It's October!

Really, October! I guess most people are well aware of that fact, since it's a very common and normal thing to know...plus shops are full of Halloween 'decor' and pumpkins, for those of us who do need a reminder since I seem to have 3 day weeks (physical therapy) & 4 days sleeping... or close enough! Time seems to just fly past, in one way. Some days do seem reeeeallly long. So it's probably not necessary to remind anyone else, but... my blog, my title, my reminder.... my exclamation mark! My:  'I can't believe I last posted in AUGUST!'

I really thought I would at least manage a blog post a week... then a month.... then, well I guess I slept a lot! (It's healing!)  I have had various ideas - mainly: I should blog with photos, it's easier. So I do have collections of photos from various things we've tried, along with a few stories and I'm aiming to 'catch up' to the end of October... by the end of October 😀.... mainly by organising and posting the assortment of photographs I've been planning to use.   Hopefully afterwards, I will actually manage to take advantage of my good days and engage a bit more !(Although good days are somewhat fewer right now, but I'm hopeful that means we are getting to the deepest parts of spirochaetal infection and pulverising the little Lyme-hell inducing buggers!). 

So, an overview of the past 3 months...

When I arrived here in May, we began 'deconstructing' my body and its somewhat obstinate, definitely obscure, health issues again. We made a plan (by that I mean I had about a dozen medical appointments) and we moved forward ... then we adapted, made a new plan and pushed on with that.... I blogged a few times about what we were doing and... now it's October!!

We kept going... made a plan, pushed on....then we stepped back, puzzled over some stuff, made a new plan and pushed on with that... then.... we remembered why the word plan has never really been the best word dealing with my body and its rollercoaster recovery. We 'decided' (like it was a choice) to go with my gut - which has been pretty damn good in this whole saga; it's so important to remember to listen to your body and trust your instincts when it's your body that you can feel.... screaming at you!

So right now, and for the past several weeks, physical therapy has been purely working with 'how I feel today'. There is no doubt that the ongoing IV Lyme treatment has systemic effects - it's going directly into my blood to target infection at the deepest possible level, and spirochetes can affect the entire body, especially when left to run (spiral/ drill) riot, unchecked throughout the entire body AGAIN - of course it's affecting everything!  


But my PT can "feel a difference" in all my muscles  (good side included) on weeks that the Lyme treatment affects me more (it goes in cycles). That wasn't really something I had thought about, but it's a HUGE validation of something usually only I can feel - most importantly,  it means it's working (torturously!).

So, I have continued to infuse Lyme medication every day, as part of my protocol (I have oral meds and some herbs & supplements too); I have continued to go to PT three times a week - sometimes I make it into the gym-area, mainly for some lower body strength training; other times I hardly move from the treatment bed while knots and spasms are worked out of my muscles; and dislocated ribs and twisted bones are eased back into place. (Yeah, that's fun.)

And so I continue on this path for now - things are so much better than at the beginning of the year - unbelievably so! - but they still have a long way to go. We have positive and encouraging signs that things are working. And I have complete trust in my 'team' of medical professionals here,  who offer such fantastic support - even after all this time.

The photos are more interesting, I promise. And coming soon....!

t minus 13: Inspiration Required

Looking ahead towards my physio session tomorrow, all I can think about is how hard this is.  Not the exercises, the passive movements, the assisted movements; not the pain, the frustration that I can't make my body do more; not even suppressing the constant urge I have to throw things at any other patient (especially new ones!) doing 'advanced' shoulder exercises that I have been working towards for 3 bloody years! 

The hard bit is trying so f*****g hard and not making any significant progress; of feeling like things had been going "relatively ok" - as in during week one the room did not spin or go black; nobody had to come running towards me with a chair, a cup of water, or to catch me before I fell; and importantly, my physio did not make his 'what the hell is going on with your body?' face - that is definitely what would be termed 'relative progress'.  With those baselines, it really shouldn't be that difficult to make some 'relative improvements'.  So, I guess for a whole week, I did. 

I think it's fair to say this philosophy seemed to be working last week

Until Monday.  When I found my knees curling themselves into my chest and my left hand trying to 'soothe' my right shoulder by just touching it, unable to leave it alone; when I tried to 'hold up' my arm and it just flopped, as if lifeless, back into my physio's hand; when I had to give up on a couple of exercises for that reason; when I could trace the exact location of the long thoracic nerve the entire way down my physio's back to show him exactly where my pain was; when doing one exercise made it feel like that nerve was filling with icy cold water; when I had to keep checking the walls to make sure the sparkling wasn't turning into big black dots (only a couple); when I told the new intern that if I looked like I was just staring into space and not doing anything, it would probably be necessary to get a chair close to me asap, "Why?" he asked. "So I don't hit the floor." and explained my weird 'syncope without loss of consciousness' ('fainting without fainting'); when I realised mascara had been a ridiculously optimistic idea - sleepy half-shut eyes would have been better.  Oh, and when the 'what the hell is going on with your body?' face appeared far too often.

I guess 'relative improvement' is that I didn't need that chair, and the black dots didn't last long.  However, 'significant improvement' it is most definitely not. 

Because, like it or not body, brain says you are going back!

As I think about my next physio session - honestly wondering what surprises my body is going to throw at me next, I also wonder sometimes: how long can I do this for? 

But I remind myself of this quote, because it is the truest one I know:

Nobody can argue with that

At different times, my physios and doctors have acknowledged this difficulty - which quite honestly I think stops me from totally losing it, or feeling crazy.  When someone you are trusting with your health, and therefore your life, acknowledges how you feel - even shares in those feelings with you, it is one of the greatest comforts I think any health care professional can offer.

SURGEON

"Once something goes on this long, it becomes a mental challenge as much as a physical one.... for all of us." 

Said my surgeon, to both my physios, my mum and me - 8 months after my first surgery.  So that would be just over 26 months ago now.

Reckon the words "indomitable will" might sound good on a CV.  Proof? I have this blog...

PHYSIO

"Why have you not gone crazy yet?"

My specialist physio asked....... or rather half asked, I just filled in "crazy" as he struggled to search for a more appropriate word - around 18 months ago.

I sent him this.  He liked it.

DOCTOR

After another attempt to 'push through' failed and various discussions followed, I grumbled to my Doctor, 

"If I wasn't going to try hard, I think I would have thrown myself off a roof a long time ago."

"Probably something much higher."

He replied, as if we were having a perfectly normal conversation - sometimes it feels like his sense of humour keeps me sane. That would be about 20 months ago.

Because my awesome doctor is as crazy as I am, apparently

I think back over everything I've tried - I've had some little successes, like the incredibly significant shoulder shrug that held so much optimism and brought so much excitement to everyone - myself included, but that was 26 months ago too.   I really feel like I'm still waiting on the next 'shoulder shrug' - the next significant thing that lights the way with optimism again; that whispers quietly to me, "this is working".  And even more importantly, I believe it.

Inspiration is always good; actually sometimes, it's essential:

Not planning on it.......

"Success  and  failure.  We  think  of them  as  opposites,  but  they're  really not.  They're  companions - the  hero and  the  sidekick."

~ Laurence  Shames  ~

t minus 14 days

Monday:

Monday Me: "If I had working arms I would punch you."

My physio: "I would be delighted if you could punch me."

So.... it's not just me getting impatient and feeling frustrated!

Today my arm started to shake uncontrollably.  In an incredibly strange way - even held still, it was visibly shaking and felt not exactly sore (well it wasn't making my pain worse), but horribly unpleasant not to have any control over my own arm.  My fingers were numb with pins and needles ind it felt like I'd been whacked in the funny bone with a mallet - right at the beginning of the session.  "Make it stop! Make it stop! I can't control my arm!" (Drama queen?  Me? Never.  This was weird though.) 

 My physio started working up my arm - very calmly, massaging and trying to 'release' different nerves in my lower arm, elbow - nope, it just kept shaking uncontrollably.  I felt a surge of empathy for those with neurological disorders who deal with this frequently - I often feel like I can't 'control' a body part just now: hand, arm, shoulder - I can't make it lift something, or I try and involuntarily throw it instead (usually breakable things when that happens) and that's a strange feeling; also a feeling of no control over my muscles.  This was entirely different - I had absolutely no control and it was moving all on its own.  I was also feeling shaky and nauseated and using all my willpower not to hit the panic button in my head!

Finally, he reached my neck, started to twist my head and it slowed - eventually, with my head in what had to have been a contortionist position, it stopped.  He was trying to massage out any tightness in my neck - I was touching it, trying to pinpoint the spot - "here, feel it here - my vein seems to really be sticking out." (You know if you have really hot hands sometimes your veins stick up and you can feel them?  It was like that - a big vein right down my neck........ or so I thought.) "That's your vagus nerve." my physio told me - from what I've found so far on Google, it's not supposed to do that...

It actually calmed down and I very carefully went through movements and exercises gently today - no fight from me there, I have learned angry nerves are best left alone.  It does however offer a possible link for some of my weirder symptoms - but I'll leave that for another day, and some more research.

It remains to be seen whether this is a cumulative effect of trying to raise my arm - impinging on the thoracic outlet (just about the collar bone where nerves split to innervate the arm); aggravating my thoracic outlet syndrome, and the nerves I have that are wrapped in scar tissue; or whether there was an odd movement, something just slightly 'off' with either a way I moved, or one of the first couple of movements we did before it went crazy.

For now, (with hope) we chalked today up to a bad nerve pain day - and I'm really hoping it was -  just one bad day to leave behind me and move on from here.

"Never look back unless you are planning to go that way."

~ Henry David Thoreau ~

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 ~

My Soulmate

An entirely accidentally appropriate topic for today....

I think the person who created this is possibly my soulmate.  I am not alone.  I am not the only one who overthinks simple things!

http://www.pinterest.com/gmun22/just-me-my-thoughts/

However, I think I can win.  Paper is a metaphor. It represents the written (and spoken) word, which has resulted in old sayings such as "the pen is mightier than the sword" (scissors or rocks, if we're talking about violence) and "sticks and stones may break my bones, but words will never harm me" - not something we hold to be true anymore, but I'm pretty sure it also works with the metaphor.  'Paper' is words, writings, ideas - everything; it can even be used to represent diplomacy versus a violent war.


 So Mr Anti-paper, as much as I love your thought process, I think you didn't quite finish it, perhaps we are not soulmates after all! Paper all the way! 

Just to weigh in, you can't beat some genius thinking from Sheldon........:

Rock, paper, scissors, lizard, Spock

From The Big Bang Theory

Sheldon even uses 'paper' in a broader academic sense! 

And since it's after 6am..... I think this might be my favourite thing I've found on Pinterest EVER (so far.... so much more to discover....):

http://www.pinterest.com/gmun22/just-me-my-thoughts/

"There  is  a  drowsy  state,  between  sleeping  and  waking;  where  you  dream  more  in  five  minutes  with  your  eyes  half  open,  and  yourself  half  conscious  of  everything  that  is  passing  around  you,  than  you would  in  five  nights  with  your  eyes  fast  closed  and  your  senses  wrapt  in  perfect  unconsciousness."

    ~ Charles Dickens

Pain, Health and Existentialism

I am being referred to our local pain clinic.  I'm not exactly sure what it will entail, or what outcome I should expect, but one thing has been made clear.... I will NOT get an appointment without filling out their forms.... (Referral to a chronic pain clinic; question on form: do you have pain? Well, at least that one was easy to answer.)

However the question that has caused all kinds of strife inside my head tonight was this:

It seems simple enough, but really............ it is not.  Is is just not.

First, my brain screams - define health? Do they mean pain, my life, my quality of life, my health in what context... actually, HEALTH in what context?

I think the problem is perhaps the word 'imagine'. It kind of works in my brain the way saying 'don't think of an elephant' does for everyone - it's impossible not to.  So when someone says 'imagine' my brain is very very good at just taking that instruction literally.  And of course, imagination knows no bounds....

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

Then.......... Answer everything about TODAY

What if I feel worse tomorrow; next week? By the time the appointment comes? Surely THAT would be a better time to answer. That's usually when they give you these forms.  Then at least you know you have put your 'right' answer on that day, and can explain it when asked.

My brain goes into overdrive...... all by itself.  I am really trying hard to think 'first number that pops into my head; first number that pops into my head'.......... but there is no number. 

Instead there is................................. Phenomenology; existentialism: is our only reality the moment in which we currently exist? (I curse my undergrad dissertation.)  If that is the case, then do the future and the past truly exist?  What about living in the moment? Zen? Pain being subjective?  How can I compare something subjective to the "worst I can imagine" or "the best I can imagine"

OK, reel it in....  So what is the worst imaginable state of health I think of?

• Locked In Syndrome, I definitely think that could be the worst. Ignore the could.  Just start here...no need for a whole list of alternatives.... So, that's at zero.

• A coma with no awareness would technically be a worse state of health (I think - considering HEALTH, not LIFE), but there would be no awareness about what was happening, therefore where would that actually stand on this scale?  How many times have I said I wish someone could just put me in a coma, let me heal, let the pain go away, and I could wake up when it was all over. A lot.  I even dreamed this. It was a very disappointing dream to wake from.

• Does that make my current state of health worse than being in a coma?  Is a coma preferable? (Yes, right now it holds some appeal.  For me - purely because I wouldn't be aware of my pain.) Does that mean if I would prefer to be in a coma, then I should consider my health to be almost as bad as I can imagine?

• Except I can imagine much worse - terrible things happen all the time.  I'm not facing a terminal illness; I still have the ability to think and use my brain (not scoring high on the positive scale at this exact point in time).  The possibility of intractable pain for the rest of my life is still a horrifying possibility - a lifelong disability.... does that count as just thinking TODAY?  Or is that imagining the worst I can imagine.  I think the instructions are somewhat contradictory.

• Reel it in again....nobody knows where the pain path is winding; I prefer to just maintain a positive outlook on that one (My nerves will heal; my nerves will heal.... they are not damaged beyond repair). I would just quite like to be in a coma until my nerves do heal; or they figure out a way to take my pain away (that doesn't involve suggestions of experimental treatment with bio-terrorism agents)…….. circle back to this idea.... not really making progress....

Again, I wonder out loud  (yes, I am talking to myself) how HEALTH is defined…. Is it simply the ability to live a 'normal' life? (Does anyone do that?)  Should I be thinking about the best life possible versus the worst possible - in that case, I consider myself very lucky; there are people all around the world dealing with unimaginable challenges simply to survive every day.  I have a sore shoulder and very limited use of my right arm.  It's not good, it hurts like hell; but it's not like I suffer life-threatening discrimination for my beliefs, or the fact I'm female; or am a refugee fleeing war in my country - does that count as quality of health?  I suppose that would more be LIFE, not HEALTH.  So where does HEALTH lie between LIFE and PAIN?

….. But, if I'm supposed to imagine MY best health possible compared with MY worst health possible - subjectively - and mark that on the chart, then I'm not very happy with my health just now - not at all happy, so should I put a really low number?

What do the numbers mean?  Using the word PAIN would have made this a bit easier...

I wonder if everyone finds these things this difficult……? (I doubt it.) I try so very hard to do the 'gut instinct' thing here - it's always what the questionnaires tell you to do.  But my 'gut instinct' is all these thoughts.  Really.  They just jump in my head all at once and the only reason it takes so much time is because I have to try to sort through them.

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

I wonder if I should just write an explanation instead of picking a number.  Picking a number is too hard.  I really do not believe humans should be broken down into numbers to be entered into a binary computing system.  We are too complex. (SEE!!?)

I want to pick a low number; I am NOT satisfied with my health right now at all…. It prevents any kind of normality… the surprise of 'waking up' and not knowing if today I will be attacked by the firey raging pain monster; exhausted because pain has prevented any kind of beneficial sleep; or feel (apprehensively) that maybe today I can finally at least LOOK at my to-do list without collapsing onto an ice pack.  But I hate seeming negative; I have coped with this entire thing (actually, that 'entire thing' would be my life....) by trying to focus on the positive. It goes against my attitude to pick a low number…. but I don't think that has done me any favours in the past -  unfortunately I think I am too good at slapping on some make-up, a cool hat (to hide the unwashed hair) and faking it.

Plus the girl on the phone laughed at me. (Yes, she actually did. It was a definite chuckle, to be specific.  It is impossible to give me an appointment without this terribly important form, apparently.)  If she needs this in front of her before she can assign me an appointment, then they must give it some degree of importance (hence my deliberating!).  Therefore I should probably pick a low number - be realistic instead of....... i don't know, what do I usually do?  I don't really lie........ my Mum once said she didn't think I was entirely honest about the severity of my pain.  I just assumed the various shoulder/ physio therapists knew, at that point - but here they don't.  I know they don't, so I really DO need to remove this innate desire to appear strong, and be honest about all this (possibly the best advice I've been given this week).  I DO need to be seen by someone at the pain clinic as soon as possible…. I DO have severe pain.  But I don't want them to think I'm a drama queen and a weak female, as seems to have been the general (clearly unjustified, as physical evidence later showed) opinion of other medical professionals.  Crap.  I have been emotionally scarred by too many judgmental medical professionals and it has rendered me incapable of actually picking a number on what is possibly an entirely arbitrary chart.  There's a cheery thought.

I wonder if I just declare I'm a phenomenologist and I can't answer this question on grounds of my philosophical beliefs, I could skip this one (hey, it works for religions).  I really don't see how rating ONE day on a scale, when realistically my appointment is going to be weeks (hopefully not more than weeks, but that possibility does exist) from now, is so important…. I could just write: I believe we live in the moment and exist purely in that reality and therefore cannot imagine anything other than what I feel now, making it impossible to compare this moment to anything else.

It's kind of my 'medically enforced zen' (i.e. don’t think about the future or you WILL begin to freak out and question the meaning of everything).

It's kind of true…. I've spent two years being told NOT to compare my pain today to, for example, how my pain was immediately after my surgery (which is definitely the WORST I can imagine, based on my own experiences).  Pain is subjective (so I am repeatedly told).  And right now, tonight, as I was filling in that form, I felt like someone had embedded a giant axe deep into my scapula that was cutting right through my shoulder blade area, all the muscles around it, and into the back of my ribs…. And somehow it was sending out little electric shocks from the axe-head in all directions.  Should I put something REALLY low?

That's not exactly what the instructions say…. I have experienced worse than this - should it go on my experience, rather than an imaginary best and worst?  I struggle to think where that would put me either.

I think back to the existentialist/ phenomenologist get-out clause……. I then consider just writing the link to the blog I wrote when I tried to meditate…. That seemed easy compared to this….

I look at the clock and realise it is nearly 2am; I am quite sure I have been having this conversation with myself for well over half an hour, longer maybe.  Perhaps I am crazy….

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

I decide my life is not 50% of what I would like it to be, nor is it closer to Locked In Syndrome than to 50%, and choose the number 40.

I imagine being asked why I chose to write 40.  I wonder if explaining it was 2am, I had been having existential arguments with myself for too long and I had to get to bed because I had physio the next day would be an acceptable answer for arbitrarily picking an arbitrary number on an arbitrary scale that someone I don't know, and who doesn't know me, will use to judge me. Or more likely, enter into a computer programme designed for that purpose.

I wonder if that is better than writing 'I'm an existential thinker.'  I really don't know.

And now, after I have written this all out, completed the formS (yes, that was just one) and sealed the envelope, I realise I should have written 42.  If asked to explain, that would have been simple.

"There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. 

There is another theory which states that this has already happened." 

     ~ Douglas Adams

"Changed in a positive way"

Yesterday I saw my physio at UPenn, Marty, who has been overseeing my 'progress' and treatment because he is considered the best and most experienced physio in this area, specialising in scapular issues.  I was referred to him by my surgeon, Dr Kibler, 17 months ago now.  For the first visit, my regular physio (in PA), Angelo, came to my appointment with me (a real illustration of how wonderful he is) and I was evaluated by Marty.  I was in a very bad way at that initial consultation.  I saw Marty and Dr Kibler together at a conference in Philadelphia in November 2012, and Angelo (and my Mum) were also there - I felt very lucky to have had the opportunity to have them all in the same room, sharing opinions and discussing the way forward at that time - especially as they all work hundreds of miles away from each other.


Seeing Marty has been incredibly helpful.  In all honesty, the appointments are good, the information is top class, but the general opinions on my progress and the state of my shoulder are not fantastic (possible understatement.... dire would probably be more realistic).  One of the main benefits of seeing him every 4-6 months is that he can offer some real perspective which is difficult to get when I am dealing with my shoulder every day, or other therapists are seeing it weekly, or even multiple times a week.  


My physio in Scotland (I'll call him R), felt it would be helpful for him to have a scapular-issues-expert give some feedback to help guide him with his treatment.  He is also a fantastic physio, and has the advantage of knowing my body well, as he has treated me throughout my life for the many injuries I sustained as a gymnast.  He also has strapped my injured ankle for competitions, and watched me fight through injuries to return to training and competing as quickly as I could - basically, he knows me; he knows I am not someone who is beaten by my injuries; that I have the ability to battle them; that I know I have to work to recover; and he has watched me go through that process multiple times before.  So on a personal level, he knows my capabilities and determination, therefore he really does know that I am not the type of person who will not bother with exercises, or fail to adhere to my rehab programme - he will never accuse me of being weak, or neurotic, or not able to deal with pain because he knows that is not me.

Generally I am described as a 'compliant patient'! Although the 'resting to heal' bit seems to require more mental effort than the 'pushing through' bit - I have learned that the physical response really should dictate this... I'm just working on applying it a bit more effectively.


Despite his expertise, and experience in dealing with unusual sports injuries, R hasn't encountered my injury before (I really don't think anyone has - not all of it in combination) and he said it would be helpful for him to have some feedback - and some perspective, which is exactly what Marty can offer, having evaluated me from August 2012.  So I am sure he will feel both delighted and relieved that Marty said I should keep doing what I'm doing just now - it is the greatest improvement he has seen (have to qualify, that IS relative).  He felt that my scapula is moving better than he had seen it move before.  That's the good news.  And it IS really good news  -  it's been a long time coming; it still does not move anywhere close to 'normal' (and nobody knows if it ever will); it does not move in the same way as my left (good) side and (in my opinion) it really can look quite deformed in some positions (I don't think anyone would disagree, they just steer away from words like that!) -  BUT I have many hurdles to overcome and still a long, probably bumpy, road ahead of me filled with unknown challenges, heading towards an unknown outcome.


One step at a time - still the necessary advice.

I did take a copy of my dynamic neuromusculoskeletal (NMS) ultrasound reports to my latest appointment (I only got the reports in November; scans last August) and the specificity of the reports is something very new in dealing with nerve injuries.  The scans, and the fact it is possible via these ultrasounds to view the soft tissue - muscles, tendons, ligaments, nerves - as my arm was moved, confirm what was really just a suspected issue beforehand.  It seemed to be clear to the physios that I had nerve issues, but the standard nerve testing at the moment is an EMG (electromylograph) where hollow needles, filled with electrodes are inserted into the muscles and the electrical conductivity is measured.


This involves sticking the needles into different muscles (one at a time), testing at different depths of the muscle, testing with passive movement (the doctor moving the arm/hand/thumb etc.) and active movement (me moving, or attempting to move).  I'm sure I've said it before, but just to really reiterate - these HURT.  These hurt like hell.  As in crying out and whimpering and squealing throughout the entire process. Imagine having a needle pushed into the muscle between your thumb and first finger and contracting the muscle so it actually feels like you are squeezing a mini metal rod inside the muscle (feel sick yet??) - that's about the best way to describe how that feels; then imagine having an injection, but instead of a 'slight pinch' and 'over in a second', imagine the needle is inserted and then wiggled about at different depths - pushed deeper, wiggled, pulled out a bit, wiggled.... get the idea?  I have to stop.... the memory is actually making me feel sick!! -  I had four EMGs.  The first one took about 45 minutes and I think I had 14 needles sticks.  There are also nerve conduction studies which send little electric shocks from one point to another via electrodes stuck on the skin.  I have read people say these are sore, but compared to EMGs, they are nothing - a little electric shock, and over very quickly.


What these tests can show is whether or not a nerve is conducting electricity - i.e. sending messages to the muscles and telling them what to do.  All of my EMGs were negative, meaning I didn't have any severed nerves - a really good thing.  BUT.... that's pretty much their limit.  My later EMGs (6 months post-injury) showed "slow firing" which was attributed to pain and hesitation - I don't know enough about the actual numbers and measurement, I'd guess that was probably a factor, but what is impossible to tell (as far as I'm aware) is what other damage that might suggest.


With the dynamic NMS ultrasound, it is possible to see the damage in much more detail - on video; and to see what happens with movement - which I feel must be incredibly helpful, because most injuries DO feel better at rest. The dynamic testing has to be an enormously beneficial step forward.  With my NMS ultrasound, when someone lifted my arm, my 'thoracic outlet' (where the nerves split into the various nerves that transmit messages to the arm/ shoulder) was completely crushed to the extent that it disappeared on the video screen.


This video from Dr Fried's article (linked below) shows a normal scan, and a positive scan and is almost exactly what my scan looked like when comparing the left (good) side with the right (injured) side (it is short and features a simple, explanatory commentary):

• 
  

HAND

September 2013, Volume 8, Issue 3, pp358-365

Dynamic neuromusculoskeletal ultrasound documentation of brachial plexus/ thoracic outlet compression during elevated arm stress testing

Scott M. Fried, Levon N. Nazarian

(Click for the journal article - if the video doesn't load, it is available on the webpage under "supplementary material")

The reports from the scans (I had three areas scanned) are very specific - showing scar tissue within the body of the muscle, scar tissue/ adhesions wrapped around the nerve(s), inflammation of various muscles, nerves and tendons, and also changes/ abnormalities in the tissues, indicating evidence of injury.  And possibly most importantly, they show how movement affects these structures - by compression, or other abnormal effects of movement.


That's all a bit medically complex, compared to my usual blogs, but it's necessary to explain because ultimately it reassures my physios that they were right - they can see nerve injuries from movement patterns, pain descriptions etc., but there isn't any 'scientific evidence' in many cases, which Western medicine has placed on a pedestal and considers necessary for confirmation of any diagnosis.  Unfortunately, it makes confirming nerve injuries and verifying the extent of a patient's pain very difficult for doctors.


I do understand that - pain is subjective and what might rate as a 4/10 for some people may be described as an 8/10 for others - how do doctors differentiate between this?  And perhaps more pertinently, is it necessary to differentiate?  If someone considers their pain unbearable, does it matter how someone else would describe it?  I don't know.

My scans, and reports do show that I have thoracic outlet syndrome (the crushed nerves in the video), brachial plexopathy and associated nerve damage; that I have scar tissue 'squeezing' my nerves, scarring in the muscles the nerves travel through; inflammation of the nerves at specific points, causing the burning and numbness, especially in my hand - and more.  In a way, it describes my pain; and, more importantly, it validates it.


None of this is especially good news from a physical point of view when everyone considers what this means for me right now - it means that my pain IS very similar to RSD/CRPS-type pain, except I have a cause that has been viewed - it still means my pain rates the same as the most painful chronic pain condition that exists (42/50 on the McGill pain scale - childbirth is rated at ~30-36/50); and I have that pain constantly - it never goes away.  The intensity fluctuates: sometimes is calms down and sometimes it roars, BUT knowing there is a reason for it does offer a little comfort - people with genuine RSD/CRPS do not (yet) have a medically understood cause for their pain, and it always comes with the possibility the pain can spread to other limbs, or in the worst case scenarios, throughout the entire body.

McGill Pain Index, showing RSD/CRPS (causalgia) pain ~42/50
(click to enlarge)

It does mean that my doctor can give me an estimated time on nerve healing (around 2-3 years from these scans) - again, this is not great, but it is better than being told "you could have this pain when you are 80" - which really might rank close to the top in terrible things doctors have said to me (it's a tough contest though!).  It means a lot of things are unknown; but it does mean my exercises and rehab programme can be tailored more specifically - so right now gentle nerve stretches (to attempt to stretch out the 'bad' scar tissue), massage to break up scar tissue within muscles, and maintaining a range of motion are the important things.  NOT attempting any kind of strength training, or resistance training, and resting when necessary, are all very important too -  because irritating the nerves in any way will only cause these problems to increase, and will prevent healing.


The outcome of my appointment yesterday was that Marty said, all things considered:
-  fracturing my scapula was nothing, 
-  the dislocated shoulder was not a big deal
-  the detached muscles were not even the biggest problem 
-  the torn muscles (all of them!) were not the issue
       (and those are some major things!!)

- all along, the brachial plexopathy is the WORST thing


I wasn't very happy that I scored 18% on the shoulder function questionnaire compared to 20% last August, although for 2 percentage points, that can fluctuate even within a day - it depends on exactly how my pain is when I answer the questions. I have been told NOT to focus on this!  I did think I'd have gained a few more points, but I still have very little 'normal' function in my arm - my passive movement has improved, but my active movement really hasn't - this all fits with the nerves not functioning so at least we all understand why things are the way they are (finally.... hopefully finally!).


For me there is some relief in that - having answers, hoping that this really IS the final answer; but it doesn't take away the severe pain, or the frustration of not being able to live any kind of normal life, and not knowing when that is likely to change.  It is also scary trying to look too far ahead - I do know (having been told by a couple of doctors, and also having read it in Dr Fried's book) that in some cases conservative treatment is not effective, and removing scar tissue surgically becomes necessary.  However, the fact I am seeing little (teeny tiny little) improvements now is a positive, and I am hopeful that it is an indication that we have finally found the right information and the right rehab programme, and that these will combine and give me the best chance at avoiding any kind of nerve surgery - inherently risky, for obvious reasons, and always a last resort.  But I just have to keep doing what I am doing; hope that I am creating an 'environment' that is conducive to healing, and that I will continue to see these small positive steps - and most importantly, will lead to a reduction in my pain level....... soon, please.


Marty's overall conclusion was that I am a little better - but "better is a relative term" and therefore I think the most positive thing he could think of to say was: "you've changed...in a positive way" - which is better than before!