This morning I followed  a twitter link to a blog post that asked why do most artists blogs fail?

I commented with Interesting point but it all depends on how you measure success. I am an artist and I have a successful blog as well.

So this morning the ideas have meshed and I need to ask the question,

“How do you measure success?”

This time last year I measured my success by my ability to keep those I loved, alive and safe from harm.

I failed to keep my mother alive. The cancer that consumed her was  too strong and the strength of my love was not enough to save her.

My love was strong enough to let her go peacefully though and Veronica writes about it beautifully here.

I failed to protect my daughter from my brother and in his pain he lashed out bitterly at my girl and wounded her deeply.

I am an only child.

I am an orphan.

I am motherless.

I am successful.

We have survived the first year and my son is alive.

I kept my son alive in those dark months following the death of his Grandmother. It was touch and go there for a while and I watched him like a hawk.

I didn’t restrain him when he punched the walls.

I screamed back at him when he screamed his anguish at me. I held him as he cried like a baby and my tears mingled with his, I fed him pizza and let him sleep and protected him as best I could.

How do you tell a 15 year old that grief will pass when you are so immersed in the same grief and the tunnel is too long for even the tiniest glimmer of light?

I managed to get through this last year because of my blog. I could write out my grief here. When there was a deathly silence after the funeral and only my closest friend rang me, I came to my blog for solace. When my head was going to explode with all the words I needed to say I came to my blog.

And you listened. You sent me chocolate and clippies, classical music and cards. You commissioned my art work and made me think of renewal. You posted photos on your blogs for me and You held me close and let me cry. You filled my inbox with  emails and when there werent any words You hugged me and now we are here together.

My blog is successful and that is down to You.

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.

I successfully avoided getting together with my extended family at Christmas.Today we will all be together for the first time since Mum’s funeral. Combined with the fact that I handed the keys to Mum’s house over to the lawyers on Monday has made this past week very emotional.

Tears are never very far from the surface and my men are tiptoeing around me lest I rip their heads off.

Veronica has been busily disagreeing with a “hate blogger” which has provided me with a much needed distraction from myself. The comments section of that blog is a hoot. Accusations, sweeping assumptions,aspersions and arseholiness are the main themes.

It is all very amusing for about five minutes until you realise that it is real people they are ripping on. I am very proud of Vonnie for standing up for what she believes in and loudly saying that by our silence we are giving these stupid hate bloggers more power. Personally I believe in Karma and I cant be bothered with the small mindedness of chicken liver and her pathetic cronies but I will stand shoulder to shoulder with my daughter and say this crap shouldn’t be tolerated.

David is aghast at the ramming and subsequent sinking of the Ady Gil by the Japanese security ship the Shonnan Maru. The Japanese are killing whales in Australian territorial waters and our government is hoping that by ignoring the problem, it will just go away.

I have been very impressed by my son’s articulate and passionate response to the sinking of the Ady Gil. David would love to join the Sea Shepherd’s crew and be actively involved but the ships are vegan and my son is honest enough to admit that he isn’t quite that committed. Yet.

There is a rally to support  Sea Shepherd at the Abel Tasman Memorial fountain at Salamanca at 11 am on Saturday the 16th of January.David is keen to attend his first environmental/political rally.

I am very proud of both my children for passionately standing up for what they believe in.

Thankyou for the response to my video of Harry and the pigs. Jientje and Barbara have asked me to make some more videos and so I will. What sort of things would the rest of you lovely people like to see?

I have had the camera out a bit this past week and I think that I might have enough decent shots to post a couple of photos later on this week.

Lastly I want to thank you all my dear internets. I really don’t know how I would have gotten through the last six months without your support. Thankyou.

Sometimes I will sit here and the words just spill out onto the page faster than I can type them. The piece of writing takes on a small life of its own and all the words fit together nicely.

Other times I will be interrupted and lose my train of thought so many times that, I either just give up and save the piece to my drafts folder or I struggle along clumsily, placing all the wrong words in a crooked line.

Often I will read something my daughter has written and the powerful beauty of her words will take my breath away. I will start to cry as I nod yes to her words, and then with her pain ringing in my ears I end up here trying to articulate my own.

Veronica will be 21 on Thursday. Veronica’s 21st birthday was the milestone that Mum was aiming for. I am struggling to contain my bitterness that we lost Mum to a cancer she should never have had. I am so sad for Veronica that her birthday will be such a difficult day without Mum.

Normally we would have planned a celebration. There would have been lots of food and music, laughter and joy. Now there is only sadness and ashes.I am bitter that the joy has been stolen from my child.

Veronica and I are going out for lunch to our favourite Japanese restaurant tomorrow, just us two together.

Tomorrow is Remembrance Day (11 November) marks the anniversary of the armistice which ended the First World War (1914–18). Each year Australians observe one minute silence at 11 am on 11 November, in memory of those who died or suffered in all wars and armed conflicts.

I wonder what we will be remembering?

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.

Hmmm am amazed that you cant write 40 words yet you can type till the cows come home…. is this just writing for profit or just a sympathy blog………..god only knows

For fucks sake arsehole, if you actually read the post it is glaringly obvious that Veronica isn’t after sympathy. But of course self centred dickheads like you only see what they want to see. Leaving a nasty,anonymous comment is a cowardly, low act and tells me all I need to know about what sort of person you really are.

Achelois, a lovely English blogger has written about trolls in her latest post The Internet Bully & A Request her post is well worth reading.

I hadn’t really thought about trolls being bullies. I had just thought that they were a shadowy sub-species, sort of a cross between Gollum and Dr Phil. Full of useless advice and observations delivered in a slithery tone of voice.

“Oh yessss my precioussss you is not broken. You issssss pretending.You neeedsssss to get a real job and sssstop writing on the internetsssss.”

I have written a formal comment policy for my blog. It is up there at the top of the page. So in keeping with my current policy I will now edit anyonetoblog’s comment to amuse myself. Even though the comment wasn’t left on my blog, they harassed my child and as such only deserve my contempt. Veronica’s father’s feelings are quite unprintable.

Hmmm I am amazed by you.  you cant write 40 words without falling apart, dont worry writing is overrated as evidenced by my own pathetic attempt.  you can type away till the cows come home I adore you.….you should be writing for profit have you considered a career in journalism. just a sympathetic word or two from you will be enough to make me happy……..god only knows i couldn’t manage like you do.

There now, that is a much nicer comment.

Now on to some happier stuff. My friend Robin took some photos of my work and I have added a ceramic gallery to my blog as well. The photos are all thumbnails and you can click on them to make them a bit larger. The images are only a small selection of my work and I will be adding to the gallery as I find the time to photograph any new work.

You might remember that I was having an exhibition at the Lady Franklin Gallery in October. Unfortunately I had to cancel that in June because I just didn’t have the energy to think about an exhibition at that point in time. I have been invited to take part in a group exhibiton tentatively planned for November.Yay. So I have enough work lined up to keep me busy for months.

Remember the platters that I was working on last month? I have fired two of them and I am pleased with the results. They are gutsy pieces with a raw energy that make me feel a tiny bit hopeful.

These handbuilt platters allow me the freedom to just chuck some clay around and have some fun as well as giving me a large surface area to experiment with a range of different glazes. If you want to know what any of the glazes are, or how I got that interesting crawling  just ask me in the comment section and I will share the recipes.

I will finish up with a piece I made for my Mother. Mum loved this little vase and it will now be my inspiration for a series of  its own.

*****

It’s EDS awareness month, which I am doubting is taken seriously enough in Australia. Goodness knows that doctors everywhere seem to be hideously undereducated about EDS.

We are not freaks. Not all of us can contort ourselves into a tiny little package, nor does ‘skin involvement’ necessarily mean that we can stretch our skin great amounts. My skin involvement is simply a bunch of stretchmarks showing up for no reason at all and getting worse, despite me not gaining any weight, the worst of them are at the back of my knees. I injure easily, take forever to heal and my scars stay purple for ages, before turning silver and widening/raising (there is a medical word here that I have forgotten). Also, you can generally find bruises all over me, even if I haven’t done anything to myself. My most recent ones were on the back of my hand (seriously, wtf?) and an orange sized one on the back of my calf. I’m also stretchy in my skin, but with everything else, it seems like nothing much. Sigh

Most of us don’t even realise we are different when our fingers bend back further and our elbows hyper-extend. I showed my brother a photo album of EDS photos the other day, only to have him reply ‘What’s so special about that? And that? And that one?’ Well nothing, IF YOU HAVE EDS. If you don’t, you’re left looking at the flexi people and thinking, ‘that looks like it hurts.’

I think one of the most common misconceptions about EDS is that our dislocations don’t hurt. Unfortunately, our dislocations DO hurt just as much as a sport/injury induced dislocation that you might have suffered. Even more unfortunately, our dislocations happen more easily and more often that normal people. It’s just the way it goes.

There is a huge range of abilities within the same EDS spectrum. Some people are only very mildly affected, while others may experience worse symptoms and be unable to do everyday things.

I suppose that it makes sense that I am having a crash* in the middle of EDS awareness month. What better way to make everyone aware than feeling like shit for a while? Not a very pleasant way, unfortunately.

Oh well. I do know that a bunch of Tasmanian doctors are getting a crash course in EDS management simply because of my diagnosis. Like BendyGirl said, if me getting a diagnosis helps just one other person going through what I’m going through, then it’s worth it. It sucks, but it sucks more to be told it’s all in your head.

Video via BendyGirl.

To find out more about EDS and HMS (Hypermobility Syndrome), you can visit here or here.

*A crash generally happens when I’ve been pushing myself too hard. Getting over one pre children used to leave me in bed for a week, just sleeping and resting. Post children is a slightly different matter, as bed rest is something hard to come by. I reckon this crash is just caused by 4+ months of sleepless nights catching up with me (late pregnancy is not conducive to sleeping through the night any more than having a newborn baby) and keeping the household running/fed/clean(ish).

This is hard to write because the story is so long, so full of heartache, frustration, fear, anger, lots of anger and finally a numb acceptance of, “Well this is how things are going to be, best just get on with it..         “So I will just outline the bare bones of our story for now..

In february 2002, when Veronica was 13 she complained of a sore hip, bursitis was the initial diagnosis and Von ended up on crutches for a few weeks. Then Vonnie had a fall at school, hit her head and developed a headache that just wouldn’t go away. Veronica was then struck down with a mysterious virus that had the identical debilitating symptoms of glandular fever. Veronica was very very sick.

So with my teenage daughter experiencing painful joints, a constant headache, nausea, night sweats, general weakness and malaise, I was beginning to become very worried. The best description that I can give of how sick Vonnie was, is for you to imagine Ross River virus/glandular fever/lupus all at once.

It was about this time (April or May) that we jumped onto the medical roundabout and at the end of the ride I had formed the opinion that most doctors are twats. In my more furious moments at home, I would refer to the specialist of the moment as a ‘stupid fucker’, ‘condescending shithead’ and other terms of endearment…Veronica has written about this here in a post aptly titled, “I dont look sick.”

At the end of 2002 after all Veronica’s blood tests had returned as normal. We were told that it was Chronic Fatigue Syndrome and to go home and “Deal with it”

And deal with it we did. Veronica was always a high achiever at school and she didn’t let a little thing like a chronic illness stop her from participating fully in all the stuff that her school had to offer. She was a straight A student who played sport, was in the physically demanding, Rock Eisteddfod and had  an active social life as well as a good lot of chores to do at home.

In her final term of year nine, after a few months of being reasonably well, Veronica became really ill again, with terrible joint pain, headaches, nausea and a grinding fatigue. Our GP prescribed something for migraines and told Veronica and I that it was a CFS flare-up and we should expect them from time to time.

So Veronica went back to school, thinking that it was a flare-up and tried to make the best of it. When in fact she had contracted glandular fever.

Writing this now  years later I can’t believe that my 14 year old daughter went to school with glandular fever and still managed  to ace all her subjects.. *sigh*

Seven years later we are still no closer to getting a diagnosis for Veronica.

Until Monday.

On Moday I took Vonnie to what we thought was a quick trip to a physiotherapist  to get a brace to support her pregnant belly. Here is a chunk that I have lifted from Vonnie’s blog post describing the physiotherapist’s reactions to Veronica..

According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.

So.

We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.

Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.

My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.

I got put in the ‘too hard’ basket.

So, finally after nearly 7 years some things are starting to gel. Some pieces of Veronica’s health puzzle are falling into place. We are off to our GP again tomorrow  and Veronica is going to discuss the possiblity that she might have EDS. Ehlers Danlos Syndrome..

I am a tad worried now…

To be continued……..

I wanted to share this with you for a couple of reasons. One being that Veronica in her 100th post mentioned that she grew up in a house without running water.Two I was in the middle of the rather complicated and time consuming washing routine, when Ronni rang asking could I look after Amy for a bit. Veronica was sick and needed a break.

I gladly abandoned the washing in favour of my gorgeous granddaughter. Veronica did look unwell. Actually Veronica has looked unwell since 2002, but that is another story.

I am getting GET OFF the computer looks from the spouse, so I will leave this unfinished. I will tell more about my experiences raising children in a tapless house. tomorrow.

cheers kim.