Ehlers Danlos Syndrome

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 }

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 }

A time to write…

by frogpondsrock on February 16, 2012

in cancer,David,Ehlers Danlos Syndrome

And there is a time to faff about but if you faff about for too long you lose your writing time

Or I do at least.

I write my blog posts in the early morning. Each morning I get up and make a pot of coffee and I sit down at the computer. I check my emails and then I think about writing a blog post.

The critical piece of timing here internet, is the point between thinking about writing a blog post and opening facebook.

If I open facebook, I lose time, anything from 20 minutes to an hour can vanish in the click of a mouse.

I check my son’s status, then my daughters, then I check on you. I smile at the humorous pictures I see and I share stuff that interests me or that I think my friends will enjoy. click faff click faff. tick tock tick tock tick tick TICK TOCK.

Then twitter beckons and I have another choice, click over to my twitter account or log onto the blog.

I use twitter as a news service and If I click through to my account all chances of writing a blog post have flown out the window. I  become distracted and then overloaded mentally by all the goings on in the world. The occupy protests, Syria, feminist issues, causes, humour and stupidity all combine to steal at least another hour.

And look it is 8.20 am and I haven’t written a thing.

The clock is still ticking away, half the day has vanished already, I should be in the studio, eeek.

But I am procrastinating and maybe I should just make a music cd to work to. Something loud and rocky, good cleaning music.

Because the studio is chaotically messy from this months frantic making and I need to give it a good clean before I can glaze the work.

The Fired Up exhibition opens on the 4th of March. The work is half done.

The bisque firing was successful and the work just need to be glazed.

Glazing involves making five or ten litre buckets of glaze, mixing and straining and sieving and pouring.

All very physical work but I can’t concentrate today.

I am procrastinating.

I am procrastinating by writing this post.

I have managed to avoid twitter and facebook this morning apart from a quick check on the kids.

My son goes back to school today. He dropped out of school last year and spent the year sleeping.

His facebook status worries me  All-nighter then rosny tomorrow. Yiew. Pumped to get back into guitaring.

I need to remind myself  that I cant live his life,that I cant make him, that I cant make him be happy.

I cant fix him. My son is broken and I can’t fix him. I can just pass him the glue and hope.

I rang him at 7.08 am this morning and he answered the phone with, “Yes I am awake Mother”.

I wasn’t going to ring but I am too keyed up to let today slip by without making contact. David is an independent student, who does not live at home and he needs to find his own way without me nagging him out of bed and forcing him to go to school.

I am a bundle of nerves, of angsty, worrying nerves. I hope against all hope that David has a good first day at school, I hope his day today will be brilliant and that he will go to school again tomorrow, happily.

I hope, I hope, I hope.

I have had this feeling every first day of every school year of his life. Hoping like mad that he has a great day, knowing that his first day’s experience  will define the year. It seems that I have spent every first day worrying. The difference now is that we know about the Ehlers Danlos Syndrome. We know why David can’t sleep. Why he hurts, why the nausea lasts all day and why the anxiety gnaws at him.

And here I am again pointlessly exercising my mad skills with my 20/20 hindsight. If only I hadn’t sent him to Blah de Blah  high. If only I hadn’t made him stay at the primary school he hated, If only we didn’t live so far away. If only things were easier.

If only mum hadn’t died.

It is hard, internet.

And all I can do, is the best I can do.

I just muddle along, taking each day as it comes and making decisions based on the information I have at hand at the time.

And if wishes were horses I would own a circus.

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I am not okay today.

by frogpondsrock on September 13, 2011

in Aspergers,Autism,Ehlers Danlos Syndrome,Grief,headfuck

I am far from okay but there isn’t a whole lot than anyone can do to make me better.

I also don’t see that anyone other than my very closest friend, asking me if I am okay are going to get a straight answer.

I will just lie and grin and say of course I am okay and then change the subject.

I am a brilliant actress.

RUOK is a wonderful concept but today it is giving me the shits.

Now before you start to get all upset with me and decide to lecture me about the ideas behing RUOK  and all that jazz.

This post is about me. Not about you.

If you are going to get upset with me, just piss off quickly and don’t give me the shits ok.

I am stabby enough as it is.

I am not okay today.

Tomorow I will be better, maybe.

The day my mother told me she had a black spot in her lung was one of those defining points in my life.

Everything now is measured in befores and afters.

The day my daughter was diagnosed with Ehlers Danlos Syndrome was another defining point

As was the diagnosis of her two chilfdren with EDS and their subsequent diagnosis of Aspergers and Autism.

My husband has Ehlers Danlos Syndrome.

My son has Ehlers Danlos Syndrome and suffers from anxiety.

These things are not okay.

These diagnosis dont bring sunshine and fucking roses into my life.

They bring despair.

Great fucking bucket loads of despair.

I am grieving.

I am grieving hard.

Lung cancer shouldnt have killed my Mother she was a non fucking smoker for fucksakes

My daughter shouldn’t have to struggle to brush her own hair.

She is 22 years old and can barely walk from one room to another.

Simply taking her children to the park exhausts her.

This sucks.

My son is 17 and is proving he is  grown up by rebelling against everthing we have taught him.

He has moved out of home.

He has dropped out of year eleven.

He was stabbed behind the ear in a brawl. The wound was superficial. My fear manifested as anger.

And I gave my son another reason to push me away.

He has unfriended me on facebook because I pulled him up privately on a thuggish racist status update.

I am desperately afraid that his anxiety will get the better of him.

I watched a police car driving up my quiet country road the other day and I was convinced it was coming here to deliver me bad news.

I started to cry with relief when it drove on by.

I know that this stage will pass but it doesnt make it any easier.

I share snippets of my life here on this blog.

Tiny slices.

I was told that I should have a professional ceramics blog and leave all the personal rubbish out of it if I wanted to be taken seriously as an artist.

But I cant be bothered starting a new blog  full of art wank and words and ideas that belong in a dusty book somewhere.

I use this blog to think out loud, to order my thoughts, my ceramics and my life are intertwined, as is the blog.

They all are a part of who I am.

Maybe RUOK has worked anyway

As I have cried and written my way through the shit that is in my head.

I am not okay today.

But I am feeling a tiny bit better, thank you for listening to me internet.

I will be okay tomorrow.

Because really what else is there to do but

Just keep swimming.

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Ehlers Danlos Syndrome and the long search for answers.

by frogpondsrock on December 24, 2010

in Ehlers Danlos Syndrome,Family,Veronica

I have never been one to sit quietly and accept things on face value. When my daughter began to get very ill in her early teenage years with a strange sort of flu like virus that lingered for weeks at a time I searched for answers. What was this horrible virus that Veronica never quite recovered from?

I wanted to know why my 14 year old daughter had a headache that would not go away? Why she was  constantly nauseous and at one stage of her illness only able to eat plain pasta, tomatoes and apples. Why was my girl totally exhausted and yet unable to sleep? Why were all her joints aching? What caused her to nearly pass out every time she stood up too suddenly, what caused the heart palpitations and the unexplained bruises? Why did a simple cold always turn into a chest infection, why was she quick to catch everything and slow to heal? Why was my daughter in pain?

I needed to know why this was happening to my first born child and so I pushed for answers. My hopes would rise with each new specialist we saw only to be shattered again when the results of Veronica’s blood tests came back as normal, except for one little marker that was always a bit higher.

When your child is sick finding out why does become like an obsession. A sick child takes a hell of a lot of energy and it is also a very isolating experience for a mother. I couldn’t really talk about how worried I was about Veronica with my general acquaintances because that sort of conversation very quickly becomes boring. My only allies were my mother and my best friend Tanya, who has lupus.

Mum and Tanya held my hand, soothed my fears and offered their ears. They would ring me with news of  rare conditions with symptoms that sounded similar to Veronica’s and encourage me to go to the Doctor to get this and that checked out. They were there to pick me up when I was at my lowest and I didn’t feel quite so alone with their support.

At the end of two years of illness we had exhausted all our medical options. I had been told by various doctors some kindly, some brusque and some indifferent that Veronica was faking, that she had a mystery virus, that it was probably worms, growing pains, sinus, psychological issues, anorexia and the list goes on and on. One doctor was very interested in her relationship with her father and another doctor was openly disgusted that I was so stupid as to allow this slip of a girl to waste everybody’s valuable time.

We were given a diagnosis of Chronic fatigue syndrome and told to get on with out lives and that Veronica would probably grow out of it.

All through this, The Spouse tried to be supportive but he is grumpy at his best and downright horrible at his worst. The Spouse was sympathetic to Veronica’s pain, as he is in pain all the time. He was sympathetic to Veronica’s nausea, as he always feels like crap himself.  His remedy was for Veronica to stop feeling sorry for herself and to push on through. He growled at me, that I was spoiling her when I let her stay home from school when she was having a bad day and his common refrain was that Veronica had pulled the wool over my eyes in order to have a sickie.

The standard conversation that Mum and I had was that if Veronica had a broken leg, her father would wait on her hand and foot, he would build some amazing contraption to make her incapacitation easier and nothing would be too much trouble at all for his pumkin, but because Veronica had an invisible illness he wasn’t very sympathetic and the atmosphere was tense. I am sure that he thought that chronic fatigue syndrome was just another name for lazybones.

Veronica and I pieced together a family history of similar unexplained ailments on her fathers side of the family. There wasn’t anything that we could really put our fingers on apart from, The Spouse’s sister who also had been told she had chronic fatigue syndrome and his mother who had some of Veronica’s symptoms as well. It was hard with a sick child and I was never satisfied with Veronica’s diagnosis of Chronic fatigue syndrome.

In 2007 I started blogging and one of the first blogs I subscribed to was Benefit Scrounging Scum, a British writer who had a rare illness called Ehlers Danlos Syndrome. Over the course of my first year of blogging Bendy girl and I became friends and she suggested that Veronica might have Ehlers Danlos Syndrome as well. I was horrified at the thought that Veronica might have EDS as the illness looked awful and when Veronica also said that she thought that she might have EDS, I was very quick to dismiss her with a firm no, no you don’t have that at all, because quite frankly the thought of Ehlers Danlos Syndrome frightened the shit out of me.

Of course Veronica does have Ehlers Danlos Syndrome and this was confirmed by a visit to the geneticist.

When Veronica received her formal diagnosis from the geneticist, The Spouse’s initial reaction was that the EDS must have come from me as I had a recurring dislocation of my knee from 1993 -1998 and that was the end of it as far as he was concerned. If I tried to talk about the EDS coming from his side of the family I was angrily dismissed and told to stop nagging him. The Spouse did not want to hear about EDS and it took a month or so before he could begin to accept that Veronica’s EDS had possibly come from him.

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. 

Twelve months after Veronica’s diagnosis, The Spouse and David were also diagnosed with Ehlers Danlos Syndrome.

It has been a long journey.

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