Friday, May 25, 2012

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.

Thursday, May 10, 2012

10 weeks since surgery

This week marks 10 weeks since my surgery and so there was a lot of reflecting going on at physio today.  It's easy to feel frustrated through this process because I am not seeing obvious progress from one day to the next. I am still in pain, my movement is still very restricted and I am still struggling with my attempts to do "normal" everyday things.

Although I know I am making some progress, when I compare today to yesterday, to the day before that (and so on) there doesn't seem to be much going on.  My accomplishments seem to be managing one exercise without feeling faint; or shrugging my shoulder an extra 1/2 cm!! 

Considering the bigger picture is a lot more motivational. So that's what we did today. I have now been getting physio for 6 weeks and I have made good progress in this time:

Week 1: I still went to physio with my sling. Taking it off terrified me because it felt like my arm might fall off! Letting my arm drop down at my side made my hand turn purple and swell up almost instantly.  Walking with the sling off made me dizzy, things started to go black and I couldn't see anything behind me. I had virtually no movement, and absolutely no strength.

Week 2: I was no longer wearing the sling for support (because I was not allowed to)... although I was kind of missing it at this point! I had little movements - shoulder shrugs and scapular retractions which I struggled with. Most of the movement was passive movement where Angelo very very carefully moved my arm, still keeping it as close to my body as possible.... just to make sure the newly attached muscles weren't ripped off!

Week 3: Every session I start off with some heat, gentle passive movement and my exercise series then end with icing.  Even although my exercises are pretty pathetic and teeny tiny movements, they are really hard work for me and even a 1cm improvement in any movement is a real achievement. In the couple of hours I am usually at physio I do feel like I work really hard, but the movements I'm doing here are still very small and very controlled. After each session, I want to curl up and go to sleep!

Week 4: This week marked a new phase in the rehab protocol that came from Kentucky.  It apparently allows Angelo to move on to torture me! At this stage, healing should be at a place where movement cannot damage the repair anymore and my instructions are less restrictive than before. This means I have new exercises, new movements.... and gritted teeth. This week I was introduced to NMES - neuromuscular electrical stimulation - which is going to teach my brain how to use my muscles again by electrically contracting said muscles.  After my first experience, I am calling it my taser machine. Buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz. Ouch.

Week 5: As each week goes by, I feel as if I am mastering my exercises.  They no longer make me feel sick and things have (for the most part) stopped going black.... just a little sparkly still.  However, just when I think I might be getting into a routine, I get new, harder exercises and the nausea returns!

Week 6: I do have a routine now.  First, get heat into my shoulder area for 12 minutes. Then Angelo comes and tortures me for a while - working on my range of motion and passive movement.  Today he said it was good - he managed to get my arm at 90 degrees to my body, a good improvement in my ROM. Then I do my exercises - use a wooden stick to pull my right arm above my body as I lie on my back and then out to the side. This hurts, but it is getting a little bit easier each time.  Next, I run through my sequence of small movements - shoulder retractions, shrugs, sternal lifts, bicep curls; swing my arms, well swing my left arm, attempt to swing my right... but it is moving. Roll a ball about a table 60 times, wipe a towel against the wall 40 times; isometric exercises - pillow squeezes in various forms; towel slides on a table; overhead pulleys (much to be improved here still - today I had some pretty nasty pops that we think were scar tissue breaking up. A good thing, apparently, but bloody sore.).  Then I get down on my hands and knees, put my FULL WEIGHT through my arms on a wobble board and rock from side to side 20 times. Then comes the favourite - my taser machine, or neuromuscular electrical stimulation to give it its proper name. I HATE this! I swear it feels like being tasered... or exactly what I imagine being tasered might feel like. It re-teaches my brain how certain muscles work by electrically contracting them. That bit's self torture as I have to press the buttons myself.  After that, I am tortured by Angelo again, then I get STEM treatment as I ice down. (Then I go home and ice all night.... love it being numb!)

Looking over those past 6 weeks does reassure me.  Yes things are still very sore, and very hard but in just six weeks I have made a good bit of progress at physio. Everything is far more complicated because my muscles were detached since last June and I'm not just working to get movement back because of the surgery and subsequent immobilization - which would be hard enough - but because of the initial injury and the wasted months that followed. I have goals and aims I hope I can achieve over the next few weeks - before I go back to Kentucky in June.  In addition to physio, I do my exercises three times a day at home too.  And I have been trying to play the piano to help with movement, strength, and also rebuilding the neuromuscular connections.

Sometimes it seems like my surgery was ages ago and I feel that I should have made more progress, but when we break it down like this, I am able to get a bit of perspective on it and realise I am making progress.  However, they told me 5-8 months for full recovery, so I still have a lot of work to do.

Wisely and slow. They stumble that run fast.
              ~ William Shakespeare