The world's first scapula cake... according to Google & Pintrest searches
I am actually writing this from physio just now... where we have all enjoyed the scapula cake!
Later update:
One year ago today Dr Kibler reattached my lower trapezius and rhomboid muscles to my scapula. It has been onerollercoasterof a year and I still have a lot of work to do before I can handstand again... But I have made progress; I am on the road to recovery (bumpy as it may be)... so what better way to celebrate than with cake?!
All the baking, mixing and icing made by my Mum (and as delicious as always!) and I managed to do the design myself - mostly left-handed (can I consider acquired ambidexterity to be a benefit of the surgery?!). I did search online for some design inspiration... apparently nobody's ever made a scapula cake before... imagine that....! Between appointments at my physio clinic and doctor's surgery today, the cake is now ALL gone!
I wish I could have shared the cake with everyone who has helped me this last year, I am especially thankful to Dr. Ben Kibler and Aaron Sciascia (as well as many additional staff members who dealt with me while I was under anaesthetic/ barely conscious and on follow-up visits) at the Lexington Clinic in Kentucky; Dr. Sami Khella and Marty Kelly, DPT at Penn Presbyterian Medical Center (University of Pennsylvania); Angelo Labrinakos, DPT (and all his wonderful staff) at Kinetic Physiotherapy in Downingtown, PA; Dr. Len Schuchman my American PCP ('GP'); and Dr. Gerry Williams at the Rothman Institute.
I'm sorry I didn't get to share the cake with you all... I'm sharing the photos instead! I am sincerely thankful for all your ongoing help... and I will be even more thankful when I win my (proposed) cartwheel competition with Angelo one day!
"The greater danger for most of us is not
that our aim is too high and we miss it, but that it is too low and we reach
it."
After I had seen the specialist physio, two weeks ago now, my Mum and I were talking in the car, thinking about how crazy this year has been. When I was diagnosed by Dr Williams at The Rothman Institute in Philadelphia (in January 2012), he pointed out my rhomboid muscles to my Mum - if you pinch your shoulder blades together, the kind of long 'bumps' or 'hills' that appear between the scapulae and the spine are the rhomboids. He said, "I suppose you were born with rhomboids?"; "um, yes." He then pointed out to my Mum the place on my back right shoulder where there seemed to be a groove, instead of a 'bump' - no muscle.
When we saw Dr Kibler, he did the same thing. He calls it a 'divot' - basically the same thing, a visible deficiency where the muscle should be. It's hard for me to see it properly because it is on my back, but I have managed to set up mirrors at home and see what they were talking about.
Since the surgery, at my major follow up appointments there are certain things I'm always asked to do - strength tested, resistance tested, range of motion tested, small movements tested, etc. Usually my Mum is in these appointments with me.
After the most recent appointment with Marty my Mum said to me, "That's the first time I've seen your muscle move." Turns out, this entire year, in all these appointments, my Mum has been terrified the surgery did not work properly because there was no sign my muscle was moving yet. Another thing I've been told in the past couple of weeks that nobody wanted to mention before! However, given she has now told me, and the muscle is moving, I am delighted I - and she! - don't have to worry about that anymore. Unfortunately it is continuing to protest severely when I try to use it.... but it's ok because I found this poster (also on Pintrest):
And I think perhaps I'll make 100 copies and put it up everywhere... just for some added motivation!
Every day I time I write this blog I wish I could start it with something really positive - some amazing progress in my movement, or the magical disappearance of my pain... or the magical discovery of a drug or concoction of drugs (herbs, teas, whatever... I try them all) that has made my pain vanish (not only would that be great for me right now, I reckon it might make me rich too...) However, every time I sit (lie) down with my computer and start to type it always feels like my reflections are negative. I hate to seem negative, and most of the time when anyone asks how I'm feeling, they rarely get the full, honest answer. It seems so much like complaining. Although writing feels more like reflecting; therapy... even if I still have to look forward to the time the reflections are more positive. This week feels a bit like it's just been one of those weeks again. My pain got worse on Tuesday night and really hasn't eased in that specific area since then. When the pain increases, all I want to do is sleep; except (as yesterday's blog explains) I don't sleep at bedtime - I take all these crazy drugs that I HATE that I'm still taking, sometimes they work well, sometimes they just take the edge off for a short time and it's not enough for me to fall asleep; I end up topping up my ice machine at 4am; topping up the drugs at 6am and then eventually falling asleep.... all damn day. I've tried the very logical - just make yourself wake up early and you'll go to sleep early. Nope, doesn't work. I've even tried - several weeks ago - just giving up on sleep. One day, late last year, I went to physio on zero sleep, had a normal day and then still couldn't sleep until after 4am. I think I said this before, my Doctor reckons I should just give in to my body's time zone and try living in Hawaii or Tahiti. Good plan. In the meantime, trying to get comfortable in between (literally) a dozen - maybe more actually - pillows, hot water bottle and ice machine shouldn't be THIS HARD!!
Every day, I always do my exercises - I do have a new one this week. I have to try to strengthen my subscapularis (muscle under my scapula) by pulling on red tubing. Doing this with my right arm makes me feel like I am getting really strong - I can pull! - I'm improving! - and then I do it with my left (just for balance) and my new-found illusion of strength quickly dissipates. The tubing is not very difficult to stretch. Anyway, I'm taking what I can get, I could barely tie my shoelaces a few months ago! And the plan behind this is that it could... possibly, maybe, perhaps, theoretically, be the case that if my new pain is actually the scapula 'unsticking' and the pain is perhaps, maybe, possibly caused by the bone pulling on all the weak muscles, then it could... possibly, maybe, perhaps... be reduced by strengthening the subscapularis muscle which would hold it in place. This would be a good thing. Well, really, it's absolutely all relative, but in my case, right now, IF that is the case, it would mean what my physio has been trying to do for 3-4 months is actually working. It was working before; in a gentle way, my measurements slowly increased at the end of last year; my arm movement (i.e. the head of the humerus was moving and not stuck) was better and very s - l - o - w - l - y, certain arm positions were achieved, mostly with assistance at the moment IF, however, this pain is coming from scapular winging, it means the scapula is no longer completely stuck down by scar tissue and I'm hoping that might mean more options, faster. I see my specialist physio, Marty Kelly on Tuesday morning in Philadelphia so I will be all prepared with questions and hope that he will see some small improvements since November. However, I tried to read up on "frozen scpaula" again today and found that on Google, Ask and AOL, my blog is the first hit in "frozen scapula". So, that's kind of cool, but totally not helpful in my quest to find more information! I've love to hear from anyone who stumbles across my blog while searching for their own information - I believe we all have useful things to share. In the meantime, all I can do is TRY - as can anyone, everyone, with everything we all have going on. So I have selected Pink's song and I'm going to see if I can find the live dance from the AMAs to put below the lyrics. Let's consider it a motivational PINK (who's just awesome anyway) song of the week. This week is about TRYING.
"Try"
PINK
Where there is desire
There is gonna be a flame
Where there is a flame
Someone's bound to get burned
But just because it burns
Doesn't mean you're gonna die
You've gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
*
* * *
* *
Ever worry that it might be ruined
And does it make you wanna cry?
When you're out there doing what you're doing
Are you just getting by?
Tell me are you just getting by, by, by
* * * * * *
Where there is desire
There is gonna be a flame
Where there is a flame
Someone's bound to get burned
But just because it burns
Doesn't mean you're gonna die
You've gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
Gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
Gotta get up and try, and try, and try
And for some amazing extra super motivational PINK :
(As usual, I don't own any music/ videos etc. All linked to Youtube and artists accredited)
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.
