Margot le Page -What If?

watercolour splodge with the words 'What if this is as good as it gets?" in white text

This Meet My Peeps guest post is written by a friend I met in my patient group. Margot Le Page is a wonderful writer and a gutsy person.  She asks a question each of us comes to at some point in our chronic illness journey.  And answers it in a powerful way.  I think you’ll agree that Margot’s perspective is worth sharing. Thanks Margot for sharing your story here.   -Rach

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I don’t remember when I first heard this question. It’s not original.  However, I do remember asking myself.

The first time was a couple of months after a 9 hour massive back surgery to correct and stabilise my spine which was basically collapsing. I had scoliosis and ‘rotting ‘discs. I was 47.

I had led an exciting and complicated life to this point. From Oxide Street, Broken Hill to Rodeo Drive Beverly Hills, 2 marriages, 2 beautiful children. I was confident, extrovert and capable.

But, I had always been a bit sick. Nothing too major. Adenoids, allergies, appendix, basal cell carcinoma, pretty much the full a-z, all the way to ’zoans (ie protozoans my gut!) But seriously, nothing really hit me hard and I always recovered, following my Mother’s belief that we were a family of self-healers.  She should know after all, surviving an aerial gliding accident, 36 and pregnant, resulting in massively traumatic injuries including a leg amputation and the awful loss of the little girl, Helene Julia, she was carrying.

I had been given the ‘bad news about my back when I was 17. I was training to be a paediatric nurse with access to great doctors and highly respected specialists who told me it (my spinal curvature) was going to get worse and I would eventually end up in a wheelchair. I heard them but certainly did not actually believe them.  Well, not on the surface anyway. Denial can be a nice safe place sometimes.

Maybe, just maybe somewhere deep inside my head I knew those boffins were right and I proceeded to live my life in a hurry, keen to get away from that place. I sought care and treatment away from conventional medicine and explored a myriad of alternative treatments. You name it, I’ve tried it. Acupuncture, absent healing, aromatherapy, cranio-sacral therapy, osteopathy, a Russian Mystic, numerology, past-life, sacred oils, Indian Brahma Kumari meditation. (I’m sure there’s another a-z here too!)  I studied Reiki and nutrition, Pilates and yoga.  And spent a lot, I mean a lot, of money along the way.
Needless to say, those know-it-all doctors I had seen many years before were sadly, pretty right.  I came back to Australia from the US to seek conventional medical wisdom in a country where I trusted the system and had family and friends to support me.

So, there I was. Single, adult kids doing their thing, a long way from Los Angeles and my ‘other’ life, in a reconstructed body I couldn’t yet drive, barely surviving on social security, fighting a bitter divorce, needing opioids, wearing an awful shoulder to hip brace, using a walking stick…… pretty bloody depressing actually.  I cried and cried for lots of things.

And then somehow, with no tears left and a couple of truly wonderful friends helping me, my head not really together, I asked myself the Big Question. “What if this is as good as it’s going to get? Can I actually, really live like this? Maybe forever?”  The answer came… not immediately. But then I surprised myself with a resounding. “Of course I can!”. My thinking changed. I recalibrated. I thought of all the things I could do, not what I couldn’t. I didn’t feel so bad after all. I could get on a tram 600m from my front door when my drugs kicked in, and with one stop would get me to a bank, post office and supermarket. It might take all day, but, I could manage. I began to notice little things again. Cracks in the footpath where tiny daisies pushed their way through, sunlight playing through my blinds, sounds of birds and crickets….. I was all right.

11 years later I’m asking myself that question again.
5 further back surgeries, broken rods, pulmonary embolisms, dural tears, spinal fluid leaks, a craniotomy, I even had my gall bladder out in there somewhere too and my finger stitched!
I now have 13 vertebrae fused (great posture), increasing numbness and weakness in my right leg and a new diagnosis, Dysautonomia. Great?  Not.  Terrible? No.

My dear Mother, now aged 85, only 27 years older than me, currently not in great shape, has taught me so much. So, if, if, I live to her age, can I go for another 27 years like this, like I am now?
Of course I can.  Not ideal, but….. (big breath)

There will be more challenges ahead, I know that. I will no doubt ask myself the question again, probably more than once.
With less I have become more.
I am a good mother, a good partner a good friend.
I don’t mind me.
I am fortunate.

Speed Dating Doctors

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First up, I am NOT suggesting, like the cartoon, that you take your top off!  😉

Over the years that I have been sick, I have been to hundreds of medical consultations. I have spent thousands of days thinking about the way to approach my illness and the doctors who are there to help me with it. In its own way, an initial consult is not that different to a speed date. You sit across from someone you have never met before.  You want them to ‘know’ you as quickly as you can, without frightening them off with your enthusiasm or putting them off with the lipstick on your teeth.  You are conscious of the way you are dressed, the words you use, whether the package of ‘you’ is providing them with enough motivation to want to see you again.  Or in this case, to want to help you.  It feels like desperation.

I’ve had months at a time of simmering anger about the nature of medical consultations. The complicated social and human dimensions of these interactions. The unfair onus, placed on the already sick patient, to make the relationship work. The challenging time frames, the workloads and stress the doctors are under. The nature of the beast.  It feels hopeless.

And I’ve had happier times, reflecting on meetings that have gone well, optimistic conversations, good patient-doctor dynamics.  Feeling cared about, knowing they are using those good brains of theirs on my behalf.  Knowing that I matter to them. That in spite of the symptoms that are dogging me, they have seen who I actually am underneath it all, and spoken directly to the ‘inside Rach’. The real me.  Not to my illness, nor to my husband, but to me.

It has emerged over the last six years of my illness, that there is a way to behave when you go to see a specialist.  You should be able to just rock up, in whatever state you are in that day, and be helped.  But that is a pollyanna wish for a pollyanna world. So given that we don’t live in Utopia and the challenges facing doctors and patients are not about to go away, I have compiled eight points for approaching doctor visits.  I’d love to know if you agree or disagree and especially, if you have something to add!  You can use the comments function below to add your two cents worth.

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If you can afford it, or have insurance, always seek private help when you can.  Private specialists have more time to spend with you and access to an even wider range of services through their networks, often for more timely and responsive testing and further investigations.
Public hospital clinics are time-poor, the specialist doctors have huge workloads.  That being said, if you don’t have private health insurance (like me), it is possible to find great doctors (sometimes even the same doctors you would find in the private health sector) and wonderful assistance through the public system.  You just have to be prepared to be a patient, patient.  Things don’t happen in a hurry.

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Carve out a week before your consultation for rest.  Sleep as much as you can, eat as well as you can.  Resting gives you the best possible chance for mental clarity at your appointment. I think this is one of the most crucial aspects of your visit.  Gather together your papers, or anything new that might be of interest. If you are taking along some research journal articles you have recently found, make sure it is a copy you can leave with the doctor if they want to look at it later.  If you have to travel some distance to get there and you can stay overnight near to your appointment the night before, organise that.  Allow lots of time to rest between travel and appointment.  Unless you are going for tests.  If you are going for tests, just carry on as normal in your daily life so the tests reflect your ‘normal’.  Your doctor might want to know what you goal is for the consultation.  Make sure you have thought about that.  What are you hoping to achieve? Make a note, on your phone or somewhere you can access it easily.  Forgetting might be part of the way you roll, it is for me.  Write out any questions you have and make sure you ask them.
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When I go into a specialist or doctor consultation room, I always say hello and ask them how they are. I tend to slide over their initial ‘How are you?’ with ‘I’m happy to be here -or- pleased to see you -or- getting through, thanks’.  I think it is appropriate to give them the lead for the conversation and listen quietly while they explain their intention for the meeting and what they are going to do next. They will usually ask questions.  I try to answer them all but sometimes I get a bit foggy. I think it is okay to apologise for that and explain that sometimes I find it hard to find the words I need.  Do Use your P’s and Q’s.

Politeness also extends to the way you object, if you need to. There are times when you need to make a point.  You never need to raise your voice, in fact, making your voice slightly quieter and taking it slower can have just as much impact.  Don’t settle on a misunderstanding, make yourself clear and  repeat their response back to them if you need to. i.e. “So you are saying that I need to have x, y or z done?  Should I organise that? How does it work?”

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There are two aspects to this one. The first is that I like to form a partnership with my specialist ‘What would you like me to do -or- how can I help achieve this outcome -or- can you recommend any further course of action?’ is a great way to open a partnership if they seem amenable.  It’s not worth trying if they are not engaged with your situation.

The second is, that hands down, when my own partner is with me in consultations, the appointments always go better.  He helps me with the words I can’t find, he knows my medical history and he can offer the specialist another opinion on how things are going.  I also have found that when I have attended appointments on my own, I have been more likely to feel bullied, passed over, misunderstood and as though I am simply, a nuisance. Somehow, having my partner there lends credibility to all the things I say myself.  And I can clarify things with him afterwards “…what did they say about that, again?”  If you don’t have a family member who can go with you, seek out the patient advocacy service at your local hospital or clinic, or ask a trusted friend.

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Maybe it is a throw back from my childhood, but I am a big believer in the importance of presenting well. I think it shows doctors that I value myself. And if I do, they will. I don’t bother with makeup, but I make sure my clothes are fresh, neat and presentable. If I am likely to have electrodes stuck to my ankles, I try to shave my legs before hand.  I make sure I smell nice.  If I can, try to have washed hair, or run a brush through it before the appointment.  If I am going to have a neuro exam, I suck on a mint beforehand.  The close personal space is stressful for me if I am thinking about my breath. If only the courtesy was mutual.  😉   A word of caution about cheeriness though.  If you are smiley and chipper, they may find it more difficult to look beyond the cover to what the book within contains.  Let’s not confuse them with social cues that would be more appropriate at an actual ‘date’!

The other meaning of the word present is in the context of being ‘present’. Really notice your specialist.  Consider their body language, give them eye contact.  Use your voice and don’t waste their time on issues that aren’t part of their specialty.  For instance, if I am seeing a cardiologist, he is unlikely to be able to help me directly with my urinary retention.  So rather than “I’m having trouble with my bladder” I might say “Can you suggest someone who might be able to help me with the troubles I am having with my bladder?”.  This acknowledges that you are heading off their brief but asks them to help in a reasonable manner.

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You might not be bothered about keeping your medical records, but I am. I like to ask my specialists if I could please have a copy of any correspondence forwarded to me for my file. In New Zealand this is not frowned upon and is easy for them to organise.  It is worth asking for, as some won’t do it automatically.  It also means I have copies of letters to show other specialists, right in my file.  Hospital computer systems are notoriously maze-like and having an organised file of your own can save your doctor lots of time.

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Not all doctors need you to play the game.  The good ones don’t, they are not swayed by matters of ego or intellectual superiority.  But some are. Make an assessment based on their responses.  If they don’t like it when you use medical jargon, don’t. Use non medical words (even if they are clumsier and take longer).  Recently a doctor asked me about my gastrointestinal symptoms.  I said that I suffer from post-prandial distention and dysmotility.  He asked me to tell him what happens, not the diagnosis.  I guess he wanted to establish that I was in fact correct in my terminology. Instead of getting shitty about that, I just slowed down and explained that after I eat my tummy ‘blows up big and then there are no digesting noises, it’s painful and huge until it all gets moving again’.  Some doctors have reasons for the things they say that seem arrogant. That’s okay.  Play the game, when they know you better you won’t have to.

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When you have a bad doctor visit. Followed by another bad doctor visit, by another, it can seem like there is no point in carrying on with it.  It’s tempting to walk away altogether, to not seek help when you are suffering or when symptoms worsen or something changes. Please persevere. Every appointment adds data to your medical file and at some point, a picture may begin to emerge. Don’t give up.

Oops!  …and there goes the speed-dating buzzer.  Will you and your doc give each other a tick?
I wonder if they think about these things as much as we do..?