Two Years Later...

February 28th 2012 - a date which will be forever etched on my body in the form of a 6 inch scar, and forever etched on my mind as The Day I Had My Surgery.

Scar Progress

Scar detail

To be honest, I'm very proud of my scar.  Initially, with my 18 staples (my first ever view of it - taken by my Mum just before the staples were removed so I could see it!) I felt it was a real battle wound - I felt like I had been cut up, drilled, and sewn, glued and stapled back together, so it seemed perfectly fitting.  However, very quickly (as the photos show), the wound healed very neatly.  Students at my physio's clinic declared it "looked like a plastic surgeon had done it".  I will admit that while I am absolutely delighted it looks as neat and almost invisible as it does now, I do wish the inside felt like it matched....!


But back to 2012...

Sometimes looking back, it seems a bit surreal.  I had multiple consultations with a couple of top specialists in Philadelphia, one of whom diagnosed me - a little tentatively, saying he had never seen this before, but he had heard of it - with detached rhomboids.  Actually, what he asked me in the appointment was "I assume you were born with rhomboid muscles?" 

Ummm, yes.

I didn't ever write about the process of my diagnosis.  Looking back now seems the right time to do so.  January 2012 was like a blurry trip through hell - an unknown, crazy month dominated by doctor appointments, diagnostic testing and excruciating pain.  It seems totally surreal when I think back.  Everything that happened in Kentucky, and after my surgery is incredibly vivid; but that January was dreadful.  

I think it was my pain really - it was so horrendous that when I first saw my Lyme Dr/ GP back in PA he took one look at me - he didn't even have to ASK -  and said "we have to get this pain dealt with".  That was the first time since the acute stage of my injury (in July 2011) I'd had any kind of pain relief. Yes, I'd been given various meds while in Edinburgh, but nothing was touching the pain - and nobody wanted to give me anything stronger. Later he told me that technically in medicine emergency surgery was 'life saving' but I was really just one step behind that.  I needed something done ASAP.  He was absolutely right.  Luckily I was finally on the right path.

Since August, I had been back in Edinburgh  at university working on my PhD (in Psycholinguistics), which honestly meant struggling into university for meetings and talks (on occasion being sent back home by my supervisor), and reading in bed - usually packed with ice packs and frozen vegetables, or hot water bottles and heat pads; struggling through an indescribable pain for which I had no relief.  I attended multiple medical appointments, both on the NHS (National Health Service) and private appointments and got nowhere.  Ultimately I ended up being told I would have to "learn to live with [my pain]", that I was "overly focused on pain" and "any damage will have healed by now".  Among other things. (More details in this post: Voice Within.)

This is what my right scapula looked like at that point in time:

Winging scapula (R)

As you can see, the right one is sticking out quite a bit more than the left one while both arms are in the same position against the wall in front of me.  What I know now is that where you can see the entire outline as it curves around and under is actually visible because there should be a muscle there.  Dr Kibler calls it a 'divot' - where the muscle has atrophied, and the 'hole' is visible.  You can also see it is in an entirely different position from the left one - with nothing to 'pull' it into place and hold it in the correct position in relation to my spine (which is also not in a good position here).  The scapula is a 'floating bone' held in place by 18 different muscles - when it is not in the right position, it really really hurts!!

Regardless of the unusual injury and diagnosis, even looking at this now (right now, for the first time in a long time), I can't BELIEVE that I saw so many doctors who told me there was nothing wrong with me! I simply do not understand why further investigation was not deemed necessary. 


I remember a Skype chat with my parents after an appointment with one specialist. It was a terrible appointment.  I was absolutely distraught - upset at being dismissed again, and at being badly treated.

On this particular Skype conversation, as we chatted through my sobbing, my Mum asked me: "Do you think there is something wrong?" 

I replied without hesitation, "Yes." I knew something was seriously wrong - I hadn't been able to use my right arm for nearly 5 months.  Even when I attempted small movements, I did not know if my shoulder was moving unless I was looking in a mirror.  It wasn't.

 "We'll get to the bottom of it somehow." she said.

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

I think I should send this, with my surgical report
 (and now my detailed nerve scans) to several doctors.

The other thing I remember from that chat is a ridiculous conversation with my Dad - probably trying to make me laugh (I think), and - one of those rare occasions - succeeding.

Dad: "It's a shame you don't smoke or we could send you some marijuana"

"Ummmmmmmmmmmmmmmmmmmmmmmm...................................???"
(Marijuana isn't legal in Pennsylvania, although I think perhaps it had just been legalised in New Jersey - with very strict medical restrictions - I have no idea what he was thinking... never mind international posting, customs etc.  And I'm guessing that's the only time in his life he has ever used the phrase "it's a shame you don't smoke". Ever.)

Despite the utter nonsensical comment in its entirety, my Mum and I both replied instantly with: "You don't have to smoke to use marijuana." 
(I'm really not sure why THAT was the part we BOTH saw necessary to point out first; there were many flaws in his 'plan'.... least of all being that I am very sure he has NO idea how he would get any!)

However, it was his next comment that has stayed with me and made me laugh...

Dad: "Oh yeah, you can bake it into brownies.  I saw that on Two and a Half Men."

My Dad's knowledge of soft drugs - brought to him entirely by Chuck Lore and Charlie Sheen.  

Oh well, he really did make us laugh.

Journey to Kentucky

Anyway.......... I was heading back across the Atlantic a few weeks later to spend Christmas and New Year with my parents.  I had work to do and permission from university to be away for 6 weeks.  When I got there, we decided I should go back and see the orthopaedist who had initially examined me when I fell, and followed up with me several times that past summer.  He is a really wonderful doctor, and a lovely person - he remembered me instantly, and was also instantly concerned about the way I moved my arm to shake his hand (I still hold my lower right arm with my left hand when shaking anyone's hand.  Some people really 'shake'; others kind of 'yank' your arm up and down - these actions HURT.  Absorbing any vibrations was a necessity!).  It took him about 5 minutes to point out multiple issues to my mum (who could see my back) about my scapula - its position and the fact it was not moving - 'scapular dyskinesia' (news to me - from an orthopaedic perspective).  

He recommended I saw their shoulder specialist; he told me he was very concerned at the level of pain I had (nobody accusing me of being "overly focused" on it there!) and recommended I had further nerve testing done, but by a neurologist (my  EMG in the summer was done by a physiatrist).

We have a family friend, another Dr K, - I will forever view him as 'saving' me - who is a top neurologist at a University of Pennsylvania hospital, specialising in neuromuscular issues. He saw me several times.  I may forever hold a grudge about the three EMGs he subjected me to (that's the torturous nerve test with the electrode-filled needles that are wiggled about in your muscles), although I do not think he could have been a better cheerleader throughout the tests!  At that point in time, I think it was suspected I had nerve damage and my muscle was paralysed because of that.  He later said to me (months after my surgery) he had "never seen a scapula not move like that".

He confirmed it did not seem to be neurological - very good news - but he didn't know what it was and wanted me to see another specialist, Dr W. I was told he was the 'top shoulder guy in Philly' by several people.  My own research showed that was supported by his research and publications in academic journals.  I was delighted - someone everyone thought would have the answers and could 'fix' me.  I saw him the following week - mid January.  At this point, I was still expecting to fly home to Edinburgh a couple of weeks later.

Dr W was the one who diagnosed the detached rhomboid muscles. Nobody had even mentioned rhomboids to me before then. Then he really dropped the bombshell: "There's pretty much one guy in the world who can fix that for you and he's in Lexington, Kentucky.  If I were you, I'd go see him in Lexington."  Mum and I were both in the appointment.  If our chins could have hit the floor cartoon-style, I think they would have.  He registered the shock;  answered our questions, recorded his notes while we were still in the room to give us time to think and ask any further questions; and he gave us the name of the surgeon in Kentucky.

I went to my physio in PA, Angelo, that week.  He had only good things to say about Dr W and he had been so sure he would have the answers and be able to fix me.  When we walked in, he asked how it went - was he going to fix me? "No. He says I should see someone in Kentucky."   He was about as stunned as we had been. "Kentucky? Who's in Kentucky?" he asked - apparently it is NOT normal, despite the size of the US, to be told to drive over 600 miles to get surgery.  To be honest, we were a little bit unclear on this at that point in time!

I pulled out a piece of paper. "A surgeon called Dr Kibler...?"

There was a 'knowing' look.  Clearly Angelo was familiar with the name Kibler (turns out anyone who knows anything about shoulders is - I did not know this at that time).  His response:  "If I want my shoulder fixed, I'm going to see Dr W; if he wants his shoulder fixed, he's going to Dr Kibler; if Dr Kibler wants his shoulder fixed, he's doing it himself." And that, apparently is the hierarchy of shoulder surgeons in the US.  At the time, I was still researching whether that really was just in the US and I could have the surgery somewhere in the UK, or whether it was indeed entirely true.  As the story continued, clearly, I discovered it was indeed entirely true - Dr Kibler had 'discovered' the injury and developed the surgery only a few years earlier. And, as I was told, he really did 'write the book on the scapula'.

And so after some liaising between doctors in Philly and in KY, we set off on our 650 mile journey/ adventure through Pennsylvania, Maryland, Virginia, over the mountains of West Virginia and into Kentucky.  

        

Tunnel through a Mountain PA

Welcome to West Virginia

         

Mountain Rd - as far as the eye can see
~2000ft high at some points!

Runway trucks!
This is a novelty to us Scots!

Welcome to Kentucky

I saw Dr K on Feb 27th 2012 for my initial consultation, which I reflected on yesterday. (Original blog post from 2012: 'Surgery Tomorrow' ;and I had my surgery on Feb 28th 2012 - original blog post: 'Ouch').

The surgery went well - it HURT like I had never imagined. So much for it can't possibly feel worse.... But surgically, it went well, I pretty much had exactly what Dr Kibler thought, and the repair was successful. 

Obviously, since then I have continued to add to pieces of the puzzle over the last two years, and have learned the degree of nerve damage I did sustain, I know now that there remains a lot that is still unknown.  Any further recovery is going to take a l-o-n-g time, even from now.

This image shows the muscles I had surgically repaired two years ago today:

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

This image is a pretty good image for showing exactly which muscles are where.  The big red muscle in the image is the trapezius (I think upper and lower - my lower trapezius was detached, this is still a big muscle).  On the right side of the image, you can see the middle and lower rhomboids.  These were the muscles that were detached from the medial (closest to the spine) border of my right scapula.  The lower trapezius muscle was "flapping" (surgeon's words) and the lower and middle rhomboids were "detached in multiple places".  Dr K thought the agonising 'pinging' sensations I had experienced several times since my fall were actually more of the rhomboids pinging off the bone, fibre by fibre, as tension on the remaining attached muscle increased.

I have my surgical report, which is really interesting to read, but the saddest sentence in it (for me) explains there were differences in tissue and scarring in the rhomboid muscles "indicating a failed healing response".  I don't think there is a sadder way of putting that. My body really did try.

When I came home to Scotland last September (2013) and went back to see my physio, R, (in Glasgow, where I am living now), one of the first things he said to me (as I presented him with a mountain of paperwork) was "I assume the trapezius was a partial detachment?". This was interesting, because Dr Kibler had explained to me that usually when he does the surgery, he can tug on that muscle at the spine of the scapula (also shown on the image) and feel some resistance lower down the medial border where the muscle is still attached; but with mine, there was complete detachment and it was "flapping".  So, the answer was no - it was completely detached. R said "you've blown my brains out".  He told me, and then my mum and dad, when we went back out from his consulting room, that he just couldn't even visualise how it was possible to do the damage I had done.  This is a guy my Dad considers the best physio he has ever worked with/ been treated by in his professional (soccer/ football) career.  Someone who treats top level athletes, dancers (his clinic is next to a major theatre in Glasgow) - and I've said before, every gymnastics injury I had.  It is truly an illustration of just how unusual and complex my injury was - but that should not justify the fact I was simply dismissed by multiple doctors.  

R frequently tells me that I still have a lot of damage; a long way to go; lots of work to do - and he works with my muscles gently and carefully, still careful to ensure I know 'pushing it' is not the way to go.  I would not trust any physio here, more than I do him, to treat my shoulder - and now that he has 'got his head around' just how crazy my body is, and has 'seen' in his head what my muscles/ tissue are like and what position they are in (different every time he sees me apparently), he treats me better than I imagine anyone else could - especially because he has treated me for various injuries my whole life.  But he is very clear: anyone who tells me they can 'fix this' (the nerve issues) doesn't know what they are talking about.  This is very much (still) one step at a time.  It's ok, I know that too.  

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

(Like nerves)

My point in explaining all that is really that R is to the world of physiotherapy what Dr K is to the world of scapular surgery.  They are both absolute geniuses at what they do, with a wealth of experience, and I would estimate them to be close in age.  I think they would get on very well with each other.

It's interesting for me to have been so 'in' everything for two years and the fact that my progress has been SO slow is something I have had to accept - learned while on a physical and emotional rollercoaster.  But in that time, I have been learning with everyone else ("This might not be great for you, but we're learning lots." said Dr Kibler, the last time I saw him.) as time has s-l-o-w-l-y passed.  To see it from a fresh perspective, through R's eyes, and also to an extent from my new GP's point of view, I have been reminded of just how unusual some things are.  I feel like it has opened my eyes a bit (again) too.

I have become used to certain things - for example this week my muscles - for a reason entirely unknown to me - have been spasm-ing severely.  They have done this before, but not for a few months.  In the past week to ten days, my pecs are so tight, they are pulling on my top ribs and the head of my humerus, causing lumps to form; my biceps tendon also has palpable marble-sized lumps again; the superior angle of my scapula is very close to poking through the top of my shoulder, and I have one, maybe two, lower ribs at my back which seem to have dislocated again.  Today I had to call my doctor's surgery to make an appointment and request extra anti-spasmodics and explain I'd been taking more than I'd been prescribed (which is a lot less than 6-8 months ago - but of course, they don't know that) "because my muscles have been spasm-ing, I have lumps on my bones and they'd caused my ribs to dislocate....But that's ok, it happens."  I added as an afterthought. Yeah, if that doesn't sound crazy, I'm really not sure what it sounds like....!

My definition of the word 'normal' is definitely NOT 'normal' anymore.

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

I guess, if anything, looking back over the past two years really has been a rollercoaster.  It has been a learning curve - admittedly for everyone who has been involved in my treatment; and continues to be so.  Looking back specifically two years ago today to my surgery seems like such a small part of something so much bigger than I ever imagined it would be.  And ultimately, no matter how many people have (very kindly) told me they think I am 'brave' or 'an inspiration' or that they 'just couldn't do that' - none of that is true.... Ultimately, you do what you have to do; what anyone would do.  You take what life throws at you and you just keep going, hoping things will get better.

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

“That which does not kill us makes us stronger.”

       ~  Friedrich Nietzsche

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

Janus

Janus is the Roman god of two faces - one looking backwards and one looking forwards; the month of January, a time for reflection and a time for looking forward is named for Janus - and even more pertinently this year, winter storm Janus paid us a visit in the Eastern US, dropping over 13" of snow in Philadelphia, but just about 7" west of the city where we were.

After Winter Storm Janus

Now, at the very end of the month (as I am writing - likely it will be February by the time anyone wakes up and reads this, but I'm back in Scotland with a turbulence-traumatised-jet-lagged body(!), so I'm still counting it...), having travelled back after spending xmas and new year with my parents (and fitting in some doctors'/ physios' visits) it seems like a time to reflect.


Reflecting is easy.  Reflecting is what has happened, what's in the past; what we know.  What we would do differently if we encountered a situation again.  As they say, hindsight's 20/20.


Looking forward is harder.  I actually believe looking forward is harder for everyone, most people are just lucky enough not to be aware of that.  People make plans, set dates, book holidays, plan weddings, families, travels, even envision whole lives for themselves, for their loved ones -  and in a split second - a twist of fate, a mistimed moment, a misjudged movement, a slip - anything, whatever we want to call it; those of us who have experienced that split second - in all the disguises it wears - know.  We know that planning is a joke.  Looking forward is a joke.  People tell us exactly what they have planned, month by month for the next year and we smile and nod and hope it happens for them, but - and I know this from talking with some close friends who have all experienced some sort of personal trauma which has turned their lives upside down - 'we' don't really believe them.  We've learned that plans are great - they're exciting and appealing and, sure, we'd love to be making life plans too, but we're always aware they are really just ideas - things we'd like to happen, but we have learned nothing is guaranteed.

And it's not that we don't make plans in a negative way, or even that we don't attempt to make plans, but we just have this awareness that we're making a plan, it sounds great, but if it changes, we're also ready for that because we know how fickle the universe is.  We know.

January is always a time of reflection for me.  Even when I try really hard for it not to be, I simply can't help it (a bit like making plans!).  If I really think about it, I can go right back...

January 2005:  This is actually the year that my life was turned upside down. NINE years ago now.  Not that I really knew that at the time...  I got a virus - my mum had it too - mine just didn't go away.  I truly never understood what fatigue was until this time - it's NOT like being tired.  Mum moved back to Edinburgh and between the support I got from her (in every possible way) and the support I got from my wonderful tutors and lecturers on my MSc course (who staggered hand-in dates, let me run my MSc experiments from home, and offered every kind of support that was available to me, I was able to push through and finish my MSc.  Despite not being happy with my overall grade (and having been repeatedly told I should be proud, not disappointed!), I DID complete my MSc.  I then suspended the PhD for a year, went to Florida to stay with my parents for a year, with every intention of returning to Edinburgh and beginning the PhD in 2006.

January 2006: By this time I was ILL.  This was my worst year, with all the (as yet unknown) Lyme disease symptoms continually getting worse, spreading throughout my body and causing cardio and neurological symptoms along with a complete depletion of energy levels.  Looking back to that time is surreal.  I remember not being able to walk; spending all day in bed with the sole goal of making it downstairs for dinner.  I remember sliding down the stairs on my bum, holding on to different things to support myself so I could walk to the kitchen table,  that absolute minimal effort taking so much out of me that I could not even chew my food; and my Dad carrying me back upstairs again.  I remember it with such a strange 'detached-ness' - surely it didn't really happen to me, but it did.  I remember needing to borrow/ hire a wheelchair anywhere we went; not going to sleep at night for fear my head was going to explode with the horrendous headache I had.  I look back on that time and it very much seems a surreal blur, but somehow, I survived it.

January 2007: This was the year when things began to change... kind of.  I learned about the microbiological theory of chronic fatigue syndrome - still my 'official diagnosis' (i.e. we don't know what's wrong, go to bed and waste away; better yet - see a psychiatrist, actually, I wasn't even offered anything like that - I know people even now, who are though).  I learned about allicin, my very foggy brain attempted to learn microbiology and I took some supplements that began to change things.  Ultimately they definitely stopped me getting worse; they gave me improvements with some things, but looking back - they seemed huge at the time - they were minimal.  What they did was give me hope - this wasn't going to be this bad, forever.  It was the year I got kicked off an online forum for daring to suggest to people diagnosed with CFS that something might actually help them.  Honestly, sick in my bed, a member of a website (lets call it 'cloudy chums' - a reference to the difficulty in thinking and sharing those experiences with others in the same position) and eager to share my progress, and maybe help others.  The NHS's approach to CFS/ME/CFIDS was to 'convince' people through cognitive behaviour that they had to accept they would never get better.  Turns out they were pretty good at that - shame they didn't put the same resources into some actual helpful research....  My improvements may have been minimal in the big picture, but were HUGE at the time.  I could stand up and have a shower, wash my hair on my own, walk for short periods without a wheelchair being required.  Those WERE the first steps of that recovery.  Even then, I never knew how complicated THAT recovery would be.  Everything required careful calculations (and still does) - how much energy did I have?  How would I feel after doing X? Were the repercussions worth it? .... etc.

From 'The Spoon Theory' by Christine Maiserandino
(Click for her wonderful analogy)

January 2008:  I had continued to make progress throughout 2007, albeit very slow and careful progress.  I was unable to suspend my funding for my PhD any longer  - I had been ill too long - another reason part of my potential was taken away from me - no more PhD funding, it's only acceptable to be ill for a short period of time.  However, I didn't want to go down without a fight.  I spent 3 months (almost) at the beginning of the year trying to get back into it.  I moved back to Edinburgh and ran a set of experiments.  I was living on anti-nausea medications and red bull - and pro plus.  I would get home at night and have no energy to make or eat dinner.  I completed a set of experiments, but I undid all the hard recovery work I had done leading up to that.  I made the decision to give up the funding that year.  Ultimately, it wasn't a hard decision because my health had to come first, I just hated that I had to do it.  This was the year I had my official Lyme diagnosis - confirmed by spirochetes in my blood cultures.  Suddenly a whole new world of microbiology - with treatment! - opened to me.  Of course, my NHS tests were negative and that door slammed almost before it opened.

January 2009: In the first few months of 2009 everything changed.  My Dad's job took him to Pennsylvania where Lyme is common - PA has one of the worst infection rates in the US, and one of the highest deer populations.  A friend recommended a Lyme doctor, and an immigration attorney.  Wow! A place where there are actual Lyme specialists.  I had never heard of that - as dumb as that sounds now; there is a HUGE amount more information available online about Lyme now than in 2008.  The visa I had was actually the same one required for medical treatment and therefore I could move forward that way, with an awesome Lyme doctor, and an awesome immigration attorney - both of whom are very special friends to me now.  It might have been  positive news year, doesn't really mean it was a good year - basic logic.... if you have an infection (one of the most complex known to man) running freely in your body for 4 years (or likely longer before I became symptomatic), it's going to be a lot harder to get rid of than if you catch it early (YES!! IF YOU FIND A TICK, GET CHECKED AND GET ON ANTIBIOTICS ASAP!! I CANNOT STRESS THIS ENOUGH.  AND YES, I AM SHOUTING!!). The first choice of drug is an IV antibiotic - these are about $1000 a week, plus a PICC line (a permanent IV - to prevent a zillion injections a week, which is also expensive); this was simply cost prohibitive for us, with no health insurance for me, as a visitor.  Using regular antibiotics is still effective, there are just more side effects, especially in trying to get higher doses into the body.  2009 was spent dealing with horrendous 'herx' reactions, vomiting, and changing to a different antibiotic when my stomach could no longer tolerate one type.  There was improvement though.  I knew it was going to be a slow, rollercoaster-ride of a process.

I'm pretty sure I've put this in before, but I really can't stress to anyone enough how important it
is to get early treatment for Lyme disease - if you have ANY of these symptoms (especially in combination) and have been in a Lyme-infested area (almost anywhere now),
PLEASE harass your doctor until you are sure you are ok!

January 2010: This pretty much continued as the latter half of 2009.  I was getting better - the head-exploding headaches had eased; my resting pulse was under 100bpm, I could shower, wash my hair AND shave my legs in the same shower! (This was a big deal).  My energy levels were still not great, and every now and then we would get 'stuck' and take a break from the abx, switch to a different type; try different herbal supplements mixed in, etc.

January 2011: Lyme-wise, I had tried stopping my abx a couple of times only for the giant hands to reappear under my skull, squeezing my brain and causing the horrendous headaches again.  I also would just sleep - constantly - at those times.  I started on one abx (azithromycin - which had gone from $800 per month after its patent expired, to a more affordable amount making it an option), once a day, and it seems to keep things under control now.  I recognise the symptoms of Lyme 'taking over' and at these stages, an extra dose for a month usually stamps it back down again.  There are many issues in the news about the overuse of abx, but I have never had side effects because of long term use (the ones that made me sick can make anyone sick, used normally - or even used as a prophylactic against malaria for travellers).  I do keep a careful diet, take a good probiotic and digestive enzymes, but I don't eat red meat (at all), or factory farmed dairy products - I eat organic.  It's possible people eating a conventional diet are exposed to more abx - in the US 80% of abx use is in farming.  THAT never comes up in the news when doctors are discussing they won't give out abx (this doesn't change for a cold/flu - they are viral, so abx are genuinely useless there).  

In early 2011, I decided I could, and wanted to, go back to University and get my PhD - it had been my goal, my focus all along.  I was accepted back on to the programme and started in September.  Unfortunately almost all the funding had dried up, there were very few scholarships (and I did not get one - really, having done nothing for several years).  However, my plan was to fund my PhD with my 'accidental' jewellery business, borne out of my hobby, that had the potential to carry me through.

And then, of course, came June 2011 when that split second happened - I slipped on the stairs.  It was 11am, I was carrying some laundry downstairs in my left hand, flip flops on, hand just resting on the top railing as I took my first step.  I can remember it like it happened in slow motion - I slipped, felt my feet completely disappear from under me and swung and dangled from my arm, all in a second - landing a couple of steps further down, sitting on my bum, still holding the laundry in my left hand, and with my right hand still holding the upper railing.  When I went back, much later, that railing is about 2 inches higher than my arm can stretch to (I later tested with the left one).  I screamed out as I fell - got a fright, honestly saw myself tumbling, head over heels down the entire wooden steps.... probably why I gripped so hard.  My mum was home and came to see what the noise was.  I also remember this in a very surreal way.... the main bits being "why is your arm in the air?" - I looked at my arm as if I had no idea it was my arm.  I didn't know why it was there, and I couldn't move it.  My mum asked if I wanted her to try to move it.  She did - very carefully.  We now know she 'reduced' it - and that it was an inferior dislocation:

From Wikipedia:
Inferior dislocation is the least likely form, occurring in less than 1% of all shoulder dislocation cases. This condition is also called luxatio erecta because the arm appears to be permanently held upward or behind the head.^[7] It is caused by a hyper abduction of the arm that forces the humeral head against the acromion. Inferior dislocations have a high complication rate as many vascular, neurological, tendon, and ligament injuries are likely to occur from this kind of dislocation.

Strangely, it wasn't instantly agony.  I did say to my mum as I sat on the stairs and she had just put my shoulder back into place "this doesn't feel good".  She now says that was the understatement of the year.  I had zero movement, and the pain built as the day went on.

Of course I was supposed to fly back to Scotland the following week (see this 'planning' thing.....) and that was delayed.  There's a lot that happened after I did go back which I feel ready to write about soon, but for the most part, my 'shoulder story' in on here, so I don't need to go into detail about all that now.

January 2012: 6 months into my shoulder injury, things were not healing, I was not getting appropriate treatment and I was struggling with everything - my PhD, university, living alone - life in general.  I actually can't believe it has been two years since then.  I went to PA for 6 weeks over xmas (Dec 2011-Jan 2012), with research work to analyse, and I was there until September 2013.  I think the full details are for another post - I was unable to write them at the time.  And with the pain and stress on my body, the Lyme symptoms were reactivating and becoming more erratic too. That journey definitely was not (is not) over, and little did I know the shoulder journey was actually going to be worse.

2012 was an unbelievable year.  I swear when I tell people I think I wouldn't believe myself either.  Definitely quote of the year, by the wonderful Dr G Williams who diagnosed me in Philadelphia: "There's pretty much one guy in the world who can fix this for you and he's in Kentucky. I think you need to go to Kentucky and see him." Cue cartoon style *jaw drop* from my mum and me. Turns out he was right....

Surviving 2012 was the biggest challenge I have ever faced.(maybe until 2013)  Looking back, when I remember the true pain and horror and unknown that I felt every day, I would have gone back to 2006 - and that's really saying something.

2013: January came and it became 'I can't believe my surgery was a year ago and this isn't any better' - an expected 8-12 month recovery was clearly not in sight.  Much of that is documented here, although I tend to write about the positives on my blog.  Last year I was facing the possibility of never being able to use my arm again; of not knowing WHY things were happening the way they were; of being in severe pain forever - researching ketamine comas and botox therapy, both experimental, but with a possibility of easing pain, even if it was by changing the pain centres in the brain, and by paralysing muscles (respectively) - nobody had better solutions.  The future seemed to be a big black wall just staring me in the face, with no indication of what shape or form it might take.

Towards the end of the summer, I found a new nerve doctor, also an orthopaedic surgeon and  at the moment, this is the hope I have found.  Everyone seems pleased with a feasible answer to the 'puzzle' about why I have not been healing; but it is still going to take time to see if it IS the final answer, or simply another piece of the puzzle.


So......... January 2014.  Here I am.  I can look forward with hope, hope that finally, the best doctors and physios I have working together for me have found the reason for my severe pain, and for my slow healing; I can hope that this will lead to better pain relief - although in what form, nobody has any idea - I am already taking enough meds ("these should knock out a horse" kind of meds), and not getting true relief, only a slight easing of pain.

Ha ha... not even joking though!

When I look back and I reflect upon what I HAVE managed to come through, it should give me encouragement that I CAN keep going.  But in all honestly, it is exhausting.  I am going to try to be more honest about things this year.  Waking up and feeling the agony searing through my body before I even open my eyes is wearing.  Making any effort to sit, to be sociable, to go anywhere - and before that, simply getting washed, dressed, finding the right clothes that are comfortable enough for the pain that day before I even contemplate what I'm actually going to do makes the simplest things into huge challenges.  Having an outfit planned before I go to bed the night before seems like a good idea - but getting dressed, and realising that the top is too tight for today, a strap presses a sensitive part of my shoulder which has become inflammed overnight; or the top presses a painful part on my ribs that have come out of place again; or squeezes my upper arm if it's swollen, making my hand go numb... and more... these all mean I have to change and find something else - this involves getting undressed again, then trying something else, seeing how that feels (sometimes repeat, repeat, repeat..... sorer, sorer, sorer) - it doesn't matter how organised I think I am, something else always takes over.  Sometimes it is the sweat, caused by the pain, which means I have to change before I've even left my bedroom because I don't want to wear sweaty clothes all day.  The effort required for all that makes me feel like I've practically done a workout before I've even left my bedroom...... which requires a rest, a lie down - something to calm my racing heart, stop the sweating, wait for the black sparkling lights and dizziness to subside, and beat the overriding 'let me just go back to sleep' feeling........... it IS hard; and it IS frustrating.



So as I look back to where I have come from, I know that I have survived things I would have never thought possible and when I look forward I hope that on those tough and challenging days, that is the thought that always remains with me.

.... for something BETTER!

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