Sunshine

The winter sun seeps thin and white through the cloud cover.  The rains have been sporadic, like the tears of grief when not one year, but two have passed. When the irrefutable fact of her passing has seeped into your bones, and you know, there is no going back.  The rain connects across the Tasman in great arcing fronts. Every year on this date, stretching between countries, across time, back to Kellie’s death, and to her friends and family. Reminding me that time is passing, but the grief doesn’t.  It just changes, like the weather. Shifting the pressure and moving the isobars.  Hail today, rain tomorrow. Some snow among the chilly grey.

rememberingthis beautiful ray of sunshine

I think of beautiful Kellie.  Of how short her life was yet how much of a life force she was.  I imagine her directing the weather like a Greek Goddess, goblet in hand, laughing at the storms.  Revelling in the thunder and sending out lightning from her fingertips; her anger and joy all rolled into one vibrant and terrifyingly beautiful heavenly creature.  Making her presence felt in the skies.

I think of her family with my own mother heart. It’s so unfair that they have to do life without her. I hope they are okay, two years into their marathon. I hope they are finding their own ways to keep her close, to remember and celebrate her astonishing vibrancy. I stand with her friends and family, across the ether, raising a glass in acknowledgement.  That Goddess woman. Gone but never forgotten.

She was sunshine. Straight up, sunshine.

Here’s to you Kellie. X

(I like this version)

 

 

Karen: Lost in the Fog

Welcome back to the Meet my Peeps Guest Series.

I am so delighted to bring you this post from Karen. IT Professional,  fellow horse lover and chronic illness sufferer, Karen has a hard row to hoe.  She is dealing with all the challenges Dysautonomia throws her way, largely, on her own.  She does however have the wonderful company of her beautiful animal companions. Three very special horses, Meko, Oscar and Bazil, and two personable pups, Kitty and Milly.

Karen is a deeply practical person with a passion for animals and the outdoors.  She lives in beautiful Tasmania. Whenever she can she spends time making the most of her stunning surroundings and the company of her faithful companions; cooking for friends when able and enjoying being part of a close knit community.

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A picture of horses in the dim foggy light of early morning.

I’ve reached the point in my journey of chronic illness where suddenly all of the denial is falling away. As night ends the dawn appears and the reality of my situation arrives quietly, like an early morning winter fog. It’s a cold…desolate…an eerie place to be.

My Specialist, who has gone over and above in his efforts to help, has said there isn’t much more to try. And I have tried to keep those thoughts of reality away, hoping my current trial treatments will be enough to help me to climb out of this latest setback. And always, the hope that perhaps, there will be a magic pill that will suddenly get me back on track to better health.

Lost amongst that fog, I cannot see where my journey will take me and what the future holds for me. Feeling cold and somewhat numb, I realise I need to pull myself together, to prepare myself for when that fog eventually clears. The key words here are ‘Me’ and ‘I’. Not ‘The Specialist’ not ‘The Medication’ not ‘My Friends’. I cannot find them through this fog. So I look down at what I can see….my hands, my arms, my legs, my feet and I realise that they are all I have to help.

All the things that I either can no longer do, or which cause great expense or payback, come to mind. I think of my dreams of being healthy and active again, living life to the fullest. I think of watching it all pass by me, the whole impossibility of the situation, and a few random tears begin to fall. I’m so glad that shrouded by this fog, nobody can see me like this.

And as the fog begins to dissolve, I see clearly what matters to me the most. My beautiful animal companions who worry over me, who are there for me, the ones that offer me a hug when there are some tears or when I just need one. I can give them a better life if my health improves. Walks along the beach, rides along those bush trails, drives to mysterious destinations yet to be discovered. New experiences. This is what I have to work towards and hope for when the sun re-appears.

I muse a little more. I make some plans. I make a decision in the depths of that fog. This is my tipping point. This is where I need to take control of my own health and not expect others to fix it. It’s a wake up call. I promise myself that I will do what I can to climb out of this valley I’m in. I think about how the introspection within the fog has allowed me to centre my thoughts on me. To block the distractions out and decide on a new direction.

As that fog makes way for the bright sunlight and the brilliant day that lies ahead of me. I know I must take advantage of this day to put my plans into action. To reach my goals in life. To climb out of that valley myself.  I know that next time, I will recognise that fog as something beautiful. Knowing that I am in charge of my life and that I got through it before, into the light of a sunny day.

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Meko and I Swimming_In_Swan_Lake
Karen and the magnificent Meko in Swan Lake

 

Picture of a beautiful bay horse face (belongs to Bazil, who belongs to Karen)
The Beautiful Bazil

Dysautonomia or Something Else?

Something new is growing in my mind garden.
It’s just a little shoot, but every time I look at it, it’s bigger, greener and more vigorous.  It makes me want to shout with happiness!

seedling

I’ve been growing some hope.

I’m not sure if it was a bad idea to plant this seed or not.  I am nervous about sharing. I’ve been a bit mind boggled by all the science and my arts brain is struggling to take it all in.  But here is the story.  It’s got a lot to do with blogging, doctors who never really retire (!) and the fact that sharing and connecting via social media is really incredibly powerful.

I know there will be some of you in the Dysautonomia community for whom this information might be significant.  You’ll find further information at the bottom of this page.

seedling2

In May, I started this blog.  I started it because I wanted to yell my story out into the world.  I wanted a platform.  And a big megaphone.  Somewhere I could shout out loud:

“This is crazy!  This weird thing is happening to me but people can’t see it, they don’t know… and I am not coping, it’s getting worse all the time,  my doctors aren’t helping me, and I am afraid… and I need someone, somewhere to hear my voice!  Are you like me, too?  Can you hear me?”  

And you did.  The relief of knowing you care is bigger than I can express.  I can’t fully comprehend the strangeness of knowing I have had 70,000 page views, from people even as far away as Latvia… and I am so glad each and every one of you are here!  New Zealand is such a small country in a big world; we’re so far from everywhere.  But not when we connect on the internet.

It’s a small world after all.

I am particularly glad for two recent happenings.  The first was that my lovely friend Caroline from Wellington (who also has Dysautonomia)  suggested I submit some of my writing to Stuff’s Online series on ‘Invisible Illness’.  I did and they published it, here. That article was read by a retired Swedish doctor living in Christchurch.  She linked to my blog from there.  She looked over my medical history and saw some things she recognised.  And then she took the time to email me.  These important words were the crux of that letter:

“…your description of your Dysautonomia, your long QT, your hyper mobile joints, your gastric dysmotility and muscular weakness just makes me wonder if another aetiology has been considered…”

 

She went on to explain that she herself is diagnosed with a rare condition that could possibly explain a lot of what was going on with me. She suggested I make some enquiries.  That led me to seek the help of an endocrinologist.  He mentioned the word channelopathy before I did.  And so we have begun the process of looking in to this as a possibility.  Channelopathies fall under the umbrella of Muscular Dystrophy. There are a few variations of these ‘periodic paralyses’ associated with mutations in calcium, sodium, or potassium channels, causing muscle dysfunction. Skeletal, cardiac, smooth, gastrointestinal, respiratory, facial and/or eye muscles can weaken or stop working periodically.  I can’t help but think, if I am one of these patients, it would explain my problems with my heart, my digestive tract, my bladder, my bowel, my eyes and the intermittent problems I have with my gait and leg weakness. Wouldn’t that be something?  A completely different tangent to consider!

Patients can have blood results within the normal range (as I do) and still have problems with these ion channels.  It is notoriously hard to pick up in routine tests and is best investigated by genetic screening.  This test is available in Australia.  Not all genetic mutations responsible for channelopathies have been identified, but many have (80%).  Treatment for patients with these channelopathies seems a lot more effective than the regime I am currently on for my Dysautonomia symptoms.  People with channelopathies need to dramatically amend their diet, depending on their sub-type, and take a range of medications to manage their condition. But what I have read so far suggests that it is a condition that responds to treatment.

Could it be that I don’t even have Dysautonomia?  Could this other rare condition really explain why so many aspects of my autonomic nervous system struggle to work properly?

Could my story have a happier ending than the one I currently face?

I am keen to find out.  And I am not stopping until I know for sure.  I might be barking up the wrong tree altogether.  Or barking mad.  I might have planted that seedling in the wrong place and in the wrong season.  But it is a beautiful thing to be watching my hope grow for a change.  I’ve decided that even if my hopes are dashed, it’s good to have them when I can.  Hope is powerful medicine for my wellbeing.  And I might just be growing myself a TREE!

I see my endocrinologist again in two weeks time.  So until then, I am watering my seedling and holding out for some sunshine.  Wish me luck!

Have your doctors ever considered this aetiology for you?
 Have you ever heard of muscle channelopathies before?
 Do you want to know more?
Look here first:
 Periodic Paralysis International
Then here:
 Periodic Paralysis caused by diet or exercise?
And here is the only blog I could find that wrote about correlating symptoms, if your curiosity is piqued:
http://periodicparalysis.blogspot.co.nz/2005/07/maybee-family-syndrome.html

I’d love to know your thoughts!