The Fix Fixation

So once when I was teaching, a mother came to talk to me about her son. He was a plucky little kid with developmental delays.  He was popular in the playground and perplexed in the classroom. We’d been working hard on building his number knowledge, which was minimal when he first arrived in my class, aged 9.  He was just beginning to feel comfortable using numbers up to twenty; early stage numeracy.  Progress was steady, but laborious. When the mother arrived for our meeting, she looked through his maths work and launched:  “Where are the multiplication tables?”  she demanded,  “When I was his age, we were doing multiplications!   He needs to be doing multiplications!”.  It continued, in variations for the whole meeting. She was fixated on the idea that regardless of what he needed right now, what he was able to understand, what was appropriate for his stage of learning, multiplication was the fix because that is what she had done at his age.  I couldn’t get her to see the realities of her son’s situation. If we leapt into times tables before he understood his numbers he would never have a foundation to support later learning.  He’d have huge gaps in his number knowledge.  Gaps he would fall into, over and over as he progressed through school, risking falling further and further behind.  What she wanted for him was a solution. What he needed was her patience, and time.

fixating on the fix

We are a generation of solution-oriented people, aren’t we?  Got a problem?  Well, let’s solve it.  We’ll throw all our resources at it.  We’ll research.  We’ll leave no stone unturned. Surely there will be a way to fix it.  Because if it is broken, that’s very far from what it should be.  We’ll turn the problem over until we understand it from every angle.  Then we will stitch together some sort of plan. We’ll make it right.  Fix it. But what if you can’t? Is there room in our minds to accept a problem that has no solution?

Having a chronic illness that is poorly understood by most doctors has been a problem for me. I’ve been fighting now for a long time to find some answers, a treatment pathway. To find a way out of my difficulties.  I thought I was getting somewhere… and last week I discovered I am no further ahead than I was four years ago.  Is it okay now to give up trying to find a way?

Because that is what I am doing. I am so tired of scouring the horizon for information that might help. For the right solution. I have a diagnosis that I know a lot about, but I am no doctor. They don’t know a lot about it because they so rarely see people like me.  I am so tired of trying to strain to listen for the tempo playing in the minds of clever doctors. I am so tired of reading up and keeping abreast and willing a solution into being. I am so tired of carrying the responsibility of my own healthcare when I don’t have the qualifications or the brain power to do that. So I am putting it down.

Don’t be disappointed with me.  If you are one of those people who have messaged me and urged me on, thank you so much. If you are one of the people who hope that my progress will help your own, I apologise.  Right now I can’t refuel the engine.  I’m all out of determination.  I am going to use the little oomph I have left on smaller things. Hopefully, someone else somewhere will make some progress.  Here’s the baton, if you want it. Maybe some more research will provide the perfect conditions for action.  The sort of conditions that make doctors feel they can make decisions with confidence.  A double blind study somewhere that delivers the big a-ha. A mighty health crash that delivers data up the wazoo.

I never thought I would reach a point where passivity seems like the only choice left. It doesn’t mean I accept my illness. I never will.  But it does mean that I don’t believe there is a damn thing I can do that I haven’t already done. I think I finally accept that this system; all the difficult realities of medicine, do not work in my favour.  And I am going to stop trying to shift this immovable mountain.

If I had some objective data that made it all really clear, it would be easier. If I fell in a different percentage of Dysautonomia sufferers. If I lived in a different country, if I had a particular kind of insurance, if I could see a specific doctor in some other more populated country…. and on it goes.  I am just sick of it all.  Sick of being sick and yet having to fight for help. Why is it that in some cases, our medical systems require so much of the patient, so much more than they can realistically manage?

Also, looking at my current situation as objectively as I can, I do see the problem.  I’ve been fixating on IVIG (intravenous immunoglobulin) as the holy grail for some years now.  I thought, if my case was auto-immune and IVIG could address the rogue antibody action, I could get better. It seemed so logical.  It’s why responding so well to immune suppression filled me with so much hope! I wrongly thought it would help my case for immune modulation. IVIG itself; a blood product rather than a medication, a little bottle full of the antibodies of a thousand donors, seemed like it held the answers for me. Maybe it does. But I’m not likely to ever find out.

Because you cannot just ask for IVIG. It is in short supply worldwide. And it comes with associated risks which must be carefully weighed for each patient.   Here in New Zealand, the approval process is specific. My case would need to come before an approval board who want to see hard data that explains why I should have such an expensive and precious medical resource.  I am not eligible under their criteria. If any patient could have IVIG, just because they have a picture of systemic dysfunction, there would be a run on the blood bank.  No board could approve my case as it stands because of what that would mean for our supply. I get that. And I hate that.  What I would need is a strong letter of support from a neurologist who understands autonomic disorders.  I don’t have one of those.  And some blood screens to come up with a positive antibody titer. Mine is seronegative.  And a series of results from all the tests I have had over the last six months that give a compelling picture.  Mine do not.

So there really is no option for me. Giving up my fixation on IVIG as the potential treatment for fixing me is really all I can do for my own sanity.  I have to let go of it.  I have to pull myself back into this battered old snail shell and wait.  One day, something might happen out there that will help me. In the meantime, I will simply carry on. I’ll do what snails do during a drought.  Batten the hatches. Wait it out. I’ll take it as it comes, whatever that might be.  I will hope that my brief emergence into the sunlight during immuno-suppression might leave me with a soul tan. That my short time back in the race might leave me with some mental momentum.

So I’ll be in my shell for a bit. Don’t be mad with me.  Don’t feel bad for me.
And don’t be sad either, I’m doing enough of all that for all of us.  I’ll be trying to think of that Mum who so desperately wanted a fix for her boy.  There was one, it just took time, and it wasn’t the thing she imagined he needed most of all.

Just patience, and time.

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..?

Imagine

I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

Can you imagine what it might be like, to get a terrible flu?  And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin.  After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better.  You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.

Then imagine that being sick carried on for a whole year.

Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium.  You are bone weary. You adapt your usual tasks so you can do them.  Sometimes you crawl. You lean against any surface you can.  You avoid bending, or standing quickly, because that might make you faint.  It beggars belief how many household tasks require bending.

You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers.  Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up.  Surely if something was really wrong they’d know what was up with you?  Maybe you are not trying to get better?  Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job.  Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.

You’ve been in and out of hospital more times than you can count.  It is now clear you are not manufacturing the things that are going wrong with your body.  They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too.  You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag.  You know you will be admitted.  You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body.  Something keeps coming up on Google.  The Autonomic Nervous System.  You ask about it next time you are in.  Chins are scratched, thoughtful silences. Referrals.  Specialists.  A diagnosis.

You’ve been sick now for four years.  208 of those flu weeks, end on end.

Can you imagine what it might feel like to get a diagnosis?  You are relieved, so thankful to have a way to explain what is wrong with you.  Even to yourself.  There is a thing that you have!  Now that they know, they’ll be able to fix it, right?

And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning?  You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment.  You research more.  You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze.  You put forward medication suggestions, based on your research.  Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you.  It makes you feel vulnerable. What if you are missing something important?  You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.

Then you find a group, online.  They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!).  There is compassion and kindness and expertise.  Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before.  You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you were destined for. If you are honest, you fear you won’t.

You’ve been sick now for six years. 312 of those flu weeks, end on end.

There are worse things, it’s true.  Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful.  It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure.  But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on.  I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances.  Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap.  Maybe you miss the connection between wanting to do something and being able to, just because you can.

What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering.  What if all of those things were compromised, because you got something like the flu and it never, ever went away?

Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness.  It is a hard, hard road and we need your kindness.

Can you imagine?

 

She’ll Make Her Way

 

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

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

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

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

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

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

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

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

Doctors that come 
from
distant cities

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

They say I must be
one of the wonders

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

No explanation

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

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

She’ll make her way…”

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

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

one of the wonders
of god’s own creation!