Something Beautiful

When my kids were still really little, every night at bedtime, we’d sing a little song. It was always to the tune of one of my Mum’s old favourite church songs “Something Beautiful” but the words changed every night.  We’d take turns singing about what happened that day. Always the highlights.  It was a nice way to send them off into dreamland in a good frame of mind. It always started with “Something beautiful happened today…” and the rest would all depend on what loveliness had punctuated their day. I loved hearing their little voices sing about the things they appreciated most. It was often the little things.  “…I wore gumboots and splashed in the rain” or maybe “I got scratched by the cat, but I was really brave”.  Every line had to finish with the long ‘a’ sound, so words like ‘hooray’ and ‘play’ and ‘stay’ featured heavily.  If the syllables were too long for the melody, we’d race the words to fit them all in and collapse into giggles. Sweet moments.

Since my appointment with the Newro yesterday, I’ve been humming that little melody.  I feel happy and hopeful and positive.  Because something beautiful happened to me…

remission

The ‘Newro’ (new neurologist) was brilliant.  It was so nice to be welcomed into a doctor’s rooms by a person with a genuine smile and lovely nature.  He had read through my notes and proceeded to ask pertinent questions. We talked about the difference between then and now.  He was up to play with all the things the Immunology department have discussed with me. He explained that my response to the infusions was not a picture they had seen before with Autonomic Neuropathies, but it had been seen in other Neuropathies, like Guillian Barre Syndrome. So whatever the mystery-antibody  is that has been causing my problems was impairing my autonomic ganglia, but not killing them off. Which is why I have been able to regain normal bowel function and improved bladder function. It’s why my cardiac episodes have dropped off. Why I am feeling so much better. My nerves weren’t irreparably damaged, just interrupted… for a long, long time.

We don’t know if I will continue to feel well, or if my picture will be a typical auto-immune relapse/remission type cycle. But apparently the fact that I responded so rapidly to the Methylprednisolone  infusions (within days of my first dose I began to see a difference) is a tick in the box for a longer term remission! Oh my goodness I hope so! The Newro said we can’t crystal ball gaze, but if I begin to slump, and the slump lasts for weeks not days, I need to go back and see them. But in the meantime, no outpatient clinic!  I’m hoping that General Medicine and Urology will take the same view and I will begin a whole new letterbox experience.  No more appointment letters, confirmations, medical paperwork.  The thought makes me giddy (in the best kind of way, not the old way!).  I long for a calendar that is hospital appointment free!

Also The Newro has agreed to be my Neurologist if things go south again.  I am so happy about that, he seems a good sort to have in your corner when you need a super clever brain around.  He’s all things great doctors should be.  Compassionate, no hint of ego, thoughtful, responsive, kind, clever and thorough. It all makes a very impressive package. I hope there will be other neurologists who learn from him during his career, he has a wonderful approach and manner. I do wish I could bottle that and dose them all (well, doctors of every speciality) with the same qualities.  If that man ever ran for President of the World, he’d have my vote!

So my dear Dysautonomia friends, I don’t know if any of this will be helpful for you, but it has been for me. I feel like my battery is recharging. I am feeling better. The more I can do, the better it gets. In there among the good days there are still some crap days where I feel like I used to. It’s hard not to panic when that happens, but so far, every slump has been shortlived.  I wish I could tell you exactly what antibody and genetic disposition combined to give me the diagnosis I have had.  We haven’t been able to isolate or understand either. But for me, whacking the immune system with a sledgehammer has made a massive difference to my quality of life. I hope you find your answers too, whatever they may be. And if your picture is similar to mine, please get yourself to an immunologist!

Here is an instrumental of that melody. Something Beautiful, Something Good.

A Little Like Hope

There are patterns that shape you.  Experiences that make you who you are.

Being sick for the last six years has fundamentally shifted my expectations of life. After all this time, I’ve been in a pattern of expecting things to get worse. I expect things to be hard. I expect side-swipes and surprises and I expect to find ways to cope with all that. But I never expect things to get better. Being optimistic about my health is something I have avoided for so long. All the science, all the ways of being that my body has trained me to accept.  All of these things have shaped my thinking. Being positive about the future of my illness always felt like a redundant pastime. A fruitless and futile exercise in wishful thinking.

So instead I have been resolute. I have tackled my illness like a maze. I have tried to be systematic in my research; I have sought the counsel of wiser science brains than my own. I have searched and pushed and applied myself to finding solutions. And that has been a wonderful focus for my mental energies. It’s less of a dare to the universe than positive thinking or pollyanna prayers. It has seemed logical and appropriate.  Define the problem, seek a solution.

And despite my beliefs that only a logical solution could fix my problem, just recently, the problem has been evaporating. Like the puddles leftover from our long, wet winter. The sun is beating down and shrinking the periphery. Rendering hard clay from the mud and quagmire. Setting my feet on solid ground. I’m feeling well. I’m exercising. Last Thursday I did pilates and followed it up with a walk in the country with my girls, Bee and Lulu.  I walked along the road and back again!  If you have been following this blog, you will know how extraordinary that really is. Where before even one of those activities would have put me back in bed for a few days, I have backed it up with more activity.

I walked! With my girls Bee and Lulu. There,

This weekend I’m in town with my hubster.  The last time we did this was a year ago. And it was so very different. I have no cane. Instead of sitting at the table, wondering if I can stay upright in the seat for the duration of dinner, I sat comfortably and talked with him there for three hours!  We enjoyed a six course degustation menu and a conversation that spanned worlds and made us laugh like we used to. We celebrated. Ten years of marriage. Parenthood. And something we’ve been a bit worried about celebrating. We celebrated my wellness. We’ve been so afraid that to acknowledge how well I am doing would tempt fate. So we haven’t. But last night we talked about it. We exhaled. We let ourselves enjoy this beautiful, fragile thing.

Want to know what feeling well is like?

It feels a little like hope.

I walked! With my girls Bee and Lulu. There,(1)

Early Days

Early Days
Yesterday I went to see my neuro-immunologist.  I was really thrilled to be able to show him what has happened to me since I started my new treatment.  He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.

What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.

I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.

I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune.  But there are equal parts fear and doubt.  I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted.  And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far?  It is a ridiculous thought, but there nonetheless.   I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest.  Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.

And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not?  I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.

I am in this place of plenty, but I have forgotten the language of ease.

I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT!  So good, like, really really wonderful!”  I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks.  I yelp, “My pleasure!”  because it really is.  Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort.  Maybe it seems over-the-top.  But it is not.

This life, this ease of moving, this chance to do things and be part of things.

If only you could feel how I feel.

I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said.  And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat.  I swung my legs into the footwell and grinned at him.  We drove home, my hand on his leg.

My heart in my mouth.

Please, please let this continue.  I promise I won’t waste it.  Not one second.

 

YOU ARE SIMPLY THE

Uncharted Territory

I am so excited to be writing this post!

This morning I had my appointment with the immunologist who is overseeing my steroid infusions.  We went through all of my symptoms; what has improved since the infusion, and what has stayed the same.

I am able to drop one of my medications!

But that was only the start of the good news.  He is pleased that I have had such a positive response to steroids.  He wasn’t expecting it.  He said that if I hadn’t, my options now would be severely limited.  But I have!  And I am starting to really believe that a different outcome might be possible.

Taken as a whole, the last three weeks I’ve felt better than I have in the six years since I first got hit by a nasty virus (let’s call it the ‘thing’).  Even feeling a little better would have been a win.  But I have felt, overall, a lot better. Better even than an improved sense of wellbeing, is that some of my autonomic dysfunction is also better.  Of note, I’ve been less dizzy, I am no longer constantly nauseous, my post-prandial bloating is reduced and I have had better (though not normal) bowel and bladder function.  I can sweat in some places that I couldn’t sweat before. And my fingers, three of which on each hand, didn’t wrinkle in water before steroids, now do.  In addition, the neuropathic pain in my extremities, hip, pelvis and left leg are vastly improved.  We haven’t checked my pacemaker statistics yet to see if things have improved there, but that will happen over the next few weeks.

My specialist explained that this response really puts us in uncharted territory.  A positive response to immune suppressants, means that the ‘thing’ I have has been attacking my autonomic nerve conduction and pain receptors by switching on an immune response in the wrong place. This immune response is suppressed by the steroids.  Because the erroneous immune response is suppressed, my body is functioning more normally.  This may indicate that nerves we previously thought were permanently damaged may, in fact be okay.  Which in laymans terms means I might be able to improve my autonomic nerve conduction and pain with immune modulation.

It means I am a better candidate, on paper, for further treatment.  So the next step is for me to see all of the specialists in my team.  I will go back to the other immunologist, my neurologist, my cardiologist, my urologist and my gastroenterologist.   They will provide their opinion on my function mid-steroid therapy.  If they concur with the immunologist, that this steroid response is good news, there will be more treatment options available to me.  I am so full of gratitude and joy.  I am not sure if I can properly explain.

Instead, I will let the pictures do the talking.  The photo on the left shows me on a typical morning before immune suppressants. The one on the right, I just took, standing in my kitchen after climbing my own stairs;  after my appointment this morning.  I feel good.

Who's That Girl_

Me, that’s who!
The Me I am meant to be!

IMPORTANT:  Every patient is unique.  The causes of Dysautonomia are varied and complex. If you suspect that you have an auto-immune variant of Dysautonomia, please seek the advice of an Immunologist.  Their recommendations for you will be based on your own medical history and individual situation. I do not claim that Pulse Steroid infusions are a cure for Dysautonomias.  It is still early days for us in my six month course of this treatment.  Continued efficacy of this course of treatment is our hope, but as my specialist said, we really don’t know what will happen next.  We are thankful that it opens up further treatment options.  We are particularly hopeful that the 20% chance of remission will be odds that fall in our favour.   And of course, I sincerely hope that if you have been battling with Pandysautonomia in a similar way to me, you will be able to explore what this might mean for you.  I wish you all, at the very least, the same experience I have had so far.

Life is a beautiful thing.  Don’t give up!

Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Poetry Free Fall

My friend and fellow Dysautonomia blogger across the ditch ran a great series for Awareness Month this year.  She asked other Dysautonomiacs to submit pieces that explore Dysautonomia through the arts.  She collected a range of paintings, sketches, songs and poetry.

This is a little poem I submitted.  It’s a bit darker than my usual writing, but I’m okay (I say that just in case you are the sort to worry about people writing dark poetry).  It was great to express some of these feelings in the context of a poem and for a specific project.  I have always loved the distillation of words that poetry writing requires, even if my own poetry skills are fledgling!

This poem is about my complicated relationship with sleep and hope and despair. It is about what it feels like to know that the thing you struggle with every day may never in fact get better.  It’s a feeling of falling.  I post it, all the while hoping that whatever your day is holding for you, you get to fly more than you fall today.

Arohanui x

 

 

Mail Attachment

Move over Marvel

Yesterday was my first day back home after my trip.  I’d been feeling less than super.  My bed and I reacquainted our special friendship and I spent most of the day hanging out there.  I got up around time for school pick up, and just then, the phone rang.  It was a private number, I sighed …I didn’t have time for another one of those telemarketers.  I picked up the phone anyway.
“Hello?”
“Hello, is that Rachel? It’s Richard Steele. Immunologist.” 
Imagine that, said in a Superman voice and you are right there in that moment.

I sat down.
We’ve been waiting to hear more from the two immunologists I went to see a few months ago. I have an appointment coming up soon at the hospital to discuss The Plan. Last appointment, we talked about high dose steroids and IVIG.  IVIG has yet to be approved. He continued, “-has anything happened?” well now, there is a leading question!  My brain travelled instantly down the path usually accompanied by that question.  Why was he asking about my toilet habits? Was I supposed to do something in particular?
“…have you had any bloods or other testing done?”
Ah. Not about poo then.  The whole world is not about poos after all.
“No, not yet”
He apologised for the delay (have you ever had a doctor apologise for delay?!) and said he would send me through some new blood forms forthwith, get me referred for another Tilt Table Test and a Gastric Emptying Study.

I think they’re a bit like superheroes, these Immunologists I am seeing. 
Not in a crazy way, more in a “Woah… those guys are clever” kind of way.  It’s great to have lovely thoughts about doctors.  So often the experiences of Dysautonomia patients with doctors leads to other, less happy thoughts.  So I’m rolling with the loveliness.  If, in the end, they can’t help me, I will always be grateful that they have tried.  It’s all I need; people to try to help.

So those are the things I am looking forward to in the next wee while.  The tests are to establish baselines for comparison.  My last Tilt Table Test was in 2009.  It was a scary event, because it was when we learned that after 9 minutes of standing without the ability to posturally compensate, my heart stopped.  This time, I’ll have my pacemaker on board, but it is hard not to be nervous after the last time!   I’ve never had a gastric emptying study done, but I am interested to see what the findings are there.  Post-prandial bloating is a daily occurrence for me, so some data would be interesting.  The blood forms, I am also intrigued by.  I wonder what tests they have ordered?  Will they be different, or the same as I have had before?
Fascinating.  Scary.  Exciting.

Stay tuned for the next adventures of The Man of Steele (see what I did there?) and his accomplice Rohan The Illuminator.  Here’s a little sketch I did of them.  🙂

10455837_10152876533295815_1543339797563551686_n

Pipe Dreams

Last night I had a strange dream.  You know those dreams that are so vivid you can smell them?  And when you wake up you are sure you’ve really been there?
I dreamt that I had found an abandoned animal.  It wasn’t the prettiest of creatures but my love for it was instant and fierce.  The coat and markings were all mussied up and it’s frame was uneven and lopey.  It was hungry, so I made it some food.  Hot porridge.  I was worried about how small our yard was, because I already knew without question that I was going to give that animal a home.  Our postage stamp lawn is too small for a gangly, moth-eaten creature that needs lots of room to move.  But I rationalised it would take a while to feed it enough food for it to have energy for moving, so it would be okay, for now.  And I made it a nesty place to rest.  I made a mental note to talk to the hubster about building a shelter. And kept offering the porridge.  That beautiful creature rested its heavy head in my arms and looked at me with its big liquid caramel eyes.  I knew that it would be okay.  I knew I had enough love, I was going to protect him, rescue him.

And then I woke up.
My daughter came into my room and I said,
“Guess what I dreamt about last night?”  Her eyebrows lifted.  “I dreamt I found a horse and brought it home”.  Her smile stretched across her morning face.  She hugged herself tight.  
“Ohhhh, Mum.  I wish you would”
“He was piebald” I said.
“I would still love him” she said.
“He was very skinny” I said.
“I would feed him” she said.  Girl after my own heart.

Do you have dreams that you know can’t come true? I do.  I’ve long since said goodbye to my career dreams.  My dreams about how I want to look and how I want my home to look. I’ve given up on dancing. Being an artist. Accepted that I won’t be who I envisaged I’d be. I’m okay with all of that. But I still really wish we could move to the country.  It’s a painful dream because I know it can’t come true.  I have visions of a warm house, all on one level.  With views out to the countryside from the kitchen.  Fruit trees and veggie gardens and a paddock or two.  A stable.  A kennel.  And all that green, as far as the eye can see.

source: www.flash-screen.com

I am stuck here; I need to stay in the catchment for our main hospital.  I don’t have private health insurance, so I need to be near where the public system can help me best.  I have lots of appointments to go to and travelling distance is hard for me, so the closer, the better.  Then there’s schools, and the commute. No, I’m lucky to live so central.  But when I look out my window, the only grass I can see is on the Mountain over the way.  Our own grass ends so close to the house I can’t even see it.  I yearn for fields of green.  I want a view that steps out all the way to the horizon.  I want to see my hubster, deep in concentration in his workshop, building something. Happy. I want to see Zed running around  and laughing with his dog, the dog we don’t have. And Bee, galloping across the paddock on the horse she sees every night when she closes her eyes for sleep.

Instead, I feed my impoverished dreams with intentionless online property searches. I nurture my need for country with weekly treks out to Bee’s riding class.  Drinking in the views, the space, the smell of that air. Feeling bad that it is me and this stupid illness stopping us from having that life.  Wishing I didn’t have to be asleep and pipe-dreaming to nurture the hopes of my heart.

Where would you live if there were no limits? No barriers?  Nothing stopping you?

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!

A Crazy Little Thing Called Hope


When my mother was dying, she thought God was going to heal her.  It was a crazy little thing called hope. She thought it because He’d promised her that in the scriptures that she’d religiously memorised and spoke aloud every day.  She was a woman of faith, and that meant that even though it didn’t seem like she was being healed, she believed it with every fibre of her being.  Her faith was so strong that on the day she was admitted to hospice, she asked me to take a ‘before’ shot.

“What do you mean?”  I asked, already concerned.
“A picture of me with this tumour, before God heals me and it is gone.  It will be important evidence for when I am telling people all about it”, she asserted.  Then she stood for the photograph, beside her last bed, her tiny frame almost overwhelmed by a giant tumour in her abdomen.  She maintained this kind of denial (it was the only way I could understand it, to call it that) for as long as she could.  She held on to it valiantly.  I was so horrified by it, and by the visitors who came in and prayed healing prayers. I was afraid that she would miss the opportunity to say the things she might want to say, and to hear the things we wanted to tell her, about how much we loved her, about our need for her.  In growing desperation, I spoke to the hospice counsellor.

“We’re not built for mortality,” she explained.  “Everything about the human condition is built around the need to survive.  It is our strongest instinct, our greatest drive.  How can one face one’s own death?  There isn’t a right way.  There is only the way that works for each individual.”
I went back into my Mum’s room and sat quietly beside her.  Memorising her hands, her fingernails,  the colouration of her skin.  She seemed to be asleep. I listened to each breath, each one painfully bought.  Something broke inside me.  I think it was my heart. I thought about her beautiful self, struggling against a reality she didn’t want.  I thought about how tired she must be, fighting for air, clinging to hope.  I didn’t want to wake her, so I cried my silent screams into the sheets of her bed and drowned my despair in tears that ran all the way to the sea. My Mummy was leaving me.

And where was her God? When she needed comfort, of all the times that her faithfulness should have been repaid with peace, where was hers? My heart welled up with compassion for her, as she gripped on to her last vestiges of hope. So I stopped trying to have the conversations of dying.  I let Mum say what she needed to say, when she could; so she said what she felt to say, not what I thought she should.  I read her Psalms when she cried out.  I held her hand and I slept beside her. I did all the things a good girl should, and then: she was just gone from my world.  Her hand no longer soft in mine.  Her heart no longer loving mine.  Just gone.

And now, my friend Kellie; also, gone.  So recently that our hearts and heads can’t take it in.  She wrote to me about hope many times in the months before her treatment.  She considered calling her blog about stem cell therapy “A Crazy Little Thing called Hope”.   These are her words about hope:
“…the whole hope thing is pretty integral to me as I was seriously losing hope. Maybe I’d even lost hope – don’t tell anyone!! But just having an inkling of hope made such a difference and it was so surprising how quickly the hope gathered momentum and how it then sort of manifested its own good luck”.
Then I found this little meme and sent it to her, but now I look at it and I wonder again, where was her God?   Kellie has gone too.  And she had so much hope.  But it didn’t keep her alive.

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And then, in this dark place of loss, deep in my remembrances of these two extraordinary women, I wonder, where has my own hope gone?  Has it evaporated?  I don’t feel hopeful. Will it return? What tricks of my mind will I find to keep me pushing forward, seeking help, searching for answers?  Is there something I can do to find it, or do I have to look for it, like a tiny dandelion seed floating on the breeze, passing by right in front of me at the perfect time.  Is hope that ephemeral?  My tired brain is weary of the measured and sane approach.

Kellie was right, it is a crazy little thing, hope.
But maybe it is all we can do.
Maybe it is all we really have.

Do you have hope?