Wednesday, February 28, 2018

Rare disease day... the perfect date!

Today (Feb 28th) is Rare Disease Day - it also happens to be exactly 6 years ago since I had my scapular muscle reattachment surgery (very rare! I was the 270th person in the world to have the surgery, performed by the surgeon who created it & was the only surgeon performing it in 2012). It was the first step on what is still a long journey of rehab & recovery.

(N.B. I will try to fix these photos at some point, my photo editing programme on my tablet kept stopping; they do show my dimmed screen.... explained below. Not deliberate!)

'Shoulder stuff'

I write this as I am infusing IV antibiotics into the PICC line I've now had for 9 months to treat Lyme Disease - another rare disease... or under-diagnosed, even Google is a bit confused here: 


Newest Lyme treatment - hard-going, but I think I am slowly...
tentatively... making some good progress

In the past 6 years, following my shoulder surgery, as we 'peeled back the layers of the onion'; I've seen many doctors, surgeons, physiotherapists &  other medical practitioners. I've been given various other rare diagnoses including Thoracic Outlet Syndrome & Complex Regional Pain Syndrome (CRPS/ RSD).  All from a simple slip on the stairs, 'saving myself' as my body weight hung and torqued from one arm - my once-strong arms, wrecked by several years of severe illness, combined with still-hyperflexible shoulders was a bad combination. On my list of identified injuries (suspected incomplete), some chronic or ongoing, others transient: 'inferior shoulder dislocation' (0.5% of shoulder dislocations) - my arm stuck up in the air, still holding the railing about 3 inches higher than I can actually reach. One physiotherapist summed it up best: "if you didn't have skin, you'd have ripped your arm off."  Some other injuries that occurred in that split second: brachial plexopathy & 'overstretching' injuries to my entire upper right side nerve network; various muscle tears, pulls & strains; other soft tissue damage, including damage to my fascia; & bone injuries, including a scapular fracture (they account for <5% of fractures, just FYI). So dear every doctor I may see in my life - if you hear hooves, think freaking unicorn!!

Photo excuse: sometimes being ill means being stuck in bed.
(I did not seek this out for this post!! I did play with silly Facebook filters. 😜)

Just to reinforce this point, in case it needed it, I've started to sweat in colour... neon yellow and light orange, specifically. I'm pretty sure it's linked with my nerve injury, which can cause very localized sweating; although initially I guessed it was perhaps linked to medication - nope! When I eventually decided to ask another crazy question neither my mum (in her professional capacity), my doctor, nor my PT had ever heard of it.  Although the response now is 'of course you probably have it... if it's a thing' ... And guess what?! It is. It has a name: 'chromhydrosis'  (the linguist in me would like another vowel in there).  I hadn't even turned to Google, it seemed so ridiculous; a PT student searched for it and my PT laughed (maybe with kind exasperation?!) as he read "very rare, incidence unknown". So, UNICORN!!

Added to the messy shoulder + Lyme mix has been post-concussion syndrome (/'minor traumatic brain injury' - 'minor' refers only to the amount of time spent unconscious /disoriented); a delayed diagnosis, but caused by my car accident 2+ years ago when my tyre blew out at 70mph and my car did an actual side somersault. Isn't my karma fantastic?! Urgh!  I haven't really talked much about that. I don't think I've written about it on here at all.  It's hard to think about, honestly; but getting some answers I didn't know I was looking for, and realising things I didn't know I'd been thinking (/worried) about has taken up a large part of the past few months.  Essentially I spent almost 2 years just trying to 'power through' a brain injury.  The post-concussion treatment I just started last November has been incredibly challenging, but it made me realise I have many head injury symptoms I hadn't even realised were symptoms - and they've been really severely affecting my life. Knowing they can be treated, and seeing some good improvements in some areas already has actually brought me a lot of relief. Not recognising symptoms in yourself is actually a symptom - I think that is a perfect definition of 'headfuck' - in every way!

It's one (huge) reason I've struggled to blog much... or to read, write, or use my laptop - my 'screentime' has been limited to a smaller tablet screen, dimmed, with an app that removes blue light to prevent my headaches hitting the highest intensity. I'm seeing little signs of improvement, so hopefully I can keep that going and get back to writing again.

 Additionally, the accident sparked my major Lyme relapse (not unusual); this really blurred the lines a lot between head injury symptoms, and fatigue & headaches that Lyme disease causes.  There is a lot I need to untangle - physically and figuratively.

Ultimately, I am making progress. I'm extremely grateful for the help & support I have, and access to treatment that is working. I'm grateful for the doctors & medics who think outside the box and look for the crazy things when nothing else makes sense. Progress seems slow, but when I think of how things were a year ago, 2 years ago, 6 years ago... I am still moving forward, I am still working hard, and that is all anyone can ever do.

Real progress!
Working a lot on flexibility,  lower body strength,
and increasing my shoulder & arm movements with supported movement 

There are many types of 'rare disease' & they suffer from reduced funding & awareness because they are rare. Diagnosis takes longer, and treatment is often trial and error - I am well aware!  The majority of illnesses are 'invisible illnesses' (or can be hidden); please, where you can, be kind, choose to listen to someone & believe them, even if they 'don't look ill'; support is sometimes the best thing you can offer a friend.

Thursday, November 9, 2017

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.

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." 
~ AnaΓ―s Nin ~

Sunday, November 5, 2017

November Mindfulness: Comfortable

November Mindfulness: Day 3 'Comfortable'

I think this really speaks for itself, but for a brief explanation of the most comfortable 'bed nest' in the world:

Back/periscapular muscles spasm causing horrible, lasting pain (talking over a week of heightened pain here) & a very unhappy body...

Nurse: Don't sleep on that arm [with the PICC line in it]
Physio: Don't sleep on that shoulder if it's compressing nerves
Body: .............. OUCH! Can't sleep.... 😱!!!!

Insomnia driven brain = best creative ideas EVER.


#bednest #pillowfort #icepacks

I literally put the cushion back on the chair 3 days in a row and ended up hauling it back to my bed in the middle of the night again.  It's been back on the chair for several days now and my bed no longer looks like a nest.  Every night since, I have stared at it and wondered if I'd be sleeping already if it was back on my bed....

"Insomnia is my greatest inspiration."

~ Jon Stewart ~

November Mindfulness: Nourished

November Mindfulness: Day 2 'Nourished'

Unsurprisingly, I'm playing catch up on day 2.... I took the photos, planned the posts... not sure I have a reasonable excuse for not even uploading a photo!

'Nourished' did make me think a little bit more deeply about what true nourishment means just now. Yes, I eat well (even with the 'good' dark, organic, low sugar chocolate... mostly); I can't drink any alcohol because it would prevent antibiotics from working; I drink loads of water & herbal teas; I take various supplements - some antimicrobial, or ones that work in some way to complement the antimicrobial action of medications/ herbs, and others to boost antioxidants and aid in detoxing my body as it (hopefully) is so exhausted because it's clearing out nasty, twisted (ha ha... Lyme jokes) spirochetes.  But that didn't really feel like it went very deep - it was too literal, so I think this collage better represents how I 'nourish' myself right now.

#herbaltea #organicchocolate #cactusgarden #breathe #ifyoucandreamityoucandoit #butterlies
#somepursuehappinessotherscreateit #art #myart #arttherapy #flowers #candles

There is tea (green tea, ginger tea, matcha tea, turmeric tea, kava tea, 'breathe deep' tea, 'throat coat' tea, 'bedtime' tea, milk thistle tea, fruity teas, fruity green teas, minty teas.... basically everything except 'real' tea - British and I dislike tea.... I've got the healthy ones though & I think that's what counts here!) - all with the obligatory hipster(hippy?)-but-I-love-it tea bag tags offering a dose of philosophical existentialism a few times a day, and some amazingly tasty coffee-chocolate from our local health food store.... no, my diet's not perfect, but I TRY!!  

More representative of how I 'nourish' (/boost/ motivate/ pick a synonym) myself are all the little things I surround myself with. I like to look around me and feel the little boost I get from these things I've inadvertently collected or created over the years.  I find this in quotes, art, plants (although I fear they might really be struggling for light now the clocks have gone back, unless they can get on board with my personal Lyme-time-zone), books, scented candles, special cards, my piano, (a million) notebooks, paints, pencils, pens, sketchbooks (different from notebooks), colouring books and a variety of my own creations.  Lots of little things that make me smile, make me think, or remind me how much I enjoyed creating them.  Some are clear messages - and perhaps the reason I've sworn at 'cheerful' inanimate objects on the odd occasion; some are things I have spent valuable time and energy (and spoons) creating myself - painting, drawing, planting....  Creativity is truly a form of escapism and is probably where I find mindfulness best.  And even if some objects seem irrationally annoying on bad days, most of the time they serve their purpose and remind me to focus on the positive.

Whatever we plant in our subconscious mind and nourish with repetition and emotion will one day become a reality.

~ Earl Nightingale ~

Wednesday, November 1, 2017

Mindful November

I had this plan to try to really focus on my blog this month. A project, a post a day - something to aim for, however small it may seem. My health seems to be dominating everything right now, and making it a thousand times more difficult to be even the slightest bit productive… or organised, or tidy, or really 'functional' on a daily basis.  It feels like I am either at some form of medical appointment, most often physical therapy; infusing my medications or flushing my PICC line; or sleeping.

I thought taking photographs would be an easier way to set a realistic goal, and then I came across this 'MindfulNovember' on instagram so adding a little bit of guidance and ready-made inspiration seems like a good combo! Plus actively employing some mindfulness everyday has  to be beneficial.

"Mindfulness is to keep our consciousness alive to present reality"    
~ Thich Nhat Hanh ~

Tuesday, October 31, 2017


Not a great time of the year for Lyme. Well, not that there's a good time for Lyme, but....  Hallowe'en is an excellent reminder because it's really just supposed to be FUN. (This year I was Sleeping Beauty. Probably with less 'beauty' and more 'zombie' - although 16 hours sleep might add some points...)  

Also the no sugar* (healthy fuel, healthy body.... we only had a little left over πŸ˜‹) and no alcohol (stops medication working), um, and no energy really take the fun out of it.

... Can I just take a moment to point out I've not had a SINGLE cocktail since May? Not ONE drop of alcohol. Psychic mother even cut short my mental arithmetic in a restaurant as I was attempting to calculate the half life of this really really really really tempting cocktail and whether it would be out of my system by the time I infused my next dose of antibiotics. Imagine:

Local & organic 'farm-to-table restaurant
(Anti-nausea medications perfectly timed -  I was HUNGRY!)

ME: [silently thinking] I could eat almost anything on this menu... so many veggie choices!  Organic cheeses! Wild caught fish!** Grain bowls.... quinoa! Wild rice! This must be how a normal person feels when they could have practically ANYTHING from a menu*...
How do they choose?!
[turns page
oohhhhh, those cocktails sound so good.... green tea with cucumber vodka & lime... I wonder how many units of alcohol in a martini glass here? I could have it tall.... I wonder if antioxidants in green tea cancel anything out? I wonder what the half-life of vodka is... [reach for phone, unlock screen...]

PSYCHIC MOTHER: [barely glances up] Don't bother calculating how long it will take to get a cocktail out your system.... you have blood tests in the morning, they'll still show alcohol.

ME: I was just looking.... 
 [thinks] Damn. Blood tests. Forgot about those. But wait..... HOW DID SHE KNOOOOW??!! 

*Limited diet: general super healthy diet supports treatment; some treatment protocols follow specific diets
**Yes, technically I'm 'pescatarian', but I think it sounds a tad pretentious. And super-extra hipster...

Now THAT'S spooky!

My Dad used to joke to my Mum, "If your mother was a witch...." & trail off

Not sure if he got scared πŸ˜‰ or realized he was saying it about me too...😜
But this photo is just too good....!!

(Don't have to be psychic to guess she's not going to love it as much as I do.)

Back to today.... there's dressing up in elaborate costumes (yourself, house, child, dog... whatever)/ the excuse to dress up or wear crazy make up if you like doing so, but need the excuse! And the million different Pinterest ideas you just HAVE to try one day (mostly baking - with more sugar). None of those is especially 'Lyme-friendly' (it's that 'I need energy' thing).  I didn't even get pumpkin carving this year... putting a hacksaw & 'the sharpest knife I can find' in either hand didn't seem like the best idea... A little decorating, joint effort:

The American 'Happy Halloween'
does puzzle me...

I did binge watch Stranger Things 2, at the weekend, of course, (it's SO good!) because my weekends are for resting right now: "resting enables healing"- not something I usually embrace, but thank you Netflix!  But (no spoilers) while attempting a couple of 'very simple' Pinterest Halloween projects in the garage; there was scratching in the roof space above my head, and the first image that popped into my head was a demogorgon. I mean, not consciously, a good story just stays with you, right?! 

At least I still have 2 arms ;-)

I have to admit, anything I manage to do successfully with my arm (arms.... PICC line has been a bit uncomfortable too, I've had to be extra careful with it) feels like an accomplishment - even wrapping some toilet roll around a football & a mannequin or sticking some sticks through a flower pot & some bin bags! And some creative results... in the dark!

Quite honestly, these were because I was determined not to fall asleep after physio, as napping
 seems to be messing up my sleep. I thought (hoped!) I'd sleep at a 'normal' time if I made myself
 stay awake - of course,  I never learn... didn't work!

 But my Pinterest 'shadow witches' didn't look too bad! (In the dark.)

On my hunt for Halloween quotes - specifically Shakespeare's witches from Macbeth,  I decided I like this one from Tim Burton instead. It feels like it could have many applications and feels more fitting with my blog. I definitely feel like I dress up some (most?!) days - my true self is still in bed, sleeping. Sometimes, especially this year, it feels like my brain stays with it!

"Every day is Halloween, 
isn't it? For some of us..."

~ Tim Burton ~

Friday, October 20, 2017

It's October!

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

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

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

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

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

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

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

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

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

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