somebody’s elected officials, bless them.

“The science has been in for a long time, and keeping marijuana on Schedule I — with heroin and LSD — is ludicrous,” Cohen said in a statement Tuesday. “I am pleased to join with Congressman Don Young in introducing this important bill to bring the federal government in line with the science and the American people, respect states’ rights, remove the threat of federal prosecution in states with medical marijuana, and help our citizens access the treatments they need.”

via Historic Medical Marijuana Bill Gains Momentum.

Menopause affects women much longer than thoughtless scientists previously thought

Women going through menopause may have hot flashes and night sweats that last for more than seven years, according to new research that debunks long-held theories that symptoms are mostly short-lived

On the one hand, I’m glad they’ve finally gotten around to asking some Actual Women about their Actual Menopause experiences. Groundbreaking stuff! (THAT they asked, not WHAT they found out, that is.)

On the other hand, I’m (once again) Horrified That It Took This Long®.

via Hot flashes, night sweats can affect women much longer than previously thought – Chicago Tribune.

What’s in YOUR Supplements?

Schneiderman said that only 4 percent of Walmart’s supplements (“Spring Valley” brand) actually contained the ingredients listed on the label, while 18 percent did at Walgreens (“Finest Nutrition” brand), 22 percent at GNC (“Herbal Plus” brand), and 41 percent at Target stores (“Up & Up” brand). Only the GNC garlic consistently tested as advertised, according to the AG’s office.

A research letter published in JAMA Internal Medicine (free full text) a few years ago on a bunch of OTC Vitamin D supplements showed similar variability, ranging from 9% to 146% potency.

That’s the #1 reason I have accepted only prescription Vitamin D (and now B12). If it’s important enough for my doctor to recommend, then it’s important to me that I get the amount I need!

via Big Retailers Ordered to Stop Selling ‘Adulterated’ and ‘Mislabeled’ Herbal Supplements | Food Safety NewsFood Safety News.

Edited to fix opening quotation formatting that broke when posting from my phone earlier.