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.

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

It never rains but it pours...

This is how my life feels right now.  All the stress with my shoulder has weakened my body and my Lyme symptoms seem to be taking over again. I saw my doctor last week and he thinks that I have probably lost about a third of my progress because of my shoulder.  I have all kinds of symptoms again - headaches, leg pains, flu-y type feelings, sweating, shivering, sore teeth, upset stomach, visual disturbances, fatigue and tiredness, unrefreshing sleep. I also have a rash which may be Lyme-related or may be an allergic reaction and an ingrown toenail.  Oh, and a sore shoulder!


I have been reading a lot of Lyme literature again, kick-started by this BBC article about a new study into chronic Lyme disease.  Basically, there are two arguments wrt "chronic" Lyme.  The standard argument perpetuated by official authorities is that Lyme disease is easy treated by one month of antibiotics and then you're cured (even if you still have symptoms). The second argument, supported by Lyme-specific research groups and Lyme patients is that people with disseminated Lyme disease - where the infection becomes systemic - need long term antibiotics to treat a more complex infection because one month of antibiotics doesn't work in these cases.  The problem is that there is not ONE reliable test that can confirm - or exclude - a Lyme diagnosis.


The article (which, as usual, is full of misinformation about Lyme) discusses a new method of diagnosis where uninfected ticks feed on someone with disseminated/ long-term/ chronic Lyme and then the ticks are tested to see if they have acquired the Bb spirochetes that cause Lyme.  A study on primates showed this did happen.  Basically the study could "prove" that it is possible for Bb spirochetes to survive a course of antibiotics.  I never understand why this is so controversial given that other bacterial infections (e.g. TB) and even acne require antibiotics for longer periods of time.


It's actually more interesting to get into the real microbiology of Lyme spirochetes and learn that they are very clever, very adaptable little buggers that can morph into various forms in order to avoid capture by the immune system. One study (in mice) actually showed that the spirochetes could stop the immune system from detecting them as they invaded the lymph system.


In a way it's comforting to read other people's stories and experiences. This site has lots of them.  I read a particularly interesting story on there this week about a physician who got Lyme.  She was ill for years and years and saw many doctors for various symptoms before she eventually was treated for Lyme. Even although she's a doctor, she was still dismissed by other doctors who didn't take her seriously because her symptoms seemed so disparate. There are hundreds, probably thousands, of stories online about people's Lyme experiences and they are all very similar. 


No-one knows why some people get very ill with it and other people manage to fight it - or never develop it after a bite.  I suppose it's just the same as some people being allergic to certain foods, or getting acne, or having a low alcohol tolerance.  Everyone is different.  There are various theories, but no answers yet.  It does seem that the longer a person has an infection untreated, the higher the bacterial load on their system, and the worse the symptoms become - pretty simple really.


So back to my situation right now... It is also the case that for whatever reason, spirochetes attack the weakest parts of the body, or attack when the body is weak.  At the moment my symptoms have all resurfaced because my body's basically fighting on two fronts.  My doctor says that right now my shoulder has to be my priority because getting my body stronger - healed - will help my immune system fight the Lyme again.  But as soon as I can handle it we are going to take a more aggressive approach to the infection again, probably with some increased antibiotics.  Right now I have increased some of my natural supplements that help in various ways.


There's not really a lot of information on having surgery while fighting Lyme, so I've not been able to find out much information on it.  It doesn't really seem to be affecting my shoulder as much as the surgery has affected the Lyme.  I suppose it's impossible to really separate them out, but it feels like my energy has to be focused on shoulder recovery and physiotherapy whereas before, all my energy was focused on the Lyme fight.


Another thing that is common in other people's Lyme stories and blogs is the difficulty of explaining it to people. It's often called an invisible illness because it doesn't necessarily make you look ill.  It's hard to explain how much energy everyday things use up when most people never give them a second thought. Even having a shower can use up half the day's energy sometimes - which is an improvement on using the whole day's energy, like it did a couple of years ago.


I haven't written my blog for a couple of weeks because it's not been a great couple of weeks.  I'm sore, everything feels like a huge effort and I want to sleep all the time because I feel like I have no energy.  And I really don't like to moan and to complain so I was waiting to write something good.  But really, I started this blog to try to spread awareness of Lyme disease and to help increase understanding of the illness so I guess that means talking about the bad stuff too.


This is my favourite song this week. Nothing like a bit of musical motivation and inspiration!

6 weeks, making progress

(I actually wrote this on Tuesday 10th April, but the website wouldn't upload it)

Today marks 6 weeks since my surgery which is (apparently) an important mark.  It means I have had time to heal and can now move on to more vigorous physiotherapy without worrying about doing damage to the repair.  This pretty much means the physio has licence to torture me!!

I saw Dr K in Lexington last Friday and he seemed pleased with the way everything is progressing.  He basically told me how I was feeling, where it was sore and tight and why, which was very reassuring and good to know that everything is exactly as he's expecting.  He said there are two factors, one is to deal with the weak, tight muscles and the other is to to get the brain to recognise I have these muscles again.  Basically after not being able to use the muscles for 10 months, the neuromuscular connections have to be rebuilt.  He said it's like the "thinking brain" says "raise the arm" and the "acting brain" goes "huh"?

The trainer in Lexington gave me some exercises to do and really made me work.  I basically rolled a ball about with my hand (or tried to) and moved a towel about a mirror (again, tried to) and then felt like I'd run a marathon.  I really can't believe how much effort and energy it takes just to do a few tiny exercises.  I have to concentrate so hard on every movement to get my arm to do what I want it to! They told me that it's really important I get it moving now so I can make my recovery faster.  If I do well, I am looking at 5 months, if I don't get it moving now it might take up to 12 months - motivation to torture myself!  

They did also tell me that they have never seen this muscle detachment along with a fracture before and bone involvement usually makes things take a bit longer.  The specialist in Philly who sent me to Kentucky said Dr K was pretty much the only doctor in the world doing scapular muscle reattachment surgery.  A sports doc I saw at home said he wasn't aware of anyone in the UK doing it and that Dr K was known worldwide for his surgical technique.  (And Google doesn't know anyone else doing it either!) This means that I am the only person to have had scapular muscles reattached to a fractured (although now healed) scapula!!

The worst pain I still have is to the right of my scar, just to the right edge (lateral border) of my scapula, it still feels bruised and swollen and they told me that's my infraspinatus which is the muscle they had to "get out of the way" so the drill could get to the bone. No wonder it hurts!  To break up the scar tissue I have to get a golf ball and press it between my shoulder and the wall and then roll it about for a few minutes.  OUCH!! 

So the golf ball makes me want to cry, rolling the ball on the table makes me feel sick and then "washing" the wall with a towel brings on the blackness.  Mum reached me with a chair just in time at physio on Monday - I almost hit the floor!

It is definitely time to muster as much grit and determination as I can...

"A journey of a thousand miles begins with a single step."

             ~ Lao Tzu

(Im)patience, physiotherapy and turning t-h-i-r-t-y

Last week I turned 30. In all honesty, it wasn't really a great day - not that I had high expectations with my sling still permanently attached, too many drugs to combine (safely) with any alcoholic drinks, and the inability to stand or sit for very long without almost fainting.... So celebrations are on hold until later this year.  Until then I think I will continue to be 29 (and 12 months).


Seriously, I don't feel 30. Thirty years is such a long time! When I was younger 30 seemed like a proper grown up, time to have it all pulled together and life mapped out.  I wonder if anyone ever gets there or if it just seems like it when you are younger....  Turning 30 seems to  demand a real review of life-so-far and, for me, I'm really not where I thought I would be.  Looking back over the last seven years is difficult and it's so unreal sometimes to consider how long Lyme affected me so severely. It's so easy to think about how rubbish it's been and to wish things had been different.  But that doesn't change anything, of course, so looking forward is far more important.  Mum read something to me out a magazine article, an interview with the actress Julianna Margulies in which she said when she turned 30 her mother said, "honey I wish I knew how young I was when I was 60!" So I guess it really is all about perspective! And I think the best thing my Mum said to me this week was, "Gail, you should be delighted to leave your twenties." Maybe she's right... here's to a much better decade!


I did have a fantastic cake - all Mum's creativity:

On Thursday I started post-op physiotherapy for my shoulder. I was really worried about it.  Things are improving, the pain is less, but it's still severe. At the moment sitting unsupported or standing still makes me feel nauseous and dizzy and as if I am going to faint.  Moving my shoulder at all makes me feel worse - things start to go black at the edge of my vision, I can only see straight ahead and I have to close my eyes and concentrate really hard to stop myself blacking out.  This is partly from pain and partly coming from a couple of muscles that attach from the scapula into the back of the head.  Because they haven't been working and they are really weak they are causing these symptoms when they contract.  This week I am also allowed to take my sling off.  They told me I would start to feel ready for this and I would feel as if I don't need it anymore.... nope! Not yet.  At the moment my arm feels like a dead weight when I take the sling off.  I really struggle to move it at all and my hand swells up in minutes.


So I was feeling a bit concerned that I wasn't progressing quickly enough and I thought physio would be a real struggle.  Actually, it made me feel a lot better (not the exercise bit!).  Apparently patience is required! My physio, Angelo, is fantastic.  He had spoken at length with the clinic in Kentucky, he had the therapy protocol from them, and most importantly I was exactly what he was expecting.  He really reiterated the point that I've had major shoulder surgery and then a long period of immobilization and this is all going to happen really really slowly.  Proceed with caution, it seems.  For the first few weeks I have teeny tiny movements and a bit of teeny tiny passive movement (where the therapist moves my shoulder, I do not engage the muscles).  It is important that we don't do anything to damage the repair and tear the muscles off the bone again...!!!  In saying that, even the teeny tiny movements made me feel dizzy and the blackness started to creep in, but I didn't faint.  In terms of taking the sling off, I have to try to increase the time I can keep it off (unsupported) by a few minutes each day.  I managed 20 minutes twice today. Baby steps....


Everyone at the physiotherapy place was really impressed with my scar - it looks great now, it is healing really well.  They reckoned it looks like a plastic surgeon did it - and I guess they see a lot of scars.  This is my latest photo:

After all my reflecting this week, and for certain friends (you know who you are!) I think this is the perfect quote: 

"Life is what happens to you when you're busy making other plans."

               ~  John Lennon

Things I have learned from having shoulder surgery

1. Your shoulder is involved in virtually every movement you make - head, neck, back, arm, core - everything. Ok... I really realised this 9 months ago when I got the injury but these past 3 weeks have made this excruciatingly obvious. Things like getting up from a chair (or the toilet!), going up/down stairs, or bending to pick something up are all little daily challenges. However, I am developing new skills to help out. I can now pick up a hairbrush from the floor with my toes... note, dropping things is not good! I can also put off a light switch with my foot, tie knots with my teeth, and plié (ballet style) to bend, sit, or stand up.



2. Buttons, zips, laces & drawstrings on trousers are a bad idea. Tight fitting leggings do not work either as pulling is impossible and attempts to wriggle or shimmy out of them are even more impossible. Loose sweatpants with an elasticated waist are the best solution. Underwear - not important!



3. Also currently unimportant - showering and hair washing! With my super sling/brace/pillow permanent attachment showering is impossible. Baby wipes are fantastic. I do not smell!



4. Eventually hair washing becomes a necessity. After much discussion and consideration, I managed this with a high stool, shower head attachment, kitchen sink and my mum! And LOTS of towels (I cannot bend or hunch). To avoid repeating this mess too often, Tresseme has a great dry shampoo. And I love hats.



5. Pillows are my favourite thing at the moment. I have 13 on my bed holding me in place while I sleep since I still can't lie flat. I take them in the car with me. I took them into restaurants pre-surgery to support my arm. I even had two full-size pillows on the flight over here before xmas... hopefully by the time I fly home that won't be necessary!



6. Borrowing the recliner from a friend was such a good idea. The hospital recommended sleeping on one at first and some of our friends organised this and put it in the house while we were in Kentucky. I am so grateful for that! For 2 weeks I couldn't get into bed (even now I have a stepstool beside the bed to climb in. Very posh-Victorian-lady-style! Although maybe not so glam with a metal stepping stool...) The recliner is still the only place I can sit comfortably during the day... with 5 pillows.



7. Shoes and socks are impossible. I can't reach my feet, never mind pull on a sock or shoe! I love my Ugg slippers.



8. Shoulder surgery hurts. Funny people keep telling me that NOW. (Not that I really had a choice in the matter, I needed fixed.) My Dad said his rotator cuff surgery was worse than his hip surgery. The nurse said this procedure is one of the most painful the orthopaedic surgery centre deals with. The receptionist at my doctor's surgery (who had shoulder surgery) said I won't be glad I did it until after about 4 months. My physio says the shoulder is the most complex joint and the worst to injure. So it still hurts. But it's pretty important, so getting it fixed and doing the therapy is worth it.... I hope!!



9. I can't survive without my Mum. She is fantastic, brilliant, amazing, super, awesome, terrific and just fan-dabby-dozy. But I knew all that anyway.

Mum & me in Kentucky the day before my surgery

18 Staples

Two weeks ago today I had my surgery.  The whole thing seems rather surreal - that we drove 600 miles, I had my shoulder fixed, then we drove 600 miles back.  It just seems a bit like a strange dream.  

I got my staples removed on Friday - 18 of them and I think once it heals I am going to have a pretty impressive scar!  I'm not really sure about posting this photo... Mum took it for me so I could see it... but there's a bit of me feels it is worth showing off!! So here is my incision before the staples were removed:

I am told it looks good and I am healing nicely.  I think it's a little Frankenstein-esque in this photo so I will just take their word for it!