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.
   

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." 
~ 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.

😴

Comfortable
#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.


'Nourished'
#herbaltea #organicchocolate #cactusgarden #breathe #ifyoucandreamityoucandoit #butterlies
#justwhenthecaterpillarthoughttheworldwasoveritbecameabutterfly
#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

Hallowe'en

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:


Scene:
'HARVEST'
Local & organic 'farm-to-table restaurant
LONG ANTICIPATED FIRST VISIT 
(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!


PSYCHIC MOTHER
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 know...plus 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....!









Friday, August 4, 2017

Simple things...

This year I started off talking about honesty.  I had nose-dived into the deep, dark rabbit hole of a Lyme disease relapse. I want to paint a genuine picture of what that really means - recently, a few articles followed celebrities announcing they had Lyme disease and called it a "fad disease" (or similar). It is not. I haven't written as much as I would have liked, to date, but hopefully each post, shared with honesty and a little trepidation, dispels that idea,  way before it enters any cultural psyche. Nobody with Lyme borreliosis would wish this disease on their worst enemy, let alone view it as 'fashionable'.

I started feeling the too-familiar, overwhelming, systemic fatigue; intolerable levels of pain, in my shoulder and throughout my body; a lot of 'brain fog'; and an increasing inability to do very much at all. Simple necessities - like a shower - left me completely floored.  It felt like I'd erased years of hard work and treatment.

Since I came back to the US and restarted specialist treatment - Lyme and shoulder PT - I have felt overall more optimistic.  I have wonderful physical therapists and we have finally started to see tiny steps of improvement (even more importantly, they say 'we' & use words like 'team' - & they actually talk to each other.... how sad that is so remarkable). 

I have a one-of-a-kind Lyme doctor, also a 'primary care' doctor (like a GP, but who 100% lives up to the better label!) who genuinely cares for me, covering every aspect of my health - and essentially, is really making inroads with tackling my Lyme relapse.

But, as I've said before - it's hard. Managing a PICC line (peripherally inserted central catheter - it goes into my arm and sits inside veins, eventually resting close to my heart so my medication gets 'right in there') requires careful care.


From Wikipedia 

 I have 2 'tubes' coming from my line and they need to be flushed with saline and heparin twice a day; plus I have to infuse with my IV medication every night, and keep on top of oral meds as well. Obviously it's critically important to keep it clean, dry and carefully wrapped.



My nurse took this for me during a dressing change.
Ordinarily, it's always covered!

Lyme treatment is pretty brutal - as I've mentioned elsewhere, and in the 'Lyme pages' on here. Details for another post. 


Invisible illness?


On top of that, I have physiotherapy three times a week - we have to be careful with the PICC, which is in my 'good' arm; and focus on my right (injured) side.  We're still working on connecting my brain with the muscles around my scapula and getting them to work. Since I came back, the positive results have really helped me push forward.  Waiting 5 years for some positive results is a really long time! So those positive baby steps have felt like giant leaps.


On a good day:
Gravity... stretching lats while supporting body;
 this pops my ribs back into place too;
 aim is hand on the floor -'above my head'.
Physio's aim is:
 1) to hold me up & not let me push it too much
2) to NEVER let me attempt to backwalkover out of this
because the good hand does touch the floor now
Me: "I'm sure gravity will just carry me over..."
 Him: "NOPE" *sits me back up*


(For perspective: 
Once, this was barely a stretch for me;
Now, this is the best range of motion
 in my arm for 6 years -still assisted.)


But this past week, I plateaued. Right from the beginning,  they told me this would be the normal pattern.... except it wasn't. I didn't plateau so much as fall right back off the cliff and start climbing from the bottom again.  So many unknown issues were discovered following that first surgery. 

So, really, this is good. It's FANTASTIC!  Finally, I am doing what they expected.... I improved a little, and I've stayed there - no tumbling back down the cliff.

BUT - no baby steps this week AND it's been a horrible Lyme week, with lots of herxing and general 'I want to crawl under the covers and come out when it's over' days. It turns out that's not a good combo, apparently...

I think 'meltdown' was the word my Dad used... 

Thanks Dad.

 Most of the time (like 99%) my Mum is my chauffeur, coffee buddy, shopping buddy, pedicure buddy; my chef, nurse, pharmacist.... all round carer & companion.  (When she gets old, I feel like the routine is already established, we'll just switch roles. Although hopefully there is A LOT of living for us both before that happens!! *EDIT: she read this & didn't know whether to laugh or cry....!)

But today she had a migraine, and my Dad was home in the afternoon... (he's delighted about that, I bet).  I had no appointments today; I had a 'to do' list - not a general 'I hope to do this soon' list, an actual 'wash my hair' - because I'm not even going to write how long it's been since I did that - and tidy up just a little and some other very necessary *simple things*. 

Not that simple. I struck out at number 1 (and so the 'meltdown' (this is not my word!) took over. The 'I can't do anything; I hate that 'do nothing' is an actual 'to do' thing because it has to be.... I can't do aaaaaaaanythiiiing......' kind of .... um, ok, meltdown, I suppose.  

Ultimately, with the male need to *do something* my dad said he would wash my hair (my skin is sensitive to the adhesives - this sensitive skin is another fantastic new side effect of the new Lyme meds *urgh* -  so I have a healing sore just under the PICC line and I can't stick the adhesive plaster over it. The insertion site us covered, and it's bandaged instead right now; but - while the full adhesive dressing isn't waterproof, it's not fabric - right now I'm reluctant to sit in a bath and get condensation on my skin/ the fabric dressing etc.). 

 When I was severely ill, before I even knew about Lyme disease, I used to get my hair washed over the kithen sink, lying on the worktop...

... in a different kitchen. I made it downstairs to see my dad setting up his 'station':


Creative home hairdressing :)

A gym/ thick yoga mat over the hob, so I could lie on it, and also because I'd wailed something about the hard surface and a sore shoulder blade - it was to make the worktop "softer". So it turns out even the simple things can make you smile on a really, really, rubbish day. And more amazingly,  my dad actually embraced some creative thinking (that was NOT football related).

And while he played hairdresser, 'supermum' had woken up and was ticking off the 'tidy up' part for me. So, with clean, wet hair, and puffy eyes, I collapsed back into bed, in a tidier room, where I'd quite honestly like to say I'm resolving not to move for a day or two - until this is over - but I've got physio tomorrow afternoon.... yay!

😞


I'm not sure who this quote is attributed to, but I'm attributing it to my mum here, because she says it constantly:


"This too, shall pass"

*EDIT Physio was kind of tough... then I got a migraine from hell. In between, I was up, out, dressed, and so (always good to take advantage of that!) Mum & I had coffee & went for pedicures - it's always nice to do something 'normal'! However, as I collapsed into bed,  and she later helped me with my infusion, she said, "This too, shall pass".... have you been reading my blog? "Recently? A new post? No..."
Too funny.