Life: positive attitude essential

I've had a few conversations recently, and a big one today, about dealing with... well life really.  My life has definitely not been anywhere close to anything I might have imagined, but everyone has problems and the old adage that you should never judge anyone until you've walked a day in their shoes is something I truly believe in.

However, I also believe that although we might not have control over everything (umm, anything!) that happens to us, we are fully responsible for deciding how to deal with it.  Every now and then  everything does build up and stress me out and I have the whole 'life is not fair' feeling and I cry and let it all out and then I move on, because I honestly believe that moaning and complaining about everything all the time achieves nothing.  Although letting it all out every now and then is definitely cathartic.

So with all that fresh in my mind, today's choice lyrics are from Pink's "God is a DJ":

If god is a DJ

Life is a dance floor

You are the music

If god is a DJ

Life is a dance floor

You get what you're given

It's all how you use it

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

And then a favourite and very fitting quote:

“Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.”

~ Voltaire

(Just Wanna be) HAPPY NEW YEAR!

January is a really hard time for me.  This January actually marks 8 years since I first got ill - my life has not been 'normal' since then.  Every year I wish that things will get better this year... but today mum and I pulled the wishbone and both got a small bit and the big bit broke off and fell on the floor! 

Anyway, as a personal boost, I've decided this January is going to be musical inspiration month and I am going to pick a song a day and some select lyrics that inspire me. (Suggestions welcomed too!)

Hopefully it will get me through this month, provide lots of positive inspiration and happy thoughts. 

Starting off with a wish for a very happy 2013 for everyone, courtesy of Leona Lewis:

 

So what if it hurts me

So what if I break down

So what if this world just throws me off the edge;

My feet run out of ground

I've gotta find my place
I wanna hear my sound

Don't care about all the pain in front of me

Cause I'm just trying to be

HAPPY

Just wanna be happy

YEAH

(I don't own any music/ videos etc. All linked to Youtube and artists accredited)

"Some people dream of success while others wake up and work hard at it"

    ~ Anon

My "Dream Team"

I'm running a bit behind on my updates, this one really should have been at the end of November.  This photo is of what my Mum called my "Dream Team" - taken when I saw Dr Kibler when he was at a conference in Philadelphia at the end of November.  I was very lucky to have my surgeon, physio (Angelo, on the left) and Marty Kelly (on the right), the specialist physio I have been seeing at Penn (and the conference organiser).  Two people missing from my photo are the shoulder therapist, Aaron from Kentucky, and our good friend Sami, the neurologist who really sent me in the right direction way back in January.

This is really likely to be the only time I ever have my "team" all in the same room, so I felt it was a necessary photo opportunity!  I really feel I cannot thank these people enough for the treatment, support, skill, expertise and compassion they have all offered me this year.

Onto the actual appointment.... Dr K felt that it was the most improvement he had seen between appointments, which is a sign I am finally heading in the right direction, although he did say he was not pleased with where I am right now, but pleased that I have finally got there; and that hopefully now I can move forward.

The valium-assisted physiotherapy sessions seem to be helping so I have to continue those just now - and have been - and I will see Marty again at the beginning of January to see what the next step will be.

There was a lot of talk about how, with this injury, and especially when things get to this stage and take this long; it becomes as much of a mental challenge as a physical challenge.  It comforts me to hear the health professionals say that, because it does make me feel better (kind of) about how I feel about it all.  

I recently went back over some of the blog posts I had written earlier this year and remembered how I felt at those times.  Looking at them now they seem so overly optimistic and naive, but no-one really knew how this was going to go.  One of the key things I have said, and thought, all year is that once I can start really working on my exercises I will feel as if I am really helping myself and I am sure after that I will start to feel much better mentally and physically.  I still feel that is true, but I am still waiting on it coming.  At the moment, my focus is still on trying to move my shoulder as much as I can but without aggravating the pain.  This is not easy, since any movement is painful, but I do now have some movement that is not such an angry pain, and that is the first step.

The real outcome of the appointment was that this is definitely a long, hard process and that there will still be many ups and downs and challenges, but that they are optimistic that I will get there.... one day...

I have always been delighted at the prospect of a new day, a fresh try, one more start, with perhaps a bit of magic waiting somewhere behind the morning. 

   ~    J. B. Priestly

Celebrating the shoulder shrug

Last week I saw one physiotherapist and two doctors who had not seen me for a few weeks.  Every one of them was very positive and enthusiastic about my newfound (re-found?) ability to shrug my shoulder. "I think that's excellent" and "I'm so excited about this!" were a couple of the comments I received which led me to realise that this shoulder shrug is not just a shoulder shrug.

The last month has been a little better.  I have been deliberately cautious with my exercises, taking the advice that I had not to do anything that was going to aggravate my pain.  When I saw the physio at UPenn in September, his recommendation was to focus on calming the pain because I would never make progress functionally unless my pain was under control.  Initially it felt a bit like I was letting the pain beat me. My shoulder felt tighter and I had a lot of burning pain in my hand (possibly from nerve compression).  I felt that not increasing my exercises was a step backwards instead of going forward.  At the same time I felt like listening to my body also made sense; it was like I had been fighting it for over a year, especially since my surgery, and now I really had to let it guide me.  It took a few weeks to really get my head around this and I certainly didn't get instant results (given up on those!) but now I do feel like it is beginning to work.

I've also been tolerating more manual manipulation by taking Valium when I go to physio.  It seems to be increasing my range of motion now and my scapula has gone from feeling solid and 'stuck' to feeling more like it is pulling against sticky toffee when I try to move it.  It's really just more torture, but it does seem to be helping!

My pain is still high, but less aggressive and angry pain.  It is more constant, steady, and just about controlled by my painkillers now rather than feeling like it is attacking me all the time.  I have stuck with the very basic exercises - small movements, no pushing anything and taking a day off when I need it - and I am very slowly beginning to see results.

Such as shoulder shrugs…  Last year after I fell I was completely unable to shrug my shoulder.  Every medical person I saw would try to get me to do it and ask me why I wasn't doing it: was it too sore? Not with that movement.  Was it too tight? Nope.  Was something blocking it? Nope.   No-one even considered that the muscles that did that job were no longer even there. (My surgeon says this is because there is a gap in the "medical encyclopaedia" and taps his head as he says that.  The injury is so rare that most medical professionals have never encountered it.  In fact, our friend who is a top neurologist, and who really helped me a lot this year, told me he had "never seen a scapula not move before".)  I didn't even know I wasn't moving it unless I was looking in a mirror.  I simply couldn't tell.  After my surgery, my surgeon said that there was now a 'gap' in my brain - it didn't know how to do certain movements anymore because the muscles had been detached for so long.

Learning to do the movements again is strange.  It seems like I should just be able to move the way I always have but every time I get a new exercise, or a new movement to try, it's like my brain is thinking really hard and concentrating on making the muscle move and it's just not working.  When I was younger I loved Matilda by Roald Dahl and was convinced that if I tried hard enough I would also make objects move with my eyes.  I concentrated really hard and tried and tried and tried, but it never worked(!) - it feels a little bit like that, although I think I have a better chance of achieving success this time….  For me, doing  around 40 shoulder shrugs a day for months just to get a really basic movement back doesn't really feel like something to get super excited about.  But seeing it from a few different perspectives this week has made me realise it's not just the shoulder shrugs, it's really what they represent.

It is a tiny movement, a tiny achievement, but it means that I have managed to get that movement back - to rebuild the neuromuscular connections to the extent that I can now do this movement (relatively) easily, quickly and sometimes even subconsciously now.  I really hope that suggests I will manage to do that with all the other movements too.  I know it's going to take a lot more time and lots of hard work, and I was told this week to expect a bumpy road ahead.  So right now, I am going to enjoy feeling a little bit excited about my shoulder shrugs!!

"Success is falling nine times and getting up ten."

   ~ Jon Bon Jovi 

Frozen Scapula

"I know you've been screaming this at everyone for months, but I think your scapula is stuck." said my physio.  This was established by various movement/ manipulation attempts, all of which I failed miserably - it seems the muscles under my scapula (particularly the subscapularis) are not really doing what they should be doing.  I've also been getting a lot of increased nerve-y type pains and strange symptoms like burning in my hands and, strangely, a sensation where it feels like ice cold water is 'leaking' out a specific spot in my hand/fingers - I check to see if something has dripped on me but it's always dry.  He now thinks that might all be coming from compressed nerves under the scapula.  The pain I am still getting wrapping round my side along certain ribs would also be explained by everything under my scapula being 'stuck' as the same ribs originate there.


Next step: "I'm trying to get my fingers under your scapula and pull it away from the thoracic cage." And yes, that hurt as much as you'd imagine!


I've heard of a frozen shoulder before this year, and I've heard (and learned) a lot about it this year.  Before, I always thought it just meant the joint was stiff but basically (my basic understanding now) it's when fluid gets into the joint and it literally freezes/ solidifies and makes it impossible to move.  Usually that refers to the actual ball-and-socket joint we think of as our shoulder (I have problems here too), but there is also such a thing as a frozen scapula.  My understanding of it is that basically when everything ripped apart when I fell, and then was unable to move properly for so long - before and after surgery - it has healed kind of stuck together.


A frozen scapula's a bit more unusual (of course it is.... I really should have realised by now there is not one aspect of this injury that is normal/ common) - I tried searching Google Scholar for "frozen shoulder" and got 8,910 hits and for "frozen scapula" I got 1 (yes ONE) hit - I wasn't expecting a lot, but this still really surprised me!!  On Science Direct I got 2,009 hits for "frozen shoulder" and 3 for "frozen scapula".  Even Google threw up 10,400,000 search results for "frozen shoulder" but only 671 for "frozen scapula".


I have been saying that's what it feels like for months.  It's like everything is glued together and I simply can't make my shoulder blade move.   That's pretty much what it looks like too.  I think probably a lack of movement was expected after my surgery so it's been hard to tell before now what has been within 'normal' range for after the surgery and what has been a real problem.  Now, given the amount of healing time I've had, it is very clearly not moving as it should be.


Sometimes for a frozen shoulder they will aggressively manipulate the shoulder under general anaesthetic.  We did discuss this but there is a risk that without me being aware of pain, the person doing the manipulation could torque the shoulder excessively and damage the repair.  I've been told that I can't do anything to damage it now (i.e. exercises), but it is still very weak and excessive force could damage it.


However, the solution is to stretch out the tissue and get some movement back in my shoulder blade again so this week I have taken Valium, along with my usual strong painkillers and muscle relaxants before physiotherapy and I have been able to tolerate a bit more movement and massage of the area.  I am not knocked out, or even dopey enough to not feel the pain - it still hurts! - it just means I am able to tolerate a little bit more, so gradually it should loosen up a bit and I should be able to move it a bit more.


I have a ridiculous tolerance to drugs - actually, I don't even think tolerance is the right word given that I've never taken Valium before in my life, my brain just seems to fight them (when I was 12 I got my tonsils out and they gave me a strong sedative pre-surgery that was supposed to knock me out and it did not... actually it was a really horrible experience and I vividly remember the entire, um... 'trip' I suppose is the word  - had I ever been inclined to take drugs, that experience would have put me off! So it's just the way I've always been!).  Anyway, I've required quite a strong dose, combined with other strong painkillers, and taken on an empty stomach to even get enough of an effect for this to work.  It doesn't last very long either - maybe 90 minutes, so I have to time it all very carefully to get the optimum dose working at the exact time the physio is working on me.    And to top it all off, my strange reaction to drugs means the Valium - often used as a sedative - is giving me insomnia on the day I take it, so it's been 5am before I've been falling asleep... however that has meant that I've pretty much slept all day the day after the therapy which has probably been the best way to deal with the horrible pain.


The extra movement and massage in the surgical area is making me feel like I've been beaten up.  It even hurts to breathe right now because my rib cage expanding is agony.  I've had to increase my pain meds again and feel like I'm permanently attached to my ice machine... But even in two sessions, my physio is amazed at the increased movement he is getting with my arm - OK, it's nowhere near even close to normal, and I still can't move it like that myself, but it has to start somewhere and this is the most improvement I've had in months.


The plan is to try this for a few more sessions, see how the movement increases and then I'm hoping to try some therapist-guided aquatic therapy in a heated pool.  The idea is the heat is good for the muscles/ blood flow/ healing etc. and the buoyancy effect reduces the weight of the arm and (hopefully) it will move more, so my movement should increase.  


I think it's a bit torturous right now, but I am feeling really positive about trying this - it makes sense to me based on how my shoulder feels and how it moves (or doesn't move actually) and I think the fact there seems to have been some improvement after just two sessions is really encouraging.  


And in between all that we have been trying to unpack and organise the new house.... I say "we".... really, I'm pretty useless right now and Mum's doing a fabulous job!  We still have quite a lot to do though.....


It seems the day for a feel-good positive, motivating quote!

"What lies behind us and what lies before us are tiny matters compared to what lies within us." 

            ~ Ralph Waldo Emerson

"You must have been a real bitch in a past life"...

... said my friend to me this week.  Real friends know exactly how to make us smile. No gushing sympathy... which actually makes me feel really uncomfortable  - what exactly are you supposed to say when someone says "oh you must feel soooooooooooo awful" or "I feel sooooooooo sorry for you"?  I feel a strange compunction to reassure them that actually not being able to use my right arm isn't that bad; or talk about how I'm practically ambidextrous now; or stand rather awkwardly not saying anything at all while they look at me with "the head tilt" (remember Friends?!), they fuss a bit.... then usually they reach in for the hug, say they'll only hug me on the good side, and then reach around and continuously pat me on the broken scapula/ surgical site.

 I know, it's all very well-intentioned, and I very much appreciate it... BUT being told I was a bitch in a past life was refreshingly funny! And most importantly, it made me laugh!  There's nothing like laughing with a fabulous friend..... it should be considered therapy!

It's been a pretty rubbish couple of weeks.  I had some intense pain in my shoulder, burning in my upper arm, hard lumps appeared in the bicep/tricep area, my movement - even the "easy" stuff I was doing became much sorer.... last weekend I was seriously worried. I felt like I had a bad flu that somehow connected to my sore arm. I couldn't stand up for very long without getting dizzy - not just a little bit dizzy, proper spinning, even with my eyes shut; dizzy still when lying flat on my back and that was accompanied by nausea... combined with my 'usual'.  I had some blood work done and am waiting on the results of that.  Maybe it will show something helpful.

If not, it seems that it is the pain causing these symptoms/ incidents.  It really just feels like my body is saying "I've had enough of this pain and  I need to sleep. I don't seem to have a real say in this!! It just happens.  Ugh.

It has definitely been a time to live in the moment and not think too far ahead (sometimes dinner is too far ahead!) because, honestly, if I try to think too much right now I'd go crazy.  This is very much a step-by-step approach.  I don't know how I'm going to feel from day to day, or week to week.  It feels impossible to plan things right now.

In other news, we are moving house tomorrow.  My Mum has been like superwoman again! I have really been close to useless in packing/ lifting/ carrying anything! My Dad's been working a lot so she's packed most stuff herself.  My Dad's been helping move some boxes to the new house this week and had a few guys from work who very kindly spent some time helping yesterday packing and unpacking the van my Dad hired.  They got a lot of great stuff moved.

Tomorrow the movers are coming for the furniture and then there will just be some bits and pieces so sort over the weekend.  It's quite exciting! 

It's also my Mum's birthday tomorrow!  I think we'll celebrate over the weekend as tomorrow is going to be a v - e - r - y busy day!

Hopefully it will go smoothly and hopefully next week I'll get my results back and I can move on from there.


In the meantime, let's hope I had a glimmer of nice in my past life that gives me good karma!

“The distinction between past, present, and future is only a stubbornly persistent illusion”

                                ~  Albert Einstein

A much more positive week

This week has been so much better.  I'm not really feeling any different physically and I haven't magically regained any more function in my arm and shoulder, but I had a couple of positive appointments packed full of great information and I am feeling much more optimistic about it all right now.

My appointment at UPenn with the physiotherapist Dr K recommended was excellent.  I had read about him prior to the appointment - he has a great reputation and an impressive CV with lots of publications and he was highly recommended by several people, so I was really optimistic about the appointment.  I was not disappointed.

He was very thorough, examined me, tested my movement - FELT my muscles and my movement more than looked at it -, asked lots of questions and spent a lot of time answering my questions too.  He thinks I have an ongoing nerve injury called brachial plexopathy.  This is something that has been discussed before.  Although my nerve tests ruled out tears or avulsions (a good thing) other nerve injuries such as overstretching might not be detected.  He said that my symptoms and movements fit with other patients he sees with this injury and he did explain a lot of that to me.  It really made me feel better to hear that he recognises these symptoms and that he thinks they will improve.

And, as I am now well aware(!), I did a lot of damage to lots of different muscles and tissue and it is all going to take time to heal.  However he said that looking at me he does think that this will get better.  My physio I saw in Scotland, also a great physio with years of experience (even although he has never seen a detached rhomboid & trapezius before) said almost exactly the same thing.  To me, it almost seemed like an instinctive knowledge, something gained only through years of assessing injuries and assisting recoveries; but they both said it the same way - this will be hard work and it will take a lot of time, but what they see makes them think I WILL regain function again.

I have to focus on reducing my pain and not aggravating my shoulder right now.  I have not to try to stretch it out or build strength or movement, or to do anything that could irritate the nerves and make them crazy.  I have some exercises to do that will maintain the movement I have and stop my shoulder seizing up or getting any tighter, but the focus is on calming things down.  Enabling healing.

I've been saying for ages that I'm sure I will feel much better when I can work hard on my exercises and know that I am doing everything I can to build up the muscles and increase my strength again.  It is much harder to realise I am still helping it by doing very little.  However, I feel that it is the right thing to do.  We get pain for a reason and so much of modern medicine seems to focus on fighting our bodies instead of listening to them and responding to that.  My appointment really made me feel that it is ok - more than ok, important - to really listen to my body and to be guided by what it tells me.

The physio spoke a lot about "unconscious movement" and how the body will do that when it is ready; right now it is protecting itself.  That really makes sense to me - I have been trying so hard to make it move and to do things as normally as I can, but it all feels like a constant struggle.  Taking that pressure away and paying close attention to how every tiny movement FEELS is definitely making it feel less aggravated.

My TENS machine is helping with my pain - for the first time since my surgery, I really feel as if I have some adequate pain relief.  The pain returns very quickly when the machine stops (time to change the batteries - I am saving the planet and using rechargeables!) but I can use it as much as I need it (as long as I move the electrodes about regularly) so it's fantastic!!

I also had some good discussions this week with my regular physio (who was so brilliant he came to the other appointment with me - that was so helpful and very much appreciated!), my neurologist and my Lyme doctor.  All of them feel that the RSD/ CRPS diagnosis is not really the answer to everything (with varying opinions on RSD itself as a diagnosis, definitely a discussion for another day) and that I do have associated symptoms, but they are because of my injury and they will heal with time.  Much more positive, and I feel much more optimistic about things now.

I said to my Mum, "The information I got from that doctor in Kentucky really wasn't good, it could have been psychologically damaging for some people." Mum said, "some people??!" Oh well, at least I feel I can move on from that now!!

 "If  you're  going  through  hell,  keep  going."

                 ~ Winston  Churchill