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.