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 ~

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 ~

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 ~

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 😋) 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 😉 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 ~

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 😀.... 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....!

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.

June: Plans, PICC lines, & physiotherapy

I did say May was spent forming plans. I really intended to write in more details, but my brain had other ideas - mainly SLEEP.  May was pretty exhausting - filled with medical appointments; balanced by record-breaking snoozing.  Time flies though - especially when you're unconscious 50% of the time!


June saw those plans being put into place, so here is an overview.  Of course, I have more details, but I'm trying not to post a novel here, so details to follow....  I can definitely say that, despite the hellish processes, things are overall more positive than they have felt for a long time.  There is still a long way to go to reach that light at the end of the tunnel, but it's been turned back on again.  I have a supportive medical team around me - PLANS(!) - and I feel there is hope again. And that is probably the best thing I could hope to say and feel right now.

pinterest.com/gmun22

1. Physiotherapy

This is the easy one, so I'll start here. In short, I still need a LOT of one-to-one, careful, 'active-assisted motion' physiotherapy (or 'physical therapy' - since I'm back in the land of American English).

Since I arrived in the US, I've seen my specialist scapular PT; my nerve-ortho's physician's assistant (he mainly sees patients for procedures / pre-surgical appointments; his PA is fab); and seeing my regular physio a few times a week, I would say physio is going well.


 'Well' being relative to my entire injury; 'well' is nowhere close to 'functional' yet.  'Well' is tolerating careful, gentle exercises, focusing still on increasing neuromuscular pathways and increasing movement and strength without increasing pain. It's a fine line. It's an incredibly difficult balance to find, but all things considered, 6 years on from my fall, I can finally say progress appears to be taking some (very tiny) steps in the right direction.

PT motivation required!
#goodvibetribe
#IdontsweatIsparkle
#thisismytootiredtofunctionshirt
(some honest days!)
#makeithappen
#noexcuses
#mascara&coffee
(mainly because they didn't have 'cap & sunglasses'!)
I think they help!

2. Lyme relapse: PICC line & IV antibiotics 

It was a unanimous decision (Dr, me, & my mum - all prior to any discussion) to address my Lyme symptoms as aggressively as possible, with IV antibiotics for the first time. My symptoms have drastically increased and I have majorly relapsed -  I would say I feel as bad as when I first started Lyme treatment. IV is the way to hit the infection the hardest - in combo with some other meds.


My response to the first week of treatment 100% confirmed it's been the right decision. There is also a possibility a resurgence of infection may be a contributing factor to my shoulder/ upper body pain (borrelia bacteria like scar tissue.... I have a whole load of that).  This also means certain other therapies - in particular, aquatherapy, for my shoulder, have to wait since the PICC line has to be protected (kept clean, dry, no massive weight-lifting etc.... ha ha) to avoid any risk of infection.  Some things are just impossible to do at the same time.


It makes more sense to focus on healing my entire body, and hopefully reduce some pain levels/ pain in specific areas first. This means - in the PLAN - I *should* potentially remove a huge stress on my body, and be able to battle 'just' the shoulder issues instead of my body fighting battles on too many fronts. If it does reduce pain that will be a major bonus.


I continue to see my (awesome) physio three times a week and we work on making my muscles work individually,  and gently strengthening them - that's way more intensive than it sounds!  So while I can continue very specific shoulder work, the two things are inextricably linked.  I'm trying to keep things as balanced as I can - physio is essential, but recovering from this Lyme relapse will hopefully make everything easier (used relatively!).


I won't lie, this is hard. On physio days, I wake up and so many times I have thought 'I can't go today.... I could cancel...' - but I grab one of those damn T-shirts and I go. And I survive, even if I do often fall asleep afterwards...

And.... to the PICC line. I think, right now this is easier to summarise in these photos:

PICC line explanation
 from Wikipedia 

My first week with my PICC is below, in a photo collage - going with 'the picture is worth a thousand words' thing.  And, yes, my bruises are absolutely worth documenting because I don't actually bruise that easily & having the line placed was not fun!  The doctor told me my veins were "uncooperative" and apparently I have "small veins".  I did however take more offence at being told my muscle was small..... of course I just couldn't stop myself - "I used to be strong.... I was an acrobat... I used to lift PEOPLE!"  Priorities.


When a doctor apologises several times during a procedure, and again afterwards, explaining it "shouldn't have taken that long" - and his PAs/nurses begin to feel like they're becoming cheerleaders, repeating, "you're doing SO well... SO well..." I really don't think it has the desired effect! Honestly, it wasn't really that bad (once it was over!), it just definitely was 'more' than I expected.  But - it's in, the port is sewn to my skin (black stitches through the holes on the purple bit); and this should mean it's there to stay for as long as I need it. Fingers crossed!


I have way more to say about that, but I think this works for an overview:

PICC line: week one
(There is a clear plaster over the insertion area so it can be monitored.)

* I wrote most of this a few weeks ago - it needed some editing, but it does pretty much sum up June.  However, here's my most recent additional comments a few weeks into this treatment.


IV antibiotic treatment (in combo with other stuff) is now heading into week 5. It really does require an entire post.  I'm just adding a little up-to-the-minute update because I am not exactly in super-efficient mode with all this! (Whatever the total opposite is - that's me, except with lists because apparently some part of my brain still thinks I might actually accomplish multiple things a day if I write them down.  I consider it living in hope....! However, I have come to terms with the fact that the lists are more 'hope-to' lists than regular 'to-do' lists.  Mostly.)


Briefly, after a few more weeks, I still feel strongly that the IV antibiotics have been the best decision / option for right now.  This is confirmed by the fact that my symptoms have been exacerbated in (horrid) ways I absolutely did not anticipate and I am well and truly floored by this treatment. It is hard..... It is harder than anything I have ever done before (re. Lyme treatments) - and I really thought I had 'been there, done that & (literally) got the Lyme T-shirt'.  Ultimately, this hopefully means I am attacking things in a far deeper way than I ever have before.  So, it continues.  It is a strange relief to realise many seemingly disparate things fit together; but it is too overwhelming to look at the big picture right now.  I am very much surviving one day at a time - and hopefully each day that means I am taking a step closer to where I want to be.


An old favourite seems perfectly fitting:

"That which does not kill you makes you stronger"
~ Nietzsche ~