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 ~

t minus 21 days

Well, I went to physio.  And not entirely under duress (unless you count my brain forcing my body out the door).  If I'm being entirely honest, which I intend to be this month, there is one image that overwhelmingly sums up today:

Definitely feel like I am working towards the impossible just now; so this quote seems entirely appropriate.  Really looking forward to the 'suddenly' bit.  He's a saint - he has to be right... right?!

Start by doing what’s necessary;

then do what’s possible;

and suddenly you are doing the impossible. 

~  Saint Francis of Assisi  ~

Surgery follow up, Hogmanay memories & a kaleidoscope of butterflies

Disclaimer: First, I'm scrapping the 'blog a day' for January thing because it's clearly not been very successful!  I am honestly really exhausted after my surgery, I'm on strong pain medication and trying very hard to push my body through the necessary exercises as well.  As a result, I have developed a new, longed-for skill: falling asleep.  I just didn't really long for it to happen in the car (as a passenger), at physio, during Skype conversations, during any conversations........ My exhausted brain and body are not feeling particularly inspired right now, but I'm working on it!  Maybe February will bring with it some colourful inspiration...


SO................. surgery follow up - thank you to those who have sent emails/ messages/ said nice things, or asked how I am..............

................................so here are the gory details :-)

I saw my surgeon last Monday to get my stitches removed and for the general no oozing/ burning/ icky incision areas; no fever; no other weird stuff check.  Apart from the unexplained vomiting (& the surgery!) I seem fine, or more accurately, 'as expected'.


Stitches were removed from my three tiny little incisions which are healing nicely and look like they will barely leave a mark.  But believe me, these tiny little incisions are deceptive!  I'm using pure aloe vera gel, which is what I put on my first scar too - which is about fifteen(ish) times the size of these and looks great; so I think they'll pretty much disappear - top right photo shows how good it looks already.

Top:very odd but effective & protective 'sponge-ball' dressing; stitch on front incision next to same incision with stitch removed - barely going to leave a mark!

Middle: trying to get some perspective on front/ back incisions as 'release' was deep between these

Bottom: tiny back incisions with stitches (mainly there because taking photo out really messed up Picasa's auto-collage thing, so extra incision/ stitches photo beat the bloody gory ones!);
bruised inner elbow - guess they injected something here too!; hand - I don't really bruise that much but look how THICK the needle gauge was -  nurse told me she was "glad it went in first time, I couldn't see the vein" - I'm glad she told me that after it went in - not great when they say "big pinch and try to stay very still"!

Oh - and the permanent marker is the surgeon's initials.  You'd think creating one that maybe just evaporated after 12 hours would be more helpful than a permanent marker on an area too sore to scrub!

Back to my deceptive little cuts.  I knew it was never going to be like Dr K's surgery in Kentucky - open back surgery versus arthroscopy, definitely no contest as to which is preferable; but a lot can be pushed and pulled and stretched and cut through these neat little incisions.  I went into this surgery feeling different - in many ways - from the first one.  The first one, I thought it was going to fix me - oh the naivety!  I also went into that one thinking it could not possibly get any worse.  Nope.  Also, I was actually excited for my surgery in KY (seriously) - for all those reasons.  That wasn't totally naive.  And technically, it did work.  It just just that there was a whole lot more wrong than I knew at the time.


This time, I was not excited.  When the surgeon asked me how I was feeling prior to my surgery, I told him - and the anaesthetist and the anaesthetist's assistant, and the pre-op nurse - all of whom were wonderful - "to be honest, I'm a bit nervous about this one." Nobody knew what the outcome would be. But having everyone, including the anaesthetist and my surgeon taking time before the surgery to come and just chat for 5 minutes, to introduce themselves, explain what they'd be doing, ask if I had any concerns - I was not nervous about the level of care I would receive in any way at all.  Simple gestures, several minutes of their time.  Reassurance.  Kindness.  It's amazing the difference it makes and it was so very much appreciated.

I also, however, did not for one moment expect to wake up in excruciating pain!  This was those three wee incisions - not the open back, drilling-through-bone surgery I had in KY!  I hadn't even contemplated waking up in so much pain.  My first conscious thought was: this feels just like the last time - like I had been cut open, cut up, and sewn back together..... which technically did happen, I suppose.  They asked me to rate my pain on a scale of one to ten.  I've explained often enough on here why I hate that scale and really struggle with it.  Apparently my drugged-up, semi-anaesthetised self has the same existential problems as my undrugged brain.

"Just give me a number," the nurse said, "is it 5? 10? 50? 250........?" (At this point all I wanted was a sip of water. One sip. One ice chip.  Anything. I kept slipping in and out of consciousness but my mouth was SO dry from an anti-nausea patch - like talc had been squirted in my mouth. I kept pointing at the patch on my neck, trying to explain; my mouth was too try to say more than a few words.)  So I picked a number.  "250." I sobbed.  She said it first - and it  did hurt!   A LOT.  I asked again for water or ice, between sobs.  No water until I was conscious.  They gave me IV demerol........ sleep, wake, repeat........... they gave me IV fentanyl............. sleep, wake, repeat............ they gave me IV ketamine......  I kept falling asleep - probably only minutes were passing, it felt like forever and in between I kept trying to ask for ice, or water, and pointing at my neck.


Eventually I managed to open my eyes for long enough to be deemed conscious (imagine a kid pretending they have frog eyes - because this is what I was imagining as I tried to keep my eyes open.  I'm pretty sure this is what I was doing.).  I got ice.  I managed to talk properly.  The f&^%$#g scopolamine patch had fallen off my neck at some point.  I must have looked like a proper numpty just pointing at my neck (on the good side), not really saying anything! Although I wouldn't have choked on a SIP of water. With this figured out, they got me another patch.  And more ice chips.  And my parents.  It's funny, people worry so much about you (/someone) go in for surgery, and then they laugh at me (/someone) so much when I'm (/someone's) all doped up and waking up.  There must be some sort of relief-release thing going on there.

The nurse told me I hurt so much because I didn't have any local anaesthetic before the wounds were closed - I will stop claiming the lidocaine-catheter-into-the-wound 48-hour-pump-thing in KY did nothing.  I believe them now.  It was doing something!  

Where was it now?! Ouch!

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

The horrendous pain was bad for a few days, but ultimately it was nothing like KY. (Thank goodness!)  'We' -  my doctors spoke to each other, and to me, addressing my concerns - made sure that I really did have adequate pain relief (in tablet form).  At the time of my surgery in KY, nobody knew the extent of my nerve damage.  Keeping my pain under control with very strong doses of drugs should (hopefully) stop my nervous system going into overdrive. It wasn't quite 'normal' pre-surgery, but there has been a big improvement in the past 6+ months - surgery had the potential to set that off again and we are trying to take every precaution to avoid that.  So far............ fingers crossed.


At my follow-up appointment, Dr G told me he expected my surgical pain to take around 4-6 weeks to ease.  That was quite a relief (more for my mum I think) to know severe pain is still expected at this stage.  I do feel it is way better than after the last one; but I am very, very aware of how much the medication is helping with that - and very grateful to have something that is working.  Really working - I have just discovered that painkillers are actually meant to do that - kill pain.  Not take it down a notch or two; but really push it down; make it nearly disappear.  Dr G said maybe not take it away entirely, but maybe get it down to a '1' - if I had anything that could even get my pain consistently down to a '5' I would be delighted.   I have never had that before - the kind of pain relief I had after this surgery. I can't believe I genuinely didn't know that.  (I am now looking for a pain doctor.)  And right now, all the sleep is awesome!  Not ideal, or desirable, as a long-term solution, but definitely helpful at the moment.  They say you heal when you sleep...... and I have a lot of healing to do, and rather a lot of sleep to catch up on too!

I've used this before, but I love it.
Also, this fact is hereditary - it is passed down on the maternal side ;-)

Dr G explained that he cut away about 2 to 3 inches of scarred down glenohumeral ligament "deep" in my shoulder.  To be honest, I need to read a bit more to really understand it, but basically the scarred down ligaments have been preventing my arm from being able to reach above my head (or be pushed, pulled, stretched, forced - pick the torture).  Under anaesthetic, my left (good) side movements were measured and then my right side compared to it.  Apparently it's quite unusual (surprise surprise) to have close to normal internal/ external rotation (& some other specifics) and just not be able to do one movement.  My physios (and I have too!) have spent a lot of time working manually which has brought improvement - at one point a physical therapist in KY told me I had "the worst external rotation [she'd] ever seen".  Why some of the manual therapy worked, but not the overhead, I don't know.

From: http://en.wikipedia.org/wiki/Glenohumeral_ligaments
Marked: CAPSULAR LIGAMENT

Honestly, my guess would be I damaged that area initially - it fits with my initial pain location (pain in that area has been a constant), and my mechanism of injury, the way I fell etc.  The other stuff got stiffer as time passed.  But who knows, really.  Now, the big question is whether the surgical release of this tissue will be enough to enable manual therapy, with passive movement, to make enough of a difference; or if there is a chance I have more scarring in other areas of my side/ribs/ lateral scapula area that may need to be looked at somehow.  Only time will tell.


All in all, Dr G has done exactly what he said he could do, and he has done it - so far, it seems - in a way that feels positive, helpful, and totally worth the surgery.  I am just keeping my fingers crossed that the healing continues and I survive the required physical therapy.  At my appointment he did say that one of the difficult things is being asked to do therapy; to keep it moving; to prevent it scarring again - all while there is pain and healing going on.  That's nothing new, it really feels like I've been doing that since June 2011......... I can't believe it's been so long.  My body is agreeing with this being a major challenge though.  It completely freaked out at physio on Monday (the 'stick' and I really do not get on - it has never liked me; nor I it); we opted for a more gentle session on Wednesday to calm things down; then Friday we went looking for that elusive 'line' everyone talks about,the one I've been searching for for close to three years.  It seemed better today, but it was really a trick. My body is fickle!!  It just waited a few hours, I had a nap after I got home (ok, I fell asleep right in the middle of a skype call to my sister.... sorry Jill!) and then later,  my muscles freaked out again, and spasmed, causing drenching sweats as a kaleidoscope of butterflies* fluttered inside me, little fasciculations fluttering within my muscles - an old familiar feeling, unfortunately. Excellent. The line continues to elude me.


*I was going to say a swarm of bees buzzed inside me, but I use the butterfly analogy more - it's more accurate; so I Googled a collection of butterflies and learned the correct term is a kaleidoscope of butterflies - how cool! I am going to use that any chance I get.  And I don't imagine there will be that many opportunities, so there it is. I think the colours should be compulsory too!

Live Colorfully! (Love Kate Spade - I could do this resolution!)

Back to Hogmanay (as New Year's Eve is known in Scotland - and it's such a big party that both January 1st and 2nd are public holidays!) and my post-surgery evening..........

I did manage to get upstairs (with help) and into bed (ditto) - after KY I couldn't climb stairs for 2 weeks, nor could I lie flat.  This time I didn't need to have my arm immobilised, although I have a sling for when I really need it - especially in busy places, it serves as a warning sign as much as a support (maybe I'll get some fabric paint..... make it colourful!)  So although I was sore, objectively I did know it wasn't as bad right from the beginning.  Although I was totally out of it from the "entire pharmacy" of IV meds the nurse told me I'd had (her words).


Mum came upstairs regularly, to check on me - I was mostly sleeping.  At one point she asked me if I thought I'd be awake at midnight (for the new year - one I won't forget!) and did I want her and Dad to come upstairs 'for the bells' (another Scottish reference) rather than leave me alone.  I looked right at her, eyes open, and said, "have you still not finished putting together all of these prizes for this thing for Jill & Fraser?" (my sister & brother-in-law - who were back home in Scotland).  The look on my Mum's face was priceless.  I really don't think I've seen her speechless before!  Despite being - clearly - not quite with it, I did manage to respond first,"oh, I must have still been dreaming."  (Absolutely no recollection of my dream) - to be honest, I think it's actually funnier to me because I remember it....... this complete expression of pure confusion on her face.  I also remember her coming in some other time, asking me what I was watching - my laptop was open -  "I'm watching my screensaver." (In my defence, my screensaver is mainly photos and quotes saved from Pinterest - sometimes I just let it play like my personal little inspirational slideshow while I'm doing other stuff anyway, although I'm not usually 'watching' it.)  She thought it was hilarious.

For entertainment value, I did amuse them :-)

They got me these:

I really don't know where I'd be without them.

"Life is what happens to you while 

you're busy making other plans." 

     ~   John Lennon  ~

Frustrating little thing called patience

Today this happened:

My first thought: it bloody well better...

(Clearly I am still learning about the concept of patience...)

Then I got into bed, ready to write this blog post, moved about a millimetre to adjust my pillow and BAM! Excruciating pain.  A pain I have come to identify as scar tissue breaking up. So................. just more tissue ripping apart inside my body again......... followed by the initial, and futile, lip-biting attempts to quash the reaction to the increasing pain.... groaning and sweating; quickly joined by the realisation the burning in my eyes and cheeks are hot tears; then the realisation I'm holding my breath because breathing hurts too much............ knowing certain positions are (moderately) helpful, I painfully ease myself into the weight-off-the-scapula-arm-compressing-pillow-hug that offers the most relief while I wait out the worst of the pain until I can move again.  Luckily I had just taken my bedtime dose of tablets (although I don't think they're working very well) and I thought it didn't take too long this time, but as I look at the clock on my computer while I type this (with only my left hand; my right arm is following the now-well-defined pattern and has gone numb) I realise that all took about an hour. 

 It's not really a good thing that I have come to accept this as 'normal' - "are you sweating?" my new (and also old, just 'new right now') flatmate asked me with a little ring of panic in her voice, during one of these pain episodes.... "doctor? hospital?.... what can I do?... tea??"  (Yes, V, if you're reading this, you're awesome.  And if you're not, now I'll know because you won't let that compliment pass unnoticed ;-).  Seriously though, she is a fantastic friend.  And has realised that tea is pretty much the solution to everything - I guess a good inspiration for my January blog in many ways!) So - yes please, the logical choice - tea (and ice/heat and muscle relaxants) as I attempt to assure her this is ok; this is 'normal'.  Her face usually says "well here's the tea, but I don't believe you."

She's probably right.

But right now?? Now that I'm repositioned, wrapped in my heated blanket and able to breathe again...?? Now?! Now I'm thinking: patience??! Seriously!? Either I really needed a reminder (which I can assure you, I didn't; 'normal' pain is enough of a daily - hourly, minute-ly reminder -  this is going nowhere fast, and patience, although not my strong point, is a necessity); or perhaps the universe has some sick sense of humour.  Actually, I wonder if someone somewhere has a voodoo doll of me........

Here I was, all ready to write about journeys and individuality and how annoying cliches such as 'Patience pays' and 'time heals' really are true... Even if we all hate them when someone says them to us (yet have probably also said them to others) - because the irritating thing about cliches is they are cliches for a reason.  A little writing, a few inspirational pictures I found on Pinterest (where else?!) and that was my blog-plan.  I should have been done, dusted and asleep by now (or at the very least, battling my insomnia...).  Instead I'm wishing I was in Colorado right now and could see if some newly allowed self-medication was any good for this pain....

Since I'm not in Colorado, I guess I'll resort back to the philosophical inspirations...

Realistically, being really pedantic, your world can fall apart in a day, or in an instant; I think it takes more than ten times as long... but we all do it - all the time, in our own ways.  So I think the point is we can put ourselves back together - with time, and some patience; and all in our own time.  

...............

  

 For me, those kind of sentiments are why some well-intended words, such as 'patience pays' - can feel both inspirational, calming, and frustrating all at the same time.  We are all on our own journeys, dealing with our own struggles, some are little obstacle that just get in the way; others create journeys that make daily life seem like an infinite Tough Mudder challenge. 


So it's always good to remind yourself of the little steps you have taken:

And, perhaps most importantly, never compare your story to someone else's.

“We are all in the gutter, but some of us are looking at the stars.”

    ~ Oscar Wilde

Can't Sleep

A more literal choice tonight.... pretty self explanatory!  I have had such awful insomnia this week due to some pain that we think might be the lateral edge of my scapula coming 'unstuck' at the bottom.  This would really be a good thing because that has been the point of all my drug-enabled-therapy, but it also means that one tiny fraction is coming unstuck and the rest seems stuck still, and the muscles have no strength in them, so it feels like one edge of my scapula is trying to constantly pull away from my body but all the other muscles are not strong enough to "hold" so instead it's just pain and pulling and burning and much unpleasantness...

It really has been keeping me awake so I've resorted to all combinations of drugs that seem to work sometimes, then not others.  I am sure I would feel much better if I could just get some sleep - so, thank you Morven, this song is perfect!

"Sleep"

Spend my nights howlin' at the moon,

Never wake before noon,

When the sun, it rises,

Oh, it always rises soon,

'Cause I spend my nights howlin' at the moon, yeah,

I never get sleep, sleep, sleep,

No, I just reach, rea-, reach,

I can feel it on the ends of my fingers,

And taste it on the tips of my teeth,

So you see why I never get sleep,

(I can't get no sleep,

Don't know why,

I can't get no sleep,

Don't know why,

I can't get no sleep,

Don't know why,)

Spend my night shootin' at the stars, yeah,

Tryin' to change the world with this guitar,

And I know it's a long shot, but it's working out so far,

So I spend my nights shootin' at the stars, hey,

I never get sleep, sleep, sleep,

No, I just reach, rea-, reach,

I can feel it on the ends of my fingers,

And taste it on the tips of my teeth,

So you see why I never get sleep,

I can't get no sleep (never get sleep),

Don't know why,

I can't get no sleep (never get sleep),

Don't know why,

I can't get no sleep (never get sleep),

Don't know why,

I can't get no sleep,

(Count sheep),

I've already tried,

(Drink whiskey),

It makes my throat too dry,

(Smoke weed),

It makes my eyes all red,

(Take a pill, Al),

What, and end up dead?

I can feel it on the ends of my fingers,

And taste it on the tips of my teeth,

So you see why I never get sleep, hey,

I never get sleep, sleep, sleep,

No, I just reach, rea-, reach,

I can feel it on the ends of my fingers,

And taste it on the tips of my teeth,

So you see why I never get sleep, yeah,

Yeah, you see why I never get sleep,

Oh, so you see why I never get sleep.

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

At least I am fortunate enough to be able to sleep all day when sleep at night eludes me.... like today.  Today, (despite setting my alarm clock for 2pm - reset to this at 9am, I'd had a little sleep before that,but not much; got up to get ice packs and reset alarm) I woke up, first thought is still always "ouch"; tried to pull myself into the world of consciousness; noticed it was still light outside (I could see a sliver of light above the curtains), reckoned I'd woken up before my alarm went off (a rarity), reached for my phone and it was..... 5pm. Couldn't believe it. Oh well, at least the nights are getting lighter...

They who dream by day are cognizant of many things which escape those who dream only by night. 

~ Edgar Allan Poe 

Retail therapy, scar tissue & persistent spirochetes

First things first. NOTHING can beat a good day of shopping.  Seriously, retail therapy can really cheer you up, make you momentarily forget that you have any kind of problems that this absolutely beautiful bright pink leather bag cannot solve. It's so pink.. such a happy colour, of course I'm going to be happy using that bag... Sold! And this dress. Oooooh. Pretty maxi dress. On sale! Even better, Big smiles. No problems.... well except that I can't try it on because that's way too complicated so I'll just kind of tie it to myself on top of my clothes (are people looking... oops). Yup, looks like it'll fit.  I do, of course, carry it half way around Bloomingdales draped over my (good) shoulder to free up my hand to examine every other thing that might be better than this one but the dress wins.  It is pretty perfect and I get a further discount too - sold! Happy shopper. 

So that was today. Definitely relished the retail therapy - and with no guilt attached, I still had some gift cards and money from my birthday to spend.  Apart from the shopping, Mum and I had a lovely, very relaxed day browsing the mall and having dinner out - a really tasty brushetta pizza with balsamic pesto and arugula and a chicken, strawberry & goat's cheese salad in Nordstrom Cafe.

Aside from the retail therapy, there really was the Day Out of the House therapy too!! After last week, it was very much needed.


Last Tuesday I was being good and doing my exercises at home when it felt like something ripped underneath my scapula. I collapsed in tears and couldn't stop sobbing.  I did not know what had happened nor did Mum but she was very quickly getting my percocet, muscle relaxants  and anti-nauseas thrown down my throat and getting me back on to my ice machine.  And that is where I stayed until bed time (more drugs) and then I slept.

At physio the next day I explained what had happened, it was still incredibly sore and I didn't really know what was going on with it.  About a quarter of the way into the session I tried to do some of my normal exercises and I collapsed on the bed crying... again.  I just couldn't do it.  Angelo gave me extra ice and STEM time and said I had to rest for a couple of days.

I rested and iced and did some very small exercises very carefully over the weekend. (Although I still cried a bit.) On Monday, Angelo spoke to Aaron in Kentucky who is my contact there.  Aaron said that it definitely sounds as if I broke up a good amount of scar tissue.  He said it happens, it can be horrendously painful.  He told Angelo that when that happens, at this point, their main concerns are their patients' mental states!! (Yes. Admittedly, I was going a bit crazy.... please tell me I've not done more damage... please tell me I haven't broken it..... waaaahhhh!!) Their conversation was a good one.  It was very reassuring to hear that I have broken up scar tissue, that they see it happen in other patients too, it is an incredibly painful thing to deal with, but in the long run, it is good to free it up for potential movement.

Aaron also told Angelo that my bone pain is still normal at this stage too.  Angelo felt that in his experience most surgeries involving bone would not cause the pain I still have.  But Aaron said that with the amount of drilling I had done to my bone, they expect the pain to be around up until 16 weeks. Plus, they've never done the surgery on a fractured scapula before, so that might change things.  I'm at 12 weeks now.  It would not surprise me if those goalposts move again when I get to 16 weeks!!  Every time they've said, the pain will be bad for 48 hours, then, the pain will be bad for 3-4 weeks; then, the pain will be bad up to 8 weeks; then to 12 weeks; now to 16 weeks; then...??  It does get a little less each time, but it is still close to unbearable at various times.

The past couple of days things have begun to calm down after last week.  Apparently scar tissue has a lot of nerve endings and they don't really like being ripped apart inside the body so they.... ummm, protest a lot.  Basically I felt like my shoulder was on fire but it is calming down and hopefully I can take a step forward again this week.

I also saw my Lyme doctor this week as I've had a resurgence of Lyme symptoms since my surgery which is pretty common, apparently.  Basically if the bugs are still there, they're still going to attack and a weak body is like hunting season for spirochetes!  For the next two weeks I have doubled my abx doses and increased my herbal anti-microbial doses and then in two weeks I go back to Dr S and he is going to add in another abx.  I do feel better that we can attack this aggressively, but I know the side effects of the drugs and the herx reactions produced by killing the spirochetes will probably make me feel even worse before I get better.However, it has to be done and I will get through it. Especially with some more retail therapy I think.... ;-)

I think this quote will have meaning for lots of you, I really think it's spot on.

6 weeks, making progress

(I actually wrote this on Tuesday 10th April, but the website wouldn't upload it)

Today marks 6 weeks since my surgery which is (apparently) an important mark.  It means I have had time to heal and can now move on to more vigorous physiotherapy without worrying about doing damage to the repair.  This pretty much means the physio has licence to torture me!!

I saw Dr K in Lexington last Friday and he seemed pleased with the way everything is progressing.  He basically told me how I was feeling, where it was sore and tight and why, which was very reassuring and good to know that everything is exactly as he's expecting.  He said there are two factors, one is to deal with the weak, tight muscles and the other is to to get the brain to recognise I have these muscles again.  Basically after not being able to use the muscles for 10 months, the neuromuscular connections have to be rebuilt.  He said it's like the "thinking brain" says "raise the arm" and the "acting brain" goes "huh"?

The trainer in Lexington gave me some exercises to do and really made me work.  I basically rolled a ball about with my hand (or tried to) and moved a towel about a mirror (again, tried to) and then felt like I'd run a marathon.  I really can't believe how much effort and energy it takes just to do a few tiny exercises.  I have to concentrate so hard on every movement to get my arm to do what I want it to! They told me that it's really important I get it moving now so I can make my recovery faster.  If I do well, I am looking at 5 months, if I don't get it moving now it might take up to 12 months - motivation to torture myself!  

They did also tell me that they have never seen this muscle detachment along with a fracture before and bone involvement usually makes things take a bit longer.  The specialist in Philly who sent me to Kentucky said Dr K was pretty much the only doctor in the world doing scapular muscle reattachment surgery.  A sports doc I saw at home said he wasn't aware of anyone in the UK doing it and that Dr K was known worldwide for his surgical technique.  (And Google doesn't know anyone else doing it either!) This means that I am the only person to have had scapular muscles reattached to a fractured (although now healed) scapula!!

The worst pain I still have is to the right of my scar, just to the right edge (lateral border) of my scapula, it still feels bruised and swollen and they told me that's my infraspinatus which is the muscle they had to "get out of the way" so the drill could get to the bone. No wonder it hurts!  To break up the scar tissue I have to get a golf ball and press it between my shoulder and the wall and then roll it about for a few minutes.  OUCH!! 

So the golf ball makes me want to cry, rolling the ball on the table makes me feel sick and then "washing" the wall with a towel brings on the blackness.  Mum reached me with a chair just in time at physio on Monday - I almost hit the floor!

It is definitely time to muster as much grit and determination as I can...

"A journey of a thousand miles begins with a single step."

             ~ Lao Tzu

18 Staples

Two weeks ago today I had my surgery.  The whole thing seems rather surreal - that we drove 600 miles, I had my shoulder fixed, then we drove 600 miles back.  It just seems a bit like a strange dream.  

I got my staples removed on Friday - 18 of them and I think once it heals I am going to have a pretty impressive scar!  I'm not really sure about posting this photo... Mum took it for me so I could see it... but there's a bit of me feels it is worth showing off!! So here is my incision before the staples were removed:

I am told it looks good and I am healing nicely.  I think it's a little Frankenstein-esque in this photo so I will just take their word for it!