ehlers danlos syndrome · Spiritual

Order UP! (At the Ehlers Danlos Cafe)

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By: JANA GREENE

SERVER: “Welcome to the Ehlers Danlos Syndrome Cafe. My name is Susan and I’ll be taking care of you today. Have you been here before?”

ME: “Hi, Susan. Yes. I come here every single day. I’ll have the Low-Pain Day, with and some type of actual Energy as my side. Please leave off the Crushing Exhaustion and add a side of Gratitude.”

SERVER: “Well, that’s great you want to try the Gratitude! It’s my personal favorite. Hold up;.let me check with the kitchen. * Checks with kitchen. * “Sorry, we sold out of that a while back.”

ME: “Fine. Let’s see…I’ll take some Good Rest as an appetizer…”

SERVER: “We’re out…supply chain demands and whatnot.”

ME: “Right. Supply chain issues.”

SERVER: Let me tell you about our specials! We have plenty of Fresh Pain – just got it in! It comes topped with some Sauce of Fustration, over a bed of WTF NOT THIS AGAIN.”

ME: “Um, no thank you?”

SERVER: “Our Shoulder Sh*t Show entree is really a main event. It includes an ingredient so spicy, you’ll want to pull your arms completely out of the sockets and jump into an active volcano. Holy rotator cuff, Batman!”

ME: “Um, I kind of already do want to jump into an active volcano,…”

SERVER: “Or if you’d like the milder dish, order the T-Rex Special will make you function all day long with tiny little T-Rex arms because your elbows and wrists are hyperextending. Oh, and it’s served with a nice Thumb Dislocation Reduction.”

ME: “This restaurant sucks.”

SERVER: “We also have nice Gravel Knee Supreme as well, a slightly piquant exquisite pain with every step you take, and a knee joint that bends so far backward, you’ll look like the Rubber Band Man, and sounds like 1000 Hummers driving down a gravel road.”

ME: “Hard pass.”

SERVER: “Our last special is a SAMPLER! Shoulder, Knee, AND Hip Subluxations, so that whether you’re standing or sitting (or walking or laying down,) there is 100% guarantee, it ‘gon HURT like a MoFo.”.

ME: “Lick Rust.”

SERVER: “WHOA! No need to get snappy.”

ME: “Listen… all I really want to do is have a good day. I guess I’ll just take an order of Wasting the Whole Day in Bed Like the Granddad in Willie Wonka.”

SERVER: “Do you want guilt sprinkles?”

ME: “What??”

SERVER: “Do you want to feel guilty for not getting out of bed all day?”

ME: “No, not particularly.”

SERVER: “Guilt sprinkles it is! You also get two sides.”

ME: “Okay well then, for my first side, NO Barfing today. And don’t bring out the Slipped Ribs from throwing up. I don’t even want them on a separate plate. I’ve had it every day this week.”

SERVER: “We are outta ‘Not Barfing. Maybe tomorrow.”

ME: “Can I just order a Decent ATTITUDE, then?”

SERVER: “We don’t serve that here. You have to bring your own.…the attitude.”

ME: “Eat glass.”

SERVER: “just for being so sassy, how ‘bout a Blinding Migraine? It’s a 2-fer on sale this week.”

ME: “Kindly bugger off.”

SERVER: “We have a nice Vintage Dizzy Spell? You usually have at least one every day, and you can get it to go.”

ME: “Get bent. Can I cancel my order altogether?”

SERVER: “Oof I’m sorry, it’s already been put in at the kitchen.”

ME: “When did that happen? I just got here!”

SERVER: “Looks like … let me see….January 24, 1969.”

ME: “Doesn’t sound like you use very fresh ingredients…”

SERVER: “Yeah, we only use the stalest ingredients for maximum creakiness, immune function overreaction, and gourmet pain. We have the largest variety of pain sensations in all the world!”

ME: “How proud you must be.”

SERVER: “Will we be chasing our sorrows, er…um, I mean MEAL with a beverage today? Perhaps a margarita?”

ME: * blinks incredulously * “I’m an alcoholic in recovery, so no thanks.”

SERVER: “Wow, that’s unfortunate. A nice Chardonnay would probably ease the pain,”

ME: “Get thee behind me Satan”

SERVER: “It’s SUSAN.”

Me: “Whatever. Just bring me some medical cannabis and a Topo Chico, please.”

SERVER: “How about a nice anxiety spiral for dessert?’

ME: &%$#@! off. &%$#@! ALL the way off, ENTIRELY.

Mental Health · Spiritual

When Thanksgiving Means Canceling Perfection

By: Jana Greene

It’s not a great Thanksgiving.
It’s not even a good Thanksgiving. About to launch into avent sesh. Sorry in advance.

The whole entire day was a comedy of errors.
Oh my God, the anxiety. Plus, I woke up and couldn’t eat food. I’ve had four bites of oatmeal and about a tablespoon of each token TG food all day today. That’s it.

Food is my love language. And Thanksgiving is a Foodie high holy day. And I mean absolutely no sacrilege. Just facts.

I’m having a nasty gastroperesis flare, which is setting off a pain flare, which…you get the picture. My left side of my face had been numb for hours. Auras and face numbness are my harbinger off migraines. It’s what let’s me know it’s coming.

I’m sharing my day, I hope maybe someone else who is inordinately emotional today won’t feel alone. There’s this Norman Rockwell standard, you know? We expect it to be some type of way.

So worsening pain, complex family dynamics, cranberry sauce boiled over in a sticky mess. My knee is going out. I’ve been up since 4 am. I’m tired, weepy, emotional, and could easily slip into sadness.

Thanksgiving is a loaded holiday for me, as there is no contact with my family of origin. Sometimes I get tired of my life behind “pre-“ and “post” sobriety. Before and after. SO much is old me vs. new me. I’ve reinvented myself and I’m kind of proud of that. My new life is my heart’s desire, but sometimes I miss the key players who shaped me. It’s so odd. And painful.

But I can only be but so sad, really. Then I barrel through it.

When things started going sideways today – which was right outta the gate this morning – I said to myself, “Well, I guess I have a spiritual thing to learn today that can only be illuminated by a certain set of circumstances.”

My old spiraling behavior rears up on occasion. It is born of exhaustion, making mistakes, and burning myself out.

I’m taking the “shrug” approach. Whelp. I guess this day wasn’t meant to be easy. Maybe it’s an opportunity to grow.

Who the heck even knows. Certainly not me.
This is how I’m trying to learn to cope with what passes for normal life in 2021: Own the mistakes, ask what very difficult things are teaching me, be deliberate about gratitude (and STAY deliberate about it.)

I’ve been doing a lot of work in acceptance. And truly, I admit to being outrageously blessed. Just not blessed with perfection, in ANY area.

At some point, being imperfect has to be “perfect” enough.

By the way, having your therapist tel you she’s proud of you? Yeah. It doesn’t get a whole lot better than that. ❤️