Ehlers Danlos Syndrome

Untitled

by frogpondsrock on May 11, 2012

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 }

When Magic Kisses and Wiggles Bandaids Don’t Work Anymore.

by frogpondsrock on May 3, 2012

in David,Ehlers Danlos Syndrome,Family,Sadness

There was a time when a magic kiss fixed everything and what magic kisses wouldn’t fix, a wiggles band-aid certainly could. It is a sad day in a mothers life, when she realises that the one sure fire cure in her arsenal, just doesn’t work any more. That the magic has faded from her kisses and that wiggles band aids are made for little chubby fingers, not almost man hands.

I don’t often think of myself as the mother of disabled children, I certainly don’t think of my husband and children as disabled.When I think of disabled children, I think of the stereotypical image of a brain damaged child in a motorised wheelchair.

But I am, the mother of disabled children. My children are broken, betrayed by their broken gene and dislocating joints.

In my broken family Veronica and The Spouse are two of a kind, they both have a strong work ethic and they both treat their disabilities with a nonchalant disdain. They battle furiously on, until they collapse in their various heaps, gathering their breath, marshaling their strength and poking their respective ribs, shoulders and hips back into place.

David and I are of the same ilk, we both coast along doing just enough to pass, whilst also giving of ourselves to all that need a hand. We are the ones with the ready ear and the solutions, the broken naturally gravitate towards us. Or more especially the broken gravitate to my son. I learned a long time ago how to ration myself so that the psychic junkies didn’t drain me dry. This is a skill my son needs to master, but it is also a skill that only comes with growing up.

My son, my youngest child David, will be eighteen next month and somedays he is so broken it hurts me to watch. It is hard enough navigating the minefield of young adulthood with out having to deal with a broken body as well. I often wonder if I am in some sort of denial about the extent of David’s Ehlers Danlos or if it is just that I am so used to my husband and daughter being broken that I don’t think too deeply about it anymore.

My refrain in the mornings as David complains of feeling sick has always been, “You will be fine once you get to school.” As I pushed him into the shower, into the car, onto the school bus, out into his life.

Pushing him to push through himself.

David is in bed as I write this. He is having his first Ehlers Danlos Crash, he has pushed himself for so long that his body has pushed back and said STOP. I have a thick lamb stew on the stove and I am letting my son sleep. We have a Doctors appointment on Monday and then I will begin to push again. This time I will be pushing the Doctors to do what I want. I fought for seven years to find out what was wrong with my girl. Veronica has cleared the path for her father and her brother and armed with the knowledge and the support of my daughter I will try and make things a bit easier this year for my son.

{ 13 comments }

Ehlers Danlos, fear, frustration and dislocations

by frogpondsrock on May 3, 2010

in David,Ehlers Danlos Syndrome,Family,Veronica

Yesterday afternoon my daughter rang me, Veronica had dislocated the bone behind her knee and it was refusing to go back in. I was full of useless advice and it was a horrible but brief conversation. Veronica was in a lot of pain and I was unable to help her. There was one small consolation though and that was that Veronica was trapped on her chair in front of her computer.

I suppose if you are going to be in excruciating pain with a bone poking out the side of your leg and unable to move, there are worse places to be than at your desk in front of your computer. I told Vonnie to keep me up to date via twitter.

Here are some of our tweets over a three hour dislocation.

@SleeplessNights will straightening your leg out make it pop back in?

@frogpondsrock Nope, will tear the tendons.

@SleeplessNights Bloody thing! While you are stuck there you could look up quince recipes for me.

@frogpondsrock lmao – I think not.

Relocated. Excruciating.

It wants to pop out again.

All the painkillers in the house wasn’t (isn’t) enough to deal with that. #ehlersdanlos

@SleeplessNights now strap the fucking thing

@SleeplessNights not that strapping it will help but it will make me feel better.

@frogpondsrock It’s braced with tube bandage, lots of it. Best stuff.

@SleeplessNights Good. Now please be careful, I still feel a bit sick for you.xox.

@frogpondsrock I am being very careful. Can’t bend the leg at all. Funny – I didn’t do anything to dislocate it, just bent the knee.

It is that last line written by Veronica that sums up all my fears and frustrations with Ehlers Danlos Syndrome. The fact that you don’t have to do anything at all to suddenly have a dislocation and be faced with excruciating pain is frustrating and terrifying at the same time.

My husband, son and daughter all have Ehlers Danlos but with varying degrees of symptoms.The Spouse has only started to dislocate in the last few years and it is apparently quite common that dislocations will only start to present in middle age. David is in the middle of puberty and isn’t as bendy as his sister but to date he has dislocated his shoulder, elbow, fingers and his ankle subluxes. He can make a horrible clicky popping sound with his jaw and I worry that he will do it one time too many and bam out goes his jaw.

They all share the same symptoms of nausea, headaches, insomnia, low blood pressure, dizziness, achey joints, pain, stretchy fragile skin that tears easily, slow healing and they are also prone to infection. The Spouse and Veronica also have Livedo reticularis and Veronica and David have stretchmarks in strange places. They all have allergies, excema and asthma, poor circulation, weak eye muscles with a slight blue tinge to the whites of their eyes and I would trade them all in on new models if I didn’t love them quite so much.

Doctors in Tasmania know very little about Ehlers Danlos Syndrome and so it is very under diagnosed. Medical students only ever see the very extreme cases in medical text books and Doctors often fail to connect the dots. EDS has a lot of similarities with Lupus and EDS is commonly misdiagnosed as Chronic Fatigue Syndrome or Fibromyalgia.

The Spouse has two sisters who are suitably sympathetic towards our diagnosis of EDS but completely refuse to believe that their children could have EDS. *sigh* It is glaringly obvious to me that some of my nieces and nephews are definitely very EDSy and as much as I worry about them, I have to conserve my energy for my own children and grand children.

There are some very good bendy bloggers out there and I would recommend that you click over to Bendy Girl at Benefit Scrounging Scum or Achelois at The Tensile Times as well as my daughter Veronica at sleepless nights.

If you have any questions about EDS or if you think you have EDS leave a comment and I will get back to you and help you as much as I can.

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Coming out in a small community.

by frogpondsrock on April 30, 2010

in Arty stuff..,ceramics,Ehlers Danlos Syndrome,Family,potential insanity

When my children were small I dreaded going to the local primary school. I used to have to take deep breaths as I walked through the school gates, past the icy stares of the reebok squad and the condescending nods of the glitterati girls. It really felt like I was walking through a gauntlet of disdain and disapproval because I was the one who lived an alternate lifestyle.

When David saw me at school he would launch himself at me and I used to have to brace myself so that the force of his hug didn’t knock me over. Then together, we would walk out the school gates holding hands, swinging our arms and smiling to each other. Away from the horror that was a small town primary school full of prejudices.

We were that family. When everyone around us was building McMansions and driving the latest cars. We were building our house room by room from recycled materials. The fact that we had an outside toilet was a major talking point and my children were teased mercilessly by the children of relatives as well as the children of the school establishment. People that had never been to my home would tell stories in lurid detail of the wild drug orgies we participated in and the squalor in which we lived. The fact that we had few visitors and that alcohol was the only drug I used was quite beside the point.

At a time in Australia when people were encouraged to buy buy buy and credit was king. We stayed debt free and went without. The spouse was labelled a dole bludger because he was unable to work due to the pain of his Ehlers Danlos. We didn’t know it was EDS then we just thought he was broken and that his constant pain was due to a very serious motorcycle accident he had been involved in, in 1992 and then compounded by the injuries received when he was shot in a hunting accident in 1993. The label of dole bludger is a horrible one to carry though and living below the poverty line makes you appreciate the things you have.

If people were happy to make snap judgements based on the way I looked I was also more than happy to encourage their misunderstandings by dressing differently and not explaining myself or my motives.

Now that I am a bit more grown up I am ready to start to explain myself a bit. I look at the glitterati girls and they are still desperately holding onto their fragile crowns, their makeup is getting thicker as they try to hold back the years and I find it hard to imagine that these women’s gossip and innuendo once made my life difficult.

I am ready to step out into the light of my small community and announce that here I am, I am an artist.

Members of the Greater Green Ponds branch of Tasmanian Regional Arts are building up a collection of art and craft created in the Southern Midlands area. Their plan is to acquire works and lease them for display in public and private spaces through out the Southern Midlands.

I am going to ring them up today and offer to donate Boganvillainy to their collection.

I am a bit nervous, but it certainly isn’t as daunting as walking through those school gates were a few years ago.

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The sky is blue today

by frogpondsrock on October 27, 2009

in ceramics,David,Ehlers Danlos Syndrome,Love and Loss

I have this photo of Mum and Amy as my screensaver.

Mum and Amy, a few months before Mum died

I look at this photo every day but I cant bring myself to really have a proper look. If I look properly at this photo and look into my Mother’s eyes I feel myself begin to get all teary. So I quickly look away or I focus on my grand daughter’s face instead.

The enormity of the hole that Mum has left in our lives is only just now starting to become apparent.

Thankfully I have stopped crying every time I think of Mum,though I am crying a little bit as I write this because trying to articulate the depth of my loss makes me examine it in more detail than I want to.

Veronica now has two horses and she reminds me so much of Mum, in that she never does things by halves. Mum was an accomplished and knowledgeable horsewoman and watching my daughter with her two horses I am confident that it wont be long before Veronica is the same.

Mum on Prince

I don’t know where I am going with this post at all. I only know that today the sky is blue and it promises to be a lovely day and for that I am thankful.

David has been formally diagnosed by the geneticist as having Classical EDS with a score of 7 on the Beighton scale. ( a non bendy person might score a 1 if they could touch the floor with the flat of their hands) I am not very flexible at all so my score would be a zero.

The cardiologist has decided that a non-interventionist approach is best for David. Yay. I am all for non intervention. We go back to see the cardiologist in late January 2010. The irregularities with Dave’s heart mean that he will have to take extra care of himself and always be aware of the “heart healthy options” which is a big call for a fifteen year old boy who, like his peers thinks that he is ten foot tall and bullet proof.

My mouth is all healed up as is my self esteem. I can wear my teeth all day now without any major discomfort. I have plonked my teeth into the same category that shoes and bras belong, annoyances that must be worn outside the home for the sake of vanity. The first thing I do when I walk in the door when I get home is kick off my shoes, take off my bra and rip out my falsies. aaah.

I have been in touch with the trustees of a local nature reserve and they were quite excited about my idea of a sculpture trail. I was so nervous before I rang them,that I had to wander around the house psyching myself up to make the call. All the angst was for nothing and I was incredibly relieved and excited by the end of the phone call. I am meeting up with the trustees early next February on site. All I need to do is submit a written proposal to the committee and once that is approved I can begin working towards a major interactive exhibition in a lovely bush setting in February 2011. YAY.

I am also excited about our upcoming exhibition Perspectives of Fire and as soon as the invitations have been printed I will publish one here and then invite you all to the show.

I am working on some different bowls at the moment and Chris Jordan’s photos of the dead albatross chicks have really touched me. I am going to make a dead albatross bowl later on today and I will publish photos of it as a work in progress early next week.

Here are some bowls I made last week. These bowls are the sort of thing that I am thinking of making for the outdoor exhibition. If you mouse over the photos you can read the descriptions of what I have done.

I am off outside now to enjoy the sunshine.

I rolled the clay over some gum leaves.

This is what it looked like when I peeled the leaves away. I should have let the leaves burn away in the kiln, because by removing them I weakened the bowl.