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 ~

Rest, don't quit

And the best intentions always seem to be consumed by my body's utterly insatiable need for......... rest.  So January was not filled with blog posts/ positive inspirations/ etc. Honestly, what can I say except sometimes 'sleep happens' (and not always when I need it to happen; so when it comes in waves, I am taking advantage...... sleep heals? Right? - No. Honestly, I don't think so, if sleep healed I would be f***king superwoman by now; but everything else hurts less when I'm unconscious, so sleep still wins).

There was a time I would never have believed writing one thing a day could be too much.... but there's a lot I know now that I would never have believed 'before'. Erm, for example that I actually would learn to rest!

www.pinterest.com/gmun22

 When I am healthy, and fit, and energetic, and strong again (positive mantras); when my perseverance finally prevails -  I don't care that my body is probably going to try to remind me that 'we'* are not in our twenties anymore; I am going to remind it that ALL it did for the majority of my twenties, and so far much of my thirties, was battle with me when I needed to wake up and.... well, do stuff; do anything really - how hard every single physical and mental task is right now.  It* has to make up for lost time.

Therefore when it* is able, when I start bouncing places again, instead of trying to hide a limp and struggle to match the speed of a snail; I will remind my body about all that time we* have to make up for....  I will remind it about aerial yoga, acro-yoga, indoor trampoline parks with foam pits and parkour-trampolining walls..... actually, and parkour, slacklining, 'mainstream' breakdancing..... all of it - I will remind my body that it was just not an option when I first read about it/ watched it and longed to try every single thing -  that when I get my bounce back, I have over a decade to make up for!!  And sometimes, that thought is exactly what I need to keep me going - whether it's battling through one day, or accepting that - yes - 'resting enables healing'.

www.pinterest.com/gmun22

Yes, I have learned how important it is to rest.  I have learned that there are types of pure fatigue and exhaustion that nobody knows how much rest they really need.  That all the rest in the world can't fix 'tired' sometimes.   But because I have learned this; I have also learned I will never, ever take my energy or my health for granted when I get it back.  I have learned I need to rest.  I have also learned never to quit.  Because despite everything - every puzzle, every mystery, every obstacle that I have encountered, I have eventually learned enough to fight it (or sleep through it; cry through it - embracing honesty, remember! And it often feels far more like sleeping and crying dominate. Whatever way.... I have learned I can get through it; whatever that takes).  And one day, I want to look back over this and say I did enough to overcome it.  

And perhaps that is the greatest lesson having both a chronic illness and a chronic injury with severe chronic pain has taught me - never to quit.... and within that, never to give up hope.  One day, when I am back with the right people to help me and support me, I will win; we will win (there are more people than me invested in this journey - for them I am very grateful; but I need them.... and that's another post).  I will embrace my dreams, goals, and feel like I can take on the world again. One day.

I feel this truly expresses how it feels to fight Lyme
  and a chronic injury (/chronic pain).
I look forward to the day where I look at a fresh challenge and can smile.
( pinterest.com/gmun22 )
(It easily covers each individually! So double fight = double reward?! Please universe....?!)

"The danger is not that we aim too high and we miss it, but that we aim too low and we reach it."

- Michelangelo -

*Geek Moment:

*'we' - so the linguistic geek inside me finds this pretty fascinating..... it is very normal for someone with a chronic illness or injury to see it as something that is not a part of them and to talk about it either in the third person (N.B. This is not the same as just generally referring to yourself in the third person.  In some cases, it's batshit crazy.) or as something belonging to them: 'my shoulder was not happy today'.  It sounds a bit crazy, and when I became aware I had been doing it quite a lot (slightly questioning my sanity); I stumbled across an article on chronic pain that talked about it a bit (and said it was totally normal, not a little bit crazy!) I think it would definitely make a cool topic for a thesis (I declared 'geek' as a heading here, therefore 'cool' and 'thesis' can totally be used in the same sentence).

I've noticed other people facing severe health issues do the same thing too.  I just thought I'd clear up the use of 'we' as I do it quite a lot and I don't want anyone to think I've developed a second personality along with everything else.....  Personally, although I haven't really researched it much, the idea of separating yourself from an injury or illness, by not seeing it as a part of you, makes a lot of sense to me.  It's not the person I want to be, or how I want to be defined, but it does feel like a massive part of me, something that is permanently attached right now, so I do have to acknowledge it.  I think it's probably even more common in 'short-term chronic illnesses' - i.e. I fully intend to recover.  I do know that I may not ever get to 100% again, but I know I will improve way beyond where I am now with the right medical support and treatment. So right now, it is a part of me, and right now, I feel it defines me in some ways....... or defines the life I live (or don't live) right now.  It is a part of me; but not quite.  It makes perfect sense to me that it is psychologically healthy to see it as something you are living with, yet also battling; something you have to figure out a way to coexist, while also planning its ultimate demise, and your ultimate victory!

(If this explanation  has just made something you hadn't even noticed even more complicated.... #sorrynotsorry - it's good to exercise the brain! ;-)

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 ~

Wrist surgery: I have gory photos!

I'm going to let the pictures tell most of the story here - it's much easier just now!


First though..........


Photo 1:  Day before surgery......... not knowing exactly how I was going to feel, or what I was going to be able to do, despite feeling knackered I went out with my mum.  I decided it might be the last time in a wee while for 'real clothes' (ie not sweatpants), make-up & my hair done properly. Vanity?  Maybe..... but really more: 'it makes me feel like ME ' than I care what anyone else thinks. It's taken a while to get to here, this is a reminder I have done it before & I'll do it again.  And it was a good decision!  Not sure when I'll manage buttons again; or sleeves with cuffs!  And even pulling leggings up with one semi-functional arm isn't easy when it can't reach all the way around my body!  Sweatpants and ponchos are my current fashion statement! (Yes, together.) :-D


Photo 2: Hospital gowns just aren't that flattering!  I would totally redesign these.  Plus they just give the illusion of privacy & then different people still have to stick different tubes/ sensors/ needles etc through all the holes that absolutely do *NOT* sit in the right places on me.  I am not a 'one size fits all' in anything!

The difference a day (& some make-up & sunglasses) makes!

Briefly: surgery went ok.

Pre-op:

Not much point in looking ridiculous if  you can't laugh at it (I'd redesign those hats too)!

And the IV into my SORE right side did hurt, but I declined the offer to have it in my FOOT
- I'll stick with a wrecked upper body & not invite other areas to join in..... 

Post-op dressing & FAT fingers:

On my inspirational pillow!

My friend actually sent me this pillow after my first surgery for my 30th birthday
- the entire pillow in a massive parcel from Scotland to the US.
 Made with one of my very favourite quotes - it's seen a lot in those 3 years!

Ice became my favourite thing for a few days again!

The surgeries were:

• carpal tunnel release 
• a nerve release
• deQuervain's release
• a tendon release
• trigger finger (thumb) release
• a tendon release; should stop my thumb getting 'stuck' in position
• wrist arthroscopy
• "cleaned out a load of junk"
• "junk" = inflammation & frayed/ damaged/ dead tissue

These all essentially create more space in an area so nerves/ tendons/ joints aren't being 'squeezed' by too much inflamed tissue making movement extremely painful/ impossible.

My surgeon has said the surgery went very well - and he was pleased not to find any torn ligaments, which he thought were a possibility.  

Incision photos below  

I must admit, there's something a little satisfying about these for me.  My shoulder was so neat and barely bruised with very little swelling with both ops - even the scapular one, which was major surgery...... ok, I have my 18 staples photo but it really doesn't look like it FELT.  This............. this pretty much looks like it feels!  

After I showed my Dad the incisions on Tuesday, he said "Now I understand why you're sore." (And made appropriate "ooft" noises".)  My Mum said - "Did you not believe her?!"  So............ justification! This HURTS right now!

(P.S. My right shoulder/ side still HURTS too............. and it's pretty useless. I suppose it wasn't magically going to come to life because the other side is suddenly totally out of commission!  It's trying - I'm trying -  really; but 'we' were trying before this; always trying - and it's still as useful - or as useless! - as it was last week, or the week before.  My head is becoming as useful as my feet - really! - but I have consciously had to stop using my teeth or I am going to break them on something!  It's pretty frustrating.)

Each cut is a different thing from the list above (there's still a lot of marker pen; I think the surgeon just liked drawing!):

Bottom of thumb: trigger finger release - there are stitches you can't really see for the ink (& blood)

Base of palm: carpal tunnel release

Quite a bit of bruising, even on my hand, which is kind of unusual for me as generally don't bruise much - more justification for the pain I have!  Got lots of arnica!

deQuervain's release along lower forearm/ wrist - still covered

Arthroscopic incisions on the top of my hand

Surgeon removing the stitches from the arthroscopic incisions

Incisions/ stitches re-covered after surgical dressing was removed

Custom made splint

Watched as the therapist made this, shaped it to my wrist/ thumb; reheated
the plastic (in hot water) again, re-molded it to my wrist; fitted it, reheated to cut
to size; repeat until the perfect fit  -  it was pretty cool!

Back next week to get the rest of the stitches out and the splint readjusted.  

And I should make a confession....... I don't know why; it's not the worst pain I've had - it wasn't even the worst pain I had right then; but after I'd photographed my surgeon removing my stitches, had a good look at my gory incisions and bruises (& I know they're not the worst - but I was expecting 4 dots and two 1cm incisions - that's what he drew on me in the appointment prior to surgery!); we went through to the therapy room where I'd get my splint, sat down and kind of suddenly, I said to my mum, "I don't feel great."  She told me to put my head down on the table.  Less than a minute later, she told me to put my head between my legs.  Ugh.  There were OTHER PEOPLE there.  I know I get severe pain responses with my right shoulder - but that's usually when I'm trying to make it work hard - or someone else is.  This just washed right over me for no apparent reason until the room was swimming.  Fast.  Head down, the therapist (who was doing about ten things at once) came over pretty quickly.  Next thing I was 'assisted' through to a separate room and laid on a bed with ice on my neck and my feet up........... and given a (compulsory) lollipop!

Note my Mum smiling!

(Just because she's the one who usually passes out!)

The quote from my pillow -  always good advice - words to live by: 

“Learn from yesterday,

live for today,

hope for tomorrow."

   ~  Albert Einstein   ~

#takeabiteoutoflyme - my final post, pics and facts

The Lyme Disease Challenge continues throughout March......... Maybe beyond.....

March has been about the Lyme disease challenge: #takeabiteoutoflyme.  I had a few 'issues' with my shoulder/ scapula last week so I didn't manage to do the editing and writing for the sequence I'd planned - but here they are, better late than never!  I'm wrapping things up - for myself - in terms of the challenge because I am having wrist surgery on Friday.  I plan to write a quick post about that before then, right now it's back to Lyme awareness

Here are my final two photos and facts:

I don't often crossover between the Lyme FB page I set up and my personal stuff, but it seems appropriate here.  This was written for GoLymeGreen - the facebook page I will use to bombard everyone with more information come May, while also trying to talk you into changing your cover picture or profile picture green for Lyme awareness (if you could like the page, that would be great! :-D

Obviously this blog was set up to share my journey recovering from Lyme disease - and what a journey that has been.  It is definitely known for being tough and challenging, but flying 5000+ miles and then driving 650 miles for shoulder surgery isn't usually part of the package - never mind multiple shoulder surgeries, and now wrist surgery...........  But back to Lyme.  

A very quick version of my story is: 

2005: I went from being totally healthy, bounced everywhere, was doing my MSc with plans (& a scholarship) to do my PhD and absolutely loving my life to barely able to walk within weeks.  My mum moved back across the pond to help me - and by help me, I mean literally walk me up the stairs and in the door to university meetings; to cook for me, to wash my hair while I lay on the worktop with my head in the sink.  I went from bouncy to zero in record time.

2005-2008:  I applied for a visa that let me live with my parents in the US for an *intended short time* so I could 'recuperate' and then return to my PhD.  I continued to get sicker and sicker. I lost my scholarship. I could not walk.  I needed to use a wheelchair when we went out.  I had days where I was completely bedbound.  I had a 'diagnosis' of 'CFS'  - here's a look at that: "But you don't look sick...."

2009: By sheer luck my Dad got a job in Pennsylvania. I discovered Lyme Disease. I had my blood cultured and found out I had spirochetes in my blood - a type of bacterium that can 'screwdriver' its way through every cell in the body with its spiral-shaped 'tail'.  This infection had been taking over my body for at least 4 years  - it was systemic, making it much harder to treat.  I found a wonderful Lyme doctor.  I discovered Lyme disease had caused my 'CFS' symptoms; and I discovered that EVERYONE here actually knows what Lyme Disease is - even if they are also a bit sketchy on details; but let's face it, so are the 'experts''.  There is simply not enough known about Lyme disease although it is the most complex bacterial DNA that has ever been sequenced, and it is emerging as the number one growing infectious disease in the world.  That means it's important to pay attention - and, PLEASE, bite that lime!

2009 - now: I continue to work towards better health.  My health has improved exponentially.  I have had some complications and some set-backs, but I am determined to get healthy again - and determined to do all I can to increase awareness of this disease - which can cause permanent disability and death, if it is not treated.  

From GoLymeGreen:

(https://www.facebook.com/golymegreen2014)

I'll be honest, I didn't know how the challenge was going to go - were people going to ignore it because they'd never heard of Lyme disease, or because they simply can't do every 'challenge' for every charity that they come across online?  Would it be confined to the 'Lyme community' - patients and those who are very close to us and see, firsthand through our own suffering, how destructive Lyme can be?  How much life it steals from us? And would that really raise much money - those people (us!) are so busy trying to pay for expensive treatments, as much as we wish we could donate so much more to ILADS, we need to get better - and that's expensive.  Would this challenge really raise awareness?  If it was simply circulating within 'our' community, would we really be reaching others?  Would we really be increasing awareness?  Would it actually work?

My personal view was to give it a go anyway, to try to swamp every social media account I have with photos and nominations, to share others' photos and messages on here, and to do my bit to try to make it work, because the wonderful organisers of The LymeDisease Challenge  have worked so very hard in putting this together.  And they have done it! 

The number of people from around the world who have posted photos of them biting a lime shows just how MASSIVE a problem this is.  It shows how much this challenge - and even moreso, awareness - is needed. It shows that #LymeISeverywhere - it IS in Australia; is IS in the UK (everywhere, not just the hills of Scotland); according to various sources, I have even learned this month that the bacterium that causes Lyme has been found in Antarctic penguins!

I am touched, personally, by my friends and family who have taken part, who have shared a fact, dressed up in funny clothes (sorry, 'normal' lime green clothes - you know who you are!) and who have not just bitten into a lime; nor have they 'just' spread awareness - they have helped to create *HOPE*. 

(And they will be featured in a collage very soon - watch this space!)

*HOPE*, that even this crazy, strange disease that can take years to diagnose; is inexplicably ignored; is too often untreated for far too long, wreaking havoc on people's lives - destroying people's lives -  IS being talked about GLOBALLY.  Famous athletes and singers and celebrity personalities have all added their support to the campaign too - increasing awareness and spreading *HOPE* by reaching their fans across social media.  We have *HOPE*, that by increasing awareness and by raising funds, there will one day, be an effective treatment for Lyme - and ideally one that isn't as bad as the bloody disease itself!  *HOPE* for a test that can accurately diagnose Lyme. *HOPE* for a treatment that doesn't take YEARS to eliminate years of bacterial colonisation, damage, and destruction in the body.  *HOPE* that people will understand a little more about Lyme because they are learning facts about it.  *HOPE* that this will create more understanding - for those of us dealing with an illness that we struggle so much with in every way.  That *HOPE* is so important. *HOPE* is life saving; it is what we live for. *HOPE* is what keeps us going. Along with those who support us. Sometimes, *HOPE* is what keeps our loved ones going too.

So please, if you read this, consider yourself nominated. Go to lymdiseasechallenge.org and follow the directions - #takeabiteoutoflyme, post a funny picture with the hashtag: 

#takeabiteoutoflyme 

and make it public so everyone can see. Share it on twitter, instagram, personal blogs - anywhere! - and don't forget to nominate others to do the same! Help us spread awareness, and please consider donating if you can. Please help us continue to *HOPE*.

Please visit www.lymediseasechallenge.org to learn more and please help spread awareness of Lyme disease.  

Lyme disease has stolen the last decade of my life - you can help prevent it doing that to anyone else.

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

  ~ Emily Dickinson

And January is gone...

The day after I wrote my last post, I had my first post-surgery appointment with my physio who specialises in strange scapular issues that nobody knows how to treat, patients nobody knows what to do with.  My surgeon in Kentucky recommended him 6 months after my first surgery and he has been an invaluable resource of information and knowledge for me, and also for my regular physio, as well as a caring professional whose kind and unassuming manner belies the accolades and achievements he holds (I stumbled across his CV online when I was looking for details to send to someone - it's pretty impressive).  He is always honest; I always feel he tells me what he knows and what he thinks; and since I like to know things, and understanding as much as I can about all things shoulder/injury-related is a huge part of how I have coped with this, I appreciate being treated that way.  


In saying all that, my appointment last week was tough!  In every way.  The upshot is that February has to be a month of pushing through.  All the stuff I wrote about gymnastics is going to have to come to the surface again (after 3 years of trying to learn to push it down; to listen to my body; and to understand pain is a way of your body communicating - that's on hold).  I need to get a 30 degree increase of active motion with my arm this month, or there is a good chance my surgery could be classed as a failure; my tissue might not stretch out; I might run the risk of things scarring down again.


That was a hard thing to hear.  Not as hard as the new assisted movements I have to do though.... 


Example - an arm held straight up in the air is 180 degrees; I'm currently aiming to get to about 160 degrees.  At the moment it is taking a lot of 'effort' (i.e. pushing, pulling, leaning) from my physios to get it there, (and possibly a little more effort from me not to wriggle out their grasp and run away) -  attempting it myself at the moment is just pathetic - I have no idea what the number is, I'll just stick with "not even close" and "pathetic"........ and  agony.

And I will now admit that I think I have lost all the stuff I wrote about only a few days ago. Or maybe, the language of gymnastics is just not the same as the language of... 'controlled torture' I think I'll call it. I guess I was never really tortured in the gym - hard work, pushing yourself to your max and working on something over and over and over again while fighting through sore, tired muscles isn't really the same as forcing yourself to lie/ sit still while someone forces your arm into a position where it feels like it will snap if it goes any further - "like rocks crashing into each other..... and you could just crush them"  I described - "that's ok, I'd expect that" he said and pushed a bit harder.  But we weren't finished there.  Once in that absolute maximum position, feeling (honestly) as if he could just snap, crack(le) and pop my bones, he said: "Now reach up. Higher. Harder. Push against me. Resist this. Push down. Push up. Resist. Push with your elbow. Push with your wrist.  Push out the way. Push up again. Don't let me move it."   


Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest.........

$%#&.

The idea (/ necessity) is to get my muscles working again.  Muscles that haven't been able to work properly for 43 months now.  The have to 'relearn' how to fire and how to work properly - and of course they are....... well, weak does't even describe it.  Useless is better.  Sometimes my arm still feels like a stick, hanging at the side of my body, but not properly connected.  It's an odd kind of sensation.  The point of working through the pain, to get the muscles to work goes with the theory that once the muscles work and are actually supporting my arm and balancing movements (i.e. multiple muscles are sharing the workload rather than just one or two muscles trying to compensate different movements), the pain *should* diminish. That's the plan, anyway.....

(It better be!)

And there's also self-inflicted torture - twice daily with my 'pulleys' that are fixed over my closet door, staring at me like an entirely innocuous nemesis. (Give me "sit in the splits while you watch TV" any day!) I can already say - 3 days in, I have not missed an exercise.  I may cry through it, I may feel - again literally, I could draw the lines on my body - the bands of tissue that are pulling on my ribs, and on my scapula and feel like I could pull them right out of position, or until they snap.  But I will never have anyone say to me: it didn't work because you didn't try hard enough; or: it didn't work because you couldn't fight through the pain.  I will never hear someone else say that, and I will never have a voice in my head saying that either.  Because so far, despite all the 'experiments' and failures and different exercises and different exercise programmes; I have done every single thing I have been told to do (this makes me a "compliant patient"), and I'm not going to stop now - something has to work.

Obviously, what I hope for, is to be told the surgery did work; it can be classed as a success.  That removing that scar tissue, and unsticking my humerus from my scapula (i.e. cutting away the scar tissue that was sticking the top of my upper arm bone to my shoulder blade  -  exactly what was happening) has made a difference.  The degree of difference remains to be seen; what pain, possible problems or other issues remain are still major unknowns; but right now, at this moment in time, the focus is on making sure this surgery has not been for nothing; that it will be helpful in some way.  That is what I am working towards, and that is why I will bite my gums or dig my nails into my skin until I bleed; I will grit my teeth, and I will ignore the watery eyes (it really bugs that closing your eyes does not stop tears); it is why I have already told my parents, my physio and his current interns that my eyes will water this month and they will just have to ignore that. And I will just have to ignore it all too.

So.......... February is set to be a tough month. I will need all the mental and physical energy I can muster, and hopefully I will work hard and see some progress.


 In order to have something else to focus on each day, even for 5 minutes, I'm going to try to make February a 'visual' month - just a picture, photo or image of some sort to sum up my day.  If I manage, it might be interesting to look back over it and see if it tells me a story.  Getting things 'out there' can be pretty cathartic, so hopefully with something else to think about, and to reflect on will be helpful. If not, I'll sleep and try again in March!

Looking ahead, this is how I feel:

Definitely 'fingers crossed' kind of a feeling

Success is going from failure to failure without losing enthusiasm

 ~ Winston Churchill ~