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.

chronic illness · Spiritual

EDS – When Pain is the Order of the Day

By: JANA GREENE

Hello, dear readers.

The past week has been a pain-fest. There have been times I’ve just laughed hysterically at the notion that I’m supposed to live day in and day out in this level of pain. Ha!! I mean REALLY??
So I write about it, because it’s the ONLY way I can deal with any of it. Thank God journaling is an outlet.
The truth is that I am slowly losing my mobility, and in awful pain while doing it.
This is life with Ehlers Danlos.
This morning, I subluxed my thumb out of joint, picking up a stack of papers. I bent down to clean litter boxes and the pain in my “good” knee brought me to tears. I waved at someone the other day and had to ice my freaking shoulder that night. It’s not just big movements that cause injury anymore. I can dislocate fingers opening a jar. I can’t hang laundry in the closet anymore because I have to reach too high to hang Bob’s shirts. Stairs are murder on my hips and knees. I AM ONLY 53 YEARS OLD.
I am really starting to feel by body slipping. I no longer have “a good knee” or “a good shoulder.” The mutated collagen holds my joints together is getting more lax. My skin is getting stretchier by the day because it doesn’t have proper collagen to hold it together. Falling asleep is excruciating because no matter how I lay, there’s pressure. Pain wakes me up from my sleep.
When my husband hugs me, I frequently ask him to hold me tighter so that it feels like my shoulders aren’t coming out of the sockets. I wake up and decide what I need to brace for the day – I have a “wall of braces” in my closet. I hadn’t had to use my cane since I lost the 40 lbs, but I’m having to use it again. One day I’ll need a wheelchair. Normally, I bitch about these things and move on, but it hasn’t subsided long enough for me to take a breather between flares lately. This of course this takes a toll on the whole family. Then guilt kicks in. Lather, rinse, repeat.
My Instagram and TikTok handles are “unbreakableJBG,” because I may be fragile, but this won’t break me. Oh hell no. I’m too damn stubborn. (But please pray for me, if you think of it.) ❤️