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.

Angels Unawares

I spent the morning doing the math. In sum, i spend about 80% of my time wishing I weren’t wishing I were dead. As you can imagine, one doesn’t get much concrete proof of productivity from such endeavors, despite the long hours and dedicated vision.

It just doesn’t translate. It’s hard to sell at cocktail parties. It’s easy to feel invisible.

On a Monday morning when everybody woke up crying, when I’m loading the boys into back into the car after a 1.5-hour driving nap and a trip to Aldi, in the middle of a scorching grocery parking lot on a 90º day, and a lady twice my age offers to take my shopping cart back, and I decline, since I haven’t even been able to unload the bags out yet (babies first, with air conditioning, always), and she says “Don’t worry, I’ll wait,” and she means it.

And when I say “thank you so much, that’s so kind of you to do,” and she says, “You’re doing such a great job. I’m just amazed you’re getting out to the grocery store. It’s the hardest job in the world. You do what you have to do, right? You’re such a good mom.”

That’s when I cry. Instant, ugly cry. And throw two giant bags of groceries in the back of the van, and push my cart into hers. She wouldn’t even keep my quarter. She gave me a hug.

After I blew my nose, and changed the other baby’s diaper, and put him in the carseat, and looked up to thank her again, she and her big white SUV were gone.

She might be a grandma in a handicap parking space, but man, she travels light and fast.

This is not the first time a random-act-of-kindness-lady has made me cry in a parking lot.

Not even the first time in the last 6 months.

On the one hand, that’s just fucking mortifying. But on the other hand, I got a grandma hug out of the deal, and something else to think about for a while.

Moms are legion, and they are awesome. I can’t wait to get my shit together enough to represent.

2 large shopping bags full of Aldi brand products
concrete proof of productivity

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.

It’s no wonder mothers are tired

“That which is to give light must endure burning.” — Viktor Frankl

“That which is to give life must endure burning out.” — me

As I’ve repeatedly tried to explain to my wife, I’m tired — but not the kind that a good night’s sleep would fix right up.

For starters, I’ve had MS for 8 years now. I’m no stranger to fatigue. 136_image

There’s the muscle fatigue, where repeated movements make me weaker, not stronger. There’s also the overall sense of waking up drained of all energy, of living on a planet with 10x the gravity of earth, best described as lassitude.

And of course there’s the fatigue of “managing” a chronic illness — which really means running herd on your medical team, your insurance company, emerging science, pharmaceutical advances, public policy, fundraising, and the shreds of your family and social and sex lives — day after day after goddamn day, forever and ever, amen.

So me and tired go way back, and I work hard every day to fight it back and haul my aching ass off the couch, to keep participating in life.

But a couple of years ago, I participated in MAKING LIFE, and discovered a whole slew of new ways to be tired.Twin ultrasound at six weeks gestation

We live in a society that loooves to tell women how to live; indeed, entire fetishistic industries and economies depend on it [and should die quick and painful deaths, but that’s another post for another day].

So when a woman becomes pregnant? Those omnipresent, authoritative, prescriptive voices double down, coming out of the woodwork to tell her the best, or at least the newest, ways to “manage” a pregnancy.

Do this, don’t do that! Eat this, don’t eat that! This is how you should sleep, dress, shop, and clean and work and screw. Or not – maybe it’s this other way! Nobody’s ever tested this advice! Do as we say!

A week after our first positive pregnancy test, Jezebel ran “How to Have the Best Pregnancy Ever,” a masterpiece that neatly sums up the conflicting cacophony. Dare anyone to read it and not feel like you need a nap afterward. Or a stiff drink, but that would kill your baby, unless it’s actually totally fine…

Now, read it again, with the sober understanding that not 1, not 2, but 3 lives hang in the balance of your every decision. The clock is ticking. Cells are dividing. Tiny organs are forming (or not! dear god). You’ve never done this before. You won’t get any do-overs. It’s all on you. I bet now you feel like you need a nap yet can never sleep again, lest you fall down on this all-important job that everybody but you seems to know how to do.

If you’re newly pregnant, this is the time to curl into the fetal position — while you still can.

In fields like medicine, the defense against this din is called alert fatigue. When providers receive too many computerized alerts (about drug interactions, say), or conflicting alerts that don’t take into account the specific nuances and contexts of individualized patient care, the providers start tuning out the alerts. They become indifferent, override it, close the window, click the X.

And they are likely to start ignoring all alerts, even ones that might be helpful or lifesaving.

Wheat and chaff. Signal and noise. Baby and bathwater.

Day after day after day.

It’s no wonder mothers are tired.

Tune in next week eventually for a look at the types of fatigue that show up once the babies are actually born! That’s right — there’s more!

Questions I have for other patients (NHBPM 19)

Questions I have for other patients:

1. Before your experience of acquired disability, did you know that  disability is not a neat duality? I was surprised to find it’s not black/white or on/off or able/disabled. (Same goes for continence. Oi.)

2. Did your doctor encourage you try using mobility aids, or did you have to figure it out yourself?

3. Also, assuming you have periodic check-ups with your neurologist, how do you communicate to your doctor about the totality of your experience living with MS? I wrestle with knowing that what they see of me on any given day may not at all represent my day-to-day health or ability.

4. Am I the only one to figure out that the mental components of your coping toolbox are as important, or even more important than, the physical resources you bring to the fight?

5. Do you find the “help us find a cure!” and “let’s all cure it” and “fund a cure!” messages really stilted and distasteful, especially when it’s coming from the major national organizations dedicated to your disease? Research is important, of course.

But what about things we can change or improve now to make life easier for people with a disease that may or may not ever be curable, things like more flexible work schedules, more telecommuting, more accessible housing, medical cannabis, better public transportation, more cohousing options for adults and families, etc etc etc? A cure for MS would only benefit people with MS, whereas systematic social and infrastructure changes could benefit everybody!

6. In magazines and on websites for people with MS, have you also noticed the mismatch between the moderate-to-high level of disability depicted in images and topics related to living with MS versus the happy words used to flog a hopeful, positive prognosis? It makes me suspicious that they know something they’re not telling me.

7. For those of you whose blog is based around your condition, how in the world do you keep it up?! This 30 day streak is wearing on me, and I get the feeling I may never write  about MS again once it’s over. (“It” = the 30 day streak, not the MS; see notes on “cure” above.)

What questions do you have for patients with MS, or any other chronic illness? Ask away, and I’ll do my best to share, find, or make up an answer.

Disclosure (NHBPM 4)

It’s common for people living with chronic (and often, invisible) health conditions to wonder about disclosing the facts of their illness and its impacts on their lives. When, and how, do you tell somebody you’re dating? Or your boss? Or the bag boy at the grocery store?

Fortunately, there is one simple answer that applies to every situation:

It depends.

ha ha! A sick joke! I said it was simple, not easy.

The Case for Disclosing

You getting diagnosed with an incurable disease falls into the category of  something your closest friends and family would be hurt NOT to know about. Better yet, they’re unlikely to use your diseased state against you. Tell them all.

For that matter, everyone who’s ever met you would probably want the chance to wish you well. Give them that chance.

Even if you’re not particularly religious, if you live in a red state, lots of folks around you probably are. You’d practically be doing them a favor by giving them a reason to pray for you. Spread the gospel.

If you need accommodations to keep doing your job, you’ll have to tell the boss. And you should do so before your performance suffers. Tell early and often.

Shrek says, “Better out than in.” He was probably talking about news of your condition! Get the word out.

When you’re thanking The Academy for that Oscar you’ve just been awarded, it’d be really awesome to thank your neurologist along with Jesus and Mom and the director. They like you. They really like you!

The Case for Not Disclosing

Telling somebody about your situation is like ringing a bell that can’t be unrung. No take backs.

You didn’t tell your mom about all those things you did in college or that speeding ticket or that perm. Why make her worry now?

If you can keep doing your job without accommodations, why muddy the waters by telling your boss? Just keep working.

As for your colleagues, anything you tell them stands a chance of ending up in the boss’ ear. Best keep mum.

If you just want to make conversation, do everyone a favor and read a book, or see a movie, or rob a bank, and tell us about that instead. Conversation killer.

Need a chair or a large-print menu? Try requesting assistance or favors without offering any explanation at all. You may be surprised at how often you can get what you want/need without offering a backstory. Please and thank you.

Theory and Practice

At one time or another, my experience disclosing has been a mix of all of the above. I have generally preferred to err on the side of waiting too long to tell, because I am all too aware of the “no take backs” danger. And let’s be honest — telling anybody that you have a chronic/degenerative/incurable/hard to treat/painful disease is like dropping the world’s biggest lead turd into a conversation. Why rush it along?

It also took time for me to integrate being sick into my self concept, and to get comfortable enough with it that I could mention it when appropriate. Remember that feeling of being a really self-conscious pubescent in a traitorous body? (Nobody? That was just me?) Well, the early days with MS felt sort of self-conscious like that, and I was in no hurry to point it out to anyone.

I don’t know about this…but I’d like to. (NHBPM 3)

Maybe I read too many Nancy Drew and English manor house mysteries growing up, or watched too many X-Files. Don’t judge — my little sister had a thing for Mulder, and I had a thing for dark.

I’m a curious sort of girl. Asking and answering questions is my favorite thing to do. I am rarely happier than when I don’t know something, because that means…drumroll, anticipatory salivation, happy dancing…I get to go find out.

That’s why even after swearing upside down and sideways that I would never, EVER, go back to school, I ended up getting a degree in library and information studies. (Thanks, Daddy! I promise this blogging thing is just a lark!) Getting trained as a librarian was as close as I could get to being a professional searcher, without having to carry a gun and eat in my car like a private investigator.

It’s also why I love thrift shopping. Not only do you get a strange mix of eras and objects to sift through, you get mystery items  missing their original packaging. I had a lady awhile back turn to me in the kitchen stuff aisle and hold up one of these that she found in the utensil bin:

“Do you what THIS is?!” she asked.

“I believe it’s a shedding blade.”

“A what now?”

“It’s a tool for grooming dogs with thick coats. But you could probably run it through the dishwasher and use it to de-seed a cantaloupe.”

I try to be helpful. I”m sure she meant to thank me before running away.

Now, have I ever bought, touched, or used a shedding blade? No.

Have I ever said the words “shedding blade” out loud? Nope.

But could I piece the cultural detritus in my head together for the win? Yes. And failing that, could I have used my iphone to figure it out? For sure.

“I don’t know about this, but I’d like to” is something I feel or say or think at least 20 times a day. The internet has been the perfect vehicle to feed my addiction curiosity. When I have a health question, I can hit MedlinePlus or PubMed or MayoClinic or a million other sites. I have a steady stream of MS-related abstracts and news delivered via RSS right into my google reader and twitter stream. I correctly diagnose my friends and family so often that I usually end our phone conversations with, “I’ll send you my bill.”

family_med_guide

Even before the internet, I was the kid with her own reference library. (Thanks, grandmothers and yard sales!) I loved reading the front matter of the phone book and going through the trash at the post office. Flipping through almanacs and atlases was a perfectly reasonable way to spend an afternoon.

But my all-time favorite lookbook was The American Medical Association’s Family Medical Guide, whichever edition was published in the early 1980s. I would pull out that fat navy volume and just browse. There were the usual anatomical illustrations that any pre-pubescent kid would find stare-worthy. Lots of basic first aid information, just in case.

But there was also an entire section of delicious flow charts for diagnosing and treating common injuries and illnesses – a simplified glimpse into the way doctor’s think. And somewhere, buried in the middle, there was a picture of somebody with black hairy tongue disease:

Black_tonuge

Like panning for gold, that looking and finding.

Black. Hairy. Gold.

What do you want to know about today?