That kaleidoscope...

After reading my last blog post, my mum said she thought my kaleidoscope of butterflies  description was a bit tame - did it really describe my pain?  The answer to that, which was her point, is a resounding NO.  And it wasn't what I meant - it's definitely not all unicorns and butterflies chucking up glitter and pooping rainbows while I lie (in between torture sessions.... and by that I mean physio and daily exercises.... and generally moving) and recuperate from surgery.  Nowhere close!  When she finds me lying on the floor (the sit before I crash logic), or doubled over in pain in some contortionist position, trying to put pressure on a painful area - "It feels like I need to hold my scapula in place" or "my rib has popped out, I'm just pressing against it"; it is easy for me to understand why any kind of symbolism conjuring up nice pretty happy butterflies does not seem adequate to her.  And it's not. It does not describe my pain at all.   In truth, I loved the words, the imagery it conjured up as I was trying to describe a fluttering sensation that occurs with the spasming I get frequently; but the colorful idea spoke to me regarding my pain - my pain is like a kaleidoscope.

The butterflies are a description I have used before to describe strange fasciculations I get - kind of like that weird twitchy feeling you occasionally get around your eye; - that's a fasciculation.   I get them in the muscles right up the side of my body, often immediately after severe pain, accompanying spasms; or sometimes as a sign it's about to begin.  It's as if there is a closed space and million butterflies, all fluttering their wings within my body. Sometimes you can actually see it (freaked my sister out once!) It's not exactly painful, it's a strange sensation, unpleasant mainly because it always accompanies severe pain.... Which - it goes without saying - is painful!

Thinking a bit more about it, the kaleidoscope is a perfect way to describe my pain.  I love kaleidoscopes.  I've always wanted one of those test-tube type ones with confetti stars suspended in some form of liquid, the ones you just tip up & down to watch the colours and shapes through the viewer. Like these:

http://www.moon-dog.com/oilwandscopes.htm

My pain is colourful and fluid - ever changing. It's proved impossible to understand and this has been one of the reasons it is so difficult to treat.  "It" - apparently it is quite common, after a certain point, to talk about the painful part of your body; or the pain itself in the third person.  I've read various forums, blogs and other stuff about it online, and also become aware of other patients I talk to at physio doing the same.  I've commented recently that 'chronic pain' - or even 'chronic injury', which feels more accurate for me; but medically it's 'chronic pain' - needs its own name.  It's not like breaking a bone and being back to normal in a few weeks; or like getting a migraine; ripping off a toenail; stubbing your big toe; falling out a tree; flying over the handlebars of a bike; tripping up a kerb... (yes, this is a list of personal experiences; enough to make my point I think) - some of those things hurt more than others, some do take longer to heal than others, but they all heal. Properly.  Afterwards - and during - they feel totally normal (just sore), still a part of your body, and you never suddenly realise you've started referring to your stubbed toe as Timothy*.  

*Not a personal experience

http://www.pinterest.com/gmun22

My physio in Scotland, before he retired last year, told me that I "felt different" every time he manually worked on me, and that didn't make sense to him.  In his wealth of experience in treating injuries, he didn't know what to do with that.  My scapular-expert physio (I'll start calling him 'M') here has said the same.  It's not logical - you get injured, you start to heal.  There may be hiccups along the way, little bumps or plateaus in the road, but ultimately there is a relatively steady upward slope of some sort.

'Normal representation of healing'

Mine looks more like this: 

Representation of my 'healing' journey

(Currently optimistic that my recent surgery has been highly beneficial; unfortunately I do
know I can plummet into the negative very quickly.... but I'm being an optimist right now...)

 At home, my physio treated me as I 'appeared' each week. He focused on doing what he could do to try to keep my pain levels as manageable ('bearable' is more accurate) as possible; to calm the 'angry nerves' and inflamed tissue  - because he had no guidance, no further diagnoses or investigations into what was happening; no feedback from any orthopaedic, nerve or musculo-skeletal specialists.  Although so much is still unknown, here I have a world-renowned physical therapist who specialises in chronic pain and crazy shoulder/ scapular issues; I have various specialist doctors, and a wonderful PCP who all know my case well, and my awesome physio who has been treating me, literally, from the day I fell.  And - amazingly! - they all talk to each other! Groundbreaking idea!  What a shame they don't do that at home.


When I was back in Scotland last year, I had virtually no other medical support and without my physio's treatment, I know I would have been in a far worse position than I was last July anyway.  To be honest I didn't actually realise how bad I was until I got here.  I knew I'd been struggling at home, but it wasn't until I saw my mum's face, and cried at the airport (not something I usually do); had those first few days of having food made for me; not having to do anything like get to a supermarket to get food; or drive myself to a doctor appointment that I realised exactly how bad things had become.  I was indeed, treading water.  When I went to see my physios here and both physical therapists' measurements and assessments of my shoulder were so awful, it really just fit with the rest of my life.  Except my shoulder was stuck together instead of falling apart, like the rest of me.

Treading Water

Back to the kaleidoscope.  I have previously described my pain as colours.  I am a visual thinker; I dream vividly in colour, and the different feelings and sensations I get do make me think of specific colours.  Thinking of a kaleidoscope turning, constantly changing into different shapes and patterns of different colours seems the perfect metaphor for my pain.  And just to be clear, I'm not thinking pretty flowers and butterflies - think more daggers and nails, live wires, meat cleavers and claw hammers all slipping and sliding unpredictably into different arrangements.  That probably gives a better illustration of my pain.

The kaleidoscope image also works when I think of my body being the slowly turning kaleidoscope, where my ribs, scapula, arm, hand, fingers, neck, vertebrae are constantly changing positions - contorting into interesting patterns with body parts all in the wrong place.  That is kind of the way it feels - ribs dislocating, scapula winging, head of humerus sticking out the front of my shoulder, superior angle of scapula looking like it could pierce my skin, twisted vertebrae, visible muscle spasms, fasciculations, shaking muscles….. new 'pain patterns' with each position.

http://www.pinterest.com/gmun22

So when I read kaleidoscope of butterflies and thought it was a beautiful expression; I also thought 'kaleidoscope of pain' - that's a good way to describe it! It came loaded with meaning for me.  Even more so, with a kaleidoscope, you have to constantly turn it, or move it in some way - the patterns are constantly changing. I think that is a good way to explain my pain; to attempt to visualise it - yet also the most difficult thing for someone to try to understand (including me).  It is forever shifting into different shapes and patterns without warning - I don't know what is coming next, but the patterns of pain are as bright and clear as the patterns created by a kaleidoscope.   Although they certainly don't feel as pretty.

http://www.pinterest.com/gmun22

“Words have no power to impress the mind without the exquisite horror of their reality.”

     ~ Edgar Allen Poe ~

The World's First Scapula Cake

 (in cyberspace anyway)

One year surgery anniversary!

The world's first scapula cake... according to Google & Pintrest searches

I am actually writing this from physio just now... where we have all enjoyed the scapula cake!

Later update:

One year ago today Dr Kibler reattached my lower trapezius and rhomboid muscles to my scapula.  It has been one rollercoaster of a year and I still have a lot of work to do before I can handstand again... But I have made progress; I am on the road to recovery (bumpy as it may be)... so what better way to celebrate than with cake?! 

 All the baking, mixing and icing made by my Mum (and as delicious as always!) and I managed to do the design myself - mostly left-handed (can I consider acquired ambidexterity to be a benefit of the surgery?!).  I did search online for some design inspiration... apparently nobody's ever made a scapula cake before... imagine that....!  Between appointments at my physio clinic and doctor's surgery today, the cake is now ALL gone!

I wish I could have shared the cake with everyone who has helped me this last year, I am especially thankful to Dr. Ben Kibler and Aaron Sciascia (as well as many additional staff members who dealt with me while I was under anaesthetic/ barely conscious and on follow-up visits) at the Lexington Clinic in Kentucky; Dr. Sami Khella and Marty Kelly, DPT at Penn Presbyterian Medical Center (University of Pennsylvania); Angelo Labrinakos, DPT (and all his wonderful staff) at Kinetic Physiotherapy in Downingtown, PA; Dr. Len Schuchman my American PCP ('GP'); and Dr. Gerry Williams at the Rothman Institute.  

I'm sorry I didn't get to share the cake with you all... I'm sharing the photos instead! I am sincerely thankful for all your ongoing help... and I will be even more thankful when I win my (proposed) cartwheel competition with Angelo one day!

"The greater danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it."

  ~ Michelangelo

Where trouble melts like lemon drops

Who wouldn't wish their troubles melted like lemon drops?!  And what a beautiful, magical and eloquent way of wishing for that.  Clearly, yesterday wasn't the best day but as I said, today was another day, and it was kind of interesting.  

I had a physio appointment, my physio was very careful not to push things very much today given the pain I have had since Thursday's appointment.  We talked about the pros and cons of getting the extra movement with the increased muscle relaxants - good to get the movement, but bad to have the lasting pain.  These conversations always just go round in circles - I need the movement to build the strength and stretch the muscles to ease the pain, but the movement causes so much pain and traps me in this pain cycle which is (obviously) not good; and I can't get the increased movement without the pain.... etc.

I had a doctor's appointment afterwards and he cast an entirely different perspective on it which has given me lots to think about, and still no definite answers, but was much more positive.  He said he thinks Thursday was not a disaster (my view at that moment in time) but it was actually a success!  I had managed to find a combination of drugs that made my therapy session feel a bit easier, get a better range of motion (and there are measurements to prove that) and these things are good - now we just have to figure out how to deal with the "cool down" from the exercise, as he called it - i.e. what crazy combination of drugs will I have to take so I don't get such harsh kickback pain-wise.

It makes sense.  It's not ideal, I certainly don't want to be taking lots of strong drugs indefinitely (when I started the strong painkillers a year ago I never thought I'd still need them now) BUT, if it means a short period of using the drugs to break the movement-pain cycle above and to 'reset' my body's response to it, then it might just be the thing that helps.

And given there aren't really any set protocols for this (yes that's just another way of saying I'm a freak... unique... a medical anomaly... I've been called many things this year!) I just have to try things out, find something that works and go with it.

So that's the plan.  I'm dreaming and wishing...

Somewhere Over The Rainbow - Israel Kamakawiwo'ole

(I LOVE this version.  It's awesome!)

Somewhere over the rainbow, way up high

And the dreams that you dreamed of once in a lullaby -ii -iii

Oh somewhere over the rainbow,

Bluebirds fly

And the dreams that you dreamed of

Dreams really do come true -oo- ooh

Someday I'll wish upon a star

Wake up where the clouds are far behind me -ee-ee

Where trouble melts like lemon drops,

High above the chimney tops,

That's where you'll find me

Oh somewhere over the rainbow, blue birds fly

And the dream that you dare to why, oh why, can't I? -ii-iii

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

Today's quote applies generally to the way I think.  It always makes me think of a conversation I had with my Dad about flying cars where he said it would never happen and I was being ridiculous but I had all the rules in my head - like the rules that apply on water when driving a boat, but in the sky; projected traffic lights; technology unimaginable right now; and Dad - still (many years later) maintains it's crazy.  Earlier this year - for some reason - I had a similar conversation with my physio, about flying cars.  He wondered what would happen with tunnels that go through mountains, there would have to be a rule for that.  Same wavelength... I guess it's why I don't really hate him for torturing me every week.... In all honesty, I think he's fantastic.

"You see things; you say, 'Why?' But I dream things that never were; and I say 'Why not?" 

— George Bernard Shaw 

My "Dream Team"

I'm running a bit behind on my updates, this one really should have been at the end of November.  This photo is of what my Mum called my "Dream Team" - taken when I saw Dr Kibler when he was at a conference in Philadelphia at the end of November.  I was very lucky to have my surgeon, physio (Angelo, on the left) and Marty Kelly (on the right), the specialist physio I have been seeing at Penn (and the conference organiser).  Two people missing from my photo are the shoulder therapist, Aaron from Kentucky, and our good friend Sami, the neurologist who really sent me in the right direction way back in January.

This is really likely to be the only time I ever have my "team" all in the same room, so I felt it was a necessary photo opportunity!  I really feel I cannot thank these people enough for the treatment, support, skill, expertise and compassion they have all offered me this year.

Onto the actual appointment.... Dr K felt that it was the most improvement he had seen between appointments, which is a sign I am finally heading in the right direction, although he did say he was not pleased with where I am right now, but pleased that I have finally got there; and that hopefully now I can move forward.

The valium-assisted physiotherapy sessions seem to be helping so I have to continue those just now - and have been - and I will see Marty again at the beginning of January to see what the next step will be.

There was a lot of talk about how, with this injury, and especially when things get to this stage and take this long; it becomes as much of a mental challenge as a physical challenge.  It comforts me to hear the health professionals say that, because it does make me feel better (kind of) about how I feel about it all.  

I recently went back over some of the blog posts I had written earlier this year and remembered how I felt at those times.  Looking at them now they seem so overly optimistic and naive, but no-one really knew how this was going to go.  One of the key things I have said, and thought, all year is that once I can start really working on my exercises I will feel as if I am really helping myself and I am sure after that I will start to feel much better mentally and physically.  I still feel that is true, but I am still waiting on it coming.  At the moment, my focus is still on trying to move my shoulder as much as I can but without aggravating the pain.  This is not easy, since any movement is painful, but I do now have some movement that is not such an angry pain, and that is the first step.

The real outcome of the appointment was that this is definitely a long, hard process and that there will still be many ups and downs and challenges, but that they are optimistic that I will get there.... one day...

I have always been delighted at the prospect of a new day, a fresh try, one more start, with perhaps a bit of magic waiting somewhere behind the morning. 

   ~    J. B. Priestly