Monday, February 23, 2015

Living the life you want

I mark my past decade by babies and surgeries. In 2005 and 2007 my children were born, ironically via a surgical c-section. In 2009, I had a total shoulder replacement on my left side. In 2011, I had half of my right shoulder replaced. In 2013, I had the other half replaced, it failed. In 2014 I had the whole right shoulder replaced. In 2015, I’ll have orthoscopic surgery to remove a protruding screw on my right side. This is how I have marked my time in my 30s.

I think something clicked into place in 2013, after I found out I needed more surgery. I realized that I am not going to get “better”, that if 22 years of drugs, needles and surgeries hadn’t provided any form of remission for my RA, it was unlikely to occur in the future. This doesn’t mean I’m not trying to get better, but my expectations for my outcome have been reduced significantly. Lower expectations provide for less disappointment in the end. At times, I’ve been pleasantly surprised by what I’ve been able to do pain-free on occasion. Life is too short not to actually live – or at least try.

There is a sense of relief that comes with accepting what is. I’ve entered into a more zen-like state in my attitude towards my RA. I rage and rail against it on my blog, and to a select few people in my life, but for the most part I’ve become somewhat immune to the highs and lows that come with having a chronic condition. I am less and less shocked by the events of my life as they pertain to my health.

I’ve started to carve out the life I want. I want to travel. I want to drink as many interesting beers as I can. Ditto for scotch. I want to see as much live music as I can. I want a meaningful and progressive career. I want to write. I want to be read. I want to show my kids the world. I want to go on more dates with my husband. I want to be happy. I want to lead a good life, a life I am proud of and a life with few regrets.
Much of my effort has stemmed from the fact that if I don’t create these memories, “carpe diem” or embrace a “yolo” attitude now, my best years will be behind me and so will my health, and I’ll be left without the memories in crippled body surrounded by piles of regrets. And I really don’t want that.

My daughter, Chelsea, and I went to see Katy Perry last year when she came to Ottawa. Chels was 7 at the time, and this was her first concert.  We dressed in Katy-style pink and purple wigs and sang our hearts out to all our favourite song. It was Chelsea and I creating a memory together.  I want to create as many of those memories as I can.
The show capped off with fireworks and her signature song “Firework”. A happy song for a happy post.

Saturday, February 7, 2015

Arthritis by the Numbers

I'm flaring. Again. This is the fourth flare requiring prednisone (aka "Satan's Tic Tacs") in the past 12 months. Granted I've been off my fancy arthritis meds due to recent surgery for the past 4 months, but I'm a little fed up with how significantly my RA is inconveniencing the rest of my life. I'd like to work, I'd like to parent my children, I'd like to go on a date with my husband, I'd like to go out, I'd like to not be in pain, I'd like to not meter out my spoons like they were made of pure gold. I'd really like a ray of hope.

To put this in perspective, I have pulled some stats on my RA:

1 - The number of upcoming surgeries I have scheduled in the next 3 months
2 - The number of shoulder biopsies I've had to date
3- The number of shoulder surgeries on my right side alone alone,  in a 4 year period
4 - The number of shoulder surgeries I've had in 5 years
5 - I've had 5 surgeries in total related to my RA
24 - The number of years I’ve had RA.
30 - The number of times I’ve seen my orthopaedic surgeon in 5 ½ years.
Dozens - The number of x-rays I've had in my RA career.
100's - the number of needles I've had for various injections and withdrawals in and out of my body, including the ones I've given to myself.
1000's - the number of pills I've taken in the past 24 years.

My RA is a part of my life. It is happening, and – like many things in life – it’s how you manage through the obstacles that life throws at you that determine your character. Right now, don’t care about how character-building this might be. One could argue that I’ve built a lifetime of character throughout the past 24 years.

One of the best gems that I found was Tom Odell's "Another Love". All my tears have been used up, I don't know how to grieve for this disease any more.

Friday, January 23, 2015

The Good, The Bad & The Ugly

I probably should have posted earlier, but I'll play the major surgery card as an explanation for my delay, and try to provide a quick update on how things went.

Recap. I had my third shoulder surgery in four years on my right side on October 16th. The procedure included grafting bone from my hip into my shoulder, securing that with a few screws and replacing my humeral head - again. A picture is worth a 1,000 words, see below. Love the staples in the "after" shot.



The Good. Surgery was a technical success, everything in the operation room went well. It will take another 4-6 months to determine the full extent of how successful the surgery was after I'm through rehab. I'm hopeful and optimistic that I won't be back under the knife anytime soon. I'm also a scarred shoulder surgery veteran, so I'll reserve judgement for a little while.

The Bad. Anyone remember the part where the anesthesiologist rhymes off a list of potential complications from surgery, and assure you the risk of any one of them happening is miniscule? No one remembers that part until they have a complication and - suddenly - it becomes a conversation  where you wish you were paying closer attention While recovering in the hospital, I discovered I had some - at the time - scary nerve damage in my forearm and fingers. I didn't have consistent motor control from the forearm down through my fingers. A very long story and a trip to a neurologist later, all is much better. I have some residual numbness in my right thumb, but a far cry from the scary hospital experience where I couldn't move my arm at all.

The Ugly. I'm not a particularly vain person, and I have my fair share of scars. But this time, there is no hiding from the etching in my shoulder. Three incisions over the same scar line will do that. And my hip scar is much worse. I had a post-op infection on the incision site, and it just didn't close well at all. It's an angry pink mess. I wear my scars likes badges of honour - they are war wounds in my battle with arthritis.

I'm alive. I've got more metal bits and pieces and screws than I did before. The pain was managed fairly well. I was somewhat under-educated on the extensive immobility of the hip portion of the surgery. My surgeon saying "don't worry, you'll walk out of here" was not exactly accurate, based on my wheelchair exit from the hospital.

I listened to hours of music, watched days and days of Netflix and tried to keep my chin up.  I rediscovered Fleetwood Mac recently - and their song "You can go your own way". I keep trying to go my own way, and my RA keeps pulling me back. But at least I'm still trying.

Sunday, October 12, 2014

What's your dream?

So we are just getting back from a week of Disney vacation. It was exhausting and exhilarating at the same time. Lots of walking, lots of laughs, lots of standing and waiting, lots of roller coasters. We had a great vacation. Given my upcoming surgery, we wanted to have some fun before my surgery – as fun will not be easy to find for a while.

I was watching a Mickey and Princess show on the steps of Cinderella’s castle with my seven year old daughter, and it was all about dreams really do come true. It was an uplifting and heartwarming message for all the kids there. So, why was I crying?

Mickey says if you make a wish your dream really can come true. I haven’t found that to be true thus far, granted I've been a bit down lately. I mean, who cries at Disney during a Mickey performance?
It got me to thinking - what would be my wish? Would it be to live pain-free? To “cure” my RA? To ensure that my children never have to go through this awful disease? Would it be to fix my shoulders once and for all? On the final countdown to my surgery, I'm having a hard time finding any silver linings.

I am wrapping myself in a familiar cloak of introspection and an overwhelming urge to be alone.  I've gone to that place where I distance myself from the reality of what's to come as a coping mechanism. It's quite sad, really. I don't have any tears left to cry for this surgery. I'm on auto-pilot as I know - for the most part - how this week and next is going to unfold. I'll be crabby and on edge all this week. Thursday and Friday will be a daze of drugs, pain and lack of sleep. I will be angry, uncooperative, stubborn, tired, scared, potentially immobile and trying to cope through tuning out  the world as much as possible.
I know what’s coming and I am afraid. I’m afraid of the outcome. I’m afraid to hope. I'm afraid the surgery is going to be another failure. I’m afraid of the dependence on others. I’m afraid of being a burden to my family. I’m afraid of the unknown – I’m having a piece of my hip bone removed and grafted into my shoulder. While I may be a veteran of shoulder surgeries - this being my third - harvesting bone from my hip to relocate to my shoulder is new for me. That’s scary and I'm afraid.

While vacation was a brief and welcome suspension from reality – we are on the last leg of our flight headed home, and reality is waiting. I'm sure listening to my favourite band - The National - is not helping. They are not exactly what I would call "uplifting". I generally try to mix up the songs associated with my posts, but their song "Afraid of Everyone" is stuck with me. Here's hoping they have the drugs to sort me out after surgery.

Tuesday, September 16, 2014

It's not ok and I am not fine

So, it seems I will be having another shoulder surgery. I don't know how many times, how many years in a row I can type out the words "this is so unfair" or "I can't believe this is happening". I re-read my posts from last year around this time, and the emotions are sobering and similar, only amplified. It's worse this time around because the last surgery was supposed to fix my shoulder - and so was the one before that, and the one before that. It was supposed to buy me a few years - maybe five or ten - to bridge me through into my forties. And it didn't. And I feel cheated.

I am not fine. It's not ok. It will likely never be ok. This is going to be a ongoing and increasing struggle for the rest of my life. And some days, I just don't want to get out of bed and face it all. I have too many responsibilities to curl up in a ball and cry. But it's really tempting some days.

I am overwhelmed with emotions of grief, anger, betrayal, emptiness coupled with constant pain. Sometimes I take the medication and feel better, sometimes I have a scotch or two, sometimes I just simply cry. This disease take so much from you. With four shoulder surgeries in five years, and four flares this year alone, it's not been a good year.

As I progress closer to my surgery date (30 days and counting), my ability to keep it together is tenuous at best. And when I pause to sit and think about it, past surgeries have provided a similar emotional roller coaster in the final few weeks. Currently, my emotions are loosely packed in by thread with lots of scissors in my life waiting to expose my current - and fragile - emotional state.

I went to a concert by the band "The National" last Friday at Folk Fest here in Ottawa - one of my favourite bands of the past year. I've been listening to their recent album for the better part of a year, but hearing their song "Graceless" live, I attached myself and my current circumstances to the lyrics. I've not been as graceful about this surgery as I would have liked. There is no stiff upper lip, keeping calm and carrying on. I'm pissed. And vocal. And I hate this. It's not ok and I am not fine.

Tuesday, September 9, 2014

Dreading the keyboard

I've not written in over two months. It's not for lack of excitement in my RA life, it's likely due to overexcitement. I just can't seem to bring myself to write down the amount of poking and prodding I've been through this summer - somehow this the final step in accepting that I am having a total shoulder replacement on October 16th. There I said it.

This summer I've had a shoulder biopsy, three bone scans, series of x-rays and blood work all in an effort to rule out an infection in my right shoulder. When the results came back negative, I was relieved, no one wants to deal with the extensive pain and procedure involved in managing an infection in a artificial joint site. At the same time, it was hard to hear. What it really meant, was that all the pain I've been feeling in my shoulder was all mine and could not be explained away by an infection. And it was a tough pill to swallow. If I didn't have further shoulder surgery, this would be my life and my pain forever. And it's unacceptable. Right now, I'm taking from one to five Tylenol 1's per day to manage the pain. That's up to 40 mg of codeine a day to manage the pain. I'm not comfortable with that as a lifelong ongoing pain management tool. It's off to surgery I go.

I'm essentially having a total shoulder replacement this time. This is my third surgery in as many years. They are removing bone from my iliac crest in my hip and grafting that into my glenoid (socket part of the shoulder) and replacing the humeral head hardware from my current smaller implant into a full 10 cm stem that runs down the shaft of the humeral head. Essentially, more bone, more metal, more robust shoulder.

I've struggled sorting through what I think about all of this. On one hand, I feel like I'm watching a movie of someone else's life - like I have many times before on my RA journey. But I'm not that lucky. There is no dream to wake up from. This is it, man. This is my life. And I'm still trying to process. I've taken quite while to publish this post, but I always had a song in mind - Oasis, "Don't Look Back in Anger". I'm looking back. I'm angry.

Saturday, June 28, 2014

Fix you

I suppose I could take all the posts I wrote last summer and fall and simply recycle them. That would save time and thousands of keystrokes.

Like last year, it started with pain in my right shoulder. I was 8 months post-op and pain at this stage is unexpected. My range of motion did not come back at all, and then I started having pain at rest. Washing my hair is painful, and I cannot lift my arm above shoulder height independently. It just won’t go.

Like last year, I went to see my surgeon for a follow-up. Upon seeing my x-rays, he didn't have to explain anything to me. I've seen dozens of my own shoulder films, and I know what I'm looking at.

Like last year, my glenoid (socket) was thinned out again and there was little evidence of any of the bone graft remaining. This is a significant problem, as last October I had surgery to graft bone into my shoulder. And it’s all gone.  All of it. The surgery was a failure – and none of the bone graft took.

Like last year, I fought back tears and tried to formulate coherent questions, but none came. I'm sure I’ll pull myself together and have some intelligent questions for my next consult.

Like last year, we talked about what the next steps are and what the next surgery might look like.

Like last year, I got the surgeon sad eyes. When your orthopaedic surgeon feels bad for you, you know you’re in rough shape.

Like last year, and two years before that and two years before that before my last surgeries, I keep wanting to say “I can’t do this”. But I don’t really have a choice.

Like last year, and the 22 years before that - I hate RA. It has taken so much from me. And every time I face another surgery, biopsy, needle, infusion, pill, ache and pain RA takes something that cannot be replaced. Cue Coldplay "Fix You” Could it be worse? I suppose. But this is pretty bad.