Help, I’m Falling Apart


…the glue that holds our parts together, isn’t holding me!

One of the all time favourite picture books in our house is Tedd Arnold’s “Help I’m Falling Apart”.   It’s a funny little story about a boy who notices strange things happening to his body.  He is horrified! When his parents finally cotton on to what is causing all the distress, they sit him down and explain what bodies do.  His dismay turns into relief.  He is normal.

 

Tedd Arnold Penguin Books 2000
Tedd Arnold
Penguin Books
2000

I so wish the shenanigans my body has been up to were normal. I’ve been trying for a long time to have someone help me identify the cause of my Dysautonomia so I can treat it, and if we don’t find one, accept it.  I feel like we are closer to an answer than we have ever been. As you know, I can’t rest while there are still possibilities that might explain and inform. Something that might improve our lives!  I say ‘our’ because when I am well, my whole family will have a better life. Whatever works for me works for the good of all of us. I want to be ‘normal’ again, that’s all.  I’ve been looking for someone who can explain why my body does all these abnormal things.

You might remember that earlier this year I convinced my General Physician to refer me to an immunologist.  I really wanted to have a conversation with someone who had a passionate interest in auto-immunity.  I have always wanted to believe my problems are autoimmune in nature because then there is a treatment pathway.  I guess it is only natural that I want something that can be treated.  That’s human, right?  If I don’t have an auto-immune aetiology and that has been proven, then I can accept that and carry on with other investigations.  If all of them prove fruitless at least I will know that I didn’t leave a single stone unturned.

Today was the day of that appointment.  The immunologist, Dr Ameratunga was outstanding.  He got stuck straight into my medical history, listened carefully to my answers, took my assorted bits of paper with a promise to do more research.  And then he asked me if i would mind seeing another immunologist tomorrow who works out of his private practice.  The guy he wants me to see is a neuro-immunologist.  And just like that I am booked in to see him.  The neuro-immunologist has already seen my case and consulted on it from Wellington.  He works in Auckland one day a week. I am looking forward to meeting him in person so I can discover if there is anything further he can add.

And, I still have my little seedling of channelopathy hope perched on the windowsill of my mind.   How strange that after two years of languishing with no proactive assistance on all the other fronts, it looks like I am getting help with the other avenues of possibility too.  Lots of positive movement going on right now.  My head is hopeful. I wish it could translate some happy juju to my body.  Sometimes, even one appointment away from home can be too much for me.  Today, I can barely swallow my mouth is so dry.  I am typing with my eyes shut because my pupils are doing weird things. It is disturbing having my eyes open. Once, during a childhood argument my brother called me “A POO WITH EYES IN IT” (best insult ever).  And that is exactly how I feel.  Like a large lump of amorphous refuse. Blinking at the assault of light on my eyes, horrified by the discovery that I am in fact, a poo.

Before I left his consulting room, Dr Ameratunga said “we need to solve this”.  And I cried.  No tears though, they don’t seem to be working today.  Just that chin tremor moment.  I hope he didn’t see. It’s a big rollercoaster ride and finding caring doctors is pleasantly overwhelming. By the time the hubster and I were back in the parking lot, I wasn’t the only one with a tremoring chin.  “What a good morning!” he said, incredulous.  I smiled through my fog. I so sometimes wish I could choose when to have energy and vitality and enthusiasm.  If I could, I would have chosen that moment.  Because that’s all good stuff, right?  I’m making progress on a few fronts.

I just feel too exhausted to celebrate.

By What You Give

 

What would you give for good health?  For good health care?

So many patients I have spoken to in Australia and the United States and in more regional parts of New Zealand, struggle in a system that requires them to give more than they have. Good care in some places, depends on your income. I’ve always been a huge supporter of the public health system in this country.  Our hospitals are free for citizens and often the doctors who work in the private sector are also in public. Expertise is shared.  Our local hospital has supported us through my many admissions, surgeries, my husband’s open heart surgery and a few paediatric visits with the kids, for a broken arm and a gastro bug.  We like to think our tax dollar has been well used.  I always send in my feedback, praising the nurses, thanking the hospital for all the many things they do well.  But our system isn’t always fair. See, I live near one of our best hospitals.  If you don’t, life is much much harder.  And given that the catchment area for Auckland Hospital encompasses some of Auckland’s wealthier suburbs, it isn’t exactly equal treatment for all.

In addition, if your health crisis isn’t always acute, your case will be managed by your local GP, or in my case, General Medicine.  I am one of the ‘lucky’ ones to be overseen by the hospital in this way.  Some other local Dysautonomia patients have had their GP’s referrals to General Medicine ignored.  In fact, my cardiologist’s first referral to General Medicine was ignored too.  I have friends from different catchment areas in New Zealand who have been abandoned by their hospital system, simply because the hospital specialists don’t have answers.  It’s been on my mind a lot lately.  There is a little group of patients here in NZ who need better advocacy, better help.  Our situations are acute sometimes and we will head into hospital for a short, or a long stay.  But mostly, our chronic illness is not well managed by our public system.  We are relatively young, we are aberrations, we are outside the norm.

What would I give to change that?  I’d give my time, my energy, my mind and my efforts. And I do.  That is so much, even though it doesn’t look like much, because all of those things are in short supply.   Surviving each day takes a lot of grit.  Making a stand for better care can be overwhelming.  Why is it that sick people must advocate for themselves?  There are so few of us able to speak out, our voice is tiny. It seems like diagnoses need to be intellectually sexy to get attention. Or at least afflict enough people to make them easy to study and treat.  But we are so few, especially in New Zealand.  We don’t have any of those advantages.  Yet somehow, even a small bit of human kindness can’t be offered up with the latest half-hearted-tick-the-box consultation.  If we can’t have doctors who know, or question, can we not have doctors who are kind?

I saw this pithy quote, framed in a poster once on a doctor’s surgery wall a few years ago. It struck hope into my heart.  Despite the fact that his version was text over a picture of a yacht, which made it slightly distasteful (most people don’t ‘get’ enough to buy yachts from their earnings, Doctor).  Despite the fact that I was about to give him hundreds of dollars in exchange for the hope that he might listen to me, the last part of the quote made me think that he understood things.  Important things about the vulnerability of patients and his responsibility to give his medical brain to the case at hand.  I hoped he might want to give of his listening ears, to apply his scientific brain to my situation.

Screen Shot 2014-07-04 at 9.38.45 am

Apparently, Winston Churchill never said this.  It’s the kind of thing he might have said, but the closest verifiable quote from him that relates to this is the following:

“What is the use of living, if it be not to strive for noble causes and to make this muddled world a better place for those who will live in it after we are gone? How else can we put ourselves in harmonious relation with the great verities and consolations of the infinite and the eternal? And I avow my faith that we are marching towards better days. Humanity will not be cast down. We are going on swinging bravely forward along the grand high road and already behind the distant mountains is the promise of the sun.”  Winston Churchill

That particular doctor did not in fact, know how to give.  He was much like the bogus quote.  Fake.  He nodded and kept his ears shut.  He said ‘yes, yes…’ while he meant ‘no, no’.  He pressed his groin up against me while I was being examined and was offended when I reacted badly. I paid over all those dollars and left the surgery.  Nobody ever bothered to call me back.

I’ve had so many experiences with doctors who earn their living by what they get, yet have forgotten how to give.

And I have had some outstanding doctors.  Who have listened and talked with me, not to me.  I love doctors who don’t assume me to be stupid just because I can’t remember every detail from years of complex medical history.  Who are prepared for the possibility that a non-doctor might have a few brain cells, too. Doctors who write more in their notes while I rifle through my paperwork to find the exact answer they seek.  Doctors who ask good, open ended, probing questions and who are open to exploring suggestions.

But until recently, it had been a few years since I have been in the rooms of one of them.  After the initial flush and flurry of my dramatic Tilt Table, I was a bit of an exotic patient.  Doctors liked to see what my body could do.  I welcomed the interest, it was a chance to talk and raise awareness.  The pacemaker insertion underlined my cardiac issue and if I happened to be at the GP’s office to discuss, say, my cold, I would see the latest rotation-doctor’s eyebrow raise as he read my notes.  And then, another examination, standing obs, sitting obs, explaining.  Then cardiology successfully transferred me to the General Medicine service of our hospital, so that they could coordinate my care between various specialists.  This is because the Autonomic Nervous System overlaps into many medical disciplines and my problems were progressing into a range of areas.  My new General Physician was exceptional.  His name was Dr David Spriggs.

What makes a doctor exceptional? They have to be smart.  But actually, that is a ‘given’ with all doctors.  So what else?  They have to be the other kinds of smart. Intuitive.  Good listeners.  Engaging.  Thorough. Curious. Open minded. They have to be able to hold eye contact, so you know they ‘see’ you.  These things matter.  Dr Spriggs was all of those things.  He had an amplified stethoscope to assist his hearing.  And I often thought, he may have trouble hearing, but it never impedes his listening.  When we came to a hiatus with my treatment, he worked with a talented Registrar to prepare a presentation about me for the Grand Round.  He wanted to canvas his colleagues for ideas.
And some of his colleagues did have ideas.

But then, the hospital moved Dr Spriggs elsewhere and my care was in the hands of the ‘new doctor’.  He summarily dismissed the ideas offered in the Grand Round and said the approach he had decided on with me was, to simply “watch your progression”.  We’ve been with him for nearly two years.  And my illness has progressed.  It hasn’t been much fun for my family to deal with the progression.  It’s been very distressing for me to watch functions deteriorate and disappear, knowing that it is a result of nerve damage that probably won’t be reversible.

We tried to be good about it.  Who are we to judge the approach of the new doctor, any doctor?  We don’t have years of medical training.  I might have read widely on the subject of Dysautonomia, but that doesn’t mean my arts-brain can make good enough sense of everything I read.  We have been diligent and respectful.  Even in the midst of my last conversation with him, I was quiet and respectful.  Determined.  Angry, even.  But still respectful.  I even thanked him at the end of our conversation for the time he had spent talking to me.  Through gritted teeth, but still…!

Then we decided to bite the financial bullet and seek help privately.   And that is how I met my new, new doctor.  Last night.  He doesn’t work in my speciality, but he wants to help me coordinate my care.  He isn’t familiar with Dysautonomia, but he cares enough to read my notes and respond with compassion.  For our first meeting, he cared enough to actually do prior reading,then he made clinical notes about me and devised an action plan.  Almost everything on that plan was to be actioned by him. My hubster’s warm hand, squeezing mine, told me it wasn’t just me that was amazed.  I am not sure if my hubster breathed during that consultation, just in case it was a dream.  Dr Brandon Orr Walker is an endocrinologist.  And he is also a decent, kind person.  He embodies exactly what good doctors should be.

It did cost money to go and see him.  A lot of money.  But I don’t begrudge him one cent.

He might be making a living by what he gets.  But he is making my life matter, by what he gives.
Our system may not be working, but some doctors still do.