health · Spiritual

Would you Want a Diagnosis if there were no Cure? (The answer is “yes”)

By: JANA GREENE

What good is getting an accurate diagnosis, if there’s no cure? A woman I follow on Social media posed this question and it got me thinking. She also has Ehlers Danlos Syndrome.

Knowledge is power, and it explained a whole lifetime of things.

Every day of second grade, I had to spend afternoons with a tutor after school because I held my pencil “wrong.” I physically cannot hold it that way. My fingers wouldn’t work, still don’t.

I’ve had bad migraines all my life.

I cut myself constantly with knives in the kitchen, even as a kid. I’ve managed to cut myself with safety scissors.

Buttons are the devil.

Physical Education class was a nightmare. I kept getting injured doing the simplest things, and “sat out” many times, resulting “F’s” in cthat class. Turned ankles. Sprains. PE teachers are MERCILESS. I was fussed at for “not trying.” Or worse – “faking.” Id love to look them up and let them know what’s up.

I thought everyone got dizzy tying their shoes, every time.

Having a super shitty immune function, was sick constantly. Wouldn’t find out until adulthood I have immune deficiency.

I was in some degree of pain at all times – every joint. As far back as I can remember. Of course as the laxity in my joints increases with age, the pain gets worse.

My ankles are so weak, I broke my right one in two places from standing getting up to pee in thre middle of the night. Just torqued it wrong. I was so accustomed to pain, I walked on it for 11 days anyway before going to the doctor.

I always required more anesthesia, which is a redhead thing and an EDS thing.

There was a reason my body cannot do autonomic functions adequately – tempature regulation, blood pressure – just can’t handle it. The fluctuations that were such a mystery all my life make sense.

The hyper-mobility made for some good “party tricks” – contortionist stuff with knees and elbows, etc., but I had no idea it was a medical issue ad a young adult.

Knowing what was wrong – even though there is no cure and no really effective treatment – was momentous.

It means the difference between managing symptoms with some chance of alleviating some of the severity. It means the enlightenment of your own body, after feeling like you were made defectively.

I’m not defective. Just sick. And that’s okay.

It’s gonna have to be.

ehlers danlos syndrome · Spiritual

Order UP! (At the Ehlers Danlos Cafe)

Photo by La Miko on Pexels.com

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.

ehlers danlos syndrome · Spiritual

Ehlers Danlos – The Syndrome That Kept Everyone Guessing

BY: JANA GREENE

It’s (still) Ehlers Danlos Awareness Month. I thought I would share some interesting things from growing up with it undiagnosed, in letter format, from the prospective of what I know now:

  • Dear Kindergarten-2nd grade teachers: We have been trying to correct the way I hold my pencil for a couple of years now. There’s nothing wrong with my handwriting – I just hold my pencil with pretzel fingers overlapped because that’s what feels natural and comfortable. Please stop trying to make “holding the pencil correctly” happen. It’s never gonna happen.

  • Dear OBs: There’s a reason why I keep going into preterm labor. It’s called “incompetent cervix” and is pretty much what it sounds like. I don’t have enough collagen to stabilize my womb. My babies will come FAST, and with life-threatening complications for me and them. Both of my babies had to be resuscitated at birth and I nearly died, both times. Knowing what was wrong with my body may have helped me have safer pregnancies.

  • Dear PE Teachers (every single last one of you…): I’m not faking the sprains and dislocations. I’m not sure how one would “fake” a dislocation, as you can clearly see my shoulder rolled in an awkward, unnatural position. Nothing like being forced to run the mile on the track when your hip has subluxed out of place! And also….When my mom writes me notes excusing me from PE, it’s because I get injured incredibly easy and I AM IN PAIN. Not “owie” pain….No. We are talking grown-ass man-would-cry PAIN. No, I don’t care about your class, because I dread EVERY morning having to participate in things that hurt me, and hurt me badly. I admit to having a bit of a disdain for PE teachers. Between getting yelled at because of injuries and given “F’s” in class, I’m not a fan.

  • Dear Fitness People: It’s not normal for my heart-rate to go up to 200 on moderate exercise. Being pushed to work harder and go faster is a recipe for disaster. I pass out. Everyone cannot do what you can do.

  • Dear Childhood friends: I cannot hold my fork like you do – it’s not bad manners, I promise. It’s the only way I can keep a grip on my fork.

  • Dear Healthcare workers: Just because you are not familiar with a syndrome or disease doesn’t mean it doesn’t exist or isn’t profound. That is why me – and those like me – are so determined to spread awareness. People don’t know. People need to know.

  • Dear “Every Doctor I saw before I was 40”: Please do not hastily slap the “fibromyalgia” label on every sick person. While it is a very real thing, other illnesses can masquerade for it – conditions that require treatments. It took me almost 20 years to get a correct diagnosis.

EVERY SINGLE THING I experienced health-wise my whole life makes SENSE since the diagnosis. By the time I met Bob, I was at the END of my rope. I wasn’t sure what was happening to me, and half the doctors insinuated I was just crazy, which adds insult to injury. Please, doctors…PLEASE. Listen to your patients and pay attention to the symptoms.

If I still had no idea what was wrong with me, I don’t know where I’d be, ya’ll.

Because after decades of your shit dislocating and experiencing debilitating fatigue and repeated injuries, stroke-level blood pressure, a crappy immune system that refuses to cooperate consistently, horrible migraines that take you down for days…..you lose hope.

I was absolutely losing hope, and honestly, it made me want to drink. I only came out of this thing with sobriety intact because of the love of my good husband and the care of an incredible doctor.

At least I know what’s happening when I sublux or dislocate, or experience high pain. I am so fortunate to know, so that I know how to best deal with my chronic illness.

I wish the same for every person with a chronic illness.

We deserve no less.