<![CDATA[My CRPS Journey - Blog]]>Mon, 16 Nov 2015 13:03:49 -0800Weebly<![CDATA[Whinges, Letters...and WOW...]]>Thu, 15 May 2014 10:26:03 GMThttp://laurascrpsjourney.weebly.com/blog/whinges-lettersand-wowAnyone reading this who knows me will have in some way been subjected to my gripes recently on the mess the Federal Government are trying to make of - among other things - the healthcare system, the welfare system, Medicare, and goodness knows what else.

For anyone visiting my blog from foreign shores - until now we have had what I consider a pretty decent system. We also - thanks to the last Labor Government in general and wonderful individuals like my local MP Jenny Macklin in particular - have had the National Disability Insurance Scheme to look forward to. I say had, because the likes of Prime Minister Tony Abbott, Treasurer Joe Hockey and Social Services Minister Kevin Andrews seem intent on destroying these vital services and taking away from those who can least afford it. They wish to introduce co-payments for seeing one's GP, for each prescription we fill. 

They also want to subject younger recipients of the Disability Support Pension to Independent (read: with Centrelink's best interests at heart) Medical Reviews as it seems we should all be either working or studying - incidentally, they also want to raise university fees, so how we're supposed to afford that study I'm not sure. Oh - and let us not forget the "incentives" we apparently need in order to work. I've spent the last six years wishing with my entire being that I could work a proper job, and I've no doubt that the vast majority of others on the DSP as well as those on Youth Allowance and Newstart are exactly the same. It's true that I have 'Bubbles' - but that is a long way from really working. Even in a good week, I'm lucky to do more than three or four hours, and can go two or three weeks being unable to even wrap a bar of soap or sew a few stitches. I can't leave the house independently, even on a good day I'm in severe pain 24/7 and my body rarely lets me operate for more than 10-15 minutes without taking a rest break. 

WHAT IS WRONG with our leaders that they think its a choice to live this way? 


The upshot of all this was me getting extremely pissed off the other night, and writing a letter to The Age, one of the main newspapers here in Melbourne.

Indescribable insult
For those of us with serious illness and disability that get in the way of (further) study and work, please don't assume we'd rather have a ''free ride'' on Centrelink. When will the Kevin Andrews of this world realise that it's not an ''incentive to work'' we need, it is steps to make workplaces accessible and help for employers to support the needs of disabled workers.

I sustained a minor knee injury at age 14 that led to my developing the crippling neurological disease complex regional pain syndrome. From the age of four, I had dreamt of becoming a veterinarian. I fought increasingly severe pain through high school and five years of university until I reached my goal. Barely one year later saw me almost wheelchair bound, and another fighting for my life. I am now 29 and although I've been in receipt of the DSP for six years (meaning I may be one of many subjected to the ''independent medical reviews''), I have the shame and frustration of having to move back in with my parents and be reliant on them for transport, help around the house and much of my medical costs.

It is a massive, indescribable insult for our leaders to sit on their high horses and suggest that I and countless others opt for this lifestyle as a matter of choice. Mr Andrews, you are more than welcome to my $842.80 a fortnight. Provided you are willing to take my disability and 24/7 pain, too.

Laura Black, Eltham

Read more: http://www.theage.com.au/comment/the-age-letters/pain-of-dying-is-loss-of-control-of-ones-destiny-20140512-385wr.html#ixzz31mKEWAka

I've had an amazing response from friends - but was even more amazed today to receive a letter from Vicki Ward, our local Labor Candidate. Incredible to know that my words have been seen and heard by some of those who really matter.

<![CDATA[New Years and (sort of) New Beginnings? ]]>Mon, 20 Jan 2014 11:28:17 GMThttp://laurascrpsjourney.weebly.com/blog/new-years-and-sort-of-new-beginningsI've neglected this blog - yet again. Yet again - I promise that I will try to keep up with it more diligently, but we'll see how that pans out. 

I made some HUGE changes to my life through mid and late 2013. For quite a long time now, I've been using my teddy bears and other crafts as a means of distraction from my pain, and also to help keep my hands as strong and mobile as I can. I fought hard to win them back from the CRPS, and I want to keep things that way. As well as my bears, I dabbled a wee bit with making soaps and other body products - just as gifts for a couple of friends.  I was encouraged by a lot of people to sell what I was making - and so Bubbles, Bears & Other Wares was born. I might only be able to work at it for ten minutes one day, thirty minutes another... maybe two hours on a really, really good day. But it has given back some meaning and purpose to my life. I will always have some grief for my veterinary career that will never be - but it has been something of a salve for that wound.

With these new plans, dreams and aspirations, New Year 2014 should have been a happy occasion. Unfortunately it didn't go quite as planned... the story of my life really. On the morning of Sunday 29th December I got up feeling sick and sore. Not just a wee bit off, but like I'd been run over by an entire fleet of buses. My whole body ached, my head was splitting and I had a fever. Sunday evening I felt worse. Had a shower, went to bed and actually went to sleep, a real rarity for me - and a sign that I'm not at all well. Sometime around midnight, I woke feeling so ill I was afraid. Anyone who knows me well knows that to keep me in hospital, my doctors have almost to chain me to the bed, yet that night I woke my parents and begged my Mum to take me to hospital. With a splitting head, incredibly sore neck and a 40°C fever, I was worried more than anything that I had meningitis again - something that kept me hospitalised for a couple of weeks in January 2012. As we were sitting in the waiting room at the hospital, I felt my leg getting hotter and hotter. I rolled my trouser leg up to find that my right thigh and knee were now a swollen, glaring angry hot red, and very clearly infected. I don't recall much of the rest of the night - or indeed the next day or so. I was filled up with IV fluids (2 1/2 litres, I was so badly dehydrated!) and antibiotics, spent three days in hospital and another five at home with 'Hospital in the Home' so that I could continue the IV antibiotics without having to be IN hospital. Now on the mend again, though still feeling rather tired and run down.  ]]>
<![CDATA[Anniversaries]]>Thu, 13 Jun 2013 13:13:27 GMThttp://laurascrpsjourney.weebly.com/blog/anniversariesThe last week has been hard, but there are also good points. Last weekend was Queen's Birthday Weekend here, and marks fourteen very long years since the hiking trip that saw me hurt my hurt my knee. Although it took another six years for me to find a diagnosis, we now know that it was that injury, and the subsequent 'clean-up' surgery, that triggered my CRPS.

Because of CRPS, I have some of the best friends I could ever ask for. People I would never have met in other circumstances. 

It has also been a surprisingly good teacher. What it has taught me is that I am strong. Stronger than I could ever have imagined. I have lived half my live in severe pain, but I am still here and still fighting. I spent many, many months critically underweight, seriously depressed and near death and I have survived. It has taught me patience, it has taught me kindness, and empathy. CRPS has taught me to be a much better person.]]>
<![CDATA[Plans... lots of em!]]>Sat, 25 May 2013 14:19:27 GMThttp://laurascrpsjourney.weebly.com/blog/plans-lots-of-emI've been struggling for a wee while now with the fact that not only will I not practise as a vet, I'm unlikely to be using my degree at all any time in the near future. My fatigue in particular makes driving impossible, and my pain and general health makes it difficult to predict how I will be hour-to-hour, never mind day-to-day or week-to-week.

Instead, I've decided to take a big breath, an even bigger jump and I'm going to have a go at starting my own business. I've been making and selling bears for a long time, and a couple of years ago started making soaps and lotions as gifts for friends. Said friends keep encouraging me to sell my products, so that's just what I've decided to do.

It's likely to be challenging - I'm not sure how much demand I will have, or how well I will manage that... but I know it will be good for me. I know that I need that mental 
<![CDATA[April 17th, 2013]]>Tue, 16 Apr 2013 22:41:28 GMThttp://laurascrpsjourney.weebly.com/blog/may-05th-2013I've been guilty of neglecting this wee blog for far too long. I promise myself to update, I start writing and my thoughts drift off into the ether somewhere, never to be found again. Then it becomes overly negative, or too clinical, or too 'whatever', and by the time I come back to it time has leapt forward another few days, weeks or months and the post is somewhat obsolete.

That said, the last year or so has led me on one fairly hellish adventure. 

In August last year I tried my fifth - and what will undoubtedly be my final - ketamine infusion. Even now I can remember almost nothing of it beyond watching my nurse flush blood from my IV line. I have vague memories of seeing flashing lights and stars, and starting to laugh uncontrollably - I know my poor Dad who was beside my bed said later he thought I was joking, then he became very frightened for me when he realised I wasn't. At some point after that my muscles began to twitch and jerk, throwing my whole body into intense spasms that lasted for more than 48 hours. 

Neither my parents nor my doctor will tell me what went on during those few days, just that I am 'lucky not to remember'. It's episodes like this that really bring home how hard a disease like this is - not just for those of us who feel the physical pain, but those who care for us and those around us. Our families, our close friends. Even the doctors we form long term bonds with through our treatments. 

More recently, I've been seeing a couple of new doctors. I've written here before about having problems with fainting, with funny fevers and so on. It seems that they are indeed a problem with my autonomic nervous system - and the line of thought now is that I have an underlying genetic disease called Ehlers Danlos Syndrome. EDS interferes with formation of collagen- one of the 'building blocks' of skin, muscle, ligaments, organs. It accounts for a lot of things that we've noticed over the years - my very loose/flexible joints, on and off joint pains, my poor healing, easy bruising and so on.
<![CDATA[A Journey of a Thousand Miles Begins With a Single Step]]>Mon, 11 Jun 2012 10:52:41 GMThttp://laurascrpsjourney.weebly.com/blog/a-journey-of-a-thousand-miles-begins-with-a-single-stepQueen's Birthday long weekend is always a hard one for me, because it marks yet another year since my original knee injury; that simple, clumsy fall that set me on the road to full blown Complex Regional Pain Syndrome of a degree that few in the medical profession have ever encountered.

In the thirteen years since my original injury, I've seen myself travel from a happy, fit, healthy 14 year old - to a young woman crippled by pain at the age of just 27. Walking this road with CRPS as a travelling partner has seen me lose a lot from my life: my health, my ability to walk, eat normally, sleep. It's taken many of my friends, many of the activities I used to enjoy, even my career - almost before it had a chance to begin. At one time it even threatened to take my life.

But then I look at what CRPS has give me. I didn't have normal teenage years, but in their place I think - or at least hope - I learned a wisdom, a compassion and empathy that doesn't come without having a severe chronic illness or experiencing severe pain day in, day out for months or years at a time. Along this journey, I have met some of the most beautiful people and made wonderful friends. It hurts me to see your suffering  - to know that you too hurt like this - but without this beast of a disease we would not have met and I would never have known the gentle support and unconditional friendship that keeps me going through the darkest hours.

I know now that I don't have to hide the pain away and pretend that everything is fine when it isn't. It's brought me closer to my parents and they've taught me that it's okay sometimes to say "I hurt". 

There is no mistaking that I am scared. Despite everything my doctors try, I am still in an enormous amount of pain on a daily basis - sometimes so severe that I black out. I have a lot of other issues currently occurring - daily fevers, severe spasms/dystonia that is becoming progressively worse, migraines - all possibly CRPS related, but need to be investigated further.
<![CDATA[Hate, hate, hate CRPS...]]>Sat, 26 May 2012 11:02:33 GMThttp://laurascrpsjourney.weebly.com/blog/hate-hate-hate-crpsI know that I should always be thankful for what I have - a roof over my head, parents and friends who care greatly about me. Fantastic doctors. I try daily to distract myself from the pain, from the nausea and exhaustion with meditation, music, art and craft. 

But I'm scared. For the last six weeks or so my body has been throwing itself into massive spasms. Like my legs used to do before I had my baclofen pump implanted, but my entire body is involved. All four limbs, my trunk, my neck, my face. I tremor, I shake, I go rigid... and then I 'flop'. Sometimes there's an obvious trigger, like fine motor movements - if I'm sewing or drawing for too long I can feel my hand starting to go into spasm, then my arm, then the corner of my mouth. If I'm lucky it stops there. If I'm not, it doesn't...

At its worst, it feels like it's going to rip my limbs from my body. The photo is a relatively minor spasm of my arm and face - and even there you can see the way my arm is being twisted and my face is pulled.

I'm also vomiting a LOT. I have to have another ECG to check whether or not I can have a med trial for the gastroparesis. The problem is that it can cause a prolonged QT interval - which can in rare cases cause cardiac arrhythmia and death. The other problem is that I already HAVE a prolonged QT interval. Which really means that I shouldn't be taking it at all. But short of a feeding tube, which I really don't want, there aren't really any other options. I'm just about maintaining my weight eating, so it's not crucial, but I'm bloody miserable as I am. Anything I eat, often anything I drink, makes me bloat to the extent that I look eight or nine months pregnant. I get a lot of abdominal pain. I have to compromise on my pain relief, because the opioids especially slow down my stomach - and my GI tract as a whole. 

My pain is now almost intractable, and I'm almost totally housebound. 
<![CDATA[Anticlimaxes...]]>Sun, 29 Apr 2012 12:46:02 GMThttp://laurascrpsjourney.weebly.com/blog/anticlimaxesSo much for surgery. On Thursday morning I received a phone call from my SCS tech, telling me that he didn't think lead damage or current leakage was my primary problem, and therefore that replacing my leads wasn't going to solve my pain issues. After he'd spoken to my pain doctor, the plan was revised somewhat - my doctor would now try to move my leads to stop the area around my spinal fractures being stimulated.

Nice plan. After arriving at the hospital, I sat down with my tech - or he sat down with me I guess, given that I'm near-permanently seated - and we tested out a few of the settings on my stim. We found that the larger and more recently placed of my two leads is the one responsible for the pain. And of course this is the one that *can't* be moved. When it was implanted last year, the doctor putting it used so much force getting it in that he almost shoved me up the table. It caused a lot of pain due to nerve root bruising, and left me with a leg that went numb and became progressively weaker after surgery. It certainly wasn't going to go any further without really risking damage, and my doctor made the call not to go ahead. 

That took us to 'Plan B'. Originally the intention had been that I would have surgery, then a couple of days later be transferred for a ketamine infusion. Ketamine makes me quite sick and in the past I have shifted a lead by vomiting, so I asked to delay it. With no surgery, it seemed reasonable to go ahead with the ket and this hospital initially were happy to do it. Then they weren't. Then they were. Then they weren't. That was the final call, largely because they don't have a HDU or ICU in case of something going wrong. So a three day hospital stay for not much achieved. At least it was a chance to catch up with some friendly staff - though there's something of a depressing side to being so well known that]]>
<![CDATA[Countdown...]]>Sun, 22 Apr 2012 06:39:42 GMThttp://laurascrpsjourney.weebly.com/blog/countdownThis week scares me. On Thursday I am having surgery to try to repair my spinal cord stimulator. 

At the moment, it's the only thing to provide any relief from the pain radiating from my back and down my legs. Problem is that when I fractured my back last year, we think I damaged the SCS leads. Which means that now whenever I turn it on, I have intense pain through my back. It's become a juggling game - I turn the unit on for long enough to take the edge off the leg pain, or until the pain in my back starts to arc up, whichever happens first. It's usually the back pain, so it's not really a viable situation. 

My last SCS experience was a nightmare. I don't know if there was not enough local anaesthetic used, or not given time to work, but I felt everything - every cut, every tug on the scar tissue, on the leads. It was excruciatingly painful, and I had nightmares for months. The thought of going back again terrifies me.

I'm also to have another ketamine infusion. My last one of those wasn't exactly a holiday either... it was so horrendous I ended up leaving hospital early and making a formal complaint against two of the nursing staff. 

This is my last real hope at pain relief, and if it doesn't work I'm not sure what to do if it doesn't work. Part of me is scared, part of me just doesn't care any more. I know how dangerous that indifference is, but I don't know what to do about it. ]]>
<![CDATA[Post Title.]]>Sun, 08 Apr 2012 05:49:45 GMThttp://laurascrpsjourney.weebly.com/blog/post-title-click-and-type-to-edit1Gosh but I hate gastroparesis. The nausea is bad enough, but I'm now back to vomiting every meal, everything I try to drink. My body is playing games with me, and it seems that just contemplating food is enough to make me bloat. Not just a little bit gassy either; my belly is so swollen that I look as though I might give birth at any second...

Just a week and a half until I see my GI. ]]>