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It is called loss. It is an agony.

Having lost five children at various stages of pregnancy – i cannot share more than this woman’s story, because i can only agree. I have encountered some compassion, but so much more of a callous system, with overworked and indifferent staff. But to the very few who helped – you helped me survive my own hell. Between you and my dear support friends, i made it.

LOSING a baby through miscarriage is a traumatic experience, but one Adelaide woman says her treatment in hospital made everything much worse.

via My fight for dignity in an uncaring system | Adelaide Now.

The middle becomes the beginning

or why we are welcome to third day, a day early. I have just spent two days going through some, umm, less than pleasant symptoms, that left me unable to stand for pain, so severe I was physically sick, constant nausea, aching joints, unable to sleep, dizziness, and sundry other delightful things of similar nature.

The damn patch wasn’t working. So, not only no pain relief, but the start of drug withdrawal. I have learnt two very important things:
1) the patch (when working) is necessary because the pain is now so bad underneath the mask it provides, aka perspective
2) the prospect of coming off the patches is mercifully unlikely, as only a wonder drug or miracle cure could allow that to occur. Merciful, because now I have an understanding of what that process would be like, aka dread – or fear.

So, I have perspective and fear now to counter my gripes about side effects. I am once more sleepless, as new, working patch settles in for its 72 hour sojourn. Oh, did I notice the difference within an hour, two hours. I was even able to attend, albeit gingerly, hydrotherapy a few more hours subsequently.

So, while I know it will cause much teeth gnashing, and sackcloth & ashes to be contemplated as the fashion de jour, nonetheless I feel third night grumbling must cease.

Perspective and fear now balance pain and side effects. Now I know how bad it is underneath the boon, the gift of access to pain relief, (not entire, no, not perfect, and sometimes, not even as effective as I need on the worst days, when some unknown small movement sets EB, evil back, off again).

However, there is only so much it can be expected to do, after all, hence my daily small exercises, the effort to drag this uncooperative body into the bitter cold night to the blissful relief of immersion on water, to strengthen the supporting muscles around the damage, to lessen the strain, to protect what is left. For general health and well being, and oh, that feeling when I enter the water, and gravity stops bothering EB so much…

Acupuncture and a further short physio course upcoming will also help. The strange magic of a simple wheat bag. I am even trying RPG & action based games as additional pain relief, more on that later…

My wheelchair takes so much of the load, though as I get stronger with hydro, perhaps…a little less…but if I could lessen the patch dose vs less wheelchair time, despite fear, I would choose wheelchair every time. Drugs are bad, mm’kay? Except when they aren’t – so no wonder it is so confusing for teens…

So, I am not helpless, not entirely hopeless. In an odd way, this has helped me realise that, and I need to know that. The years ahead, they stretch darkly long at times, when pain, tiredness, and nausea pervade, and despair lurks at the edges of your thinking. Odd, using perspective and fear to help battle despair. I guess the world of the disabled, of chronic pain sufferers, is a very different place. I am most definitely NOT in Kansas anymore, Toto…

So I shall return to the first book in Simon Schama‘s most excellent A History Of Britain, try to muster some traces of rest for small lad’s 7th party at Macca’s tomorrow(real fear!;) ), and bid you all safe journey through your realities:)

Here endeth the rant (well, this one)

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My youngest turns 7 today

Candles spell out the traditional English birt...
Image via Wikipedia

Birthdays happen – with five children, often;) Yet it means what – recognition of another year, yes. To them, a chance for parties and presents, sure. To me, it means more, so much that they cannot understand.

Each birthday is a reminder of the day my life changed utterly, irrevocably. Their new life created a new version of me. Each birth (and each lost sibling, for I never forget my other five) brought me new life, new meaning, new lessons. A mother of one, of two is not the same as a mother of three, or four – or five.

Yet his birth was the most profound of them all. It was the most traumatic. The whole birth was dangerous and traumatic in many ways for us both. I hovered in a place between being and not being, life and death. He did die, and was resurrected. I remember looking over in a haze, receding, the theatre feeling distant, and seeing him held up briefly to me. (Then they needed to save him, i suppose, i did not find out until after what had happened. He stopped breathing on the way to NICU, but the angels that work there gave me my son back).

Oddly, in the moment of eternity that lasted less than a few seconds, lasted forever, stretched into eternity, sharply etched in my memory, we seemed to lock eyes, and I promised him I would try if he would. I had been terribly unhappy at home, all I lived for was my children, now I would fight for them too – for him. I heard a voice telling me I could not leave, calling my name. It was the silver thread back, or so it seemed at the time. My sister friend was calling me back, holding my hand, as anesthetists argued over my head about dosages, someone worried about me, losing me. Their argument struck me as funny at the time…and I owe her my life, in so many ways.

My son had a two week stay in NICU, where he thrived and never looked back. He was vast in a world of miniatures, he thrived there, but he had not thrived in utero, it had been a most difficult pregnancy, I lost weight, was very stressed, and he was underweight at nearly 6 pounds. This was bad enough, but not enough for NICU – but he had been breathing fluid in the three attempts to extract him, in a transverse position, head against the existing Caesarian scar, about to rupture and almost certainly kill us both. The resulting lung infection from drowning in fluid was what he needed to recover from.

I did not thrive post birth, I was torn between two worlds, there and home with my other children – and the distant partner, angry and unsupportive emotionally, who I found then was having an affair with a friend. It is just detail now, then it was soul crushing. Not unexpected, not even unusual, but still, it was too big then. So, I put it aside. My poor ex, so unhappy in himself. I feel sorrow for him now, what a confused place he found himself in. A good man but wounded. That is all of his tale, for that is my side I can share, the rest, that is is his to keep.

I was almost numb with sorrow and exhaustion, recovering from a surgical birth, a hugely difficult Caesarian after a difficult tenth pregnancy. I was visiting the hospital, twenty minutes away, every four hours, like a mechanical device, clockwork automatic, stumbling in a haze. If not for my sister friends, with food and visits, my guardian angels, his godmothers, my own personal support team, I would not have made it.

With their help, and my own determination to help him any way i could, I went, with reserves I did not know I had, refusing painkillers so they would not affect my son through the breast milk I would express in a room, on an impersonal, sterile, not him machine. This dragged through a lifetime, an epoch, a mere week. Any parent with a child in NICU tells you the same, time becomes different, meaningless. This dragged on in a seemingly unending churn of days and nights, light and dark, what did it matter, the alarm said time, go.

Until the precious day he was a week old, and I held him, skin to skin, awkward and oddly scared, with his tubes and oxygen mask to be near his face at all times. I held him, and he turned and fed, naturally, and I cried. Tears streamed down my face, and I didn’t know until a nurse handed my a tissue.

Her silence and understanding I will never forget.

The joyful day I was allowed to stay in with him, to get the doctors to sign off if we were successful feeding overnight, was the day of the mistress calling me to apologize, of confrontation and argument. My relationship with my partner was probably, in hindsight, over from that day, not that I think it ever stood a chance. We did go on to marry, I was numb, so dead inside, but it was inevitably doomed. There is more, so many mistakes on both sides, but let those ghosts lie, for it is not about him any more, ever again, I have forgiven and moved on. He is merely a person who happens to be the much loved father of two of the most important people in my life, and as such, he gets that respect. His failures as a partner to me, mine to him, are history now.

Once my son came home, I began to physically heal. It was years before I felt fully healed, I think when I was on my own again, and could stop and breathe and grieve for what I wished I had known, not what was. Peace, a chance to build a new life.

The accident I had had a few years earlier decided my new life was to take a different form than I imagined, as i deteriorated. So it is, here I am, another birthday. Yes, I have daily chronic pain physically, but not emotionally as I had at his birth. I do not merely exist anymore. I live, fully and joyfully.

I look at all my children with an unceasing sense of joy and wonder. These amazing individuals, these brilliant shining people came from me? Not one of them fails to be a joy.

My son, the only boy after four girls, was a shock to my feminine world, but oh! How wonderful, how lucky it was:) He was my surprise, my bonus, my unexpectedly conceived gift. I am so lucky with all of them, but there is a special sense of extra fortune smiling on me when I look at him, so strong and sturdy, my indestructible prodigy, crawling at 5 mths, running at 7 mths, no surface left unclimbed before he was 1 year old…

I am lucky the accident happened before he was two, but held off really crippling me until now. He was a bundle of anarchy, an intrepid explorer who knew no boundaries, who could count to 100 when he was less than 2, could figure out any damn child proof lock or gate or device invented, and has a mind that even now, astounds me with his leaps of intuitive understanding, especially in logic and maths. I suspect he is, as everyone who sees and knows him says, much like his father and mother in his geeky heritage, his intense absorption in anything computer related, and curious to a fault. He is a curious blend in looks of being both the spitting image of his dad and my brother somehow. I was part of it, dammit, none of them look like me!! Probably for the best;)

perpetual motion

Perpetual motion next to his sisters...

And thank heavens for a 1/3 acre, with swings and cubby house and sand pit and trampolines, dogs to run with, a grandfather on hand who teaches him about wood working in the shed, as his father also does. Male friends of many years, who teach him paper planes, video games, and kicking the ball delights.

Today we have his family party. Next week, his friends party, at McDonalds (by request), and will have to get further invites tomorrow, as ten friends seems to have, as ever in these cases, grown to 14 must haves. (next month, the social butterfly, HRH Princess turns 9, and I shudder at the various plans she is making. Worst is currently a sleepover. Very little sleep is EVER gotten on those damn things, especially by parents and grumpy older sisters, who are actually real dears with them. I wonder if Ms 24 would like to attend? ;) ) )

The real celebration of the event is here, in my heart. I do not think anyone can truly understand the depth of meaning when i say – Happy birthday, my son.

- posted from K9, my companion iPad

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Some days you can’t catch a break

I did catch a virus though, from an evil teen in sharing mode:)

You know those kinds of flu type viruses where even your eyelashes seem to ache, your eyelds are made of lead, and your bones ache? Yeah they go so well with my back issues, but do provide some minor entertainment in providing diffferent symptoms, different aches from chronic pain. Variety, don’t you know.  Avoiding coughing as much as possible, as too pain inducing.

In short, I am whinging and griping as if i had man flu (thankfully it isn’t THAT bad!). I hate my kids having to see me in chronic pain often enough as is, damned if  my baby is going to have his birthday spoiled by me. I hide in my room not to avoid them – but to hide what it is like. It is bad enough what they do see. They shouldn’t have to deal with it too much.

Must be well tomorrow, my baby turns 7, and he wants his mummy’s special home made lemon sweet tart cake. Family party too. Now, this means if i have to damn well crawl into kitchen in morning before he arrives back home from his dad’s, i will be. Nothing will stop me making that cake, and and sitting with him, taking photos as he blows out his candles, and watching as he gets tired and grumpy from presents and spoiling and over tiredness at end of day. His birthday- he can.

I will be tired and grumpy and sick again after that – it won’t matter then:)

Now, to try and sleep for the first time in a few nights (a notoriously bad sleeper, the last two nights have been legends even for me).

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Geeks get the blues too…

Human Experiences, depression/loss of loved one
Image via Wikipedia

Actually, engineers, geeks, whatever you want to call us, tend to get more depression, have mental illnesses, or issues such as autism spectrum disorders, as a higher percentage than other sections of the population.So, a resource targeting us specifically has been started. It shows much promise, but it is self help – we must, as a community, help and support each other, and provide links to resources and advice that we have found works for us.

The objective of this initiative is to make visible that there are many fellow geeks among us who are intimately familiar with depression, anxiety, or bipolar disorder. It helps to know you’re not alone. And it’s not because we’re geeks, but because we’re human. The Australian BeyondBlue site is of course an excellent resource, but, because geeks have a specific work environment, there are also particular challenges in dealing with these issues, and that’s where we feel our group can help with additional insights, tips, and posts from others with experience. Using the logo, we can also make the topic visible at meetings and conferences around the world, ensuring that indeed no geek need feel alone in this, or feel unsupported. They can simply look around and see. Anybody will be able to show their support and understanding, in a kind and non-intrusive manner.

via About | bluehackers.org.

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This could be me writing this…

world wide web
Image by alles-schlumpf via Flickr

The Internet – when did it take oer our lives? When did it take over mine? I asked that question when Facebook scared the hell out of me. Online networks became more important than catching up irl. The acronym we use for in real life. We have reduced life to an acronym, almost dismissively.

I stared into the abyss, and saw the monster too long. I decided to not stop – i do enough drugs (legal medicatinss, thank you) due to my disability to know cold turkey is – well, worse than it is described. Also, i don’t want or need to quit. I need to control, be IN control. So, i took drastic steps.

The odd thing has been how many of my friends have grumbled, gently, mildly, about misisng me on Facebook, mising that flow of information. People who i never thought of as technophiles. Actually, it is the geeks who complain least. They connect with me by other means – sure, mainly via the Internet, but they find me. I am easy to find. Just not conveniently in the flow. Not one of the main social group. Funny. About them – not me – i tend to adopt early, leave first anyway. I am intrigued by new technologies, not by a need to share so much of myself.  Been there, done that, found it unnecessary for me.

I have been the monster though. I have tasted my own drug that i was pushing. So have others.

Say Hello to My Little Friend.

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The audacity of responding to a dope

Joe Biden, Vice President of the United States.
Image via Wikipedia

Remember that a US Senator had the audacity, the awful awful grovelling insensitivity to apologise to BP because the Government demanded rightful restitution for affected people?

Well, every once in a while, Vice President Biden takes that foot out of his mouth and says something powerful and eloquent.

This response to Rep. Joe Barton is one of those times.

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The score today…

Ball-and-stick model of the cortisone molecule...
Image via Wikipedia

Current score :
EB 8.5, (with every thing I can thrown at it)
Me, 0

Home, in much pain, weekend to be spent in bed. Cat scan showed 5 inflamed areas/facets to focus on. Local anaesthetic mixed with cortisone, fine needle injects into spine 5 doses. General region also anaesthatised, and I was sedated.

Now wearing off local, as they warned, much pain, rh leg not working well yet. All expected. Up to two weeks before we know, worst over by weekend, but up to week to recover. There’s the news.

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