Distance Vision

Two glorious days.

A ribbon day; discovering my love for plaiting horse tails, watching the school team compete, seeing the grins on the faces of each rider, the immense pride as a ribbon is tied around their pony’s neck. Noticing that the ponies feel pride too, a slightly rounder arch to the neck, prettier steps, a job well done.  The company of good people, shared food and the smell of sweet hay.  A daughter, reading horse encyclopedias after lights out… long after she should have let her exhausted self go to sleep.  Such a special day, and I got to be there, standing for hours, because I could.  My friend asked me if I find the heat difficult to deal with.  Yes, but not like before.  My very cells zing with some kind of happy elixir as I think that thought.  Not like before.

And today, my two little riders out on horseback.  Me, sitting on the grass, breathing in the country air and swinging my head from arena to paddock to take it all in. There is such a joy bubbling up from within, I can’t contain it. I smile at everyone and feel like hugging them all.  They are all so precious. I see all of their individual facets like I am marvelling at gems I have not seen before. So beautiful; our humanity. So breathtakingly gorgeous.

Driving home I see the lines of traffic snaking out in front of me along the highway. It’s busy. We’ll be a while. I turn up my daughter’s new CD and relax into the beat. Megan Trainor, it turns out, is not all about the bass. There is much more to that talented young lady.  I listen to this song, ‘Like I’m Gonna Lose You’ and the tears spring up behind my sunglasses.  It’s beautiful.  It’s how I feel about all of this.  The beauty of people, of life, this way.

And I notice the clouds in the distance, glorious in the late afternoon sun.  I see them, so far away, and realise that seeing things far away is not something I am used to doing.  My long range view has returned; I am seeing the breadth and depth, the future of life. I am loving it all, because really, what more can a heart do, filled up with the beauty of all of this?   My world is expanding in all directions.  I exhale and let the tears track new lines, down my cheeks and across the corners of my smile.

Do you know how beautiful you are?  People?  World?

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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

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?

Calling out My Name

So many exciting things have been happening in my life lately.  Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be.  It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that.  About promoting understanding and acceptance.

Sharon Davies   Be.Leadership Alumni

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness.  I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain.  Sometimes it is hard to find the words.

Doing that.  Using my words, has brought me to a surprising place in my life.  My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future.  I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new.  The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront.  It was the graduation for this years participants in the Be.Leadership programme.  The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders.  Among other great initiatives!  The program cost is $17,000 and this is fully funded for selected participants.  I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

Sharon Davies   Be.Leadership Alumni(1)

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online.  Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics!  Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do.  Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

 

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name

Making Music out of DNA

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I’ve been sequenced, my DNA sample was sent in a slick little kit to the States; they sent me back the raw data and I sent that off to Stanford to be reported on.  I’m in the early hours of studying the reports that have just come back.

Apparently I have increased genetic odds for empathy,intelligence and good sprinting muscles.  Who knew?! Running isn’t exactly my forte! I descend from Northern Europeans and I am 2.6% neanderthal.  Genetically.  Not behaviourally…I hope.

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Those were the good bits.

The other bits I am not so sure I really want to look at again.  I’ve scrolled through a myriad of red-bordered “bad” SNPs and the sheer amount of further research I am going to need to do is a bit overwhelming.  There were some things that were no surprise.

I am genetically more likely to have autism, substance abuse issues (Ah-ha! Does cake count as a substance?), skin cancer and ankylosing spondylitis. I have mutations on three of the MTHFR genes.  (Yes, you are not the only one who thinks that sounds like swear-speak!)  My autonimmunity genes repeatedly show up on the ‘bad’ list, but on the plus side, I have a normal population risk for some of the big nasties.  There are more results to look at, more research to do.  I have many more questions than when I started out, but isn’t that what information does for you?

Reminds me of that schoolyard rhyme…
The more you read
the more you learn
the more you learn
the more you know
the more you know
the more you grow
and so it goes…

I am lucky, to be me, in this country, with a free health care system and a carefully regulated medical insurance industry.  I am in a very privileged position as far as my genetic information is concerned, it’s not going to affect the health care I receive in our current political climate.  Recently, the FDA put a stop to genetic profiling reports for medical purposes from the company 23&Me. I assume this is because the implications for people in the USA with regards to insurance and health care provision were too complex. And our genetic information should be handled with care.  We should have control of it. There are ethics and questions to be considered.

I was less concerned about whether or not this information might compromise my insurance picture down the track than some might be.  In this country, and because I was late to the private health insurance party, I have been declared uninsurable.  Yet I am still cared for in our hospital system and my medications are all subsidised.  In Australia, insurance companies are required to cover anyone, after a stand down, even with pre-existing conditions, so I guess Australians don’t need to worry too much either.  Is that true, my cross-the-ditch-cousins?

I feel quite excited about what the science of genetics can already tell us.  It gives me enormous hope for the future of medical research.  It puts me in mind of the medical scanning machines aboard star trek enterprise and I long for the day when patients can be assessed by a comprehensive diagnostic process, 100% accuracy, questions answered, measures taken. 
Do you think that day will come?

It’s not the first time my genes have been tested.  When my Mum found out she had ovarian cancer, she agreed to have her DNA tested for a mutation. They had just discovered that some familial ovarian and breast cancers showed up a mutation on the BRCA-1 and BRCA-2 genes.  My Mum had the BRCA-1 mutation.  There was a 50/50 chance that Mum’s kids would carry the mutation too, so my sister and I were tested. My brothers were recommended to be tested too, but testing has to be a choice for the individual.  In males the mutation is responsible for prostate cancer.

The mutation runs strong in my Mum’s line and we were so nervous.  I can thank my Dad for his genes; I don’t have the mutation.  My sister, too.  But many of my cousins were not so lucky.  There is only one lucky thing about that, we have the technology to test our genes.  Many of my cousins have taken the option to proactively fight the cancer by having preventative surgeries.  It doesn’t eliminate the possibility that they will go on to develop breast, ovarian, or prostate cancer, but it greatly reduces the odds.  What a gift from science to our family at large.  Advance warning, a heads-up.

I am in awe of the science achievements being made all the time.  Clever things well beyond the ability of my brain to comprehend or analyse.  But we don’t have to understand it all to benefit from the advances.  We, and our children, and our children’s children get to enjoy the labours of the lab technicians. And one day, there will be an answer to strange things like Dysautonomia.  It won’t be a mystery anymore, it will be as easy to understand as any other malady.

And people like me, like you, might even get better.

This piece of music is a composition made by my genetic testing company 23&Me.  It is composed based on my genes.  Ha!  The Sound of my Sequence!  Right, time to go and answer some questions: I’m going to go find out about that MTHFR!?