When coworkers join in the fun...

So I know this has all been kind of heavy so far... I figured it's about time for a quick, light post, but I was having trouble thinking of something like that. Then today something happened and I was like EUREKA! I got one!

So... at work we are organized in the "large open workspace" pattern. Apparently Facebook's corporate offices are organized this way as well. We don't have cubes or offices... just a big room with rows of workstations. And I'm on crutches. And crutches go "click-clack" with every step.

And we don't really have any sort of acoustic management in place. Sound carries.

Anyway, the QA department supervisor sits in the same bay as I do. She mentioned in the hallway the other day that you can really hear me coming with these babies. Yeah, no shit. And now she has taken to, when she hears me coming thru our workroom, peering around over her shoulder in the sort of way you would with a little kid playing "I see you!" or peek-a-boo or whatever you want to call it. I slow down and act like I'm trying to sneak up on someone... we both smile.

I know it seems silly but it's kind of fun, it breaks the monotony and it makes me feel a little less like a freak for being on crutches without any visible cast, braces, wraps or anything of the kind.

I joked that with these crutches I remind myself of the crocodile from Peter Pan and she laughed and said said something like "I knew exactly who you meant before you even finished..."

It's kinda nice to feel connected to my surroundings... not in spite of but because of... my condition.

Brainfog+Fatigue=Cranky Ass Bastard

To my family,

I'm sorry I'm a cranky ass bastard sometimes. I'm sorry I'm short tempered. I'm sorry I snap and act like you're an inconvenience. You're not. I love you fiercely. I would give my last drop of blood for you.

That said, I'm sure you don't want my last drop of blood, you want to know if I want green beans or corn with supper, or to know when we're finally going to go down to the pool, without the sharp, snappish response. You want me to be jovial, gentle, respectful and considerate...

And I am! We have fun and we laugh and we go swimming and life is good! Generally. But those little moments, the moments in between things, when I'm just trying to continue existing and you want to know what time I think we should leave for that thing on Sunday... in those moments...

I'm a cranky ass bastard. I snap. I bark. I find myself launching into (usually short, thank the gods) little tirades about how I don't like being bothered with that sort of thing. And then I realize the shit that just came out of my mouth and I... Jesus... I don't know... I'm sorry.

I'm sorry.

I don't know how to proceed without sounding like a typical ass who just makes excuses.

I don't want to make excuses.

I am fundamentally conflicted, riddled with guilt and, while self-loathing may be a bit strong, some days it's not far off. I don't know how to do so many things. How to be so many things I think I'm supposed to be. All I know is that I am flawed and human and do my best and most of the time that seems so horrendously inadequate I don't understand why you're still here.

Maybe I just want you to understand so you will keep being here.

I don't know how to tell you that getting up, getting dressed and going to work, making it thru the day and then back home without 3 wrong turns is so exhausting and overwhelming that I have no filters. I have no defenses. Shields failed. What you see, for at least as long as it takes for me to spit out the words "I don't fucking care about vegetables right now", is pure, unfiltered, me. That's where I'm at and I don't have any way to keep it from leaking onto you... and that's not OK.

It's not OK with me, anyway... I should never be a cranky ass bastard. It's just not right.

But I can't stop it any more than I can stop my knees from giving out or my skin from peeling off. It's a byproduct of being in this body and all the challenges that entails.

It's not fair. It's not fair to you that I expose you to that side of myself. And it's not fair to me that I end up bearing the guilt that comes with doing so. I but I don't know how to keep it at bay. I am a super hero, gifted with the strength it takes to drag this body thru a day that would kill almost anyone else, but that strength ends up so taxed that the people closest to me are the ones to suffer the direct impact of my weakness.

I love you. All of you. So much. And it kills me that I can't make everything perfect for you.

I'm sorry.

"I have Ehlers-Danlos" or "Dealing with skeptical providers GAH!"

When you're dealing with health care providers and you have a little-known condition with lots of side issues and alternative symptoms and... well let's just say that some things are highly individualized. What EDS looks like in my body is drastically different (save for a few commonalities) than what EDS looks like for someone else.

For example... I have very large, very strong skeletal muscles. Even on a bad day I can pick up 250-300 lbs and carry it away. Well, not right now, but that's because I am currently on crutches for my knee. So for me, big joint hypermobility is not generally much of an issue. Muscle development and chronic joint damage and inflammation have worked together to give me a lot of painful, but functionalish/stablish, joints.

I mean sure... my hips sublux from time to time, my knee needs to pop 3-15 times a day and my elbows lock occasionally. But your average clinical exam isn't going to show something  like that, because for me the issues all crop up when the joints are under load. On the other hand, it's easy to spot laxity issues when you have joints like a friend of mine whose knees will bend to 90° - in any direction. Or my aunt whose hip joint deteriorated to leave her with no ball in her ball-and-socket joint.

Same condition... different expressions.

So I am on the table at physical therapy and my therapist says "I'm not really seeing a lot of joint laxity here". So then I have to explain myself to this guy, the guy with the Masters degree and 5 years in the field. I brace for the skeptical look... the cluck in the throat and the dismissive roll of the eyes. I brace myself to have to deal with being branded as "yet another know-it-all looking to have someone solve their problems."

So I have to explain that sure, my knee seems "normal" when you do a typical PT-style clinical exam.

That doesn't mean that my cartilage is normal.

That doesn't take into account that sometimes as often as every 5 steps I have to pause and "do that thing with my toe and ankle" to pop it so I can keep walking.

Nor does it take into consideration that your little tugs and twisties are a HELLUVA lot different than what my knee does when it has 340 lbs of me bouncing up and down on it for 4500 steps a day (love my iPhone lol).

But none of that negative nonsense actually comes. This guy listens.

Fortunately he is willing to learn. He's willing to take it in stride that he doesn't know everything and learn, study and help me work on what's ailing me. A therapist like that is worth their weight in gold and I am immensely grateful for him and his willingness to work with me.

It's a blessed relief and a shift from the norm of dealing with providers who would really prefer NOT to have to deal with anything unusual.

A helpful, useful link (and a little cynicism)

One of the greatest challenges we face is being understood by people who have no matching context from which to view us. That is to say:

There's no fucking way they could relate even if they wanted to.

And so they try. They say things they think are sympathetic and connecting, like "Yeah, know exactly how you feel. I sprained my ankle last summer."

So, for those who you feel are worth the effort, I provide you this link I obtained from a friend in one of my favorite EDS groups on Facebook:

http://ohtwist.com/about-eds/comorbidities/

Give them that link and watch their faces cloud as they try to think of something sympathetic and connecting to say, then give up on trying to relate and go with "Well, good luck."

I'm honestly not sure which is harder, being us or being close to us with no way to relate.

What do you think?

Laterz!

And straight into Hell...

Sorry... it's just one of those days. I didn't intend to dive right into the ugly shit that comes with being an EDS patient... but then I didn't want to sprain my thumb opening the refrigerator door this morning, either.

So... unless you've had a similar experience, you're going to have a hard time understanding this. Unless you have rheumatoid arthritis, or MS or any one of a million other conditions that can put you in similar situation. this just isn't going to make sense. So you're going to have to take my word for it.

If you haven't experienced it you can't truly understand the frustration, humiliation and shame that happens when, because you're unable to straighten your arm out you can't reach your coffee. Actually that's not the actual bad part. The bad part comes when you lean in a bit to reach it, finally get ahold of it and BAM... the same inflammation that makes it impossible to straighten your arm makes lifting a full coffee cup impossibly painful.

So yeah... something so simple and mundane as taking a drink of coffee becomes an ordeal of pain, impotence and frustration. I may give up because it's just too much. I may get stubborn and push myself.

Either way... I pay for it.

For those of us that know this scenario... it makes us feel stupid, inept and incapable. It makes us feel needy and deficient. It makes us feel vulnerable, angry and afraid.

And just to add insult to injury, our personal energy budget is painfully tight, so on top of the energy we didn't have but still just spent getting a sip of coffee, we may spend some crying, trying to swallow the frustration, or just generally dealing with the emotional fallout.

Few people will ever understand that, as much as my feet, ankles, knees and hips hurt... making it to a chair to sit down is no comfort because, at best, my hips, low back, mid back and shoulders will start hurting. Laying down is no better.

I am tired today... and having a bad pain day... I need to find a silver lining but I'm not sure I have the energy to look for it. So I suppose I'll try to pretend like I look like I'm working. Maybe I'll accidentally get something done!

So yeah... umm... Hi!

Hi. I'm EDS Dad.

Actually that's not quite right. I've spent a lot of time and energy NOT defining myself by the things I have wrong with me. So let me start over.

Hi! I'm Lizzie's Dad, Jared.

There. That's a happy place for me. If I'm going to define myself by something it should probably be by one of the most wonderful and amazing parts of my life. Since I'll be spending a lot of time on this blog talking about the not-so-wonderful things, let the foundation be stellar.

I'm starting this blog for a few reasons. One is that I simply miss writing. Two is the hope that I'll write in it enough to I'll gain a following and eventually achieve world fame, be able to quit my job and go on speaking tours in a custom airplane with seat cushions made from the fine-spun fleece of unborn baby clouds.

Hey, I said "hope".

But seriously... I am starting this blog for 3 reasons, or groups of reasons:

• I have friends and family with EDS, and they need to know they're not alone and that someone with a talent for words is presenting us to the world in a fair, even and capable light.
• I have friends and family that only know than that I blister easily from walking too much, always have scabs on my hands and arms and bruise like a ripe apricot... but have no clue about the underlying causes or conditions.
• I have friends and family who have no idea that there's anything wrong with me at all... but should.

OK I guess that's really only one group: friends and family. And one final group: The EDS community. I have only recently really gotten close to this crazy bunch of misfit gimps and I have to say they're a hoot, they're incredibly supportive and I feel like my little writing project here is my way of giving back.

Still... if you're none-of-the-above (aka "the general public"), I invite you to come along for the ride... I'm a decent writer. I have something to say. And you will hopefully learn something. Maybe even LOTS of somethings!

I will try to keep it light. It won't always be light. I will try to keep it entertaining. I hope sometimes I'll make you cry. I will always be honest, and sometimes too honest. I will do my best to make this something worth reading. And something you want to read... something you look forward to catching up on once or twice a month, anyway.

So... I guess that's about it for this intro post. I'll be seeing you on my good days and bad as this story unfolds. There's a lot going on in my life right now, some great, some awesome and some truly horrendous and agonizing. So yeah... see you in the next post.

Laterz!