Ehlers Danlos Syndrome

Different

by Veronica on January 15, 2010

in Ehlers Danlos Syndrome

A phonecall this afternoon:

Hi, I’m calling about your appointment on the 19th?

Yes?

It’s been cancelled. He needs to see a Paediatric Opthamologist, not the regular one.

I think: You knew how old he was when this appointment was booked. You knew he was a baby, why all of a sudden did you realise the need for a Paeds Specialist?

I say: Oh, okay. That’s fine.

It doesn’t matter, we still have to go into the hospital that day anyway, both children are having blood tests to test for the gene that causes Coeliacs. A minor annoyance, compared to the Ehlers Danlos Syndrome, but one they want to follow up with.

A letter in the mail:

When I first saw Isaac, he was sitting at the 10th percentile for gross motor development.

That number, 10th percentile kicks me in the guts. I knew he was delayed, but 10th percentile?

Since then, he is crawling and pulling to standing. He is now at the 30th percentile for gross motor skills.

30th, I think, that’s better, right? It could be worse.

Then I kick myself for thinking that it could be worse, because for some people, it is worse. Some children are off the charts, never to fall back on them again. Some children are at the 1st, 5th, 10th percentile still.

I was warned that both children would be slow with their gross motor skills. I know that Amy was, I watched Isaac lag behind his peers also. It didn’t bother me, knowing that walking would be late, that things were going to be a little harder for them.

Seeing it on paper however, 10th percentile, 30th percentile, even as I tell myself that the numbers mean nothing, that hurts. Because on paper, all they are is a number. No one sees how well Amy talks, or how Isaac is clever and works out how to do things differently, that he is determined and that she is amazing. They’re just a number somewhere, a statistic.

Traversing the realm of doctors and genetic testing and blood tests and physio is harder than it sounds. It’s a stretch of my already limited energy, but it’s something that needs doing. They need the physiotherapy and the follow-up care and the specialists.

And I’m grateful, I truly am.

I’m grateful for a diagnosis, I’m grateful for the Australian Medical System, that means this, all of this, it costs me nothing. I’m not likely to go bankrupt providing the children the care they need.

I’m grateful for the quality of care we are receiving, even when not enough is taught about EDS in med school.

But sometimes, I wish that the children didn’t have to be just a statistic. Even if that statistic is, in my opinion, deeply flawed.

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A lack and an excess.

by Veronica on January 9, 2010

in Ehlers Danlos Syndrome

If you’re here for the post with the controversy, you can find it here. Otherwise, move along.

***

I ran out of Tramadol last night. I wasn’t prepared for how panicky that fact would make me. Before you start worrying that I’m addicted, no. I’m not. I’ve not needed to take a Tramadol for nearly a month now and that made me happy. The 20 I was given on prescription have lasted over 4 months. However, a badly dislocated collar bone that wouldn’t reduce, that then pulled out a few ribs and my shoulder left me curled up in a little ball and wishing that the drugs would take effect faster.

Eventually of course they did and I was able to move. Today everything is back in place, leaving me with a mere lingering stiffness through my left shoulder.

It wasn’t the first time and god knows it won’t be the last time. That is what worries me.

I’m lucky, the painkillers I’ve been prescribed haven’t had any side effects for me. No stoned feeling (I’m on a ship! A ship I say, oh fuck, seasick) like panadeine fortes or complete lack of anything helpful like with over-the-counter medication. They just take the pain away, leaving me able to function.

So to run out of them, knowing that it will be at least a month before I can see my EDSy doctor, it leaves me a little stressed. The same way running out of baby wipes, asthma medication or anti-nausea tablets does. I know that I’ll be okay in the event of a bad dislocation, hell, I’ll just cry a lot until it reduces, but that doesn’t help the panicky ‘oh fuck’ feeling that I’ve got.

See, the dislocations, they aren’t rare. If I’ve not had a bad one for a week, I know one is coming, which then triggers the anxiety over it, which then triggers the panic attacks and then it’s a vicious cycle.

Not fun.

My period is due. Of course, I will now most likely be telling you that my period is due for another 2 weeks, seeing as how my body can never work out whether it wants to bleed every 29 days or every 42. Stupid fucking thing. I can tell you that I ovulated (how do you know? I can hear you screaming – well I went from okay-ish to nauseous and floppy-as-fuck in a day, always a clear sign that my progesterone is on the rise) and that my body is gearing up to drown me, but I couldn’t tell you exactly when that’s going to happen. My request would be sooner rather than later please.

Of course, my period being due means that I am going to bend, flex and dislocate all over the place until I bleed enough to drown a small country, curl up and die from cramps and then come right again, only to start the whole process again.

[As a side note: Yes, I am going to see my GP to discuss endometriosis and other assorted fun gynecological disorders. The pain and screaming of last cycle convinced me of that. She will also prescribe more tramadol, more anti-nausea tablets and other stuff. Luckily I can just get baby wipes from the supermarket without a prescription, so I don’t need to panic about those for too long. Thank GOD.]

The floppiness always leaves me exhausted. It takes twice as much effort to walk and move, to pick the children up and change nappies. When I feel like this I spend a lot of time just laying on the floor with them, playing. Really it’s resting, but they think we’re playing and it’s easy, so we’re going to go with playing.

So bleh. I’m sore and I’m exhausted. I’ve got a lack of pain meds and an excess of insomnia. Yay me.

Heh.

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I’ve been a lazy blogger.

by Veronica on December 18, 2009

in Ehlers Danlos Syndrome, Life

Remember, months and months ago, I used to post every day? Do you remember that? I bet some of you are breathing a sigh of relief that I don’t do that anymore. I gave it up in favour of quality over quantity.

However, it seems when I stop forcing myself to write every day, I look back at the end of the month and wonder how I managed to get so few posts together.

It’s harder now, I’m splitting my time between three different blogs (this one, Veronica Foale and My food blog, in case you’ve been busy like me lately) and I’m running shorter on time. I’ve also found another thirty or so new blogs that I like reading and added them to my reader.

Anyway.

Today I logged into my reader, after sort of glancing at it for the last few days and gulped. Lots of new posts in there. Lots of people I want to keep up with. I’m not sure if I actually have the time to click through to everyone though.

So here is your chance. If you’ve written something in the last fortnight or so and you think I haven’t seen it (you’re probably right), leave me a comment here with your link and I’ll click over and check it out. Promise.

***

We’re in the countdown to Christmas here.

Tinsel hangs garlanded around the edges of the house. Pretty beads drape themselves from spare nails, hung willy nilly everywhere, threatening to decapitate me in the middle of the night.

Isaac spends a lot of time looking warily at the tinsel, wondering if it is going to eat him while he sleeps.

We don’t have a tree up though. We’ve been busy and lazy and haven’t gotten around to it.

Do you think I could borrow one of Kelley’s? I hear she has hundreds.

***

Geneticist appointment:

Question:

Do you think the children have Ehlers Danlos?

Answer:

Isaac: definitely, very hypermobile, bruises easily,  happy to diagnose because his skin tears.

Amy: shows signs, very hypermobile, very bruised, very stretchy skin, however no dislocations yet, or skin tears that I can remember. Probably. Bring her back in two years for another clinical examination.

Until then, he is writing me letters of diagnosis for Isaac and a letter to be given to Amy’s school when she starts (in 13 or so months) to say that she has clinical signs and no, her mother doesn’t beat her, please ignore the bruises she is sporting.

I call that a good appointment, considering in children, most doctors refuse to diagnose until they’re thirteen.

***

Okay, confession time.

I don’t have time to respond to every one’s comments via email anymore.

So please, if I suddenly stop emailing you after you’ve commented, don’t stress that you’ve upset me! You haven’t, I’m just having to cut back on time expenditures. If you ask me a direct question, I will probably still answer you, otherwise check back on the blog because I will answer in comments.

I hate those blogs, you know the ones, where the author never responds, never visits you back and doesn’t comment in their own comments. I don’t want to be a blogger like that. If I’m not emailing responses, likely you’ll see me in the comment section alongside you.

Of course, if you email me outright I will respond, every single time. It’s only polite.

***

So um, that’s me.

Of course, half the reason I’ve been absent is due to a trilogy of books that sucked me in. If you like fantasy novels, I highly recommend Cecilia Dart-Thornton’s The Bitterbynde Trilogy. It is very very good. Curl up on the couch and read for 3 days straight type good.

Now I’ve got to hunt down some of her other work to immerse myself in.

Yay.

Oh! Also! Kristen, over at Wanderlust, she is collecting flags on a little widget thingy. She is a little manic about it (in a good way), so if you live somewhere ‘out of the normal’ click over to her and let the widget find your flag. Or tell your friends in different countries to do it.

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Talking about my period.

by Veronica on November 4, 2009

in Ehlers Danlos Syndrome, My body is broken.

AKA Too much information, so uh, walk away now if you’re one of my male readers.

****

Today is day #5 of my period and I’ve bled through 3 pairs of underwear already today. Despite using tampons sized the equivalent of a small nation.

Last night I bled through another 3 pairs of underwear and 2 pairs of pajama bottoms. I was still awake every hour to go to the toilet. Yesterday I bled through a tampon, a full sized maternity pad AND 3 panty liners I’d put on underneath the maternity pad just in case. That was within an hour.

I’d just like to say a giant fuck you to my uterus. Not only is it trying to take over my body with the stabby pain, but it wants to leave it’s mark on everything. At this point I’m scared to cough, just in case I drown.

I’m thinking I need to rename it the Pit of Despair.

Apparently, when you’ve not had a period for oh… 9 months or something, when it happens, it’s like the flood gates open and away goes everything you thought you knew about your body. Hell, this bleeding is heavier than the bleeding I had after pushing a decently sized baby out of my vagina. Only without the ‘grazing’ (I refuse to acknowledge that it’s grazing. Cheese gratering was what it felt like).

We won’t even talk about what happens when I feed Isaac and my uterus uses it as an excuse to clamp down and leave me curled up in a tiny little puddle of pain.

Stupid uterus.

We’re also not talking about my EDS while I’m bleeding. Needless to say I feel sort of like a rag doll. A shaken rag doll.

On the upside, I now have an excuse to buy new underwear. I’ve thrown out nearly a dozen pairs so far.

Heh.

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The post in which I get a little anxious and maybe go a little insane. It’s fun being me.

by Veronica on September 30, 2009

in Ehlers Danlos Syndrome, Food-Issues, Headfuck

We had a Paediatric appointment today, for the children. We left with a barrage of referrals for various specialists.

In no particular order,

– A referral for both children to see a Geneticist and be officially diagnosed with Ehlers Danlos Syndrome.

-A referral for an Opthamologist to have their eyes tested, as EDS can cause eye issues.

-A referral for them to see a Paediatric Physiotherapist so that we can help prevent problems before they occur, as well as making sure Isaac is developing at a normal rate.

– A referral for Isaac to have allergy testing to try and hunt down the cause of his weeping bleeding eczema, that incidentally cleared up when we stopped eating all gluten. So we’re suspecting gluten is the cause, but testing to pin that down.

-A referral for Amy to have an ECG to establish a Mitral Valve baseline.

And finally, last but by no means least,

– A referral for Amy to have testing done for Coeliacs Disease.

It’s that last one that has me wandering around muttering ohgodohgodohgod. Because to test for Coeliacs Disease, she needs to be eating gluten for 3 weeks before the blood test is done.

The blood test is scheduled in 3 weeks. She had her first piece of bread today.

I’m fucking terrified. Do you have any idea how bad it is here when Amy is eating gluten? She has meltdowns and tantrums and ohmyfuckinggod.

Three weeks.

I can’t shake the feeling that three days into this, they’ll be admitting me to a nice quiet padded room somewhere.

Saying I’m terrified is an understatement.

She’s not a nice kid when she’s eating gluten.

Scratch that, she’s a demon hell child when she’s eating gluten. Her eyes glow red and her head spins and she screeches with a voice that could make small animals die.

This is not going to be a highlight of my life.

On the upside, bread! And dip! And like, bread! And stuff.

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