Wednesday, December 31, 2014

My 2014: playing catch up

Well, it's been a while since I blogged - there seems to be so much to say, so much going on, and every time I think I'll write an update, something else uproots that and I don't know where to start and where to stop... So with a little bit of inspiration from Facebook, but with a lot more commentary (everyone knows I talk too much anyway!), I thought perhaps this can catch me up with an overview of this year and let me continue on from there.....

MY 2014


Spent in Pennsylvania with my family, to 'touch base' with my US physios and doctors and to spend some time in the snow, including learning how to survive a polar vortex (layer, layer, layer!) And enjoy my Mum's Burns' supper she hosts for our American friends - always a fun night!



Luckily I missed the ice storm that came the week after I left - it looks pretty............ but no power in a polar vortex with arctic temperatures is no fun!

Unfortunately that awesome combo of a damp Scottish winter + jet-lag + a bad cold seemed to dominate most of February and I didn't do very much at all.  Other strange symptoms seemed to appear and I was worried I was having a Lyme relapse.  On top of that, my shoulder pain seemed to be at a constant high level, at times spiking above that, rendering me virtually immobile.  It was not good - it would wake me up, spasming in the middle of the night, wondering how on earth I could deal with it.  But I did.  I survived - this year feels like it has been about survival!

Damn right!


It turned out that I actually didn't have that jet-lag + bad cold combo, but that I had mould poisoning.  The room I was renting - and had spent almost 24/7 in for a month - had mould growing on the walls, and on my furniture. 

How could I miss this?  I saw the wall when I moved my chair to reach something that had fallen - the chair had been angled across the coldest corner of the room with a long throw over it.  However the mould had spread across the entire wall and even onto a dress IN the built-in-wardrobes.  As if I needed more stress and health issues to deal with.  After three doctors and a microbiologist friend looked at my photographs (and my blue mouth and yellow throat) and told me to "get out"; March was spent searching for my own place to rent, and staying with some wonderful friends who saved me!

For some very, very special people 

The first question was: should I go back to my parents?  My health had deteriorated, admittedly (now I'll say it) I was struggling; I wasn't getting adequate treatment for my shoulder (although I was on a couple of waiting lists at that point), and I was going to have to move anyway….  I (perhaps stubbornly) didn't want to 'run away' from the first problem I encountered, so I found a place quite quickly through a chance encounter with an old friend and decided to give it a go.

Around this time (the exact day I got the lease), I received letter telling me Scotland's 'expert' in brachial plexus issues was refusing to see me:

I had hoped to go home and spread awareness about my injury - most common among police dog handlers and in road traffic accidents.  Unfortunately I did not encounter any intellectual curiosity, only 'experts' who were not interested in new things (this is just one example).

Yes, it made me angry (and a little crazy at the time - refused help without even being seen! A new surgery just dismissed when it might help others); it made me really disappointed in the system we are supposed to be proud of; the NHS that I defend to American friends when they talk about 'socialized medicine'; despite the fact I feel it has let me down repeatedly - and really disappointed for other people who may have the same injury I had.

Getting it fixed; having my surgery - it was purely by chance, just because of where my parents are living just now and just because we happen to have a good friend who is a highly esteemed doctor, with many contacts and a hugely compassionate personality.
I was lucky, that was all.

One total breakdown; one potential treatment avenue no longer available, and one 6-month lease signed.....


April I spent treating mould toxicity, slowly improving,;and moving into my own wee flat, enjoying some interior decorating on a budget!

*pics of flat to follow - it's late!*


May came with a sense of renewed optimism - finally, an appointment with the Pain Clinic, and some rare Scottish sunshine.

The River Clyde - with blue skies and sunshine!

The pain clinic doctor (an anaesthetist - Dr J) was wonderful - easily the best specialist I have seen at home in relation to my shoulder, a truly caring and compassionate doctor (isn't that supposed to come with the job?!  How sad that it often does not.).  However, Dr J's specialty is pain management - not anything that can 'fix' me; and as he works for an underfunded NHS pain service, my next appointment is April 2015.  Not exactly helpful for me - or, I'm sure, for anyone else trying to address their pain issues.  And I'm sure it's not ideal for Dr J either.  The outcome was to start a new drug (which I'd been avoiding for about 18 months due to its side effect profile - but I needed something to offer some relief, so I decided to try it); and home visits by a lovely occupational therapist. 

She was also  a genuinely caring person, passionate about her job, and I enjoyed her visits and found some of her advice helpful but to be honest, it would be most helpful to someone at the beginning of a major recovery - after 3 years, you really have no choice but to work out how to adapt things yourself.  Of course, when do you know you are going to end up in  rehab with no end point except in major traumatic incidents like car accidents, or failed parachutes…

…We ate at a restaurant this summer and the server noticed my neck brace & sling & pillow and asked me what I had done.  Turns out he had also injured his shoulder a few years earlier………. When his f#%$^&g parachute didn't function properly (not for the entire jump, but from a considerable height) - and there he is serving tables.  Seriously universe?!   Was I a psychotic serial killer in a past life?!


June was dominated by the now-definitely-hated drug pregabalin (Lyrica).  I agreed to "give it time" and to "let the body get used to it".  I got to week 6 before I properly blacked out for about 7 hours - luckily I was next to my bed when I did so, but when I 'woke up' and went through to the kitchen, I had dropped things and broken things.  I cannot remember another day that same week - at all.  I know I didn't go anywhere, 'clues' suggest I pretty much just slept - luckily.  And that was bye-bye Lyrica.  I will note that while I would not have kept taking the drug after it had such terrifying effects, I also did not feel any pain relief from it - deciding that was not an option for me was a no-brainer.

The next thing that happened in June was really the deciding factor in me coming back to the US to stay with my parents for a while - and even more of a necessity, my physios and doctors here.  I saw the 'top' orthopaedic specialist in our area regarding my shoulder (I'll call him Mr X* ).  Initially I actually saw a different consultant, who worked under Mr X.  He glanced through my notes, asked me to do a few movements and very quickly decided Mr X would want to examine me himself.  That's perhaps the weirdest bit of this little story, for me.

He arranged an appointment with Mr X for the following week.  I had been told wonderful things about him and went to the appointment feeling less nervous than I had previously about appointments at home.  I had a new, fantastic, GP; Dr J at the pain clinic had been wonderful, as had the OT.  I went to this appointment on my own - for the first time in a long time.

Perhaps that was my first mistake... who knows?  Mr X was not interested in my history, my surgery or in helping me improve.  He didn't ask me any questions specifically about what happened; why/ where my pain was; how I would rate my pain; why I was still seeking treatment……… It's one of those appointments I look back over and I wonder how it turned out that way. Could I/ should I have tried to take more control?  (I had been advised to just answer the doctor's questions - my dad's physio friend who was treating me told me that there was "just too much information in [my] head……. It's too much, even for a doctor, to take in at once" - so I went with that).   As a result, he glanced over my file, seemed to think he was supposed to assess my surgery, which I tried to tell him was not the issue now - it worked - but he assessed me that way anyway, yanked my arm about my head - painfully……. Also, it doesn't go above my head, so I don't know what that did - and I can't even move it that far myself.  His ultimate conclusion was this:

"Reassured and discharged."
My US Doctor of Physiotherapy (with 20+ pages of publications on his C.V.) read this letter and asked:
 "Did this guy even examine you?"

(I can swim, by the way.  And I told him this.  And no offence to any water aerobics enthusiasts, but I think I would prefer other things to enhance my social life!  At least for another few decades!)

And there I was again, questioning my own sanity; my own instincts, and my own body.  If two 'top' doctors were just going to dismiss me, was I doing the right thing?  How could I possibly try any harder?  I was not coping - physically, not at all; and of course that has an emotional and psychological toll as well.  Ultimately trying to be there, to fight alone was not good for me in every way.

Rothman Institute, Philadelphia:
"Mission: To provide our community with high quality, compassionate... care.... the results of which will exceed expectations

 "Every effort will be made to keep your appointment to the minimum.  Your cooperation is appreciated.

On top of that, the only medical person who had been of any help at home - my wonderful physio, a family friend - was retiring.  And even he honestly admitted he didn't know what to do with me - my physios here are not sure either, but they have a team, they are collaborating with each other, and they are talking to other surgeons, doctors and physios treating other patients with the same issues - that makes a big difference.

Adding those three things together and factoring in my overall health going rapidly downhill, I 'decided' to come back over here for a while.  It was more a choice of survival, but, that's what I chose: listening to my body - survival.

Trust yourself.

*not his real initials


I arrived just before the weekend of the World Cup Final (how dates are remembered in my house - football/soccer) and although my parents knew I wasn't doing well at home, I don't think they were expecting me to arrive in quite as much of a mess as I did.  July was spent mostly sleeping, eating - I was feeling hungry again, after a long time of eating very little, and soaking up the last rays of the sun……when I managed to get out of bed in time.  

Summer flowers bring...........Hummingbirds!
(My mum's photo)

I also made appointments with my specialist physio, M, and with Angelo, my regular physio, and my doctor - both of whom were in agreement that I had gone downhill and that the 'treatment' I received at home was not good.  Project: 'Recover Lost Time' began


Project: 'Recover Lost Time' was AGONY!  Cue nearly passing out at physio again while I let my physios torture me.  My pain felt like it was going off the charts, I wasn't sleeping because of it and while my physios seemed to get some increased movement - I couldn't do it on my own.

In between the torture, we had a wonderful guest :-) and managed a trip to the Jersey Shore, which was just so calming and peaceful being able to lie in bed and listen to the waves crash against the sand.  Insomnia even let me catch some beautiful sunrises!


The most exciting thing in September was Mum turning 60!

Something to celebrate!

Otherwise my life continued to be as exciting as physio & doctor appointments can be.


Project: 'Recover Lost Time: let's push to the limit' produced some……. Results? Answers?  Not exactly sure, but it seemed to provide some evidence that suggests my nerve problems are not my only problems, but that my scapular dyskinesis may be caused by something 'mechanical' as well.  I'm still betting on the frozen scapula - and after several weeks of working continuously with it, my physios do tend to agree, but what to do…….?

Strange swellings and shoulder/ scapula shapes

Yeah, really, what to do?  I'm a medical mystery.


Well, it's not exactly a giant leap, but compared to where I was several months ago, with no clue and no plan, my shoulder seems to at least have a 'pl __' now.  Uncertain though it may be.

Then, almost at the end of the month I did this:


Me + socks + wooden floor.  And yeah, it was funny at first - well, not really for me, but that idiotic optimism persisted somewhere……… "yeah, this is my 'good' arm……."

Gotta keep smiling.....................

So……. Up-to-date
(in fewer than 100 pages - amazing!)

December saw my sister & brother-in-law visit for the first time as a married couple.  Wasn't really any different to any other time they'd been, but I think they had a good time!

I saw the surgeon my physio had recommended.  Dr G.  He has done a couple of Dr Kibler's surgeries now, he's in Philadelphia - for a while it looked like a trip back to Kentucky might have been in the immediate future, so that's good.  He has agreed (and yes, agreed is the right word!) to "clear out the junk" from my shoulder.  This is apparently a technical term.  All the clunking and grinding and popping and crunching noises seem to be getting worse by the day.  This is really blocking movement and creating a lot of tightness in my shoulder capsule, which is not good.  It leads to inflammation, which leads to further compression of my nerves which leads to a numb neck/ face/ear/arm, and more pain in my scapula and down into my back and side.  The tightness is also causing some pretty horrific spasming which is pulling my ribs out of position, so I seem to have sporadically dislocating (well, subluxating really, if I'm not being dramatic) ribs which my physio can audibly click back into place - most of the time………. A couple of weeks ago, he tried 8 times to get one rib back in (at my insistence).  It did not want to go.  So it didn't.  Ouch.

More recently I've been doing this really weird thing………. Sleeping!  Clearly not at the right times, since it is 4am right now, but I have been finding it so difficult to stay awake.  Let's really paint the picture  -  on xmas morning, my mum woke me up by physically removing my earplug! There have been other occasions where she has literally taken a cup of undrunk tea out of my hands and I do not stir.  It's kind of freaky.  Then last week, Angelo was doing some work on my neck as usual and I was pointing out the nice big lumps that form where my muscles spasm and pull and he did a little manipulation and 'POP' - apparently I had three twisted cervical vertebrae.  I think they've gone again because I've been a bit dozy for a couple of days again.

I did manage to wake up and enjoy xmas day; but my favourite gift was given to my by my sister on xmas eve.  NEVER did I think I would say a trashy, tacky, xmas jumper would be my favourite thing, but she managed to find the PERFECT one. It really made me smile! I think I'm just going to wear it all the time anyway!  (Although I have told her if I break my leg this year, it's totally on her!)

And in other December news, my now-not-so-funny sprained wrist had an elbow and wrist MRI yesterday.  I have yet again taught myself that you cannot teach yourself how to read MRIs online, even by watching medical school powerpoint courses, so I'll just need to wait until the doctor calls with my results.

And he'll probably talk to my mum, because when Dr G said he would do my surgery, I wanted the first available date -

December 31st… surgery TODAY…. Watch this space.

Oh, and Happy Hogmanay!

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