Ehlers Danlos Syndrome

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.

{ Comments on this entry are closed }

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.

{ Comments on this entry are closed }

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.

It broke when I picked it up. but I am still going to fire it and use it in Mum's garden.

I have been experimenting with layering thin pieces of clay over each other.I am trying to get a landscapey effect.

the two bowls side by side so you get an idea of the size of the larger bowl.

{ Comments on this entry are closed }

A gluten free zone.

by frogpondsrock on August 31, 2009

in Amy,Ehlers Danlos Syndrome,food

Gluten is evil. Well in regards to my granddaughter Amy, gluten is certainly the enemy.

I will start at the beginning for those of you out there amongst the interwebs not able to read my mind.

Veronica was reading a blog post where the writer was describing her daughter’s behavioural changes when she ate anything with wheat in it.Tantrums, mood swings, manic behaviour and meltdowns.Yet again the blogosphere provided a light-bulb moment for Veronica as the writer could have been describing Amy.

Veronica rang me and told me that she was thinking of eliminating all wheat from Amy’s diet. During the course of our phone conversation, I pulled out half the contents of my pantry and we examined the ingredients. Massel stock cubes are gluten free yay, but homebrand french onion soup is chockers full of the stuff. Spring Gully worcestershire sauce is good, Holbrooks is bad and so it went on.

I found gluten in some very unexpected places. There is wheat in marshmallows. The sneaky fuckers! I was going to make rocky road for Amy’s birthday. Gah!

Fast forward a few gluten free days.

Yesterday Amy stayed with me for a few hours and the change in my granddaughter is very obvious. Amy was much, much calmer. We still did all the things that we normally do but we did them much, much, much slower.

Normally Amy has me tearing about the place at breakneck speed. Feed the fish.Look in the cupboards. Check the chooks.Collect the eggs. Cook the eggs. Throw the ball for Harry.Play in the dirt. Look for tadpoles. Eat the beans in the garden. See Poppy. Run in circles. Come on Nanny chase Amy! etcetera, etcetera, ad infinitum.

Generally after spending a few hours with Amy I am exhausted, happy that we had fun together but totally exhausted. Yesterday after I waved goodbye to my granddaughter I compared notes with The Spouse and we both agreed that WOW, there was a marked difference in Amy’s behaviour. And double Wow I also,wasn’t completely knackered and in desperate need of a nanna nap. *cue applause.*

The most exciting behavioural improvement from my perspective, was that Amy allowed me to correct her speech. Previously when I  would correct her speech,Amy would sometimes listen and sometimes not. Yesterday she not only listened to me but she practiced her pronunciation with me, until she had the tricky word down pat. I am thrilled to bits.

Gluten is now the enemy.It also seems that there is a link between Ehlers Danlos and food allergies or intolerences. *sigh*

Also whilst we are on food related issues, my friend Barbara has just discovered her 22 month old son is allergic to peanuts.

Our issues with gluten aren’t life threatening and the changes needed are fairly easy to implement. Gluten wont send my Grand Daughter into anaphalactic shock it just sends her into meltdown mode, but it does mean a re-think on the foods we eat and it looks like  I am going to have to add a whole lot of new sites to my reader.

So my lovelies that was my weekend, How was yours?

{ Comments on this entry are closed }

Fear.

by frogpondsrock on August 27, 2009

in David,Ehlers Danlos Syndrome,Family,Veronica

If I am honest with myself, I will admit that Ehlers Danlos Syndrome frightens the shit out of me. I try not to think too deeply about the long term prospects this disorder has for my children and my grandchildren. I am generally an optimist who doesn’t belive in worrying about things beyond my control.

But.

Some days an icy hand of fear just grips my heart and squeezes tight.

Some days the fear sits heavy inside my head pushing out all thoughts, except for the ones that tell me that I am afraid. I am afraid for my children, afraid of their choices. Afraid of the possible consequences of their choices, afraid of fear itself.

My fears which are the normal fears of a parent are magnified by the loss of my Mother and by the challenges assosciated with living with Ehlers Danlos. This post written by Achelois, gives me a glimpse into a possible future for my daughterVeronica and whilst it scares me witless, I know that Veronica is a strong young woman who will cope in her own indomitable way.

My son David had a dentist appointment yesterday. Pre-EDS, Dave would have just walked to the dentist from school, had his fillings and then gone back to class.

Post-EDS it is a whole different ball game.

David had to be assessed by a senior dentist in Hobart to see if it was safe for him to be treated at the small local dental clinic. The senior dentist  needed a copy of Davids echocardiogram report and so it took nearly four months of to-ing and fro-ing before it was decided that yes, Dave could be treated at the small clinic which is attached to his school. But, he needed to have a preventative dose of antibiotics an hour before his treatment.

I don’t know exactly why David needs the antibiotics before his dental work, it is something to do with either his heart or his lungs. The Spouse took the phonecall from the dentist and didn’t ask why, he just wrote down Dave’s appointment times.Gah.

David’s Echocardiogram shows that he has mild pulmonary hypertension and the right hand side of his heart is enlarged. He is fifteen.We have an appointment with a cardioligist in September and I am trying not to think too deeply about the implications for my son until then.

But again that icy hand of fear is giving my own heart a bloody good squeeze.

As I was sitting in the waiting room of the dentists, trying to ignore the crap on the tv, I was quietly worrying about my son. I was hoping that the dentist wouldn’t accidentally dislocate David’s jaw.Possible scenarios and implications of a dislocated jaw played through my mind, all I needed was a brunette mournfully wailing for Heathcliffe and the melodramatic scene in my head would have been complete.*Sigh* I have a very vivid imagination.

David’s jaw didn’t dislocate but it became very clicky during his treatment and they want a senior dentist to have a look at it, at Dave’s next appointment.

I know that Veronica has her own fears, regarding the  health of her children but at least she is spared the soul destroying doubt and disbelief, shown to me by the medical profession as I struggled to convince someone that my daughter  really was ill and not faking.

Since Veronica’s formal diagnosis of Ehlers Danlos Syndrome earlier this year everything has become much easier,well much easier within the medical system at least. That little piece of paper from the geneticist means that Veronica doesn’t have to fight to be taken seriously.Her children are being closely watched by the paediatric team at the hospital and there are protocols being put into place for them. YAY.

Isaac’s E.C.G showed a lovely, perfectly healthy heart. Perfect perfect perfect. That is one less thing to worry about and I can prise back one of those icy fingers.

{ Comments on this entry are closed }

← Previous Entries

Next Entries →