Food-Issues

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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Millions of Ideas

by Veronica on September 3, 2009

in Ehlers Danlos Syndrome, Food-Issues, Headfuck

A million ideas whirl through my head.

Flavours for a wedding cake, learning to cook gluten free, things we can do today.

Unfortunately, my body is completely unable to keep up as I stagger around the house holding myself together. Parenting is perfect when done from a horizontal level. Perfect for me at least. Eventually the kids will need feeding or changing and I’ll have to stand back up, a larger undertaking than I’d like it to be.

I’ve had the flu and my brain is still foggy from it. Writing is not coming easily today, yet I still want to share; to write. A project of mine sits calling me. I don’t think my wrists will hold together long enough to do any substantial work on it. I set it aside. I could work on it, at the expense of tomorrow’s movement. I’m not willing to give that up though.

Tomorrow I have physio. I was meant to have been doing exercises for this last fortnight.

Unfortunately stability ball + Amy + 2 cats + a baby + the flu = no time/energy for exercise.

The cats run over the ball, making me thankful that it’s hard rubber. Amy jumps on me. Isaac cries.

In order to have space, I need to clean up the toys first. By the time that is done, I really need to lay down with my feet up before I fall over.  It’s not conducive to exercises.

Instead I practise tightening and releasing all of the muscles I can feel in turn. It’s not enough, nor is it what has been prescribed, but mobility has not been my strong point this week.

I worry that the physio is just making me tired and isn’t quite tailored for what I need. It’s exhausting, having to hold yourself together to move. It leaves me with another thing I need to be doing, when all I want to do is sleep.

I can’t bend at the moment. Leaning over and then standing back up is more of an effort than I’d like it to be. The pain through my pelvis tells me that things are slipping, that I’m not holding it together well enough. My hips slip in and out of joint as I walk. I ignore it, thankful to still be able to walk.

It’s sunny outside. I sit on the grass and lean over to pull weeds from the garden. Isaac gurgles behind me, thrilled to be outside, pulling at the grass. His bouncer bounces frantically as he tries to kick himself out of it and into the dirt.

I know he’d love the dirt, but I’m not ready for that yet. Plus, the grass is wet.

Amy bounces on the trampoline. Golden highlights glint in her hair as she smiles. I like her again. I never stopped loving her, but she was a hard child to like some days. She was difficult. I don’t remember how I coped. Moment to moment I suspect. It was bad. It’s better now. Gluten is Evil.

Everything runs together in my mind.

A million thoughts. A million ideas.

There is an open home for Nan’s house next weekend. Surely that’s too soon? How come we’re moving so fast all of a sudden?

But then, there would never be enough time for me to come to terms with it. I need to just keep breathing, one foot in front of the other. There isn’t enough time to dwell. Not enough time to grieve either, but I can’t create more time.

Millions of thoughts. Rushing past, like water under a bridge. Or the bubbles that float past as you sink into the ocean.

I feel I’m drowning in a sea of grief and anxiety. Everything is blue and the bubbles are rushing past faster as everything slows down.

I don’t have time for this. I push to the surface and breathe.

Just breathe.

One step after another, tightening muscles as I go.

One breath after another, holding myself together.

****

Unrelated: I have a giveaway happening for US residents. (Sadly, not Australian ones. Grump)

You can either click here, or click on the giveaway’s tab at the top of the page.

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Dear Internet. What a lot I’ve got to share with you.

by Veronica on August 31, 2009

in Ehlers Danlos Syndrome, Food-Issues

Dear Internet:

Well now.

A week ago, I was going slowly insane. Amy didn’t listen to a word I said, I was yelling more than any person should have to and I think my head was about this close >< to exploding. Amy was having multiple tantrums an hour, being told no was a TRAGEDY of the HIGHEST ORDER and I was constantly running two steps behind, just trying to stop her hurting herself or destroying things.

It was bad is what I’m saying.

Then I read this post on Mommy is Moody and little things started to add up. Reading about Zoeyjane’s daughter’s food intolerances and her behaviour after she’d accidentally ingested some wheat was like a light going off in my head.

So I quietly eliminated the gluten from her diet one night. I didn’t say anything, I just checked labels and watched her. She was okay. Not fantastic, but okay. I watched her all morning the next day and then let her have noodles for lunch. (Wheat noodles)

The down slide in her behaviour was enormous. Within an hour she was tantruming. She screamed, she hit, she bit. It was awful.

It was enough to convince me.

That night, Nathan and I sat down and discussed things. We talked and talked and decided that as a trial, Amy is going to be gluten free.

Three days later, the difference in her is astounding. Let me say that again, the difference is ASTOUNDING. She hasn’t had a tantrum in three days. No screaming. No throwing herself to the ground screaming like the world is ending. No biting (herself, not me). No hitting. No hurting herself in order to scream louder. Nothing. She’s been lovely.

Before, Amy used to be a little manic. She’d bounce from one activity to the next, never stopping longer than a minute, never able to sit still. She wouldn’t allow you to correct her on anything and if you tried to teach her anything (counting, colours etc) she’d scream at you to SHUSH! until you stopped. She learned things at her own pace DAMMIT and don’t you DARE try and talk to her about anything she didn’t want to listen to.

We own a bookshelf full of children’s books. None of which she’d let me read. After 2 pages, she’d get bored, snatch the book and throw it away. Eventually we stopped trying.

However.

Three days into a gluten free diet and guess what we did yesterday? We sang the alphabet. Together. I read five different books to her. We counted. We talked. She ran up and threw her arms around me, just because she wanted a cuddle. Without screaming. She is happy.

She’s a completely different child.

Before, I don’t think anyone except Nathan and I knew just how bad she was. She’s always been well behaved for her grandparents, even if she was a little manic. Nathan and I spent a lot of time just looking at each other, trying to make it through another day.

Now? We don’t need to do that.

Sure, we have the regular toddler issues of boredom or having to share her toys, but she’s not in constant meltdown.

It’s really fucking nice.

Oh and LOOK. I’ve just discovered that people with Ehlers Danlos Syndrome tend to have food allergies/intolerances. Now really, are we surprised?

Because somehow, with all else that it causes, I’m not.

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