Friday, September 28, 2012

"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

Sunday, September 9, 2012

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