Untitled

by frogpondsrock on May 11, 2012

in David,Ehlers Danlos Syndrome

I think I have Titler’s block.

The title of my blog post is generally the first half of a sentence, with the opening sentence of the blog post completing the thought that was started in the heading, with the post then following along in a semi-orderly direction.

But not today.

Today I have Titler’s block and so this post will be all over the place, completely without any structure.

It is 12 noon and I have done sweet eff all this morning.

Apart from drive the totally unplanned hour long round trip to get David onto a metro bus because he missed his school bus this morning.

And seeing the suburban bus stop is next to a supermarket, I did a quick ninja shop and bought ingredients for three different meal options for tonights dinner.

Tip for young players. Do not go to the supermarket before breakfast.

I came home with canneloni and couscous, ricotta and red snakes and now that I have had breakfast I don’t feel like cooking a bloody thing.

David read my blog post , “When Magic Kisses and Wiggles Bandaids Don’t Work Anymore.”

He kissed me on the top of my head and told me he loved me, I then pushed my advantage in the mum-needs-a-love stakes and also scored a giant hug and a kiss on the eyebrow for luck.

The proton pump inhibitor (40mg pantoprazole) has taken the edge of David’s nausea so he only feels terribly seedy each morning rather than constantly on the verge of throwing up. So that is a win, sort of. We also came away with lots and lots of Panadol-Osteo, some Celebrex and a small supply of Pramin (10mg Metoclopramide) for when he is really feeling like shit.

The paracetamol seemed to take the edge of David pain levels a tiny bit, but he complained it was making him feel ill so he stopped after 2 days. We still have the big guns of the anti inflammatory Celebrex to keep as breakthrough pain relief when he is having a big flare up.

One of the difficulties in dealing with an incurable, degenerative and rare genetic condition is that the medical profession are always constantly on the back foot and being reactive rather than proactive and it is disheartening to realise that all we can really do is muddle along as best we can.

I don’t like being reactive, I am a doer, I like to be prepared and to have a plan. I am a great believer in preventative strategies and I am sure I was a glorious boy scout in a previous life.

But Ehlers Danlos Syndrome doesn’t allow for plans and preparations. Veronica managed one of her most hideous and painful dislocations while she was sitting down being still. *sigh*

So we are taking each day as it comes and our next visit to the Doctor will be to get David a referral to a psych who specialises in talking with people who are dealing with chronic pain, it would be nice if this psych was also experienced with teenagers but I am not holding my breath.

In the meantime with winter fast approaching we took advantage of a glorious autumn day last weekend to do a spot of fishing down at the river.

{ 22 comments }

Fiona May 11, 2012 at 1:32 pm

Jelly snakes sounds like a great idea for dinner

frogpondsrock May 11, 2012 at 1:56 pm

They are in the glove box of the car Fiona so I don’t absentmindedly eat them all.

Fiona May 11, 2012 at 1:58 pm

Don’t tell me that! I’ll go hunting!

frogpondsrock May 11, 2012 at 2:01 pm

Lol when I pick you up from the airport they will be long gone. da da da dun

Pixie May 11, 2012 at 1:42 pm

I am on panadol osteo for my arthritis and it made me nauseous too in the beginning but it is well worth persevering with it as it does help.you need to keep the levels up which helps with the constant pain.

So where are my beanie pics????mmmmmm????? Lol

frogpondsrock May 11, 2012 at 1:59 pm

I remember that remembering to take her daily painkillers was hard for mum and so then when the pain built up it was a lot harder to get down again to a manageable level. How many panadols do you take Pixie? Dave started out with 2 every four hours but I was thinking of bumping that up to a six hourly gap.
and I will be at Veronica’s for Mothers day so I will TRY to remember to take some photos (I am such a bad friend)

Pixie May 11, 2012 at 2:29 pm

I take 2 every 6 hours and I find that helps me a lot

frogpondsrock May 11, 2012 at 2:39 pm

I will try that with him tomorrow, (If he comes home from school tonight that is)

Pixie May 11, 2012 at 2:45 pm

I have alarms set on my phone to help me remember to take if different meds

Dorothy @ Singular Insanity May 11, 2012 at 1:45 pm

Gotta hate chronic diseases. I don’t know how anyone can live with constant pain and nausea, yet I know that they do. You have some brave kids there, Kim.

Love the pic :-)

frogpondsrock May 11, 2012 at 2:00 pm

Thanks Dorothy, it is singularly the hardest thing I have to do as a parent is to accept that I cant FIX them.

edenland May 11, 2012 at 2:22 pm

Beautiful, beautiful post Kim. Here’s to more eyebrow kissing, and contraband jelly snakes. XX

frogpondsrock May 11, 2012 at 2:40 pm

Red snakes are the best. I am slightly addicted to the Natural Confectionary co. snakes. David is 6 foot 5 so I often get kissed on the eyebrow lol

Elephant's Child May 11, 2012 at 3:14 pm

Here’s to more hugs, eyebrow kisses, glorious autumnal weather and of course to red snakes. Far and away the best.

And yes, living with a chronic and incurable disease is sucky. I just muddle along as best I can. Which is hard for a control freak so I do understand how frustrated and angry you are that you can’t wrap your babies up and make them all better. For ever.
Just the same, having a mother like you has to make relapses easier to cope with.
Elephant Hugs.

frogpondsrock May 12, 2012 at 1:49 pm

Red snakes are my very very favourite, closely followed by Old Jamiaca Rum and Raisin chocolate. I know that you understand the trials of a a degenerative and painful disease. I never know where I am with David, whether to push him or to let him sleep. it is a very hard and fine line.

Beet May 12, 2012 at 12:32 am

I’d have had the red snakes for breakfast… lol

Good luck getting the meds sorted – panadol osteo works well for me with “normal pain days” but I have to go back on the stronger stuff on medium to bad days, and find celebrex absolutely useless so I’m glad that at least helps him.

I think the chronic pain psych is a good idea – one of the hardest things I found with dealing with my pain levels was getting my head around was getting my head around it all.

xxx

frogpondsrock May 12, 2012 at 1:51 pm

We haven’t tried the Celebrex with David yet, I am a bit worried about it as that strength anti inflammatory can actually make EDS sufferers fall apart very quickly, as it makes them too floppy. I used to take it for my knee and it was wonderful.
And Yes I hear what you are saying about your head. xx

Rusty Hoe May 12, 2012 at 1:52 pm

Chronic illness and kids in pain sucks the big one. Still wrapping my head around the fact I can’t fix my youngest, but in the meantime there are those kisses and hugs and moments that let you breathe a little easier. Hope the new meds help take the edge off. We’re still trying to find a good and tolerable combo for Liam, but we’re hopeful :)

frogpondsrock May 12, 2012 at 1:55 pm

Have you passed your dodgy genetics onto Liam or is this something else?

Rusty Hoe May 12, 2012 at 2:07 pm

It’s the dodgy genetics. Just seems that each generation cops it worse than the previous one. His joints are way worse than mine. Currently trying to deal with slipping shoulders and lower back from using the crutches than he needs thanks to his knee surgery to fix his patella. Poor kid can’t catch a break at the moment.

frogpondsrock May 12, 2012 at 4:11 pm

aah EDS is hard on our boys :(

janet May 12, 2012 at 11:20 pm

That’s a gorgeous picture of David fishing! Very dreamy and reflective. I hope the new plan helps. All of our kids saw counselors as teens and I think it helped in subtle ways, different for each of them. Best wishes.

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