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:


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?

Words Don’t Come Easy -How to Help Yourself

How to Help Others Help You Too.
Image and Words by Michael Leunig

Today’s post has been inspired by some homework from my Health Psychologist, Anna.  She is a pretty savvy lady and I really got a lot out of the chapter she gave me to read.  It is called A Caring Hand and it is from Russ Harris’ book, The Reality Slap. Sometimes there is a gap between reality and what we think it should be.  Sound familiar?

Like the difference between the me I see in our holiday snapshots, and the saucy model I felt like I was!

Or the way you think other people should treat you and the way they do.

If you have a chronic illness, this reality gap is something you deal with every day.  Maybe even in relation to those closest to you.  It’s really hard for people to know what to do, how to be.  It’s really hard for people to sustain their compassion, it can be exhausting.  Even those closest to you sometimes need some respite from approaching things in a sensitive way.

Some of us are on our own for a lot of the day.  That’s just reality. And that is when we can really help ourselves, rather than looking to others to meet our emotional needs.

Before I carry on I want to explain the origins of the word compassion.  It derives from the latin.  Com meaning together and pati meaning suffering.  Suffering together.  But how can that apply when you on your own?  I am discovering that you can be your own best friend.

Bad things happen to everyone. And when they do, we naturally hope for kindness from those around us. When something painful happens to you, like a difficult diagnosis, a death in the family, a marriage break up,  a miscarriage or a catastrophic loss of property… there are so many things that might constitute a reality slap… it is natural to seek comfort. It’s instinctive to seek support. Do you remember the peace that comes with a warm and sensitive response from someone close to you?  Maybe it was one of these responses?


These responses all communicate how much a person cares about you and your situation.

And then, there are the other responses. The ones that fall through the gap.  They are common responses in society because we have failed as a community to teach each other that they are not useful.  People don’t know. I think it is really important to remember that these responses often come from a place of good intentions, even if they are not sensitive:


Proverbs and quotes are tricky territory. These may in essence have truth for the human condition, it’s probably why they have become popular.  But they can be invalidating and unhelpful.  They ignore the pain you are experiencing and can feel judgmental.  The hidden message of all of these types of platitudes is “Harden up, look on the bright side, it can’t be all bad”.  When some days, it just is all bad.  Here is what Harris says about that, “If they are the first thing you say to someone who has just been slapped by reality, you will come across as uncaring or offensive… as a general rule, a compassionate response must come before anything else. If someone leaps in with advice, proverbs, positive thinking or action plans without first demonstrating his or her compassion, we are likely to feel upset, annoyed, offended, hurt or irritated -often without quite realising why this is”.

Some of the responses in the second group can actually be really helpful and practical, if they are preceded by caring and empathy.

Mind the gap.  It’s easy to fall into it when someone responds to you from the unhelpful responses.  But we don’t often enough consider how we are responding to ourselves.  Helpfully, or unhelpfully?
Ask yourself:

Who is the one human being who can always be there for you in your life,
in any moment, no matter what happens?
Who understands you better than anyone else on the planet?
Who is the only one who knows how much you are suffering?

Harris suggests that because we are always available to ourselves, we can always do something to help ourselves, even when we think we can’t.  We can be our own first responders. Many of us do, already, practise excellent self-care. Many of us have learned by necessity to nurture ourselves through suffering. But sometimes, our self talk is more like the second list of responses. I know for myself, that I tell myself to harden up all the time, to push through, to stop being pathetic.  I can be more harsh with myself than anyone in my circle and I frequently am.  He suggests that the relationship we have with ourselves should be similar to one we would have with a best friend.  Imagine, if you always had that friend there to be kind to you when you are struggling?

Self compassion is two-fold.
There is being kind to yourself…

Screen Shot 2014-06-18 at 8.00.12 amResting your own hand where you feel the most pain, as a hand of compassion, allowing yourself to relax and accept the warmth of your own kindness.

Screen Shot 2014-06-18 at 8.00.12 amNoticing when your mind is being harsh with you and gently telling yourself what your kind friend would tell you.

Screen Shot 2014-06-18 at 8.00.12 amAllowing yourself the time you need without judging yourself.

Screen Shot 2014-06-18 at 8.00.12 amReminding yourself that you are deserving of compassion and it is okay to give it to yourself.

…and there is being present with your pain.

It might be your illness, your grief, your suffering.  Or all of these things.  Being present with your pain might be something you are horrified at the prospect of. Here, ‘being present’ is used by Harris in the context of mindfulness.  My homework chapter ended at this point, so next visit I will ask for more.  I am keenly interested in how mindfulness might help to diminish my negative feelings about this illness.  Do you think it might help you too?

For now, I am going to lay a warm hand on my own shoulder and say some kind things to myself for getting this post written.  It has been a tough morning, symptom-wise and I have a big afternoon ahead.  If your own hand of compassion is not enough, get online, join a support group.  Don’t give up.

I hope you can begin to be kinder to yourself today.  Mind the gap, don’t fall in.  It’s good to remember you can make a beautiful bridge to stretch over that canyon.

More soon, I’m seeing Anna again tomorrow.  Watch this space.

PS. Here is a song I heard on the radio just as I finished writing this post.  I always notice the songs that play, I’m sure there’s reasons for them.  This one I am singing for me.
Sometimes finding kind words for ourselves isn’t easy.

Words, don’t come easy, to me
How can I find a way, to make you see
I love you,
words don’t come easy.

And here is a link to Russ Harris’ book The Reality Slap





International Travel for the Chronically Ill

A couple of years ago, we were told that my illness is progressive.  Although we had suspected, that knowledge had an immediate effect on the choices we were making. We became mindful about making memories.

Children don’t remember the things we necessarily want them to remember, and we know that the small moments of connectedness, the simple pleasures are really profound.  But when we recalled our own childhood memories, so many of the best were holiday memories.  We had been hunkering down, like most of our cohort. Trying to get that mortgage paid off, striving to get ourselves into a really secure financial position. We are pretty conservative people and my husband has a risk-averse approach to finances.  You know the sort…If we want to do work on the house, we save for it first.  So pushing the boat out and taking an overseas family holiday was something we had always seen as a big luxury, something we’d do ‘one day’.  But when that neurologist leaned in and said “do the things you want to do with your family while you are still mobile,” we listened.  We talked about the kinds of things we’d been putting off.  And we booked the holiday-of-a-lifetime.

It was all kinds of joy.  The planning was a beautiful distraction. The anticipation provided a daily dose of optimism mixed with excitement.  A holiday!  It took an enormous amount of planning.  There are so many things to think about when you are travelling sick.  Our four week trip to the States was a wonderful thing.  We have been living off those memories and sharing them together ever since.  Our album is already broken from over use, the kids adore looking through and playing ‘remember when’.  We have no regrets.  Even though so many aspects of the trip were really hard for me, physically, I would go back to those four weeks of family memory-making in a heart beat.  Magic.  That’s what it was.



And it’s all been on my mind because we’re at it again.
We’re about to head off for a shorter trip, this time to the tropics.  A week on a tiny coral atoll.  It promises to be at least as fantastic as one of Enid’s adventures for The Famous Five (yes, our large family is down to five!).  Epic.  It will be a new thing for the kids and a chance for me to share with them something of what it was like to grow up in Papua New Guinea, not that we’re going back there… but close enough!  My mouth is watering at the prospect of green coconuts, white fish and guava.  I can hear the island music playing…!

Also epic is all the preparation.  In this instance we will be very far from medical help, so I am taking everything that might be needed.  I’m anxious about it from a health perspective, but so very excited from a family perspective.  Bring it on.  We need a holiday.  Bet you do, too.

So anyway, I thought it might be useful if I share eight main things I consider when planning an overseas holiday.  There are so many things extra things to to consider when you are ill, accommodations of the disability sort in addition to accommodations of the bed variety. And all that planning and preparation are worth it.  Making memories is worth every effort.



Here are my tips: International Travel for the Chronically Ill.

Before you begin, give yourself a hefty amount of time to do all the planning.  Don’t book for next week!  It’s not worth the payback your body will put you through!  Plan it all way in advance, even if you don’t know how you’re going to be. It takes a long time to get it all together when you’re sick.

1Consider the destination carefully.  How will the climate and altitude work with your condition?  I’m not saying eliminate destinations based on climate; just choose with the knowledge of how these aspects could impact you.  For example, if you are taking heart medications, you need to know if altitude will compromise their effectiveness.  If you are travelling to extremely hot regions and have thermo-dysregulation, you’ll need some ways to counteract the heat and manage.

1(1)When booking your airline tickets, make sure you have flexible fares that can be changed if necessary.  It is impossible to know when you book whether you will be able to fly when the time comes.  So choose the fares carefully, checking the terms and conditions.  If you can stretch to better seats, do.  Look closely at the airline travel insurance exclusions for pre-existing conditions.  Choose a policy that will cover you for any medical assistance you might need while you are away from home.  If the generic airline insurance won’t cut it, shop around and find one that will.

1(2)While you are booking your flights, you’ll need to indicate if you need ‘meet and assist’.  This will usually prompt the airline to have you fill in a medical form.  Have your doctor fill this in and send it back to the airline.  I also get my doctor to write a generic letter explaining my in-flight liquid quantities (I have to carry extra fluids for long haul), medications and my need to mobilise and/or lie flat whenever possible.  I keep that tucked in with my passport in case it is needed on check in, during processing or inflight.  It’s also good to keep a copy of that approved airline medical form on you.  Remember that if you have mobility issues or implanted devices, you don’t need to queue for immigration.  Flag one of the officers and explain your situation.  They’re usually very happy to help.  The Meet-and-assist service is truly wonderful for ill passengers.  Someone will meet your flight, pop you into a wheelchair and whizz you through all the difficult bits.  If you struggle to stand for long or walk the distances of your average arrivals hall, it’s a godsend.  I don’t generally use a chair but on these occasions I never fail to feel grateful for their invention. It’s a wonderful, compassionate service.  It means you can keep the energy for something more memorable.  And that’s a win.

1(3)If you can, try to plan the flight aspects of your travel to suit your best times of day.  Incorporate rest days and nights between legs of the journey.  In my opinion it is a mistake to push through more than one long haul flight at a time. The benefits of getting some good sleep in between are immeasurable. For our big North American trip, we also mixed up the type of travel.  I find flying very difficult, so we incorporated a road trip as well, with lots of time to get from A to B.

1(4)Consider the types of attractions you’ll be going to.  Will there be standing required?  Walking?  If you are not using a chair, will you be able to manage?  Most attractions can provide you with really sound advice via email. I highly recommend contacting them ahead of time and booking mobility aides if necessary.  In particular, giant attractions like Disneyland need advance booking.  I was surprised to discover when we got there that my walking stick was not allowed to be used because it has a built in seat.  They let me have it when they saw my doctor’s explanation letter (see above) thank goodness I had it with me!  But if I had contacted them ahead of time that wouldn’t have been an issue.  Plan your itinerary to include a range of attractions, it is miserable if everything you are doing involves moving around when that is a challenge for you.  A mix of museums, tours, events, attractions and rest days is a really good idea.  I also planned time when my hubster could take the kids to do things so I could recover and rest.

1(5)Take all of your medications with you and every therapeutic aide that might possibly be needed.  More is more.  But don’t forget to take the original pharmacy label from the box or bottle to show customs.  They don’t like medications dispensed into pill boxes. If they can’t identify what drugs you are carrying you may have to dispose of them.  I do dispense and just cut the labels off the boxes and wrap them in a rubberband. They slide into my inflight toiletry bag.  Yes, I take all my medications on the plane.  All of them for the whole trip, because if bags are lost, my meds are not.

1(6)Documents: Along with your passports, itinerary, booking confirmations and the medical forms discussed above, you may need other information close to hand while you are away. A copy of your prescriptions might come in handy. Research where you are going and what medical services will be available. Record phone numbers and keep these with your travel documents.  It’s a good idea to record all the contact details for your doctors back home and write next to them the time differences from your destinations. You or your travelling companions may need to call them and it saves a lot of stress and expense trying to find their numbers from overseas. Keep these with your documents too.  I also google-translate into the language of my destination a brief description of my health problems and print that out.

1(7)Pack some easy to prepare food or snacks for your own needs.  This might not be important for all destinations. Many of us sickies have particular diet requirements.  For our big trip away, I packed some easy breakfast sachets that I knew I could tolerate and that were a cinch to prepare (add boiling water).  Your preference might be a nutrition shake or other standard item that you know works for you.  When you’re on the road, getting food in time for your medications can be a huge challenge.  Being prepared will ease the stress and make the day unfold in a much better way.

So, there are my tips. Writing them down makes me nostalgic for our last trip and really anxious about this one!  I feel so fortunate to be making this memory with my beautiful family. I promise to bring you back lots of photos and to get some writing done while I am there.   I wonder what writing will be prompted in that beautiful place?  Wish me luck. Wish you were coming along too!

Post Script:
Best laid plans and all… 
1(8)erm.   If you have a pacemaker, remember to take your pacemaker ID card with you.  I have never been asked for it before, but this time I was!  And it was at home in my bedside drawer!  Bahaha!  I had to show them my scar and let them feel the bump before they were satisfied that I wasn’t seeking a pat down just for the fun of it.  I can’t go through the metal detector gates with this little device on board.  I guess the ID card is true of all implants?  If you have one, take it with you!


Do you have any tips?  Suggestions?  I’d love to add to the list, add your ideas to the comments below…