Looking Back

http://www.pinterest.com/gmun22/

This time two years ago I met my surgeon, Dr Kibler, and shoulder therapist, Aaron Sciascia in Lexington, Kentucky for the first time.  At this appointment I was asked how many doctors I had seen, specifically about my shoulder, prior to seeing Dr K.  I counted 15 (not including multiple physiotherapists, nurses and other health professionals).  Apparently the average was 4.  My high number was partly explained by some duplication because I had initially fallen in the US and then travelled home to Scotland a few weeks later;  but mostly it was because the 13th doctor had been the one to diagnose me and refer me to Dr K.  The few before him (all in the US - on an intended 6 week visit which turned into a 21 month stay) had set me on the right path, narrowing down specifics with each specialist, and therefore pointing me towards a diagnosis; the few before those had just been downright dismissive (and since the saying goes "if you can't say anything nice, don't say anything at all", I'll try really really hard to stop with "dismissive".  There are many other words that come to mind.... They all apply to Dr number 14 as well - he was an, ummmm..... 'blip'.... which is really a nicer way of saying I wish my Dad had punched him. That was me trying to be nice.)

Anyway.... Dr K was the first person who TOLD me where my pain was instead of asking me; who TOLD me what made it worse; what made it better.  He knew WHERE the pain was and EXACTLY what movements increased my pain; what movements were impossible; and what (slightly) relieved it. He also conducted his entire examination far more thoroughly than any other doctor I had seen, yet with the least torture! He was the first doctor who was not completely puzzled, perplexed, or looked at me as if I were crazy, or perhaps had two heads, or even worse, that I thought I had an invisible second head nobody else could see.

After seven months of sheer FRUSTRATION, the relief was overwhelming.  I have been in touch with a few other patients too (the wonders of the internet) and each of them describes similar feelings.  I have not come across a single person, or page on the internet, saying anything negative about Dr K.  I think these are all a true credit to Dr K and his team, and the level of compassion, professionalism and respect they show each and every patient.  I think the very fact we drove 650 miles to see - literally - the only doctor in the world who could give me the use of my right arm back, and he firstly thanked us for coming to see him, sums him up perfectly.  A true Southern gentleman.

Reflecting on all of that makes looking back on that day such a positive memory.  It was filled with hope, understanding and promise.  It was the most positive thing to have happened since I had fallen, 8 months earlier.  

Of course, many things have happened since; other issues have come to light and other problems have had to be addressed.  It is difficult for me to truly separate these because they are inextricably linked when it comes to my overall health, pain, and physical function.  But when I can think about that one day in isolation it was such a positive day: it really was.  And even knowing everything I know now - every single piece of information that has challenged me (and my physios and doctors) since the surgery; every single thing that has made me cry with pain, with frustration; everything that has culminated in this big giant  "I DON'T KNOW", regarding my life, still doesn't take away ANYTHING from that day.   Ultimately without Dr K, without his surgery, and without that day - that week really - I would have no potential for getting my right arm back; I would still be in massive amounts of pain - maybe even worse than I have now (although see the picture below for my true feelings on that one).  

That appointment DID give me hope; something that was beginning to elude me.  

In that initial appointment, Dr K asked me to rate me pain on a scale of 1-10.  Most people with 'chronic' (technically anything lasting 3 months or longer) HATE this question.  

http://www.pinterest.com/gmun22/pain/

For me, it's always been difficult to understand the question should be subjective - as people keep explaining to me.  It isn't necessarily the worst pain in the world, it is how you feel ON THAT DAY, or sometimes more generally with THAT injury.  It always feels like an exaggeration to say anything above an 8, but it genuinely impacts my ability to function - in every way; it makes me cry - for no other reason than it hurts.  Sometimes, when I have severe pain and find myself on my knees, clutching at my arm and realise my cheeks are burning and wet with tears, I ask myself if I am crying because I am frustrated, or even having a bad day and feeling a bit sorry for myself (which, yes, happens sometimes); but when I am attacked with the overwhelming, bring-me-to-my-knees type of pain, the only thought in my head is OUCH.  I am not thinking of anything else (it must be the only time that ever happens) but how painful it is.  I am still quite sure there are other pains in the world that are worse than mine; but having 'learned' how pain is supposed to be assessed, those 'attacks' make my pain - in that moment, at its worst - a 10.

I have found this to be the most useful pain assessment chart (I think clicking should make it larger, otherwise the original image can be found at the link on the caption):

from: http://www.ebnurse.org/index.php?id=78

I was always inclined to imagine the worst pain I possibly could (as per previous blogs) and then try to fit my pain in there somewhere.  This chart's descriptions - for example 'bedrest required' helped me to fit it into a more subjective context.

So when Dr K asked me how I would rate my pain, my exact words were:

"I don't want to sound like a drama queen, but sometimes it really is a 10"

He understood.  And he said the best thing I could possibly have heard, and never expected.  He told me I was "tough".  I told him (crying - really tough!) that I used to think I was tough before this happened. 

Looking back, that changed view of myself was down to damaging appointments with other medical professionals.  Ones who told me I wasn't trying; I was too focused on my pain (gee, please let me rip your muscles off your scapula and see how easy it is to think about anything else.  Seriously, please.); my questions were scorned, ridiculed, cut off; I was told so many things I knew to be untrue but felt I was not allowed to question them - and on the odd occasion I managed to summon up the courage to ask the question bouncing around my head, I was yet again dismissed; spoken to like an idiot - one medical professional even visibly rolled her eyes while answering one of my questions. (I would add, there were times my mum - herself a medical professional - and/ or my sister were in appointments with me; this made NO difference; they were treated exactly as I was.)

Looking back on that always makes me think of this quote from Matilda - a terrible concept to associate with any kind of 'care', but nonetheless, exactly how I felt:

http://www.pinterest.com/gmun22/books-words-reading/

I am delighted to say there was not a single moment I spent in Kentucky, or Pennsylvania, receiving treatment for my shoulder that brought any of these feelings to mind.  And I am currently very optimistic that I have left them entirely in the past.

Without revealing any of that, although clearly exhibiting my emotions, Dr K told me it didn't matter what anyone else had told me, I was TOUGH. (Apparently it's not an unusual concept among some doctors to think 'I don't know what this is; therefore my patient is crazy/ a hypochondriac/ attention seeking/ weak female who has no idea what pain is.' Apparently this was not the first time they had encountered this; nor did it surprise them.) 

Dr K told me that they didn't know why yet (I was only surgery number ~170), but that this was the worst injury he encountered in his orthopaedic clinic - in terms of severe pain, severe disability and lack of function.  It was a complete validation of everything for me.   A reassurance that I was not going crazy - and I don't even think I realised how much I needed that until I got it.

And then he said this whole process was going to be tough, and I would need to continue to be tough. That didn't seem like a particularly difficult instruction....

http://www.pinterest.com/gmun22/inspiration-for-recovery/

... I quite honestly couldn't imagine it being any worse than it was at that point in time.  Bring it on, I thought. I can do this. Just fix me.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

Sometimes we are SO very lucky that we cannot see what lies ahead.  As the days, weeks and months followed on from there, "tough" became something else entirely.

http://www.pinterest.com/gmun22/pain/

And now, looking back over two years, I still remember ever single detail of that day; of that appointment; of how I felt. I remember the relief - the expectation that I would be 'fixed'; that I had my answer.

Of course, life is never really that simple (especially not mine, it seems) and this picture seems to say it better than I ever could:

http://www.pinterest.com/gmun22/pain/

And so the mystery solving continued, as my blog has detailed over the past two years.  But looking back on February 27th 2012 and my first meeting with Dr Kibler and with Aaron - despite EVERYTHING that has happened since then - I am still very grateful for that day; for the wonderful people they are and for the major part they played - and continue to play -  in my (ongoing) journey.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

As I write this two years later, I wonder how I would have coped if I had known the long and winding path my recovery would take.  I cannot lie and say it has been easy - there is no part of it that has been easy: physically, emotionally, or psychologically.  Every single part of it has been a challenge, but I am still here, battling on, and determined to improve as much as I possibly can.  Right now, I don't know how much that is - nobody knows what to expect.  Perhaps that is the most difficult: the inability to make plans, to imagine what lies ahead because I genuinely don't know.  If nothing else, this experience has taught me to have patience (I'm not saying I've been good at it....); it has made me realise many people rush from one thing to the next that they must miss so many things in between.  Out of everything, I hope these are things that will stay with me.  I hope I will remember there is much more to life than rushing from one place to another - there is always something to appreciate; and there is always time to appreciate it.

http://www.pinterest.com/gmun22/scapular-muscle-reattachment-surgery/

Adopt the pace of nature: her secret is patience.

     ~ Ralph Waldo Emerson

Voice Within

Intuition.  It's really something we don't know very much about.  We talk about a 'gut feeling' or 'going with your instinct' but - scientifically - we don't really know what it means.  There are some interesting cases and psychology research experiments that show that there really is some sort of intuition (or whatever certain psychologists, neurologists or cognitive scientists want to call it) and that in certain circumstances we unconsciously know something before we consciously know it. (Malcolm Gladwell's book Blink is a pretty good pop-sci overview.)

I've learned that when it comes to my health, going with my intuition really has been the right thing to do - and it's really been a battle... For example, the other day I counted that I saw seven doctors, one nurse, and five physiotherapists when I was in Scotland last year.  Thirteen medical professionals, all relating to my shoulder.  Some only saw me once, some multiple times.  None of them had ever seen my injury before (it's well established now that this is unusual so that is not surprising) so no-one diagnosed it; but the treatment I got from each medical professional was completely different.  Some were kind, caring, as you would expect from a medical professional, and some were not.  These are, of course, the ones that really make me think about this whole 'intuition' thing - the ones that were not caring, or compassionate - or even pretending to be -  but generally dismissive and condescending.  The ones who sit peering superciliously over the top of their glasses, legs stretched out in front of them, crossed at the ankles, and their hands clasped tightly behind their head, elbows sticking out - the very embodiment of professional arrogance.  

Here are a few chosen quotes from various appointments that best illustrate my point:

You're young. You'll heal. 
(After yanking my arm in the air - a motion I was completely unable to do myself, given the muscles required to do so were detached - and not even looking at my scapula... which was unable to move, so a physical examination to confirm that comment might have been useful.)

You seem overly focused on pain. 
(Funny that, when actually two major muscles were detached from my shoulder and I couldn't use my right arm.)

You need to deal with the emotional aspect of pain.  
(Detached muscles? Sure, refer me to a psychiatrist... that's the solution.)

Nerves don't do that. They either work or they don't. 
(Seriously? After explaining two doctors and two physios thought I was having some hypersensitive pain issues.  And now, I have RSD-type symptoms... what's that? A syndrome where the nerves are hypersensitive to pain.... possibly caused by not treating the pain in the first place.)

EMGs are just tests used by private healthcare to make a lot of money
(After me saying the doctor in the US recommended I had more nerve testing done in September 2011 if I was not making progress.  Eventually, in January 2012, further EMGs played a major part in setting me on the path to my correct diagnosis.)

She'll just get over the shock of not needing surgery 
(Overheard in the corridor by my Dad while my Mum was trying to help me get dressed but actually I was curled up on the bed crying because of the scapular movement the doctor had forced during the examination... that was his comment to the nurse when my Mum stuck her head out the room and asked for some water for me.)

And perhaps the best:

You might just need to learn to live with it 
(This was after asking about extremely painful pinging sensations I was having sporadically... the pain they were causing was so horrendous it literally rendered me speechless (amazing, right?) and resulted in the one A&E visit I made in Scotland.   Each time it 'pinged' I lost more movement in my arm.  Eventually, after visualising my injury, and the state of the muscles and scar tissue during my surgery, my surgeon believes the 'pinging' events were actually more muscle fibres detaching from my scapula as the tension increased and the muscles weakened.)

Actually, on second thought, maybe this was the best... tough call:

This is not like being told you have chronic fatigue syndrome when you actually have Lyme disease.  Nobody's missed anything here. 
(Apart from wishing I'd not given my entire medical history to be judged so blatantly, this doesn't really need any further comment...)


I could really write a lot more but I think these little gems make my point perfectly.


After one particularly bad appointment, when I was in Scotland, I was on skype with my parents to tell them about it.  This basically involved incomprehensible explanations among the sobbing and blubbering.  At that point, my Mum asked me, Do you think there's something wrong? And I said yes and that was enough for my parents.  I really think that was such an important conversation, as short as it was, because it was basically me trusting my gut and my parents supporting me in that.  Had that gone a different way, everything would have been different and when I think about that I really do realise how lucky I am to have had the unyielding support of my parents throughout this - and really, all through the years of Lyme issues too.

And I have had much support along the way from various friends, doctors and therapists but ultimately it was my gut instinct that I trusted that set me on that direction.

I could have chosen to believe I was going crazy, because it certainly felt like it at times.  I could have decided there were so many medical people telling me there was nothing wrong that they all had to be right; but I could feel it.  Like everything else in life, we have to choose our path, be responsible for our own decisions and I chose to trust in my body and what it was telling me.

When I had my first appointment with Dr K in Kentucky and he asked me to rate my pain, I told him that I really didn't want to be dramatic, but sometimes it was a 10; sometimes I would be curled up on my knees, crying and moaning in pain, with several pillows supporting my upper body, in attempt to take all pressure and weight off my shoulder blade because I couldn't get any relief.  

He told me the best thing I had heard since I hurt my shoulder.  He said: 

"you are tough"

I told him I used to think I was tough until I had this injury but I didn't feel tough now.  He told me that this injury, for reasons still unknown, causes the most pain and disability in patients that he sees (as an orthopaedic surgeon). He said that I was tough, because I had made it this far.

He also told me I was not crazy.  He said it did not matter what any other doctor or medical professional had said, or implied: my pain was real; it was severe; and it was extremely disabling.

Then he told me the recovery would be tough too, and at that point all I could think about was that this kind, caring, compassionate, gentleman of a surgeon was going to fix my shoulder. I just couldn't imagine it could get any worse than it felt at that point.... oh how naive I was!!  How blissfully ignorant.  I suppose we are lucky we cannot see what is in front of us...  However, even knowing what I know now, I would have made the same decisions - ultimately, it needed fixed.

And now, as I continue to struggle my way through my recovery, facing a new challenge with every attempted 'new' movement or exercise (or generally each new day), the best advice I have been given is to trust my instinct. When my body is ready to increase the reps, or push the stretch a little further, or hold it a little longer, I will know.  Yes, it means testing it every now and then and trying to push the boundaries, but I have to truly listen to my gut telling me whether it is the right or wrong thing to do... because my head always tells me to push it a little bit higher... faster... stronger.  And as much as I hate to disagree with that, going with my gut is what's been giving me results, slow as they may seem.

I chose this song today because I love the words and they really resonate with me (as I guess might be obvious from the rather long blog post I've just written!).  For me, it conjures up all sorts of images, particularly of an inner conscious (instinct?!) giving guidance; reminding us that we are strong.  We all have it within us to be strong; we have to trust ourselves; to go with our gut; and to never ever let anyone take that inner self-confidence away from us.

"The Voice Within"

Christina Aguilera

Young girl, don't cry

I'll be right here when your world starts to fall

Young girl, it's all right

Your tears will dry, you'll soon be free to fly 

When you're safe inside your room you tend to dream 

Of a place where nothing's harder than it seems

No one ever wants or bothers to explain

Of the heartache life can bring and what it means

When there's no one else

Look inside yourself

Like your oldest friend

Just trust the voice within

Then you'll find the strength

That will guide your way

If you will learn to begin 

To trust the voice within

Young girl, don't hide

You'll never change if you just run away

Young girl, just hold tight

And soon you're gonna see your brighter day

*     *     *     *     *

  

Yeah...

Life is a journey 

It can take you anywhere you choose to go

As long as you're learning

You'll find all you'll ever need to know

 *     *     *     *     *

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

I also love the line about life being a journey.  I have many quotes about this and I truly believe this now.  I have learned so much and been so many places (physically, mentally, emotionally, psychologically) in the last eight years that I never anticipated, so I have completely accepted that is life.  It's all about the journey.

Life is a journey, not a destination

~ Ralph Waldo Emerson