Perfectly Imperfect

November mindfulness: Day 4 - 'Perfectly imperfect'

Taken from my instagram post:

#mindfulnovember  #perfectlyimperfect  #day4  #mindfulness  #scar  #18staples  #scapularsurgery #scapularmuscledetachment  #shouldersurgery  #myscarmystory  #notoplasticsurgery  #bodyshaming  #lovetheskinyourein  #blogger  #outofthelymelight 

It wasn't difficult to think about what 'perfectly imperfect' made me think of - my scar.... obviously! Although this isn't exactly what I envisioned writing...

Scars are my battle wounds. From injury to surgeries & beyond, they are part of me; they remind me how strong I can be - they are a sign of strength and healing.  I blog to spread awareness of a rare injury; to show anyone can rise to life's challenges; to tell MY story; and hopefully, to help someone else.  Recently I posted images (see picture 4 below) following cupping treatment showing my scar, plus swelling & bruising, as well as a skin reaction to my PICC line dressing adhesive (for Lyme disease IV treatment).   

A plastic surgeon commented under my photo - maybe I would be interested in her 'regime' (which from her instagram page seems to be plastic surgery and botox). My first thought was why is a random doctor commenting on this? Occasionally I've had comments or mesages/ emails specific to my surgery (it remains, over 5 years later, relatively unknown in the world of medicine), but this was different.  I did look on her instagram page - it's filled with very stereotypical photographs and commentaries of facelifts, botox and 'we can 'fix' you'-type stuff. I did not look further on her website, as suggested - I'm not interested, but the bigger implication was: this imperfection could be fixed. 

Not something I have ever thought about, looked for, inquired about, written about, etc.

I'll admit this hit hard.  I have never hesitated in sharing my photos, or talking about my surgery; and I have built relationships and networks with other patients who have contacted me over the past few years. Suddenly I glimpsed it from a different perspective. Why? Does this doctor think I should hide my scars? Is it appropriate for doctors to target other women (or anyone?!) on social media?  Is it ethical? Is 'scar shaming' a thing I've naively avoided thus far? In that initial moment I was stunned: shocked, then quickly I felt angry.  Have I been cyberbullied by a doctor?  I am not ashamed - I blog and post photos of the good, the bad, and the ugly. Reality.  I don't intend to change that.   

2012-2013
Pre-surgery -> healing over 1 year
(Bottom left, 2014, pre-surgery number 2)

October 2017: post-cupping therapy

October 2017: 1 day after cupping therapy
Can you see my scar?
Can you see my symmetrical scapulae?
I.e. the visible evidence of successful surgery...

Collage from instagram with plastic surgeon's 'innocuous' comment

It's not blatantly nasty, but after looking at the instagram page (with no interest in browsing her website), it's very difficult to draw a different conclusion.  I decided not to reply.  Now, my instagram post, and this expanded blog post is my reply.  It's not a reply to the doctor, it's my reply to anyone with the mindset that any part of the body is imperfect and needs to be 'fixed'.

I was just going to ignore it until I stumbled across this Buzzfeed article about actress Sarah Hyland ('Haley' from Modern Family) the following week. She has a health issue and a magazine published an article speculating she had plastic surgery.  Buzzfeed relayed her response (via twitter) to the magazine where she (rightly) raged at doctors speculating over her 'potential surgeries' and made clear the 'changes to her face' they were commenting on (there's another controversial topic on its own.... how about people just stop doing that?) were the result of "life saving medication".  (I don't usually read celebrity news/ gossip, but apparently she has suffered with kidney disease since childhood and it was not 'new information'.)  The timing was serendipitous.

I may not be famous, I may not have much 'reach' with my comments or my blog; but I think it is every bit as important for anyone, whether targeted publicly or quietly, like this, to stand up and say this is NOT OK.  If one person reads this and takes away that message, then it is worth saying. 

And, FYI, my scar looks fucking awesome. My PT says it looks just like a plastic surgeon did it. 😏

31 Dec 2014: Shoulder surgery 2 - capsular release

March 2012:  <2 weeks post surgery

End of March 2012: 1 month post-surgery

Incision healing progress March 2012 -> March 2013

   "The scar meant that I was stronger than 

what had tried to hurt me." 

~ Anaïs Nin ~

Four years ago...

Four years ago on this day...

My first blog post of 2016 (actually my first post for quite a while) has been prompted by Facebook's 'see your memories' gadget that popped up on my feed earlier today.

I'm very aware this weekend marks 4 years since my first surgery. I have been mentally composing a post, ready to return to my neglected blog. It still feels like I need to recognise it - it's still not 'over' so there is still a rawness of sorts attached to the date. But today's caught me a little early, not quite off-guard, but not far from it. 

A lot has happened in the past few months that I haven't blogged about. I'm not even sure I know how to yet, but looking at my Facebook 'memories' today (did I mention I really hate that thing?! It seems programmed to pick the best *sarcasm* days to 'remind' me about....)

So.... 4 years ago today, these are my 'memories' - indelibly marked in my mind, but brought into glaring reality when staring out at me from my phone. Today, this is what I saw:

We were indeed in Lexington, Kentucky 12(ish) hours later, but little did I know what lay ahead... 

Sometimes, I think I am actually so very grateful for that blissful ignorance. There is so much we can cope with when we have to, I think definitely more than we can really imagine. When something big; something life-changing; something massively challenging happens, there are really two options - figure out how to deal with it, or don't. In other words, you beat it, or it beats you. 

That doesn't necessarily mean you can storm your way through life, stomping down every difficulty thrown at you as if you are superwoman; but it does mean you are in control of how you react to that challenge, looking at the bigger picture.  Dealing with it might still involve crying, screaming, yelling, sleeping, not sleeping -  generally struggling to figure things out; and 'figuring things out' doesn't necessarily involve a eureka moment, an epiphany that provides a working solution that you can just go with. Sometimes it means you just keep trying to figure things out, finding little solutions day by day until a big solution comes along.... or doesn't - sometimes day by day is the solution, and that doesn't mean you're losing, I have learned.  It pretty much means you're human.

(Official video courtesy of YouTube; not mine)

Reading back over that blogpost from 2012, it just feels so naive,  so unsuspecting of what was to come. I remember that feeling. It seemed like so long, from the previous June, and such a battle to actually get to that point - it was a battle!  I just had no idea how long the battle would last. I still don't.  But I genuinely was excited about the surgery. I genuinely thought it was going to fix everything. 

Then last year (apparently) I posted this, another link to this blog:

And it is still true. In a bittersweet way (the beauty of the words being the sweet part), this 'memory' is the one that stood out most. Not really to share on Facebook (hey, what an awesome time I was having a year ago.... because, really, that's supposed to be the point, isn't it? Facebook.... otherwise known as 'my perfect life'... surely we're all over that now?! We know better - right?!).  

Just the words.... they captured so perfectly how I felt, beaten and battered by things entirely outwith my control. Little did I know one year on, that list would have lengthened and I would still feel these words, as if they are living deep within me, flowing through me, as control remains nothing but an illusion; entirely out of my reach.

So, yeah, that all kind of hit me hard today. I was mentally preparing for the weekend - it's silly in a way, it was an arbitrary date, it really just marks another day passing, but at the same time, it does hold significance. I can think about that then.... 

But today, four years ago, we made our FIRST trip to Lexington, full of hope and optimism; and I guess, I need to search for that hope and optimism, and hope that somewhere deep inside, it hides, still there, ready to surface again. And I also need to remember I'm only human - and there are many ways to deal with challenges, and they're all ok, there are no magic solutions. 

 Hope is the thing with feathers 
That perches in the soul
And sings the tune without the words
And never stops at all
~ Emily Dickinson ~

Night night

I keep falling down the rabbit hole that is otherwise known as Pinterest....

I was searching for a little bit of inspiration, something funny, motivational - simple and quick because I've missed a few days posting due to increased pain (The Walk had some after effects, combined with a couple of other factors, my pain has been pretty bad). And I really have so many thoughts all interlinked that it seemed writing them down and separating them would be better left for another day.  So, determined to get to sleep earlier (failed) and to post something - I'm not doing too well with the attempt to write every day in January - I turned to Pinterest again, searching for something that clicked with me - I wasn't feeling inspired by anything - searching probably took longer than the writing would have.

Then my laptop fell backwards and I attempted to stop it in case it fell off my bed and since my right hand was on it, I tried to stop it with that, realised it's pretty useless and has zero strength, got my finger jammed right in at the hinges without managing to stop it from closing upside down and putting the computer to sleep (it closed THAT tight on my finger - THAT tight, I am amazed it is not PURPLE yet).  Then I found this and it clicked.... the perfect post for right now:

Sometimes, it's really the only option!  Night night from the insomniac.  Tomorrow is another day!

Don't slip

Sometimes the wisdom of tea bag tag philosophies is questionable....

Bed-time medications say otherwise!

While I completely disagree -  in my case 'slipping with my feet' was definitely a very very bad thing, and I am sure there are MANY people who are agreeing with me here, after suffering the consequences of a 'slip' or fall; I do get the point. This one sounds more like something that has come out of a fortune cookie than my usual tea bag tag philosophies!

I will agree 100% that 'slipping with your tongue' can be highly damaging and upsetting at times too; but (especially right now - and from past experience), 'slipping with my feet' is NOT a good option either!

Moral of the tea bag tag - just don't slip!

For people with 'invisible illnesses' - who put in (at least) twice the effort getting ready and at least five times the effort just doing 'normal' things; it can be difficult when people, even well-intentioned, say things like "but you look really good" or "what do you do all day?"  This often feels judgmental, even if it is not meant as such and it can make us feel as if we have to defend ourselves to 'prove' that even as we sit and have coffee, or dinner, and chat, that it is always a case of 'mind over matter' - with a limit on the time we can 'survive' it.  The intensity of the invisible icy-burning metal rods being pushed into my shoulder like a torturous version of kerplunk doesn't go away when I socialise, I just have to ignore them as much as possible, and (when possible) socialise on days where they are a little less aggressive; the sparkling lights in the room, and the nausea that accompanies them have become almost normal - the nausea is kept mainly under control with tablets and the sparkling lights are now ok until they get darker - but sometimes it makes it harder to concentrate and take everything in as normal because of the mental energy required to suppress the urge to lie down in a quiet place and instead focus on the conversation. 

Sometimes I almost wish there could be some sort of running commentary for an hour - just to  explain what's going on in my body... maybe even 10 minutes would show how many things I'm actually dealing with all at the same time.  It might seem like I'm just sitting having a conversation, but I can also be assessing how nauseated I feel, and working out when I last took a tablet and when the best time to take one so I can eat dinner is; thinking about whether applying my pain cream, or a lidocaine patch would address the burning feeling that radiates from under my scapula and feels like it could burst out of my chest; the funny movements - neck stretching, arm extending and twisting - are because my hand is going numb and I'm attempting to stretch out the nerves to 'decompress' them and hopefully relieve the burning, icy numbness in my hand; I'm frequently adjusting my position, trying to get comfortable on chairs designed for people at least 2 inches taller than me (really!! my feet never touch the ground, it makes for very uncomfortable pulling on muscles); and trying to make sure I move when I feel spasms starting in my neck so they don't transform into a horrendous headache.  

On top of all the constant assessing, working out, and attempting to relieve symptoms, I am working hard to suppress the pain for a while, long enough to be social - considering different ways to ignore it, or ease it - if possible.  Going out anywhere is like going out with a baby. I have to make sure I have my meds, my TENS machine, my numbing patches, water; I need to have a plan so that I know how many tablets to bring - I don't like carrying loads with me, but I need to have enough to cover the planned time out, plus an extra dose (always a 'just in case' plan); I also have to consider how warm or cold I'll be - I can't carry a jacket with me, so if I don't need to wear it, I'll just make sure it's in the car, but if I DO get cold, I start to get shaky and then my pain increases, so I have to make sure I have something warm, but light, because if I'm walking about and it's too heavy, I'll get sorer faster (this usually just amounts in throwing half my wardrobe in the back of the car to cover all eventualities); and then decide whether I need my sling; if I have pockets, will they be enough, or should I also wear an infinity scarf....? (Again, usually the answer is just to make sure it's all in the car!)  So while I love socialising, going out for dinner, sitting and chatting - my brain has to constantly evaluate and balance the pain it feels constantly, decide how I can mediate it, and hide all of that while I also attempt to pretend everything is ok and I am having a good time......... and it's not that I'm NOT having a good time - I love spending time with my friends and family - it's just exhausting.

I found this on someone's 'chronic pain' board on Pinterest the other day, and it made me think about all that in more detail, and it makes sense in my head, when I split it up like that, why I DO get so exhausted when I do anything..... my mind never gets a rest (and that's on top of its normal never takes a rest!)

And even writing that, attempting to explain it on here (to myself as much as anyone who reads it); it feels very much like complaining - which is why, ordinarily, every day I do all that silently.  I don't want to be the person who complains all the time - and I try very hard not to complain, I don't think it achieves anything.  It can be difficult to distinguish between complaining and explaining, if the circumstances are wrong.  Since my blog is supposed to share the honest truth about dealing with Lyme disease, and dealing with my shoulder recovery, hopefully that all seems more like an explanation than a big long moan!

Going through Pinterest boards that deal with these issues is interesting to me because there are so many graphics, like the one above, and others I've posted, that help to visually explain what is going on.  In a way, it's almost comforting to see that so many people dealing with pain and/or invisible illnesses post the same, or similar, graphics.  I'm sure we all wish we weren't paying any attention to them, but the idea that it is 'normal' within all this abnormality to feel a certain way brings with it a strange kind of comfort.

Be kind, for everyone you meet is fighting a harder battle

   ~ Plato

2014: Another chapter......

Last January I decided to come up with something positive to focus on and to write a blog post a day to get me through the month.  Let's face it (for those of us in the Northern hemisphere anyway), January is a pretty bleak time of year.  The days are short and dark, the weather is pretty dismal (especially in Scotland) and all the build-up and excitement of Xmas and New Year dissipates instantly.  

For me, this January marks 9 years since I first got ill with Lyme disease, and although I have made massive strides regarding Lyme, I still have symptoms, and no answers - because nobody knows the answers.  This January also marks 2 years since I was diagnosed with detached scapular muscles, and while that story certainly has many other facets and milestones (bad and good - plenty to talk about!), I think it's the whole new year-same old story that makes it seem more significant - probably combined with the fact that I was quite convinced, this time two years ago, I would be in an entirely different place than I am right now, physically and metaphorically.  But ultimately, it is what it is, and life is what you make it, so I am attempting to drum up some positive January energy again this year and focus on some good things - and I do feel a little lucky.... I'm spending most of the month with my parents in Pennsylvania, (currently, excitedly awaiting a snowstorm) and missing the dreich Scottish weather of the moment.

After my new year (stolen) photo, I thought I would go with the theme of life as a story and pick some words, quotes, thoughts or images each day this month; some inspired by the little sayings on my teabags I use (I drink rather a lot of herbal tea - some of my favourite ones have little philosophies on them, so I've been saving them).  It fits perfectly with my love of words, books, reading and writing and I'm hoping it might inspire me to manage a bit more reading and writing this year too. (I'm sure my dad would have some comment about my love of talking to throw in with that....)

So this January for me is going to be about stories and journeys, through words - those magical little sounds we create that make it possible for an idea to jump from our mind into some else's....


To start off the first of the month, I'm 'setting the scene' - here is a quote from novelist Dean Koontz which applies perfectly:

And hopefully, I can change my January story into something positive....... we could all do with a little positivity in January and start off the year with a happy journey!

So, to everyone, cheers for the new year, blank pages, another chapter; and here's to achieving "metanoia" and having a wonderful 2014!

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

Ouch

My surgery yesterday went well.  Dr K found pretty much what he expected and was able to reattach the lower trapezius and the rhomboids to the scapula.  He said my trapezius was detached and "flapping" and my rhomboids were partially detached but in multiple areas.  He thinks the worst of my pain was probably coming from the fact that the rhomboids were still attached in some areas and were pulling.


The last 24 hours have not been good.  I am in a lot of pain, the drugs really don't feel like they are helping enough!  Today my Mum called the surgery centre just to check my level of pain was normal.  They said this procedure is very painful, Dr K did "quite a bit of work" inside me, and the 48 hours following the surgery are very tough....... so there is nothing else to do but tough it out.  I really do feel like someone has cut up my muscles and bone and pulled them all back together again.


The whole process yesterday was very smooth and I was very lucky to have fantastic nurses and doctors dealing with everything.  Everyone was so nice.  I had a very short period of time when I felt very nervous after the nurse put the IV in my hand (it was sore) and it all became very real.  However pretty soon after that they gave me an IV pre-op drug that worked very quickly and made me laugh hysterically!  They kept asking me questions to make sure I was ok but I couldn't make the words come out my mouth because of the drugs so I just kept laughing.  When I eventually managed to say my name they then asked me what procedure I was having and I had to say "scapular muscle reattachment" which was impossible and made me laugh even more!!


Then they took me through to the OR, chatted while the anaesthetist gave me gas and the next thing I remember is waking up in recovery with the hiccups which kind of went "hic.... ouch... hic.... ouch.....hic.....ouch..."  The procedure itself took about an hour then I was in recovery for about two and a half hours and then back to the hotel.  I have a lidocaine pump-thing that goes into my wound to numb it (it really doesn't feel numb but apparently it would be even sorer without it), various painkillers, an anti-nausea patch, and a cold therapy pack that pumps icy water through a pack that fits on to my shoulder.


In recovery the nurse told me this is one of the most painful procedures they do and she has seen grown men cry because of it. It has made me cry with pain but it should ease after 48 hours... and I am just over half way there at the moment.


So it's a really tough couple of days and then it is going to be a tough month with my arm immobilized and then hard work doing the physiotherapy but it will all be worth it.  And when I asked Dr K if he thought I'd ever do a handstand again he said he has a couple of patients who are now doing weights so there is a possibility I will be able to handstand again one day.  Great news!!