Ehlers Danlos Syndrome

No, I don’t feel like dancing. Or dislocating my hips. Thanks anyway.

by Veronica on March 25, 2011

in Ehlers Danlos Syndrome, My body is broken.

Sometimes I attend events and there is dancing and people look at me strangely when I determinedly don’t dance. I could be coy and declare that I am a terrible dancer and oh no, I couldn’t possibly…

I would be lying, because as far as I’m concerned, I can dance and dance well. I just shouldn’t.

It might be easier to go down the coy route, because declaring that I don’t dance, well, it requires some explanation from me. How much of an explanation depends on how much of my blog you’ve read – or my twitter stream and how well I know you. I might just leave it at that and damned if you think I’m rude, or weird.

Or I could brush you off with an explanation like I have bad joints.

But unless you’re very close family, or a friend I love, I’m not going to go into it. Actually, even if you’re very close family, I’m not going to go into it.

Invisible disabilities don’t lend themselves to being explained easily. When you add in genetic and rare, then easy explanations disappear almost entirely.

I had a panic attack before I flew last weekend. Not because I was terrified of flying, but because I was terrified of being stuck in a tiny space, with my knee bent and having it dislocate. Of course, I’d been sensible enough to brace it before flying, but that terror of knowing that your bones don’t stay where they’re put, that doesn’t go away.

I made it to Sydney with nothing worse than aching hips and a few dislocated ribs, but I kept the brace on anyway.

By that night, I had an angry black bruise around the back of my knee, but it was a small price to pay for no major dislocations.

When the dancing started on Saturday night, I smiled politely, shook my head and sat down to watch. Of course, I would have loved to dance, because I do love dancing, but I don’t love dislocated hips and I’m eternally sensible. I was already wearing heels, surely that’s enough danger for one night?

By dessert, all my ribs down one side had dislocated and I had been sitting for so long and was so exhausted that I was close to vomiting. I’d been feeling sick all weekend, but forcing myself to eat a few green beans, some fish and half a cannelloni had taxed my already upset system and it was more than I could take. I called it a night and headed up to my room to relocate all my ribs and lay down, with my feet in the air, in an attempt to stabilise my blood pressure.

45 minutes later, I’d removed my stockings (extra supportive, for the holding together of my pelvis) and replaced my heels with sensible flats. I went back downstairs, to at least get to talk to some of my friends.

I think I made it another 20 minutes before my ribs all fell back out and the simple act of movement was feeling more like walking on a pitching ship, than walking down a hallway.

But no one saw that, because Ehlers Danlos is an invisible disability. No one saw me relocate my wrist half a dozen times in a 30 minute period, or put my thumb back into joint and continue writing my tweet, or wiggle my ankle back into the spot it was meant to be in. And that’s good, because being a freakshow is not something I aspire to. Watch the girl bend in places a person shouldn’t! See her skin stretch and hear the crunch of bones! Roll up, roll up!

I would have liked to dance, but more so, I like my hips staying in the sockets that were designed for them too.

After all, no one looks good on the dance floor when writhing around and screaming in pain.

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Broken ovaries and a not so broken heart

by Veronica on December 1, 2010

in Ehlers Danlos Syndrome, My body is broken.

My ovaries are broken.

Rooted.

Buggered.

Which is a shame, because they looked so pretty on the ultrasound, adorned in cysts.

Polycystic Ovary Syndrome.

It explains why my only 2 pregnancies have been acheived coming straight off the pill (the pill calms down the hormones/symptoms) and why it took so long to actually get pregnant.

It also explains why I’ve just had a 60 + day cycle.

However, my hormone levels don’t look too bad, so in the event I ever get pregnant again, my chance of miscarriage shouldn’t be too much higher. The pregnancy thing, well, sensibility tells me that my 2 are enough and a perfect number and my biological clock is beating me with a handbag, telling me that I neeeeeeeed another baby.

I think for now, sensibility is going to win. Sigh.

In the meantime, I am going back on the pill (hey, that’s going to be FUN) – but a pill without progesterone, so it won’t affect my joints. What it does to my mood remains to be seen.

In other news, I had an echocardiogram the other day, to check my mitral valve – something that gets floppier with Ehlers Danlos and time.

So far, my heart isn’t broken! Which is a very good thing. Yes, there may be a tiny prolapse there, maybe, but it’s nothing major and I can go away for another few years before having it checked again.

Which is all good as far as I’m concerned.

***

And to take a moment to be a total mummyblogger:

Considering I’ve had such a crappy week (month) I would love if you could vote for me in the Babble list. I think I’m on page 3? Or page 2. Either one.

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When a good uterus goes bad

by Veronica on November 5, 2010

in Ehlers Danlos Syndrome, My body is broken.

It’s interesting to visit both a public ob-gyn and then go visit a private one and then draw your conclusions about the health system from there.

I saw a new, private Gyn on Monday.

Honestly, it’s been a while since I walked out of an appointment that was for me, feeling like I had a plan and that I’d been listened to.

To recap, my last appointment in the public system was a bit of a shambles. My periods are very irregular, insanely heavy and very painful, I’ve been trying to get someone to take my claims of suspected endometriosis seriously, and fighting the system every step of the way.

So I went private, just to see if paying for the appointment would help with the whole listening thing.

And oooooh boy did it.

I told him my tales of woe, we talked about EDS a bit – but he knew enough about it that it was a conversation about my specific issues, rather than an educational speech on my part and then we got to the question and answers.

Both my children were conceived within a month of coming off the pill. I’ve never managed a pregnancy on my own – even my brief foray into possible blighted ovum territory had had some help from the pill. I have acne and body hair, lots of cramping etc etc etc.

He thinks it’s very likely that I have Polycystic Ovary Syndrome. We’ll be doing some investigations to see if there is underlying Endometriosis as well, which is likely and he also thinks there is a good chance I have something called Adenomyosis, which is practically undiagnosable at 21, because our medical imaging systems aren’t sensitive enough to detect it in early stages.

Which hey! I’ve always done health problems with style.

Yes?

Heh.

He was lovely. I’ve spent so long battling the system to be taken seriously (7 years for an Ehlers Danlos diagnosis anyone?) that I had really forgotten that when doctors are good, they’re very very good.

So, my uterus. It doesn’t work so well.

I haven’t really talked about it here because SOMEONE is completely against the idea, but Nathan and I had been trying quietly to get pregnant. We had been trying since Isaac was about 5 months old and for anyone not counting, he’s 21.5 months old now.

Almost 17 months.

And nothing.

However, when I told the public system that I’d been having trouble conceiving, they raised their eyebrows at me, looked at my age and the fact that I have 2 children and told me that there was no way, no how that I had fertility issues.

When um, yeah, it’s sort of looking like I probably have some fertility issues.

We’ve since stopped actively trying to get pregnant, Amy’s ASD issues and Isaac’s regression meant that we didn’t really have time to add another baby to the mix. But not actively trying and taking steps to avoid pregnancy are two different things. I still can’t take birth control and a latex allergy puts paid to condoms, so we’ve just been plodding along, waiting to see what happens.

Which incidentally, appears to be nothing.

It’s not surprising really, is it?

So. Bloods have been taken to check for PCOS and I’ll have an ultrasound at my next appointment to check my ovaries (which at last ultrasound, sometime before I conceived Isaac, my ovaries were irregularly shaped and the sonographer asked if I’d been doing IVF, because they were much larger than they should have been) and various other things.

Likely a laproscopy will be scheduled for sometime too, to have a look inside my uterus and see how it looks (I’m putting bets on black, gloomy and with little to no chance of sunshine) and then we’ll move on from there.

And in the meantime, I’ll just try not to panic about how much this is all costing me.

The private doctors might be good, but sheesh, they’re expensive too!

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Sleepless Nights, now sleeker, more streamlined and squashed into a tiny little package

by Veronica on October 30, 2010

in Ehlers Danlos Syndrome, Gotta Laugh

I bought some shapewear. Otherwise known as spandex, tiny little figure squashing things that are infinitely tiny, or holy-mother-of-god-get-these-off-me.

Take your pick.

I’d thought about buying some for a while, but the whole ‘drop 2 dress sizes! look slimmer!’ thing turned me off. You see, as much as I’ve had 2 children and my tummy/hips/thighs look it – you can’t much see that under my clothes. I look okay, dressed.

My issues is with my dislocating hips, knees and pelvis.

So when I saw something advertised as being cellulite taming [which – aside, how do we tame cellulite? with a whip and a chair? train it to hang around on our boobs, not our tummy? I’m a little lost] I glanced at it.

I was however more interested when I saw that this New! Revolutionary! material covered my kneecaps and entire hip region.

Fuck it I thought and bought them.

The first time squeezing into them, I wondered if they’d accidentally sent me an Amy sized pair instead. A quick look at the label told me I was wrong.

I wriggled and I squeezed and I hopped around the bathroom swearing.

All that effort, and they made it half way up my thighs.

Amy looked at me quizzically.

‘Mummy. They won’t fit you.’

‘Yes. They will.’ [struggle struggle, hop, wiggle moan]

Something that I’d bought to help stop my hips dislocating was rapidly in danger of dislocating the rest of me, getting it on.

‘They just need to‘ – pant pant, breathe, sigh –‘stretch!’

Eventually, a few clicky finger joints later, I had them all lined up. The crotch was sitting where it’s meant to, the band at the top was cutting off my breathing and eating ability and I felt like I was being cradled in the grip of a killer bear, about to squash the life out of me.

They were on.

I turned around a few times and wriggled.

Yeah. Totally sexy.

Then, the ultimate test.

Not like some people, I didn’t need to be able to fit into a certain dress and whilst my cellulite was definitely tamed, so was my ego – no. I needed to be able to walk without my hip clicking out of joint and subluxing about.

And….

Success!

I can walk without my pelvis falling apart! Sure, breathing is a little tricky and it feels like I’m wearing a second skin that is 2 sizes smaller than my normal one – but my hips are staying in place.

And that my friends is definitely something to celebrate.

I just don’t know how I’m going to go taking the bastard cellulite taming things back off again.

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Saving Humanity?

by Veronica on October 12, 2010

in Ehlers Danlos Syndrome, Headfuck

After the nightmare that was my Gyn visit recently, I went to my GP to ask about the new drugs.

Surprisingly (ha!) with a close family history of blood clots, I shouldn’t be taking anything to make my blood clot, except under direct medical supervision, which we assume means only if I’m in hospital being monitored. I’m incredibly annoyed that they were prescribed without pertinent questions being asked first.

I had a good whinge about the medical system and got myself referred to a different Gyn, in a private practice. So dammit, I’m going to be listened to, even if I’ve got to pay for the privilege outright.

With the EDS, a family history of blood clots (from the other side of the family) Gyn issues and everything else stacking up, my GP quipped that our family had all these issues, so that the rest of humanity didn’t have to.

Which sort of hit home.

I try really hard not to count the labels were dealing with, but we’ve got a whole host of things going wrong medically.

A veritable melting pot of fuckedupedness.

I mean, sure I can laugh about it, but what a nightmare.

And once, just once, I’d like to be not saving the rest of humanity from disease. You know? It just feels like a little much for one person to deal with.

They’re definitely not wrong when they tell you that one broken gene leads to a host of issues.

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