Intermittent Self Catheterisation (ISC)

A Girl’s Guide.
to intermittent self catheterisation

Urinary retention is part of the picture for some people with Dysautonomia.  Sometimes, the nerve messages that allow us to pee, don’t work. I am so proud that I can manage my retention myself, thanks in no small part to our in-home continence nurse program here in New Zealand, some googling and a lot of determination!

Learning to self catheterise is one of the hardest things I have done.  Somehow, it is a mental hurdle as well as a technical one.  Even when you have been doing it for a while, there are times when you can’t make it work.  Those times can bring a grown girl to tears.  When that happened for me, my hubster got googling. He passed the iPad through the bathroom door with a quiet “this might help?”. The pictures he found for me helped a little, but I really wished I’d had a more practical guide.

There is nothing so relieving as being able to empty your own bladder. However, when you feel sick, or bending double makes you dizzy, it can rapidly become a stressful situation.   But it is possible!  I and my fellow self-catheterising friends will tell you that once you get used to it, ISC is a proactive skill and a significant personal achievement. It gives you back control of yourself.

For the next two weeks, I am embarking on a new self-catheterisation routine.  Instead of catheterising when I think I have gone into full-blown retention (no pee for two days), I’ll be catheterising after I go to the toilet and measuring my residuals. My urologist wants to see if I am retaining even when I think I have finished peeing.  My bladder picture swings from retention to incontinence.  At the moment, I’m incontinent. It might explain this.  So, because my mind has been full of all the things I will need to do to ‘go mobile’ with my catheterisation, I began to think about how much I have learned in the last two years. I wish there had been a guide that made sense to be back when I began. So I am writing it!  This is for all the newbie cath girls (sorry boys, your process might need to be written up by a guy).

What you will need:

Sterile medical gloves (or sterilised hands)
Catheter (these are supplied in New Zealand by the district nursing service)
Lubrication jelly
A small handheld mirror.
Baby wipes or antibacterial wipes.
Jug (only if you are asked to measure)
A chart and pen (only if you are asked to measure)
A private, lockable location.  You can sit on the toilet or recline in the bath.  When I first started, the bath was easier.  Self catheterisation takes longer than a normal toilet stop. You need to be able to do this uninterrupted.  If you have children and they are very little, set them up in a safe spot for the duration, or even better, have someone watch over them while you are doing your thing.

First, do a vaginal reconnaissance(!)

Before you begin with anything, you’ll need to know where your urethra actually is.  You may be surprised!  I once spent half an hour stabbing my clitoris (ow ow ow!) because I thought my wees came out from what looked like a hole under my clitoral hood.  Uh, nope!  Everyone’s anatomy is different. And the diagrams on the internet aren’t very detailed!  Check out this one.  See?  Not so easy to see what’s what. (Source)

en3009646(I think I shall have to draw something more useful and put it in this post!  Time to shine a light on the subject at hand).
It’s really important to get to know your ‘nether-lands’.  So, to find your urethra, recline in the empty bath with a hand mirror.  Gently stretch the skin on both sides of the invisible centre line that goes from your clitoris to your baby-hole (excuse the basic terminology).  As you stretch along that line sideways with two fingers, look for a tiny opening.  Urethras are very good at hiding and in the beginning, it took me a long time to figure out exactly where mine was!

When you are confident that you know, you are ready to begin.

 

The Girly Bits

 

Gather your materials

…where they will be easy to reach, on a nearby bench or stool. You’ll be one handed, because one of your hands will be holding your ‘nether-lands’ in the right place, so have everything near to the free hand. I am right handed so I use my right hand for all the busy work.

Prepare your girly bits.

Thoroughly clean the areas around the labia with the wipes.  Wipe the inner labia and the area between the inner and outer.  Clean all the way from the clitoris to the poop hole. Always wipe in a downwards motion, never using the same surface of the wipe for a return swoop.  Discard wipes.  Sterilise hands again or snap on new gloves after you have done this.

Get your catheter prepared.

Only open the end of the packaging near the tip of the catheter.   That is the end without the rubber fitting.  It is pointy and has a little hole in it.  Free the end from the packaging and swipe some lubricating jelly on the end of it.  I cover about 3-5cm of the end of the catheter with jelly.  Not so there are globs of it, just so it has a coating.  This will help it slide into the urethra more easily.

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Fold the packaging back over the lubricated end and put it somewhere in easy reach.  (NOTE: If you are using a tube of lubricating jelly, rather than a single use sachet, make sure you never touch the end of the tube with unsterilised hands.  I squeeze a tiny bit out onto my glove and swipe the catheter end through it. This tube should stay with your catheterisation kit, not be used for other purposes).

Just a note on catheters; people develop their own preferences.  The internet picture above shows a short catheter, the photo shows a Nelaton size 12, 40cm catheter. I prefer to use long.  The bigger gauge the catheter is, the faster you will drain, so once you are used to it all, a larger catheter might be your preference. Talk to your continence nurse about which one might be right for you.

Do the business.

You’ll need to be in a position where you can see what you are doing. If you get dizzy, you’ll need to be somewhere safe.  To start with, reclining in the bath was the answer for me.  Now, I perch on the front edge of the toilet seat.   If you are required to measure, position your jug on the floor or bottom of the bath, between your legs. Remove the catheter from it’s sleeve and let the rubber end fall into the jug.  If you are not measuring, you can let the rubber end fall inside the toilet seat.   Keep a good length of catheter up from the toilet bowl though, you’ll need it.

Using one hand, hold back the labia, so you have a good view of that imaginary centre line.

Pointing the catheter in a downwards motion, but pressuring it slightly inward towards you, slowly slide the catheter down along the centre line between clitoris and baby hole. You may or may not have enough sensation to know exactly where the hole is; don’t worry,  practise will help with this part.  When you are at the urethra, (or you think you may be close based on your reconnaissance!) angle the catheter in pointing towards your tail bone.  Repeat this process until you reach it. You will know you have hit the target when the catheter goes in and it stings a little (like that sensation you get if you have a urinary tract infection and you pee) but the sting should be momentary. Feed the catheter in until the wee starts to flow. Eureka!

When the flow slows down,  gently push the catheter in slightly more.  You may have more wee to come, right at the bottom of the bladder.  Do this a few times until you are happy that your bladder feels empty.  Slowly remove the catheter and drop it in the sink. You’ll attend to it soon.

The lost urethra

Pack up.

Gather up the catheterisation kit and return all bits and pieces.  Check the measure on your jug, write it down.  Run tap water through the catheter and shake it out again.  If you plan to re-use the catheter, it will need to be sterilised (microwave sterilisers are great for this) but I recommend a single use when you are just starting out.   Empty jug into the toilet and flush. Remove gloves and dispose of them.   Return your catheterisation kit to its home.  I keep mine in the cupboard next to the toilet.

Recognise Your Brilliance.

Look at yourself in the mirror.  See that person?  She is a total legend.  She deserves certificates and gold medals and pats on the back!  You did it!  You brilliant creature you!  Sadly, you won’t be able to share this most excellent achievement with many, so your feedback will be minimal, but I want you to know that I know just how amazing you are!  That thing you did just there?  Skill!

Just a wee Problem

On my last visit to hospital, I was suffering with a pseudo-obstruction, my bladder had also stopped working. I was admitted through the emergency department and was to go straight to the gastroenterology ward.  The ED staff must have been busy, because on this occasion they decided the ward staff could catheterise me.  Usually, I arrive to the ward already done. By the time I made it up to the ward I’d been retaining wee for two and a half days.  It was excruciating, even without the pseudo obstruction pain and a tummy that was distended further than a ten month pregnancy. When the nurse arrived to settle me in, I whispered awkwardly that I was very sorry, but I had my period and I was in desperate need to be catheterised, “so, so sorry”.  I felt embarassed that she would be doing it, apologetic that she had to.  She shrugged, came back with the catheter and a sachet of lube.  “You do this at home all the time, no reason why you can’t do it now” she said, turned on her heel and left me to it.

I was so shocked I couldn’t speak.  I knew I needed to sort it out straight away. The pain and discomfort was not about to release me just because I was upset.  I didn’t have the emotional energy to fight with her. I took a big shuddery breath,  picked up the gear and inched my way over to the bathroom.  By the time I got myself down onto the toilet, I was in tears.  But even if I hadn’t been crying, I couldn’t even see my girly bits because of the abdominal distention. I took a big breath and did it the way I always do. I imagined I could see what I was doing.
And, there!  I got that catheter in, first go, sight unseen!
The relief was incredible. I’m sure I was holding more than 1L of pee!  It took a very long time to drain my bladder.  But as it drained away I felt so proud of myself. Some things are hard to explain, but when you feel out of control with your body, victories like this one feel pretty important. I would have liked to have run the corridors of that ward shouting “Guess what I did?!  Bloody marvellous, I am!”  I would have liked to have shoved that catheter up that nurse’s nose. That’s what!  But I got myself back to bed, curled up and cried a little bit more.

Wee problems are not really that wee, at all.

 

O Frabjous Day!

Callooh!  Callay!  He chortled in his joy!

O Frabjous Day. Illustration by Mike Amend source: http://www.elfwood.com/u/mykeamend/image/d7957840-270e-11e4-9ecf-d547aae57bd2/o-frabjous-day
O Frabjous Day.
Illustration by Mike Amend
source: http://www.elfwood.com/u/mykeamend/image/d7957840-270e-11e4-9ecf-d547aae57bd2/o-frabjous-day

___________________________________________________________________

A week ago, I had my first Methylprednisolone infusion. It’s been an interesting week!
It’s as if, last Monday, someone beamed me up, out of the foggy, high gravity atmosphere of planet Pandysautonomia and re-homed me somewhere different.  Somewhere the air is clear and the sun is shining.  I must actually be a native of this new planet, because I feel so good here.  Like all of nature was built for my body’s needs.  The air, the water, the food, the beauty.  It feels like I’ve been here before, it feels right.  Have I slain the beast?  Is it possible that this could be the beginning of the end?

I was so hopeful I would respond to steroids, because that bodes well for my panDysautonomia to have an auto-immune origin.  I was also a little fearful that my high hopes would make me want to be well so bad that I would somatise wellness (is that possible?).  But there is no doubt in my mind that what I am experiencing is real.  I feel better.  SO much better.  I have been DOING things!  Supermarket shopping without having to stop and sit!  Walking my son to swimming, and back again, without my cane!  Strolling around Bunnings with my family! Taking the kids to the beach, without my hubster! Helping out with household tasks!  I know that is a lot of exclamation marks, but if you were me, you’d be full of superlative expression too!

Every now and then, I catch my hubster’s eye and the tears well up, for both of us. There is no joy like being able to help, to be part of things, to be effective.  I am marvelling at my body.  Wiggling my hips and jiggling to the beat. To dance!  It is sublime. And, just now, I mounted our stairs.  This is something that I have done with difficulty every single time since we moved in six years ago.  The bannister has been my help; I heave myself up with my arms and my legs, pausing to rest along the way. But just now?  I skipped up the inside of the stairwell,  no bannister for support, no pausing.  I made it the whole way, body upright, under my own steam!

Feeling like this, is frabjous news!

Feeling like this makes me realise anew, just how incredibly awful I felt before.

And it horrifies me that there are people feeling like I have felt for the past six years.  Millions of them. Feeling like that and facing life regardless. Feeling like they are swimming through concrete as they fight for wakefulness each morning.  Like their heads are fashioned not of blood and bone and brain, but stone.  Like their will is too weak to force their legs to stand, to force their faces to smile, to force themselves again and again simply to do the smallest of tasks.  It terrifies me that I might feel that way again myself.  I try not to dwell on that.  If this is temporary, then I am making the most of it!  If it is a sign of better things to come; wahoooo!

One of the big changes for me is that my pelvic and hip pain has disappeared.  I’d had x-rays just before Christmas, in case the pain I was experiencing was due to a structural problem.  They were all clear.  So our conclusion was that the old nerve pain from my previous surgery was back.  It crept in a year ago, stealing a spot along my synapses and shouting out orders.  Radiating down my leg and so insistent that I often couldn’t get to sleep.  I carefully limited how often I took painkillers because I hate to rely on them. I knew I was in pain, but I didn’t realise how debilitating the pain was.  It subversively stole my objectivity and didn’t stop until it had a good portion of my mobility, too.  Last Monday, when the immunologist asked me for a state of play before my infusion, she wanted to know where I would rate that pain on a scale of ten.  Ten being worst.  I rated it at 4.   Now that it is gone I can see how very much higher I should have rated it.  That pain dictated so much about my sense of wellbeing, but I’ve been so long without the perspective of being pain-free, I had no idea how bad it was.  In hindsight, I’d call that pain a 7.  At it’s worst, a 9.   And without it the smiles keep stretching slowly across my face.  How much easier it is to be happy when you are pain free.

Other things I have noticed that make me happy:

  • less dizziness (YES!  six years of being dizzy every time you move wears you down)
  • better temperature regulation
  • better perfusion in my feet and hands, less numbness and prickly pins and needles.
  • Easier digestion (the post prandial bloating still happens, but it is resolving itself faster)
  • more sweating at the right times (like when I am hot) and in places that haven’t sweated for a while.
  • less dry eyes and mouth
  • no nausea (win!)
  • I can walk for more than ten minutes
  • More energy
  • I am craving sweet foods less (I think this is because I have more energy)
  • Less of the regular sore throats

 

On the down side I have noticed

  • higher heart rates
  • higher blood pressure
  • problems with my eyesight
  • no significant improvement with my bladder or bowel
  • I tire quickly and need to take naps still
  • my medications might be a bit much for me now

 

When I was a little girl, one of my favourite poems was The Jabberwocky, by Lewis Carroll.  I loved it so much that I memorised it.  The nonsense words made so much sense to me and ever since, I have found ‘frabjous’ to be the perfect way to describe a great day.  It’s so good to be able to write that I have had a great day.  It’s so strange to be able to tell you that this great day has followed others!    Here’s to more frabjosity. Goodness knows we all need more of that.

And if you are reading this and you are still stuck on that planet that sucks the life force from your bones, take heart.  If a frabjous day can happen for me, there is no reason it can’t happen for you too.  Hang in there, keep pushing, keep looking, keep trying. Sometimes, it is a long time the manxome foe we fight. Take hold of your vorpal sword and advance!

JABBERWOCKY

Lewis Carroll

(from Through the Looking-Glass and What Alice Found There, 1872)

`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

“Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!”

He took his vorpal sword in hand:
Long time the manxome foe he sought —
So rested he by the Tumtum tree,
And stood awhile in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One, two! One, two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

“And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!’
He chortled in his joy.

`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogroves;
And the mome raths outgrabe.

 

 

 

“Inappropriate Happiness”

Today was my first steroid infusion.  I don’t mind admitting that I was very nervous.  I seem to have a talent for experiencing side effects when they are on offer.  My first two drugs, fludrocortisone and midodrine both had to be stopped because the side effects were dangerous. Fludro dangerously rose my intra-ocular eye pressure.  If my optometrist hadn’t noticed the rising numbers, I could have gone blind. The midodrine (my most favourite medication of all time) caused urinary retention and hypertension.  Again, I had to stop.

As always, I had done my homework before today’s infusion.  I knew the common side effects and the less common.  I also had a moment of panic when the ward immunologist explained during her disclaimer, “…and I have to tell you, it’s rarely ever heard of, but some people do have serious allergic reactions to high dose steroids”.  See? Don’t tell a girl with a rare diagnosis that things ‘rarely’ ever happen.  It’s like putting a siren strobe light on my head, pointing at me and yelling at the universe
“That rare-side-effect-magnet-girl is HERE!  Come stuff her up some more!”.

Of course, in the interest of self protection, I always do consider the worst-case-scenario when I am embarking on a new medication.  I scan the Medsafe sheet and think ‘Can I handle that?’  If I am prepared to handle that in exchange for the benefits the drug might bring, then it’s worth the risk.

So this was the list I examined last night.  It’s from the Mayo website:

Add a little bit of body text(3)(yes, I know, the highlighting slipped on the second group of my graphic, but tonight, I don’t care about getting it just so!  Handle the jandal design minded peeps, it’s really, okay).

I scanned the list and realised that of all those side effects, most are my current symptoms anyway (highlighted in yellow). Nothing new there.  The ones highlighted  in blue are not usual for me, so would be easy to spot if they turned up.  I decided it was worth the risks.  But there were other sites I visited, too.  Ones like this one, that listed side effects I felt sure were too nice for me to ever have.  Like euphoria (apparently this ranks at #36 in all on online discussions about IV steroids).  Euphoria is a sense of ‘misplaced wellbeing’.  Or as one of the sites describes it: ‘inappropriate happiness’!  When could happiness ever be inappropriate?  Well maybe at a funeral. Or job interview.  Or in the wee small hours.

I arrived at the Immunology Daystay and we got underway.  The Immunologist who saw me was wearing killer heels and wrote with a Mont Blanc.  It was a brilliant start. I wanted to get a photo but I thought she might think me weird.  She was that sort of doctor who talks to you without any hint of superiority, too.  Taste and tact.  Smart and sensible and kind. I liked her right away. She asked me questions and explained the process.  I signed the form.  They stuck the needle in my hand, taped it down and away we went.  It’s the fastest infusion I have ever had; it only took a morning.

This is what I noticed:
First, a rising metallic taste in my mouth.  It even made my water taste brackish.  The kind lady next to met gave me a mint.  She was nice.  We talked about books we loved (she was reading Barbara Kingsolver’s Flight Behaviour and I am in the midst of Karen Joy Fowler’s We Are All Completely Beside Ourselves).  I began to feel woozier than normal and really tired.  I noticed when I got up that my legs were weaker.

Back at home, I propped myself up in the armchair and drank a cup of bitter tea.  Then the hunger hit.  I was a ravenous creature! Thankfully, an entire pomelo was on the bench (pomelo are giant fruit from my childhood in the tropics, kind of a cross between a huge grapefruit and a mandarin).  I ate a whole one.  What? They’re only the size of a human head! And then (shhhh) a few other things besides! Aunty Dee’s tua tua fritters with wasabi mayonnaise,  a salted caramel and date cupcake.  There goes my liquid diet!  BAM. Delicious.  By late afternoon I felt really odd.  Just wrong, weak and dizzy, but different to my normal weak and dizzy.  Who knew that weak and dizzy had so many different presentations? I lay and marvelled about that.  All the different dizzies.  I was sleepy, but I didn’t couldn’t stay asleep.  I got ready for bed, hoping sleep would claim me for the night.`But there in the back of my head, there was a shiny little secret twinkling.  I pulled it closer so I could see what it was.

Every little thing is gonna be alright.

‘That’s odd.  So not true!’   I thought.  ‘But it is true, come see’ was the thought that came back at me.  I closed my eyes and this is what I saw…

Earth, from space, like you see in the movies, all that blue and green with wispy scuds of clouds.  Breathtaking.  But as I looked I saw that in some places there were burnt patches.  I knew; those patches were the horror scenes we see on the news, we read about in books, we worry about as we hold our babies close. And then, from the back of my tiny brain, somewhere down there in New Zealand, that twinkly little thought rose up and burst through the atmosphere.  I saw it climbing up.  Then millions of starbursts of thoughts, from everyone else too, everywhere else, cutting vertical lines upward through the atmosphere across the entire planet.  Then they bent and arced around the earth, forming a web of light that shone down over everything, even the burnt places.  And there was regeneration.  But new burnt patches appeared, pinpricks and vast stretches.  And the arcs of light kept shining. And the world kept healing itself.  One patch at a time.  Links of light shining down in the dark spaces.

I opened my eyes then.  Looked around my room and thought:  
‘There is more good than bad’. And that little epiphany made me happy.  And the happiness just sort of filled me up.  Just like that.  I haven’t felt happy like that for a long long time.  I’ve felt content, but not so completely happy.  Better than being able to hike up to a good view, even.  Better than being deliriously tipsy in the kitchen, lost in the sway of your man’s arms and a good song.  Better than floating on your back in a sapphire sea. A better buzz than most of life’s joys.  Better than baby feet! So nice to feel that every little thing is going to be alright.  So good to feel it in my bones.

And then it occurred to me.  HAPPY DAYS! Far out, Rachel.  I’m experiencing euphoria!  For once in my life, a nice side effect!  Huzzah!

And then I chatted with my dear friend, Nettie, and I rocked around the internet marvelling at it’s extraordinary wonders.  I felt a growing sense of Eudaimonia (there’s a word to make you happy); human flourishing.  Another thought twinkled away: this illness, this experience, it’s a process.  It’s not the opposite of good, it’s just a process, like any other biological process.  I can flourish from it just as well, or maybe more, even, than I could have if I were well.  And I am, I will.  I’m a quick study. And that thought made me even happier.

The Bobby D came into the bedroom to go to sleep then, it was already late and he was concerned.  I don’t do well with poor sleep, so he suggested with that lovely man-kindness, that I call it a night.  But you know what?  I JUST COULDN’T.  I am happy!!!  I want to squeeze every last drop of this euphoria out.  I told him I needed to write (that look lasered over at me) and that I would come to bed as soon as I possibly could.  I repaired to the living room and lay on our lovely long velvet sofa.  It makes me happy too. The feeling of my feet brushing across the nap, smooth, rough, smooth.  Life.

And I wrote this down.  Well, in fits and starts.  I’m a bit distractable tonight!  Flitting here there and everywhere in my laptop world! Loving all of the world, the light and the dark. The shiny thoughts that are gonna make everything all right. It’s all probably a bit wuwu.  I hope it won’t be so nutty I will have to delete it tomorrow.  Because I want to capture this feeling.  Can you feel this joy?  It’s so nice. It’s like one of those big round papasan chairs but instead of a cushion there is lots of sunshiney light, and I am coccooned in it; euphoric!

Goodness!  it is nearly 2am already.  How did that happen?

May euphoria find you some time in your lifetime too.  And may it not be via drugs.
It’s wow.

EUPHORIA

 

Missing Persons

This is not my usual kind of topic.  But I felt compelled to write about it.  I hope you will read it, it matters.

don't forget about us

Missing Persons
When we first got satellite TV, I spent a disturbing night, up until late, watching a documentary on the Crime channel.  It caught my interest because I recognised the picture they flashed up of a girl I had seen on the news some weeks earlier.  I was deeply distressed when I watched the news report about her imprisonment in a room of the basement in her childhood home.  Nobody knew she was there apart from her kidnapper. It had disturbed me greatly.  So when I saw her face, my thumb paused on the button of the remote.

And I paused, too; I watched.  I sat, transfixed with horror as all the awful facts of her incarceration were laid out.  Then, other cases.  Another German girl.  Then, two more girls, held captive for years in a dugout in Russia.  And Jaycee Dugard, kidnapped and held in plain sight. The stories horrified me; the victims astounded me.  Such inner strength, such survival, against odds that must have seemed hopeless.

And it struck me as I watched, that this kind of documentary, this kind of channel, dedicated to the crimes people have committed… surely we should be concerned about this?  There it is, all laid out for the sociopaths and psychopaths of the world. All the information they could ever need?  A how-to-guide for abduction, kidnap, subjugation and torture.  A twenty-four-seven feast of human horrors.  And not just this kind of crime.  Every kind of crime. The TV is full of it.  Whodunnits, forensic science and murder shows, action thrillers, bounty hunters, drug lords, pimps and con-men. Why do we have these channels? I ask myself, why do I watch, when I do? I am so disturbed I have nightmares, but still, there are times when I watch.  It really concerns me.

Some of the people who watch, regularly feed their brains on this diet of destruction. If they are people with violent thoughts and desires, it must be like an endless drug supply of their favourite hit.  Until the 2D images are not enough.  Then what?  Why do we keep supplying this drug?

Then, just recently, another documentary flicked across my screen as I was scrolling.  This one about the three girls in Cleveland, held captive, tortured and all but destroyed, for ten years by Ariel Castro.  I watched the policemen talk about the case.  I heard the neighbours, exclaiming in disbelief. I saw footage of family candlelight vigils, the broken faces of mothers and fathers whose children were lost.  It honestly made me want to look away.  It’s hard to absorb the pain of that loss in the face of another mother. It is an unthinkable torture they endure, too.

Why do human beings do these things to each other?  Why are some people so hideously broken that they must break others?  Can the cycle ever end? Will no one stand up and call for less of this violent education on our screens, in our living rooms, one click of the remote away?  What happens to all those unsupervised, under-parented kids who watch this stuff? And what about the computer games, so hyper real your brain is tricked into responses similar to real life.  Environments where car theft, rape and criminal activity are the mainstays of the game? I don’t understand where it is all going, I don’t want to.   But it worries me sick.  Does it worry you?

I have read a couple of the books written by survivors of human slavery. Tonight I finished the second. Their stories are terrifying, heart wrenching, and also inspiring.  But I was struck by the similarity in both Jaycee Dugard and Michelle Knight’s stories.  For both of the perpetrators, a diet of extreme porn and crime channel television were significant interests.  Are we paying attention to these things?  Do we care?  Do we dare to say; not here?  As mothers, wives, women and ultimately, the nurturers of all the babies that enter this world, when do we say ‘enough of these images, these ideas, this sickness’?

Our missing persons numbers continue to grow.  From tiny little ones, childen, adolescents, young people.  Countless souls, unaccounted for.  How many are trapped and needing our vigilance.  Have you ever googled ‘missing persons’ in Google images?  It is overwhelmingly distressing. Do you know your neighbours?  Do you listen for disturbing sounds?  Do you ever call the police?  Do you share and circulate the pictures of missing people on Social Media, or do you look away?  Click away?  Try to pretend it isn’t happening?

I saw this little guy again on my newsfeed the other day: he’s still missing.  And I am ashamed to say that I clicked away.  After staying up tonight to finish reading Michelle Knight’s book about her kidnap ordeal, I resolved to stay up a little longer and write this. And to post his face here. He is only one of so many.  Let’s not look away from their faces anymore.

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Want more information about missing persons?

Go to the NZ Police Missing Persons facebook page.  Receive notifications and spread the word.  You can find it here.

Are you in Australia?  Here is the Australian Federal Police missing persons page

The International Centre for Missing and Exploited Children (ICMEC) is a global movement to promote the safety and well-being of children.

_________________________________________________________

and finally, some words from Michelle Knight herself.
“for now, the only kind of sense I can make out of everything that has happened is this: we all go through hard things.  We might wish we didn’t, but we do.  Even if I don’t understand my pain, I have got to turn it into some kind of purpose”

And she is.  Michelle is putting her life back together and helping other people and children who have been victimised.  Her story is horrific, but her attitude blows my mind. What an amazing survivor she is.

My heart goes out to all those still missing persons and their families.  May they all get the chance to be free again, just like Michelle.  And may we remember not to forget them as we go about our daily lives.

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These books are difficult reads. They make you want to look away. Reading them will make you stop, to cry. To catch your breath.  To shake in your boots. You may have nightmares or lose sleep.  They are terrifying tales and emotionally raw, real stories.  I certainly didn’t enjoy reading them, but I am glad that buying them will contribute to the income of these girls. And I hope that their stories will help us to do something about the welfare of our vulnerable, disenfranchised young women and children in society.

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?

4 Ways to Better Medical Literacy

4 ways to better medical literacy
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A couple of years ago, I was at a function.  I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia.  Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions.  😉

This guy, like many doctors, was a very intelligent person.  He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well.  Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients.  The term is not something I had encountered before, or heard from others about.  The attitude he spoke of was familiar to me, but not the expression.  Have you watched a doctor ‘think’ this before?
A patient who talks the talk? Who has been googling? (insert eye roll)  Could it be a case of somatisation?

Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosematic illness.  Hypochondriasis. There are a range of psychiatric disorders which follow this pattern.  Sadly for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own.  Dizziness, chest pain, abdominal problems.  This is why for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts.

Recently, the term ‘medical literacy’ came up in my readings.  It reminded me of that social encounter with the doctor and his word ‘medicalised’.  I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon to the average patient.  We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on.  Especially when consultation times are squeezed, fast forwarding through all the translations between doctor speak and layman’s terms, is practical.  Also, have you noticed how many letters there are in medical words?  Phew, acronyms were invented for a reason!

We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace.  So much so, that new members take a while to learn the lingo.  For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions.

In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term).  The Ministry of Health’s report into health literacy in this country defines it as:
“the degree to which individuals have the capacity to obtain, process and understand basic health information and services in order to make informed and appropriate health decisions”
(Kickbusch et al., 2005; Kōrero Mārama, 2010)

Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way.  Literacy really means being able to make sense of information in context.  For people without science based or medical degrees, it can take some time!  For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis.  My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart.  My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information.  There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas.  I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here.  It might relate to my condition, but not to what is possible for my treatment.

All of these factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness.  Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care.  Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’.  Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health.  This is a key success component to getting the help you need from the professionals out there who are qualified to help you.

Here are four ways you can improve your health literacy:

Ask questions
Don’t be afraid to ask.  A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference.  I didn’t.  It’s a med school 101 reference.  I was confused, so I said “Can you explain?  I don’t understand …Occam’s what?”.  Occam was a monk a very long time ago who put forward a problem solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it).  He was explaining why, even though I had recently discovered I have a high titer (often present with another auto-immune neurological disorder, Stiff Person’s Syndrome), the one he thinks I have (Pandysautonomia) is more likely to be what is wrong with me.  Asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants.  In my experience, most doctors like to be asked questions, particularly for clarification.

Read all about it
Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis.  Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition.  They will have access to information too.  Read it all, even if you don’t understand it.  If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition.  If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading.  There is a great deal of pseudo-science out there that can trick unsuspecting readers.  Run it by someone with more knowledge than you before freaking out.  😉

Find your Tribe
Facebook and the internet abound with groups, forums and news boards  that bring people with the same conditions together.  Look for groups with a strong set of user guidelines.   Read them and see if you agree with their code of conduct. There are some really awful groups where bickering and mindless trolls like to stir the pot.  Avoid those.  If you find yourself in one, leave.  There are much better, well run groups of like minded people out there.  It took me a long time to find a group that I consider to be responsibly administered.  When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood.  Finding your geographically relevant tribe is good too, because then all of the information will relate to your experiences.

Delve into your Data
Get hold of your medical records.  In New Zealand you can request these from your GP and your District Health Board.  Organise them into a file and refer to them. Examine your results and look for patterns.  Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor.  Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition.

Why does it matter?  If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary.  Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower.  Not sure about that?  This is what the Ministry of Health had to say about people with poor health literacy:

I found this at www.healthliteracy.org.nz
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The only person who will ever care about managing your health plan properly, is you.
Literally.

 

WINNERS: Calendar Giveaway

GiveawayCongratulations to

Leah Gullan

and

Emily Doddrell,

winners in the Be Couper 2015 Calendar draw!

I’ll be in touch, so check your email inbox.
Thank you to everyone who entered.  🙂

… enough …

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Auckland is at her best today.  It’s a warm summers day with a light breeze.  The pohutukawa flowers blaze against the blue and white skies.  The hubster is still on holidays and today, we’re up in Orewa to try the cycleway.   They’ve unloaded the bikes, strapped on their helmets and cycled off down the track.  I’m here, in the car, watching them go.

When I saw the map of the track and realised that it was 7km, I knew it was out of my reach. My seven year old can manage a flat 7km ride without any hardship, but for me, it’s out of the question, even at a walk.  Just sitting here in the car, the world is tilting out my window.  I ache all over, and I have that residual irritability that comes when I have been overdoing things.   When we planned today, I felt so daunted. I thought seriously about staying behind.  The idea of a day in bed was exactly what my body and I wanted to do.

But next Monday, my Bobby D will be back at work.  Our opportunity for family time will have passed.    It’s far from ideal, sitting here in the car for an hour while they hit the track; but it could be so much worse. I have the most beautiful view over the Te Ara Tahuna estuary.  I hear children laughing and the sound of the ice-cream van.  And at both ends of that cycle ride, we’ll all be together again, hanging out in the summer holidays.  To all appearances; normal.  My hand on his leg while we drive, the kids laughing and bickering and chatting in the back.  Us.  If I close my eyes and use my imagination during those moments, we could be any family. We could be us, but in a parallel universe, where I am well and all is well.

Yet, in all honesty, I’m feeling left out. Even though I know that it was the right thing for me to come, anyway.  I’m feeling grumpy. I’m tired and tetchy and alone.

So what.

I get to be their Mum, his wife. I get to be with them.

I close my eyes and let that summer breeze take me to a place of relaxation. I breathe slowly and thoughtfully. I rest. Just what I need for the next bit.  There’s a rhythm to life when you stop fighting it.  I can do it, I think. One breath at a time.  I visualise all my grumpy dissatisfaction, words upon words upon words on a page.  In my mind’s eye, I take that page and screw it up.  Toss it over my shoulder.

This day, being there when they return from their ride, smiles wide and faces pink with exertion, being there.  Being there, with their happy energy, being the smile they find at the end of their track.

That will be enough.

————————————————————————————–
PS.  My friend just told me about this, I hadn’t seen it before.
You are right Mel, it is special.
I thought I would share it on this post in case others haven’t seen it either.

I wish you enough sun to keep your

Words Fall Out

If we’re lucky, it visits us a few times before taking us away; Death.
I remember the death of our dog.  That first aching glimpse into the yawning chasm of ‘gone forever’.  And the death of a grandparent; quiet censored whisperings of adults and the hurried ushering of the children away from the coffin.  Gone forever. First one person, then a sprinkling of elderly others.  Watching the grief in my mothers eyes spill over into tears.  She didn’t usually cry.  It sent a chill of foreboding through me, seeing her mourn her own mother.  I was fourteen then, and beginning to comprehend.  Death loomed close to my imagination. An irrefutable, unescapable, cruel end and a bitter suffering.

Then, facing the shock news of a car crash, a cousin, close to my own age. Another friend too, another car. Somehow so much more tragic than losing the elderly; more personal, more real.  The horror of knowing they are gone.  Forever.  And it could just as well have been you.  You contemplate all the things that you get to still do that they don’t.  You think about the future they’ll never have.  You marvel at how the birds still sing, but they cannot.  You can’t absorb the fact that everything they were, the entirety of their being, is gone. It’s too frightening. Too close to your bones. A whisper too near to your ear.

You let the tomorrows slowly ease your mortal fears.  Time anaesthetising you from the truth.  We die.  One day that will be my funeral.  One day it will be yours.  We try to forget that immutable fact. We are expert at it.  We close our eyes and batten down the hatches.

We pretend that we will live forever.

But we won’t.

Any of us, at any moment are a hairs-breadth away from it…  why don’t we live like that is so? Why do we pretend?  Diminishing our existence by living as if there will always be a tomorrow?  Another chance? Limiting what we see and ring-fencing our hopes, saving them for another day?

Why do we do that?

Death is on my mind today because this is the anniversary of the day my Mum took her last breath.  I remember staying with her through the night of New Year’s Eve.   She was so tired.  In so much pain. Throughout the night I had counted her breaths, and the terrible pauses between, the gasp and rasp as she fought for air again.  I was terrified about how death would come. When she opened her eyes the next morning, her barely audible whisper: “am I still alive?”.
“You are Mum.  You’re here.  It’s a New Year” her tiny amount of energy collapsed her tiny frame, deeper into the bed, lost in defeat.  “Still here” she mouthed, this time, no sound escaping her mouth as she closed her eyes against the day, the year, the endless struggle of her ending.

I didn’t see her open them again. I left my shift of the bedside vigil and went to sit at the beach.  My brother called me when it happened.  She had gone when they had stepped out of her room. I wondered if she had waited for them to go, to save them the torment of hearing the last breath, of counting the pause that would never be broken with another rasp.

I sat there on the dunes and watched the skies as her spirit flew past.  North to the Bay of Islands, and on to Cape Reinga. She was free.  I knew I should be able to breathe easier knowing that.  But what settled on my chest was a heavy weight of knowing.  She was gone forever.   Forever is a long time to be motherless.  And I cried like the baby I am.  Her baby.  Cried because I didn’t know how I could do it.  This life.  How could I do it without a mother?   I felt lost and cut loose of the only tie that truly binds.  Her freedom became my burden.  My debt to her, paid in grief and measured out across my own forever.

Thank you Mum, for loving me.  I miss you.

I was in the car this morning, coming back from a morning out with the horses.  It had all been far too much for me. I was half-sleeping, listening to the music.  Kellie’s song came on the radio.  My eyes were shut and my head lolling against the head rest.  Her song pops up at interesting times.  I always listen.  Think about her, miss her.  Wish she was still here, wisecracking on my blog, or messaging me about something.  Another gone forever girl.  Breaking our hearts with her absence.  Filling our days with remembrances and regrets for all the things we never said.

I wonder what would happen if you say what you want to say,
let the words fall out
honestly

I want to see you be brave.
(Sarah Bareilles, Brave)

Death is not a palatable subject.  People don’t like to read about it.  We don’t want to be reminded.
We go to such great lengths to ignore the truth and fight the realisations.  We all want to live forever; I get it, me too.  But what I want to say today is hard to read.
Wake up! We all die, people.
My words are falling out.

gone

Don’t push it away, not this day.
Remember.
Do it for the memory of my Mumma, for the memory of Kellie, or for the memory of someone you loved and lost. Do it for yourself, as an act of wilful rebellion against the denial we usually prefer. Live like there’s no tomorrow, in whatever way that would be for you.
What would you tell your children?
How long would you hold your lover’s gaze?
What would you say that needs to be said?
Who would you forgive? Who would you ask it from?
What would you do today?
What would you choose to look at, to feel, to notice?
If this was it.  What would it be?

This song probably says what I want to say in a much better way.  Have a listen to this.  And make today matter.