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.

Fingers Crossed

At last.  I have a new neuro.  Henceforth referred to as The Newro. 
 Of course, I don’t currently need one. An irony not lost on me this morning!

fingers crossed

I am still full of the new-doc-jitters that some of you know all too well from first hand experience. You’re not sure how much info to take with you. You’re not sure if they will like you enough to want to help you. You’re not sure if you will be the tenth in their clinic, or the culmination of a very bad week. You do know they will be time poor, that goes with the territory.  You know they will be very very smart.  And that makes you a little trepidatious, because so few of the very very smart ones have social expertise. You steel yourself to answer all the questions without being extraneous or verbose. You hope that you’ll just be able to converse. Like humans.  You decide your plan is to just turn up and talk about things, because that seems the most sensible thing to do.

In addition to these new-doc-nerves, I feel a strange sense of illegitimacy.  It feels profoundly odd to be heading into The Newro’s rooms when I am feeling so well. I doubt if he has any well patients at all.  But if I don’t take this outpatient appointment with him, introduce myself and explain why I am hoping he’ll take me on, I may find myself sick again and without a neurologist. In our public system,  that will mean a long delay before I am on the neurology outpatient books again. I guess I am insuring myself against possible relapse, getting my ducks a row. I was first recommended this neurologist over a year ago, when we paid to see a private Rheumatologist, so we could rule some things out. He felt I needed a Neurologist who had an interest. And he knew one he thought would be a good fit.  Then six months after that, my neuro-immunologist asked me if I had a neurologist I would like to be referred to. I remembered the name of The Newro and the referral went in. So it’s been a convoluted journey.

I’m secretly hopeful he might have a fresh perspective on things and might be able to shed some light on why I have responded so beautifully to high dose steroids when it doesn’t seem to do the same for all Dysautonomia sufferers.  My immunologist and neuro-immunologist are at a loss about that. And I wonder if he has some theories about cause, and some ideas of what we should do if it all comes crashing down again.

I’ll write some more after the appointment. Right now, I’m off to my girl’s school assembly.  She’s in line for a certificate and I want to wave at her and see that shining face grinning back.  I’ll be walking to school, up the hill. I won’t take half an hour to do it, like I used to, with sitting stops staged along the way. I won’t need time to gather myself before the other parents arrive. I’ll leave with five minutes to spare, plonk myself down beside one of the mums I know, smile and chat and be the ‘normal’ person I am becoming. After that, it will be straight out to do chores before picking up the hubster on the way to the hospital. Me at the wheel. (Did I tell you I have new wheels?  So exciting! Even more so because we didn’t have to buy something mobility compatible.  We just bought a used car straight off the lot. It was lovely). So many things in one day. I remember how doing one thing in one day was sometimes too much. I’ve come a long way.

I will try to be mindful, today especially, of how it was before. I want the Newro to understand how vastly different things are to how they were. I want him to offer to help me if I start to slide back there. I hope it will go okay. Fingers crossed.

 

No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?

She’ll Make Her Way

 

One of my favourite music artists is Natalie Merchant.  I love her lyrics, her voice.  She writes songs that seem to come straight from the heart …of me.  My brother, Brett introduced me to her when he was clearing out his collection of CD singles one day, way back in the nineties(!)  That day, he gave me a few CDs that today are still my favourites.  “You’d like this” he said, handing her over.  And I have loved her ever since.  Thanks bro.

Natalie sings:  she’ll make her way.  And that is what I am endeavouring to do.
I am over waiting for a certain doctor to care about my case enough to be proactive.  I am taking action myself.  Tomorrow I’m off to see a private specialist in the hope that I can raise a few questions with him and in particular, in the hope that I can get a referral to a particular Neurologist in Australia. He is on the eastern seaboard, treats other patients with Dysautonomia and is less likely to say “Nobody here knows anything about it” and consider those words to be a full stop to my concerns.

I am cautiously optimistic.  I don’t know if tomorrow’s specialist will say “That’s not how we do things” or “I can’t refer you to overseas doctors”… both of which have been told to me before.  I hope, because I can’t help it.  Yet I am cautious because my experiences have taught me that some doctors egos (or arrogance/ignorance) are bigger than my needs.  I keep saying to myself: Brace yourself, Rach.  Don’t get your hopes up too high

Until now, all my medical appointments have been within the public system.  It has crossed my mind that maybe, being a private patient this time, therefore, a ‘customer’ I might get better ‘service’.    But in a nation not known for it’s customer relations; I’m wrapping myself up in some wait-and-see mentality. It will be interesting, I’ll let you know how it goes.

Part of my preparation tomorrow is to get my medical files into better order.  The picture below is how my documents are filed at the moment.  I’ve already filed each bit of paperwork under it’s category, now I need to date order the papers in each section.  The new doc already has a brief medical history and a powerpoint presentation from the Grand Round that was done on my case.  I hope he has managed to look at them.  The rest of the info I will comb through today and pull out anything else that might be useful.   Who knew being sick meant being good at admin?!

10301419_10152600275925815_4950750405380212656_n

My cautious optimism is being meted out quite a bit lately! Blogging is such a powerful tool.  Since I started my blog six weeks ago, I’ve had more than 30,000 page views.

Screen Shot 2014-07-02 at 6.45.13 pmI did hope when I began my blog, that maybe someone with some medical knowledge would read it and have an idea occur to them.  And last week, a beautiful and hopeful email landed in my inbox.  A doctor in Christchurch emailed me, wondering if perhaps a certain aetiology had been overlooked that might explain some things about my muscle weakness, occasional gait issues, achiness and episodes of paralysis.  I am busy researching and exploring the possibility of her ideas holding some answers for me.  See why there is so much optimism around the place? 🙂

I love the song “Wonder” because the story is about a girl, like me, who is different.  Of course, not exactly like me; there are no doctors coming from distant cities just to see me… I wish! Guess that is why I am planning to take me to them! This song resonated strongly for me. Have a look at these lyrics:

Doctors that come 
from
distant cities

Just to see me
Stand over my bed
Disbelieving
what they’re seeing

They say I must be
one of the wonders

Of god’s own creation
And as far as they see
they can offer
me

No explanation

Oh, oh, I believe
Fate smiled and Destiny
laughed 
as she came to my cradle

“Know this child will be able…”
laughed, as my body she lifted
“…know this child will be gifted,
With love,
with patience, and with
faith

She’ll make her way…”

I like to think I’m like that girl. Making my way, with love, with patience and with faith.  Some days there is more of any one of those than the others, patience is a bit sparse in my arsenal. Overall though,  I’d say I’m making it.

Sometimes I do wonder.  Why?
Other days, I think I might just be

one of the wonders
of god’s own creation!