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

I am not an island...

It's now been a week since we got back from Kentucky.  It was a very eventful 3 day visit and it has really taken me all week to even try to begin to make sense of everything in my head.  Overall I reckon I spent about 16 hours at the clinic between the surgeon, shoulder therapist, physiotherapist, radiologist and rheumatologist and was pushed, pulled, scanned, measured, stretched, prodded, and jabbed!  Obviously a lot of information was packed into that time so I'll try for a quick summary.

Day 1:

I initially saw the shoulder therapist who had a 5 minute look at me and decided I had to see the surgeon immediately; he had a good look at me and sent me for a CT scan then I went back to see him after the scan.  He reviewed the scan with me and talked us through the images, stopping to point out the "gaps" in my scapula where he had drilled holes!  The scan was really looking for scar tissue or bone spurs that might be "sticking" my shoulder and preventing it moving and it showed no evidence of these.  This is really good because it means I don't need more surgery, but it does mean the issues are more complex.  

The other good news was that the actual surgical repair looked good on the scan.  The muscles are definitely attached and "firing" but they are just very weak and aren't really able to work properly right now because my shoulder isn't really working so I'm not regaining "normal" movement.  Dr K did tell me that it would take time to build strength anyway and it was like some of these muscles are "starting from before zero" so regaining any kind of strength will take a long time.  Even just enough strength to hold my head up unsupported!

The scan did show I have pockets of fluid in a couple of muscles and these correspond with some areas of bad pain, so Dr K gave me two cortisone and novicaine injections into the pockets that were accessible (a couple were too close to my ribs to stick a needle in). Ouch.  The novacaine was supposed to numb it quickly but I didn't get the numbing sensation and the cortisone can take a few weeks to work but hopefully it will reduce some inflammation.  They don't know what causes the fluid though, it's just a sign the muscle is "unhappy".  The injections really hurt.  My body really protests against needles being inserted deep into my muscles (surely that's normal?!) and between the cortisone injections I had last week, last year, my 4 EMGs and a course of acupuncture I think I must be running at about 50 muscle jabs in the past 14 months!!

They did tell me that I was a "complex case" from the beginnning, and I had such a huge amount of damage in the most complex joint in the body.  I was also told, "You are not an island." Very profound, and the therapist's way of telling me they were there to support and help me right to the end of my recovery.


Day 2: 

The plan today was to spend some time doing exercises with the shoulder therapist but given my lack of mobility and the scan's lack of... um, well anything really, they had one of their physical therapists - who has dealt with the rehab in many scapular reattachment cases - assess me.  Her assessment:

"Asking your shoulder to work right now is like putting a stick through the spokes of a bicycle and asking you to ride it uphill really really fast."

She also said:

"Last week I had a girl in here presenting with very similar issues as you and she had 12 degrees of internal rotation and I didn't think I'd ever see worse than that and you have 7 degrees.  That's not something you want a gold medal for."

I should add, she was very nice!  The upshot is that the muscles in the shoulder need to fire sequentially and work together for any shoulder and arm function and mine are just not doing that but they're not entirely sure why not.  I am also still having major pain issues that seem to have a neurological/ neuromuscular/ nerve-based connection so they wanted me to see a rheumatologist about that.


Day 3: 

First I went back to the orthopaedic clinic and the therapist went over the series of exercises they want me to do for two weeks.  They are even more simple and basic than my last lot of exercises and the aim is to do very simple repetitive movement on a "closed kinetic chain" to re-teach the muscles how they should work in sequence.  CKC movements are where the arm is supported at both ends for stability - so the body provides one end and the hand pressed against a wall or a table the other; the idea is that the muscles are not required to do as much work and can do the movement properly without the strain - the arm is very heavy!!

After that I went to see the rheumatologist who specialises in Reflex Sympathetic Dystrophy (RSD) also called Complex Regional Pain Syndrome (CRPS).  He was a very nice doctor, took a lot of time going over everything with me, taking my history and examining me, but this appointment was really the low point of the week.  And that's really saying something given everything that had come before.

RSD/CRPS is a condition where the nervous system responds to any kind of stimulation (touch, movement, even a gentle breeze on the skin) with a hypersensitive pain response.  Symptoms include swelling, changes on the skin, change in temperature, extreme skin sensitivity, parasympathetic responses to pain (like the sparkly lights, nausea and dizziness) and I tick all the boxes.  There isn't really a question that I have some of these issues going on and that my nerves are just screaming PAIN PAIN PAIN with every movement or sensation that affects my shoulder and arm.  But the diagnostic criteria state that the level of pain is disproportionate to the initial injury - which is not true in my case.  The million dollar question is what causes the pain - is there a mechanical issue still sparking all this pain? Or is the pain response "stuck" and now the main problem?  In other words, making one go away should fix the other problem, but what way round does that go?  A bit of a simplistic explanation, but really the crux of my problem.

The specialist was very focused on pharmaceutical options and drug combinations and felt I had "classic" RSD.  He recommended several types of drug and said this would not go away without the drugs.  He also said people can just have this forever and that drug therapy can take a very long time to show any effect.  Both Mum and I asked several questions about some of the drugs and really felt he did not have adequate answers - certainly none for me that justified taking very strong drugs with potentially bad side effects without actually just giving things more time to heal.

So, to sum up:
           -        nasty condition
           -        might have it forever
           -        need lots of bad drugs

I was incredibly upset after the appointment.  That's actually a massive understatement.  I can barely think about it without getting upset again.

I went back to discuss everything with the shoulder therapist again after that appointment.  They don't think that the basis for my pain is this, but they feel I have RSD issues ALONGSIDE my mechanical issues and they don't want them to get out of control (ummmm.... more out of control!).  There are many reasons for my continued lack of mobility and ongoing muscle pain - for example: possible tiny adhesions that don't show up on a scan; possible tiny adhesions wrapped around nerve tissue; "shrunk" muscles - where the sarcomeres (this was my new word for the week, these, apparently, are the building blocks of the muscle) actually reduce in number and this completely removes the muscle's ability to expand; the mysterious pockets of fluid; ongoing inflammation... the list goes on.

After I calmed down a bit, we did make a plan that I can move forward with.  I do not want to start the drugs that were recommended.  I feel that they are very much a last resort - the average recovery time for this surgery is 8-12 months and even though it seems like an eternity, I am still "only" at 6 months.  Also, I have actually tried a couple of the milder ones he recommended prior to my surgery and they didn't make any difference and they had nasty side effects.  

My plan is to work through the physiotherapy exercises designed to address these issues; to see a specialist physio in Philadelphia who has experience in this area; to talk to our friend here who is a neurologist about the neuromuscular issues - I have appointments with both of them this Tuesday.  Despite my raging hatred for needles,  I am also going to try acupuncture again - our neighbour is a doctor and he went to China to become an acupuncturist and has his own clinic now.  I also borrowed a TENS machine from my physio to see if it helps with my pain and it is actually giving me the most pain relief I have had since my surgery.  It is my new favourite thing, even if I look kind of strange walking about everywhere with wires dangling from me.... oh well, I guess I should be ok as long as I avoid airports...

Last week I felt completely dejected and really disappointed not to have something "easier" to do - if they wanted me to do 100 exercises a day for a year, that would be easier to deal with.  It's so very difficult to find a balance here as they want me to try to use my arm and to try to move it, but they also want me to limit my pain and the two are kind of mutually exclusive right now.  It's been a really hard week to get through but in between the tears I feel this furious determination not to let this beat me and I am trying (not entirely successfully) to focus on that.  I did tell the therapist I intend to do a handstand again one day..........

I think I have failed miserably on the "quick summary" but in my defence, I really could have written so much more!


Yesterday I saw a quote I loved on a photo frame:

Masquarading as a normal person day after day is exhausting

                       ~ Anonymous

Hoping for answers

Tomorrow we are leaving for our FOURTH trip down to Lexington, KY.  I am really hoping it is going to be as worthwhile as the last three journeys.  I would like to hope that this will be the last trip we have to make to Lexington, but I honestly don't know if that is realistic.

At the end of last week, Angelo my physio took some measurements while he was doing my passive range of motion exercises and it wasn't good news.  My measurements have actually got WORSE since June.  My shoulder capsule is tighter than it was before.  He did tell me that it's not by a huge amount, but it shouldn't be going backwards at all.

I was very upset.  I don't know what I can do to make a difference.  They gave me loads of exercises to do and I did them religiously and then they told me I was doing too much, my muscles all needed time to rest and recover.  So I dialled it down.  I followed the new exercises since June very carefully.  I did exactly as I was told. I did not do too much.  I did start to feel a bit better, but I don't feel that I can do LOTS more on a functional level.  I feel so frustrated that the advice I keep getting is that I need to rest and heal.  I am now 24 weeks post-surgery.  I thought that at this point - surely! - I would be concentrating on rebuilding strength and flexibility; not on still learning how to move my shoulder certain ways..... or even worse, NOT being able to move my shoulder certain ways.

My parents say they think I am holding myself funny, or that I'm not trying to use my right arm and I feel so upset to hear that is what they see.  It's not that I don't try to use my right arm - I really do try - it's just that it doesn't really work properly.  I simply CAN'T make it do certain things, I don't know how to explain it because I've never experienced anything like it before but when people say that I "can't tolerate that movement" or that I "need to relax the muscles" or that I need to "try drinking with that hand" and they are just pointing out what they SEE, what they don't see is how many times I try to do the movements in front of a mirror, in pain, just to see if I can MAKE myself move that way.  I CAN'T.  I hate the thought that people think I'm not TRYING to move because I try all the time.  But I just can't make my scapula move.  

There is a possibility it is quite literally stuck down by scar tissue.  I don't know how this can be fixed.  I have had some incidents that hurt like hell, usually end up with me sweating, crying, feeling nauseated and seeing sparkly lights and black spots; I have come to recognise these as scar tissue breaking up.  But they don't seem to give me any freer movement, as you'd think they might.

One doctor last year suggested I might need to be put under anaesthetic and have my shoulder moved quite violently to break up the scar tissue - if that is actually what is sticking it.  I am actually at the stage that this option sounds attractive. As long as they gave me adequate pain relief for afterwards.  The longer the pain persists at a high level, the less I feel I can tolerate it.

I have had quite a lot of scar tissue breaking up in the last few weeks - and in fact since my surgery.  I've been told that it's happening more than they'd expect.

I know my pain is less than it was immediately after my surgery when it was just unbearable all the time, but it is still pain that I'd rate about an 8 or 9 out of 10 when it is at its worst. Mostly, it's probably about a 6 although it rarely goes below that.  I still need very strong painkillers every day (and muscle relaxants, and anti-nauseas, and sleeping tablets).

This trip I see the surgeon on the Monday morning and then the shoulder therapists are going to work with me on Monday, Tuesday and Wednesday, so we are hoping that spending that bit longer with them will be productive and will help me move on from here.

It's been really hard these past few weeks as we've had friends and family visiting with us from home and I've been too sore and too exhausted to do all the things I'd have liked to do with them.  It is still hard for my posture muscles to support me when I'm sitting, so sitting with my arm and head unsupported for any length of time causes my neck to spasm and me to get very dizzy and sore.  They told me these muscles are basically "starting from scratch" and they have no endurance and it will just be time they need.  There is nothing I can do that is helpful.  I do have little exercises, but I'm not allowed to do lots of them as the muscles very quickly tire out, and the same symptoms appear when the muscles are tired.

So I am feeling very flat right now and I honestly don't know what I'm going to do if I don't get some answers on this visit.  I am really struggling to cope with the pain and complete lack of function in my right shoulder and right arm.  Hopefully they can offer me something NEW that will give lots of improvement. 

"Insanity: doing the same thing over and over and over again and expecting different results."
          ~ Albert Einstein

Be Brave

Today Mum received a mysterious package in the mail.  I watched her open it, my curiosity piqued. She handed my sister and I little packages identical to the one she held. Surprise pressies are the best! So what was the surprise?  A fantastic idea: "Bravelets".  Ours have a stainless steel bar that says "be brave" and a lime green leather cord - for Lyme awareness. 

You can buy Bravelets here and support your favourite cause in doing so.  $10 from each of our Lyme awareness Bravelets goes right to Lyme research.

  

I really love these because they are well made, a nice little piece of fashion jewellery but with a worthy cause!  They're unusual, so when someone comments on it I am looking forward to saying "It's to help raise awareness of Lyme disease" and hope that every time that happens, someone else learns about Lyme and passes that on to someone else too.

In addition, the very simple, yet eloquent, "be brave" will remind me every day that is what I am striving for.  Feeling linked to the Lyme community through this bracelet, "be brave" will also remind me that there are others fighting the same battles and collectively we can be brave and together we can beat Lyme.

Share Bravelets with your friends and help spread awareness of Lyme disease

http://www.bravelets.com/product-category/lyme-disease/

“I may not have gone where I intended to go, but I think I have ended up where I intended to be.” ~ Douglas Adams

Faster, Higher, Stronger

In the spirit of the Olympic fever that is sweeping the world, I have chosen the Olympic motto as the title of this post.  I do love the Olympic games.  I always wish I could have competed at that level and even now, my muscles twitch as if attempting to imitate every gymnastic element I watch.


When I was about 8, I watched a documentary on Russian gymnasts who were sent away from their families to attend a boarding school where they trained every day to be Olympic gymnasts.  Gymnastics was already my favourite sport at this age, and I did already do gymnastics.  The documentary made a big impact and I worked out that I would  need to be in the Olympics in 1996, age 14, the optimum age (at that time) for a female gymnast.  I thought long and hard about how I was going to do this and (apparently) came back downstairs long after being put to bed and told my parents, deadly serious:  "I want you to send me to Russia."


Needless to say they didn't agree, but there is a little part of me that always wonders if I'd have made it...


I did, of course, develop a real love for sports acrobatics and still think it should be an Olympic sport. These photos are my trio competing in British Finals in my final year of competition (before another broken bone ended my gymnastics career!):

                 

Left: I am on the base, Colette in the middle                                    Right: Colette on the base, I'm in the middle                         & Amy on top                                                                                        & Amy on top

Faster, higher, stronger means something else to me right now.  Every day as I am doing my exercises I am trying (really really hard) to improve on the day before.  Sometimes physically and emotionally.  It might not be the kind of faster, higher, stronger that Olympic athletes work towards, but I think that it is an inspirational motto for life; for everyone; and especially for those recovering from an injury it applies in a more literal sense.  It doesn't matter what you do, you should always aim to achieve the best you can possibly achieve.  For some lucky people, this might mean an Olympic gold medal.  But everyone has their own personal goals and celebrated achievements.

In saying that, I'd like to add my voice to all the Team GB support - I will be cheering them on from across the Atlantic and hope their hard work and years of training for this moment will be rewarded. Go Team GB!!

I would also like to add that my greatest achievement this month has been managing to get my Intelliskin Posture Shirt on all by myself! And actually, that was no small feat!!

FASTER ~ HIGHER ~ STRONGER

Don't Look Back

I got this photo-quote via a friend from 'Hayhouse Daily Meditations' on Facebook.  It really resonated with me and I think it manages to say so much with so few words.  June was a tough month (the 'anniversary' of my accident!) and I think adopting this as a mantra might remind me that I am moving forward all the time, simply because the world keeps spinning.

It's been two weeks since I was back in Kentucky for my second follow up appointment, and 16 weeks since my surgery.  It was absolutely worth making the 1200 mile round trip again.  The information and feedback I have gained each time has been invaluable.  


The good news is that the actual repair has healed and my scapula position now is "outstanding" - it is lying flat, no longer 'winging' - and the reattached rhomboids and lower trapezius muscles are weak, but engaging.


The not-so-good news is that my muscles and shoulder capsule are VERY tight.  When I lift my arm my entire shoulder moves with it, as if everything is stuck together.  This is partly from the immobilization after the surgery, and partly because so many muscles just weren't working, or weren't working properly since last June (did I mention that's 18 muscles??!).  I also have developed Complex Regional Pain Syndrome which is pretty much described by its name.  I have some strange symptoms - a rash, strange skin sensations, burning, extreme sensitivity to the touch and ongoing pain that fit into that diagnosis.  I've been doing some reading on it and no-one really seems to know what the cause is but it's possible it's linked to some nerve damage (but not tears or avulsions in my case) or that it has happened because my brain has had pain signals for so long, so everything just gets hypersensitive and it associates everything with pain.  I've been put back on gabapentin as it can help with nerve pain. I have some other things to try, like having a towel rubbed over the area to de-sensitize it and then when I can tolerate the towel on the skin, a rougher material can be used.  


In terms of my exercises, I gave them my sheet from physio and they said, "you're not doing these all in one day, are you?" Ummmmmmmmm........ Yes. Twice a day.  Too much, apparently.  I think my body knew it was too much but my head was telling me I had to work the muscles to get better.  They have reduced my exercises from about 20 twice a day to five exercises three times a week.  I am under strict instructions not to do any more than this right now! I do also have some stretches to do five times a week. I have to cut back my physio from three times a week to twice a week, still getting passive manipulation to try to loosen thing up.  I've to add in some massage too, as I can tolerate it - this is to help with some tight muscles, spasming, breaking up scar tissue and the de-sensitization too. I am going to attempt to brave a massage appointment this week!


They told me that constantly working the muscles is not giving them time to heal, so they are constantly spasm-ing and sore from trying to do exercises that they are not quite ready for yet.  It's not that I was doing the wrong exercises, it's just that it's too early for them.  I was constantly told "this is not normal shoulder surgery"!!  And they also kept saying I was "only" three and a half months out.  My recovery should be 8-12 months.

After the appointment, I really felt relieved.  Although it's frustrating that I've not quite managed to amaze everyone with superhuman healing abilities (yeah, right) and that it is going to take a long time to heal and get full function back, I was just SO tired and sore trying to work through the exercise regime.  My physio said he felt relieved too.  Having never treated this injury before, and having instructions from Kentucky, he was concerned that I was not progressing fast enough and that perhaps he should have been doing something more, but I couldn't tolerate anything more. So, relief all round!

I also have a new 'Intelliskin' posture shirt.  It is supposed to provide support for the posture muscles and reduce fatigue, which in turn will help reduce my pain.  It's not really high fashion:

As you can see, it is VERY tight.  If someone had videoed my first attempt at getting it on, it might have been a You've Been Framed winner.  I still can't push with my right arm, my movement is still very limited and resisting with my body is still sore.  Getting a normal T-shirt or jumper on has become a highly skilled process!  This took three of us - my Dad holding my sore arm for support, my Mum attempting to get the shirt over my head and into a position that let me get my good arm through and me giving instructions and the occasional yelp.  When they asked me if I wanted to keep it to try, I said yes because I honestly thought I might need to be cut out of it!


However, very quickly I started to feel some relief in the muscles down my side (serratus & latissimus) and it has been helpful in relieving tension on the left side of my body and neck too.  And we are slowly perfecting the process of getting it on - it only takes two now!


Since I got it for free and it's helpful, I'll do a wee bit of PR for the company! The Intelliskin website has some good information about how the shirts work:

 IntelliSkin PostureCue™ products dynamically supports muscle and joint injuries, decreases pain, and improves sensory motor function. IntelliSkin improves your sensory motor function to instantly help your body move better and to correct muscle imbalances that are the cause of most injuries, pain and poor posture. Unique patent pending design stimulates the nerve endings in your skin to achieve a predictable neuromuscular response, which stimulates muscles that are overused and tight to relax and lengthen while weak, underused muscles are stimulated to tone and support you in the way nature intended.

I see on their website that they are launching a zipper version so I think I might buy the sports-bra zipper one for when I have to get dressed myself and I want to hide it under my clothes!

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.”

          ~ Buddah

Lexington here we come..... Again.....!!

Tomorrow we hit the road and head back to Lexington for my three (and a half) month follow up appointment with Dr K.

Hopefully he will have lots to say and will be able to shed some light on the ongoing pain and limited movement I am having; the repeated "yowouch!" of scar tissue breaking up; and I'm hoping he will be able to tell me that, even if I'm feeling frustrated and annoyed, I am actually making good progress and not falling behind.

Unfortunately, I'm a little bit worried it's not going to be that simple, and he might have more to say, and I might get tortured (well, this is pre-planned, so torture will happen, but hopefully it will be gentle exercises and no crazy machines!) ...  but I'm keeping my fingers crossed until the appointment anyway. Positive thoughts!!

The last few weeks have honestly been really hard.  My Lyme infection has 'reactivated' and this basically means my body was weak after surgery and so all the Lyme spirochetes come out to play. I get lots of old symptoms, mainly zero energy, fatigue, weakness, and lots of aches and pains, especially headaches and migraines.  Having been here before and knowing what to do about it does have its advantage, so I am on extra antibiotics, extra herbal anti-microbials and have new antibiotics to start next week too.  They are working.  Unfortunately they make me feel worse before I feel better, so that's how I know they are working.  The antimicrobials and antibiotics work together to try to get the spirochetes in their active form where the abx can kill them.  Killing off so much bacteria means the body then has to eliminate all the toxins the dead bacteria produce, so you get a bit of a toxic overload.  I take some other supplements that help with this, so it helps to reduce the negative effects. At least I can address it quickly and aggressively - I know it makes me feel worse before I feel better, but it worked before, so hopefully it will work again.

This does make it harder for me to focus on my shoulder.  I know I have to, it is my priority, but feeling like sleeping all the time makes physio even harder!!  I am making some improvements with my shoulder.  I do have more movement and I am managing to do little things - I wore a pair of jeans the other day because I managed to fasten the button! I took some photos with my camera and I didn't have to hold the camera upside down so I could press the button with my left hand! 

In terms of physio, I'm not really making big steps forward.  Things feels like they are calming down and I get better and so I get a bit more movement - and then I get the scar tissue breaking apart and it gets really really painful and sensitive again, then it calms down, then it repeats the cycle.  In the long run it is a good thing that the scar tissue is breaking up, so I'm just focusing on that!

And just to put it all into perspective I came across this anonymous quote:


"Don't worry about life, you're not going to survive it anyway!"


Hopefully I'll survive a good bit longer than this though....!!

Retail therapy, scar tissue & persistent spirochetes

First things first. NOTHING can beat a good day of shopping.  Seriously, retail therapy can really cheer you up, make you momentarily forget that you have any kind of problems that this absolutely beautiful bright pink leather bag cannot solve. It's so pink.. such a happy colour, of course I'm going to be happy using that bag... Sold! And this dress. Oooooh. Pretty maxi dress. On sale! Even better, Big smiles. No problems.... well except that I can't try it on because that's way too complicated so I'll just kind of tie it to myself on top of my clothes (are people looking... oops). Yup, looks like it'll fit.  I do, of course, carry it half way around Bloomingdales draped over my (good) shoulder to free up my hand to examine every other thing that might be better than this one but the dress wins.  It is pretty perfect and I get a further discount too - sold! Happy shopper. 

So that was today. Definitely relished the retail therapy - and with no guilt attached, I still had some gift cards and money from my birthday to spend.  Apart from the shopping, Mum and I had a lovely, very relaxed day browsing the mall and having dinner out - a really tasty brushetta pizza with balsamic pesto and arugula and a chicken, strawberry & goat's cheese salad in Nordstrom Cafe.

Aside from the retail therapy, there really was the Day Out of the House therapy too!! After last week, it was very much needed.


Last Tuesday I was being good and doing my exercises at home when it felt like something ripped underneath my scapula. I collapsed in tears and couldn't stop sobbing.  I did not know what had happened nor did Mum but she was very quickly getting my percocet, muscle relaxants  and anti-nauseas thrown down my throat and getting me back on to my ice machine.  And that is where I stayed until bed time (more drugs) and then I slept.

At physio the next day I explained what had happened, it was still incredibly sore and I didn't really know what was going on with it.  About a quarter of the way into the session I tried to do some of my normal exercises and I collapsed on the bed crying... again.  I just couldn't do it.  Angelo gave me extra ice and STEM time and said I had to rest for a couple of days.

I rested and iced and did some very small exercises very carefully over the weekend. (Although I still cried a bit.) On Monday, Angelo spoke to Aaron in Kentucky who is my contact there.  Aaron said that it definitely sounds as if I broke up a good amount of scar tissue.  He said it happens, it can be horrendously painful.  He told Angelo that when that happens, at this point, their main concerns are their patients' mental states!! (Yes. Admittedly, I was going a bit crazy.... please tell me I've not done more damage... please tell me I haven't broken it..... waaaahhhh!!) Their conversation was a good one.  It was very reassuring to hear that I have broken up scar tissue, that they see it happen in other patients too, it is an incredibly painful thing to deal with, but in the long run, it is good to free it up for potential movement.

Aaron also told Angelo that my bone pain is still normal at this stage too.  Angelo felt that in his experience most surgeries involving bone would not cause the pain I still have.  But Aaron said that with the amount of drilling I had done to my bone, they expect the pain to be around up until 16 weeks. Plus, they've never done the surgery on a fractured scapula before, so that might change things.  I'm at 12 weeks now.  It would not surprise me if those goalposts move again when I get to 16 weeks!!  Every time they've said, the pain will be bad for 48 hours, then, the pain will be bad for 3-4 weeks; then, the pain will be bad up to 8 weeks; then to 12 weeks; now to 16 weeks; then...??  It does get a little less each time, but it is still close to unbearable at various times.

The past couple of days things have begun to calm down after last week.  Apparently scar tissue has a lot of nerve endings and they don't really like being ripped apart inside the body so they.... ummm, protest a lot.  Basically I felt like my shoulder was on fire but it is calming down and hopefully I can take a step forward again this week.

I also saw my Lyme doctor this week as I've had a resurgence of Lyme symptoms since my surgery which is pretty common, apparently.  Basically if the bugs are still there, they're still going to attack and a weak body is like hunting season for spirochetes!  For the next two weeks I have doubled my abx doses and increased my herbal anti-microbial doses and then in two weeks I go back to Dr S and he is going to add in another abx.  I do feel better that we can attack this aggressively, but I know the side effects of the drugs and the herx reactions produced by killing the spirochetes will probably make me feel even worse before I get better.However, it has to be done and I will get through it. Especially with some more retail therapy I think.... ;-)

I think this quote will have meaning for lots of you, I really think it's spot on.