In Mortal Danger

We are all in mortal danger.  No exemptions, no alternatives, it doesn’t matter if you are sick or well, at some point it will happen to each one of us. Mortality is part of vitality; it’s just the part we studiously choose to ignore.

I’ve just put down a book that should be compulsory reading for every adult. And not just once, we should all re-read it every few years.  Have you read “Being Mortal” by Atul Gawande?  He is what is known as a physician-writer. It’s an entire genre!  Last year, I wrote briefly about something discussed in another physician writer’s book:  ‘One Doctor’. Brendan Reilly is another brilliant physician-writer who tackles the subject of the confounding American Medical System. Oh my, that was a great read too, so timely and thought provoking. Where are we going with our own medical system? I sincerely hope not to the same places… but there are some similarities.  Brendan Reilly’s book is a brilliant companion to Gawande’s ‘Being Mortal’. I think those two authors would have great conversations!

Somehow seems unfair that people gifted in medical ‘brainage’* can also be gifted writers, I suppose it follows that Gawande and Reilly are good at sports and incredibly good looking too (!) but I haven’t seen them so I can’t confirm. Some people just get it all!

Atul (I feel we are on a first-name-basis now I have read the book) writes about a very uncomfortable subject.  I’ve written about it here, but my words were inadequate in comparison to his excellent (and detailed) discussion. It’s difficult to convey in a blog post a message he has delivered so beautifully in his book. I love his writing style; fluid, easy.  He’s a compelling storyteller.  It’s through the stories in this book that he gets us to honestly look at the elephant in the room.  We are mortal. We never want to look at that, we never want to engage with what it might mean about our lives. Somehow, our brains slip away from the realities all the time. But Atul forces us to look, to think, to examine what our own wishes are for the inevitable. Not just the inevitability of death, but of old age. His book is a crucially important guide to the subject of both and an important criticism of the directions of gerontology in traditional western medicine.

picture of the cover of Atul Gawande's book 'Being Mortal'
Atul Gawande :: Being Mortal

Have you ever heard parents ask children to promise not to put them in a home in their old age? Or seen people refuse to use of mobility aides, or even prolong the lives of their loved ones with unnecessary medical interventions for their own reasons? I have often. We see and hear examples of people grappling with issues around mortality every day, but we don’t really examine how it could be better. It is very difficult for any family to make decisions about end-of-life issues when they are emotionally distraught, far better to engage with them long before the inevitable, to remove the burden of big decisions. We can all do this by making our wishes clearly known. And I don’t just mean “if I am brain dead turn off the machine”. There are a lot of statistically more likely scenarios to consider. Atul knows this, because he’s been in that position with his own Father, as well as countless patients. I know this, because I was with my Mum when she was going through her final days.

The older we get, the more often mortality will come and slap us in the face, that of others and eventually our own. But have we considered the type of death we might prefer if the choice were ours? Have you ever heard of Advance Directives? Even more importantly, have you discussed the curliest of questions with your family?  Atul provides us with four thought provoking questions to guide our discussions. I won’t tell you what they are, because I want you to read that book.

When my Mum was about two weeks from her death, she was distressingly uncomfortable. An enormous tumour had enveloped her abdomen and was pressing on her diaphragm. She didn’t want morphine, but eventually asked for it; the pain was too extreme. Hospice care was compassionate and careful but also generous; they helped her with pain and anxiety, they talked with us, and with her. Food was still being brought to her, and desperate for sensation, taste, life, she would try to eat. “I’d love x, y or z” she would say wistfully “…or just something… juicy”. We would race to meet every whim. But there was nowhere for the food to go, the tumour had encompassed her stomach. And her gag reflex had stopped. She knew eating was pointless, she knew she had to vomit or endure more pain and nausea. She was too weak to help herself out of the predicament, so she asked me if I could stick my fingers down her throat to help her relieve the situation. I would have done anything she asked me to do. My precious, frail Mumma. I helped her to vomit in the way she had helped me do countless things when I was little. With love.

Soon, she chose to not eat anymore. The hospice nurse, marvelling in a later conversation with me, remarked on my mother’s tenacity for life. She mused, just as an aside, that patients who continue to drink water last longer than those who don’t.  It is obvious really, isn’t it?  But when you’re there in that room, watching your loved one facing death, deep in the desert, it doesn’t seem so.  It was revelatory that death by an aggressive cancer would not be swift, but a long and painful process. That death would eventually be by starvation, or dehydration. It seemed so grotesquely cruel.

Mum’s final days passed in the torturous way they do at the sharp end. She drifted in and out of fitful sleep, her breathing ragged. She could barely talk but would turn her eyes to the straw in her cup and when we held it to her lips, she would drink like she was traversing a desert with no reprieve. We swabbed her mouth out with special sponges when she could no longer produce saliva. We watched her suffer, limp with inability to do anything that could really help.

One morning, awake and waiting for the next shot of pain relief, she croaked

“-tell me why I can’t just die?”

I thought about hwat the nurse had said. But I was afraid, because I knew my Mum. I knew her steely determined side, I knew if she wanted to go, she would make it happen. I looked into her face, taut with pain.

I confess that watching her suffer was the most agonising experience of my life.

I confess I hoped that there might be an end to the horror, for her and for me. And I whispered:
“Mum, the nurse said it’s not possible to live without water.”

For a long time, I felt guilt about telling her that. But her eyes shone up at me. She couldn’t talk. But she refused any more water. By the next day, she had drifted off into a coma. That was her only way out. A desperate, dry, gasping and rasping before a quiet coma. And I will forever feel responsible for my part in how it played out.  Did it save her from more suffering? Possibly. Did she want to go? Absolutely. We were extending her suffering with all the love our hearts and hands could muster. “Another sip Mum… come on, water is so good for you”.

I wish this book had existed when my Mum was sick.  I wish her faith in God’s healing had left some room for us to talk about such things. I wish that she could have had less chemo, and more good days.  But of course, more than all of that I just wish she was still here.  It is a regret that I have that I had pushed her to fight, to try, to hang in there, all because my own fears about life without her were so all-encompassing.

Atul Gawande’s book would have been useful back then, but it is still incredibly useful right now. Mum’s death was my first proper shock into the reality that death finds us all, but being sick for six years forced me to think about it even more. We are ageing, and so are our remaining parents. There are things to consider, things to discuss. I think about my own children and know that I never want them to be in the position of feeling responsible, or guilty, for any aspect of my wishes. I want to take that burden off their shoulders.

Have you had the discussion?

PLEASE read this book, there is far more to it than you might think. It is uplifting, not depressing. It could change your life, and your loved one’s lives for the better.  One thing I know for sure, we are all in mortal danger, and apathy could steal from you the things that will matter the most to you.

It’s time to talk.

 

*I know, ‘brainage’ isn’t a word, but it should be.

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?

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

4 Ways to Better Medical Literacy

4 ways to better medical literacy
1941489_10153086796300815_4494216759929293380_o

A couple of years ago, I was at a function.  I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia.  Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions.  😉

This guy, like many doctors, was a very intelligent person.  He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well.  Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients.  The term is not something I had encountered before, or heard from others about.  The attitude he spoke of was familiar to me, but not the expression.  Have you watched a doctor ‘think’ this before?
A patient who talks the talk? Who has been googling? (insert eye roll)  Could it be a case of somatisation?

Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosematic illness.  Hypochondriasis. There are a range of psychiatric disorders which follow this pattern.  Sadly for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own.  Dizziness, chest pain, abdominal problems.  This is why for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts.

Recently, the term ‘medical literacy’ came up in my readings.  It reminded me of that social encounter with the doctor and his word ‘medicalised’.  I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon to the average patient.  We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on.  Especially when consultation times are squeezed, fast forwarding through all the translations between doctor speak and layman’s terms, is practical.  Also, have you noticed how many letters there are in medical words?  Phew, acronyms were invented for a reason!

We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace.  So much so, that new members take a while to learn the lingo.  For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions.

In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term).  The Ministry of Health’s report into health literacy in this country defines it as:
“the degree to which individuals have the capacity to obtain, process and understand basic health information and services in order to make informed and appropriate health decisions”
(Kickbusch et al., 2005; Kōrero Mārama, 2010)

Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way.  Literacy really means being able to make sense of information in context.  For people without science based or medical degrees, it can take some time!  For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis.  My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart.  My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information.  There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas.  I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here.  It might relate to my condition, but not to what is possible for my treatment.

All of these factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness.  Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care.  Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’.  Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health.  This is a key success component to getting the help you need from the professionals out there who are qualified to help you.

Here are four ways you can improve your health literacy:

Ask questions
Don’t be afraid to ask.  A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference.  I didn’t.  It’s a med school 101 reference.  I was confused, so I said “Can you explain?  I don’t understand …Occam’s what?”.  Occam was a monk a very long time ago who put forward a problem solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it).  He was explaining why, even though I had recently discovered I have a high titer (often present with another auto-immune neurological disorder, Stiff Person’s Syndrome), the one he thinks I have (Pandysautonomia) is more likely to be what is wrong with me.  Asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants.  In my experience, most doctors like to be asked questions, particularly for clarification.

Read all about it
Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis.  Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition.  They will have access to information too.  Read it all, even if you don’t understand it.  If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition.  If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading.  There is a great deal of pseudo-science out there that can trick unsuspecting readers.  Run it by someone with more knowledge than you before freaking out.  😉

Find your Tribe
Facebook and the internet abound with groups, forums and news boards  that bring people with the same conditions together.  Look for groups with a strong set of user guidelines.   Read them and see if you agree with their code of conduct. There are some really awful groups where bickering and mindless trolls like to stir the pot.  Avoid those.  If you find yourself in one, leave.  There are much better, well run groups of like minded people out there.  It took me a long time to find a group that I consider to be responsibly administered.  When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood.  Finding your geographically relevant tribe is good too, because then all of the information will relate to your experiences.

Delve into your Data
Get hold of your medical records.  In New Zealand you can request these from your GP and your District Health Board.  Organise them into a file and refer to them. Examine your results and look for patterns.  Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor.  Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition.

Why does it matter?  If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary.  Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower.  Not sure about that?  This is what the Ministry of Health had to say about people with poor health literacy:

I found this at www.healthliteracy.org.nz
Screen Shot 2015-01-06 at 7.17.11 pm
The only person who will ever care about managing your health plan properly, is you.
Literally.

 

Medicine’s Missing Link

DoctorandtheDollI’m reading a fascinating book at the moment.  I’ll review it on here once I have finished it, but for now, I just want to write about an issues it has already raised for me about our medical system as it is presently.
The book is written by a doctor.  It’s about being a doctor in the States and the ways things have changed since he started being a doctor.  It’s a similar story to what I’ve heard from friends here, who are specialists and GPs, too.  Medicine isn’t what it was.

What ever happened to that old fashioned community stalwart:
‘your’ local doctor?

I used to have a GP, but then I moved far away from her rooms, had babies, moved on with life. I started going to the super clinic close to our house.  It was convenient to take the kids there, cheaper by far and had on-site x-ray and various clinics, as well as a pharmacy.  Every time we went, we’d see a different doctor.  Half of our allocated fifteen minutes would be spent with the GP trying to decipher what the last doctor had recorded in the notes.  So I would tell them why I was there, what we talked about the last time, where it was at, as I recalled it.  If the kids needed to be examined, or a script written, it would happen next.  But more often than not, the worries that had taken me in to the GP were met with “she/he seems happy, it’s probably nothing”.  I would leave, no less worried and even more annoyed for the time spent incubating germs in the waiting rooms.

As seems to be the story shared in mother’s groups across the country, sometimes, at the big clinics, things get missed.  My ‘happy’ daughter was actually suffering from severe ear infections.  Without treatment, scar tissue formed across her ear canal rendering her deaf on one side. I had frustratingly visited the clinic with her several times, enduring that patronising glance (some) doctors give mothers.  Each time, asking about her ears. Each time, they looked in her ears, smiled at her and said she was fine.  When her speech began to change, we sought alternative help. An ear nurse specialist took a look with a microscopic camera, tested her hearing and explained what was going on.  If the doctors had ‘known’ my girl, they would have recognised that a smile didn’t mean she was happy. It meant she was being polite to the grinning doctor.  If they had known me, they would have understood that I wasn’t being a neurotic mother.

We have since moved again.  Enter, a new GP, close to our home but not part of a clinic franchise.  She is getting to know us and learning our back story.  It’s a relief to have a relationship with a GP again, someone to take care of all the little bits and pieces that would otherwise be missed.  The niggles, the ‘normal’ wellness issues of a family.  It’s great to know that she is receiving all the correspondence from my specialists, that she is being copied in on test results, referrals, discharge summaries.   For the first time since I got sick, I am less worried about keeping track of all my own records, I know that she is onto it all, taking primary care of my health, in the old fashioned way.

When did it all change? It used to be this way!  Everyone had ‘their doctor’, who if necessary, would communicate with anyone who needed more information.  Their doctor would be the one to refer them to specialists or hospital if needed, the communication channels would be clear, simple, unclouded.  The only person deciphering their own notes was them. The only person other professionals needed to contact, was them.  When we super-sized community medicine into super clinics, we lost something so important.  To ‘know’ a patient is to be able to make better assessments of their situation. Perhaps, knowing a patient also helps doctors to care for their patients, to see them as more than another fifteen minute walking infection risk in a busy, busy day.

In the book I am reading, Brendan Reilly, an Internal Medicine specialist, expands on the issue from the point of view of the ‘hospitalist’ doctor;
“We’re caught in the middle of an

It’s a frustration patients all over the world, feel.  Dysautonomia can affect all organ systems controlled by the Autonomic Nervous System.  We don’t fall neatly into any one sub-specialty.  Depending on the presentation of our autonomic dysfunction, we will have any combination of various specialists.  Neurologists, Opthalmologists, Cardiologists, Endocrinologists, Gastroenterologists, Urologists.  Coordinating all of these in the past, would have been your local doctor.  Your General Practitioner.  Here in New Zealand, depending on your district health board, (and it seems on your particular pathway into the health system) you might have been appointed a General Physician.  General Physicians are part of the Internal General Medicine team of the hospital.  They see long term patients who require care from more than one sub-speciality.  The are the problem solvers, the diagnosticians. They should trouble shoot your symptoms, find the cause of your ills, devise a plan for your care and coordinate with your specialists and GP.  If you are with a clinic, however, your letters may never get in front of the same person. Your care, as a result, may well be compromised.

I don’t know what the solution is.  Medicine is making big advances all the time, things are changing; the way that care is delivered is being re-designed all the time for better cost effectiveness, among other objectives.  But are these changes helping the increasing numbers of people with multiple co-morbidities, long term systemic chronic illnesses?   The reason I returned to the pricier option of a local GP, was because I needed to know that the communication channels were clear and straightforward for all involved in my care.  It was a good move.  It’s been, not so much back to the future, as forwards to the past. And while it is still possible to have a local doctor, in rooms one block from my house, I’ll be staying with her. She’ll be ‘knowing’ me and my family.

I found this quote when I was looking for the classic Norman Rockwell image I used for this post.  It comes from the Penn Medicine Newsletter:

doctoranddollsallysapega

I’m curious:
Do you have a local GP?
  Why or why not?
Do you see the same one every time?
Are you happy with how that works out for your overall care?

Property

14006_10152927307200815_3285504296703097116_n

The sheets I lie on have HOSPITAL PROPERTY stamped all over them.  I wonder who else has slept on them, cried on them, died on them. The room itself is a perfect duplicate of every other ward I’ve spent time in at this hospital.  I could make my way to the bathroom with my eyes shut. The differences between wards always end up being the people. The patients, the staff, the tea lady.

Today I can hear great guffaws from the nurses’ station.  Brisk footsteps along the corridor.  A child trying out the acoustic echoes in the atrium outside my window.  The child is five floors down… the acoustics are impressive. Once there was a violinist who played down there.  He used to come and practise there, attracted by the same sound qualities that fascinate the yelling toddler.  The sound circles around the atrium and returns, fuller than before, echoes onto itself, folding, as though the sound itself could travel backward in time.

The nurse came in with towels this morning.  And a fresh gown. My room mate commented that it was the first time this week anyone had suggested a shower.  I showed her where the linen cupboard is, for next time she wants a rebellious, self-determined shower.  There are things you get to know when you are a frequent flyer.

I had my shower, sinking gratefully into the shower chair.  Wishing I had one at home.  I let the warm water cascade over my head for longer than usual.  Closing my eyes I thought about my home, my bed.  The peaceful quiet.  A song slid through my mind and remained there, playing on refrain for the rest of the morning.

“…in the easy silence that you make for me,
it’s okay when there’s nothing more to say to me
it’s the peaceful quiet you create for me
and the way you keep the world,
at bay
for me”

Dixie Chicks

There’s no place like home.  I feel like a big old baby, lying here in this bed, wishing I could go home. I want the nurse to come in and murmur something motherly.  Something definitive.  A time frame, a decisive sentence.  Instead we all lie here, suspended from the rafters by invisible lines.  We are the puppets on long strings, the marionettes who lie jumbled in a heap, waiting to clatter to attention when the consultant arrives. He stands there at the end of the bed. Discussing you for a few moments with his humbled registrars, before sweeping off to the next jumbled pile of limb, heart and head.  As he leaves, my pieces clatter back onto the bed, out of order, out of sequence.  I want to put them all together with superglue and snip the strings.  I want to walk out of this marionette maison, better than when I came in.   The longer I stay the less my body wants to work as a whole.  My pieces and parts falling further away from each other, disconnected, fractured, dismembered, disarrayed.  How will I keep pulling myself together?

I know I am the glue.  My own determination is what holds me together.  But it dilutes with every hour I am here.  Starved of the peaceful quiet I so need; the words of comfort or reprieve.  I look down at my hospital gown. Hospital Property is printed all over the blue fabric. I am branded like the sheets.  I am morphing into the patient puppet.  Voiceless, quiet, does-as-told.  It’s too hard to fight against the system.  It’s too big, too entrenched.  I close my eyes tight against the day and the thoughts and the words.  Against the visitors to the bed beside me; loudly eating fried food.  The teenager’s parents, hovering over her, worried about her poor head. Cradling it in their arms and cooing soft sounds into her ears. I wish they would all go away.
I wish I could go away.

Instead I stay.
Property of the Hospital.

Parking your Objections

Screen Shot 2014-11-14 at 9.11.34 pm

See that girl over there?  She looks like she is in the glow of good health. Her cheeks are flushed, her hair is shining. Why is she using a mobility park?  Oh my word.. she even has a cane, but no limp!  She’s a faker for sure. Does she think she is too important to have to walk 10metres? Who does she think she is?! She must be using someone else’s pass and cane.  I bet they’re her Grandma’s.  You’ve heard them do exposes about exactly this kind of deceitful self-centredness on the TV.  It’s outrageous!  You are so incensed you decide to go over to her and give her a piece of your mind.  On behalf of all the truly disabled people.  You’ll speak up for them!  It is your civic duty!

You catch her just before she enters the supermarket.  She turns at your shout, a smile ghosting away from her face.  Her eyes seem clouded.  Maybe she is tormented by guilt!
“Hey, YOU!” your voice is angry.  Your finger is stabbing the air in her direction “You can’t just breeze into one of those parks and use the pass of someone else!  It’s not on!  Those parks are for people with WHEELCHAIRS.  That’s why there’s a wheelchair on the sign!”  You are full of justified fervour,
“…I don’t see a wheelchair!  Go and park somewhere else and LEAVE THE DISABLED PARKS FOR DISABLED PEOPLE”. Her lip looks a bit quivery, you notice with satisfaction.  She better not try the sob story with you.  

“Thank you,” she says, her voice is controlled, “for looking out for the rights of people with disability.  Although you don’t see it, I am one of them. I have a progressive neurological disorder.  You can’t see my disability by looking at me. I find it hard to walk far, but I like to do what I can when I can”

She sounds like she has said that before. She turns and walks away.  You feel awful.

How were you supposed to know? She looks fine!  Your outrage fizzles, your hand drops down by your side.  You’re feeling a bit like a rapidly deflating balloon.  You stand at the entrance to the supermarket feeling a conflict of emotions.  You were only trying to do the right thing!  You watch her walking away, and you wonder about what is wrong with her.

She looks normal…

——————————————————————————————————————

Dysautonomia is a strange thing. There are ebbs and flows, bad days and sometimes, better days.  As my old friend John Denver put it.  “Some days are diamonds, some days are stones”. On those days that are stones, I have usually sunk to the bottom of my get-up-ability. I’m not driving.  I’m certainly not parking. And nothing is getting done that needs to get done. A stone day is often followed by a series of scrape-yourself-up and push on days. They’re days when I am definitely not rocking it. They are really hard days. I might make it to the supermarket and be able to budget the distance to get something essential.  On one of those days I’m unlikely to make it around the whole place.  I certainly wouldn’t make it to wherever I need to get to within the store if I have also had to walk the length of the carpark, there and back.

I have a mobility pass for parking. I use it when I need to.  But I am careful. If I am able to park in a normal park, I always do.  If I am able to walk further, I will.

I have a fierce determination that if there is anything I can do for myself and my crew, I always do.  In order to maintain that kind of control over my life, I need to use the services our community provides for people with limited mobility. Sometimes the symptom-ricochet for pushing through is swift and severe.  But sometimes, even that is worth it.  Because I like to do for me.  I think it is good for me, good for my body and good for my brain. I’ve been told I need to get better at accepting help, but I don’t know…  I think I need to keep doing as much as I can while I can.  It matters to me very much. Maybe there is an element of pride in there that I will have to examine at some point.  But in the mean time, I do what I can whenever I can. I use my pass if I need to.

My cousin’s husband has a specially modified vehicle because he is only able to mobilise in a chair.  He has quadriplegia after a disastrous rugby tackle. I have seen first hand the frustration when people have parked too close to his vehicle for him to get back in it.  I have watched cars, circling carparks on a busy day; duck into mobility parks for a quick dash in to the coffee shop, because there are only mobility parks free.  Sometimes, I too have looked through the windows of cars parked in those spots, searching for mobility cards, wondering why the people are parking there, wondering if they are legit.  It’s grossly unfair that there are people out there abusing the service provided for people who legitimately need it.  But there are also people out there abusing the people who legitimately need it.  Not all disability is visible.

The point of this post is just to ask people, well meaning people, to adopt a considered approach to their wonderfully caring, on-behalf-of-what-is-right, vigilante advances. Please, first check to see if there is a permit. Don’t assume that it is stolen.  If someone has a permit; they are permitted to park in mobility spaces. Permit applications must be signed off by doctors.  People can’t just cut them off the back of a milk carton. So if a permit is present, you really need to presume that disability is also present, even if you can’t see it.  If you are certain (there is no permit on the dash), alert the management responsible for the carpark.

I wonder, why don’t permits have a photo ID component?  I think that might resolve this whole issue.   What do you think?  Have you seen people abusing the mobility parking near where you live?  Have you ever approached them?

If you would like to read more about how this issue is being addressed here in New Zealand, you can look here.

Here’s my mate, singing about those days of diamond and days of stone.

 

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.

The Impatient Patient

Screen Shot 2014-06-03 at 10.10.26 amScreen Shot 2014-06-03 at 10.09.56 amScreen Shot 2014-06-03 at 10.07.50 am

There is a lot of frustration happening in the world of Dysautonomia, in fact, in the worlds of all chronically ill patients.
For some, diagnosis is fast and a cause is identified, treatment begins.  Sometimes treatment is successful.
For others, for so many… diagnosis takes years.  People are often mis-diagnosed first with anxiety, depression, hysteria and all manner of strange conditions.  Until someone starts to put the puzzle together, piece by agonising piece.  Someone recognising that the pattern of symptoms is autonomic is usually the start of that process.  Sometimes, that someone is the patient themselves, forced into a position of applying their non-medical brain to medical journals.  It is a scary and difficult job, sifting through medical literature, looking for words you recognise, learning as you go.  But you have to.  Who else will take the time?  To whom else does your life matter enough that the research is worthwhile?

I don’t know why some doctors are excellent and others are not.  But I know what the experience of a good doctor is from a patient’s point of view.  A good doctor is prepared to listen.  They will ask you good, probing questions.  They are thorough, respectful and give you time to respond.  That’s important when your brain is foggy and your words don’t always step out in the correct order.  It requires patience toward the patient. I guess that is hard when the schedule is busy and they’ve been listening all day.  But a good doctor, even after years of practise, can still say “What if?” and “I don’t know, let me see what I can find out…”.  A good doctor is prepared to engage in the conversation with an open mind.

I’m sad today.  Sad because since I’ve been working on this blog, I have a much more personal realisation about the affect of Dysautonomia on the lives of people who have reached out to me.  Even here in New Zealand.  I have had messages from people, more than ever before.  Can you help me?  My doctor won’t help me.  I need information.  I need recognition.  I need support.  They are asking:
How can I make my doctors care about me?  Take notice? I am declining. My life matters.  Why don’t they care?

Like them, I too, am locked in a frustrating dance with a doctor who doesn’t seem to care. He is my main specialist and has taken over my case from someone who cared a lot. The contrast is painful.  When I am in his consulting room I can see his attention drift off, his thoughts elsewhere.  He often begins by saying things like “I see you have had an admission, but you are quite well now?”  The question mark is an afterthought.  I am supposed to say, ‘yes’ and go through the motions of the rest of the consultation so he can tick his boxes.  But I am not ‘quite well’.  My daily life difficulties are increasing all the time.  We are accommodating the changes the best way we can.  Navigating the path of progressive illness without guidance, lit only by the flame of our own frustration.  He has decided the best approach with me, is to “observe the progression“.  And because he has decided this, I must oblige.  I am powerless to suggest, enquire, wonder, report, relay, present, offer… anything further.  Because the doctor has decided.

But, Doctor.  This life I have.  I love it, I need it. Even broken and interrupted by illness, I want to be here.
It is valuable to me, Doctor, in your armchair.

I choose to fight for my family, for the love that pulses out past my illness and into every corner of their lives.  I choose to fight for the autonomic nerves that have not yet been damaged by this disease.  The longer you leave it, merely observing my progression, treating the symptoms, waiting, watching; the more my ganglia are picked off, one by one. 

And there it goes. Another day.  No other dollar.  I am not working, I am not teaching.  My work to do was worthy, wonderful work.   I had much to contribute, I like to believe I still will. 

And there.  Another day. My children.  Growing older, stepping out beyond yesterday and into a tomorrow I need to be part of. 

Another day; my husband.  Carrying burdens too heavy even for his broad shoulders.  Pushing on.  I want to help him more, be there for him, too. 

This life is valuable, doctor.  Do you see me? I am your impatient patient.  The one who would rather not be a patient at all.

Should you come into my home and observe my life, not just my disease progression, you might try to take some action.  You might begin to listen.  You might think us worthy of that much. You’d be welcome. 
Doctor, get up from that chair. Get down from that high horse.

Another day came around.
Another day with no more answers,
no direction, no help.

And another day came around,
and another patient wrote to me.
Can you help me? 
Can you help me find a pathway through?

Can you make them see,
Me?

Another day and I am counting
More ganglionic death within my frame.
Less function, more frustration.
And you, Doctor, barely know my name.

Another day, but are you counting?
do you record the way I do?
do you read the publications
scour the boards to read the news?

In another country,
I might be getting something done.
I might be making a kind of progress,
I might be a …’lucky’ one.

In another percentage band,
my life might take different course.
In another doctors hands,
my life might matter

as much as
yours.