Saturday, August 29, 2015

4 surgeries - 1 year

In 47 days I'll be going for my fourth surgery in one year and my seventh in six years. How the hell did I get here?

Surgery #1 - 2009 - total shoulder replacement, left, resounding success
Surgery #2 - 2011 - humeral head replacement, right, success
Surgery #3 - 2013 - glenoid bone graft with crushed cadaver bone, right, failure
Surgery #4 - 2014 - glenoid bone autograft and humeral head re-replacement, right, success
Surgery #5 - 2015 - screw removal from surgery #4, right,  partial success, infection discovered
Surgery #6 - 2015 - removal of all hardware and insertion of cement bone spacer, right, success
Surgery #7 - 2015 - removal of bone spacer and reinsert hardware, right, TBD, scheduled for October

No wonder I'm so angry. April was an utter shit show of a month. I had minor, arthroscopic surgery in late March, found out I had an infection from my October surgery in April, went on IV antibiotics and had a central line inserted (which is a much bigger, life-encompassing deal than the small words "IV antibiotics" and "central line" lead you to believe), had an allergic reaction to said antibiotics on and around my 40th birthday, landed in emerg, went on more IV antibiotics for 6 weeks, had a major surgery, and then recovered. Oh, and I've been flaring on and off. It's nice the root cause of my surgeries - RA - continues to rear it's ugly head just in case I tried to forget why I'm going through this hell in the first place.

I've not written about this yet. I've put myself on emotional autopilot to ensure that I don't really think about it, motivated by self-preservation I assume. It wasn't until I wrote this post and listed all my surgeries did I realize that I'm going on surgery #7. I thought it was #6. I guess somewhere past #5 I stopped keeping track.

I've managed through the past couple months one step at a time. That's all I can handle. With the final surgery looming in October, and summer on its way out, I don't think I can dodge the inevitable any longer. My countdown app tells me 47 more days until I'm in for surgery and I feel my veneer of happiness slipping away in the time it's taking to write this post.

I referenced the movie "Cake" in my last post and the movie (and music) have stayed with me. It's the closest representation of my RA journey I've seen so far on the big screen. The song played during the credits was an acoustic cover of BeyoncĂ©'s song "Halo". I can't seem to find anything positive from my past six months, but this song reminds me to try.

Wednesday, August 19, 2015

It just really, really sucks

Given my track record of not posting when the going gets bad, not posting since February would therefore indicate some pretty terrible months recently. That would be an accurate deduction. I don't even know where to start, so we'll start with today and work backwards.

Today I had a shoulder biopsy. It was the third one of my RA/shoulder surgery career. It hurts. It is my most dreaded procedure. It is emotionally and physically draining. It involves sticking six needles in your shoulder joint to obtain cell samples to ensure there is no infection prior to surgery. A necessary evil. The reality looks more like me lying in a radiology suite sobbing for 45 minutes, using all my yoga training and deep breathing to keep as calm as possible and barely succeeding. 

Biopsy day came hot on the heels of a rheumatology appointment yesterday where I was injected - for the first time - with cortisone via IM. That was new. Usually my cortisone comes in the form of joint injections or oral tablets. My joints overall are quite poor right now, and I needed a boost. I'm off my fancy arthritis drugs given the frequency at which I seem to be returning to the OR for shoulder surgery. The drugs interfere with my ability to heal, which is incompatible with surgery. Yesterday I got jacked up on 'roids. For real. I should be feeling physically better in the next day or so, but the emotional side is taking longer to work through the "why" of these procedures. 

I'm having a hard time reconciling the events since March 29th, and I haven't really tried all that hard.  Writing this blog entry is the first time I've tried to encapsulate what's happened. And I'm failing miserably. I don't know how to say in different words, the separateness that my RA creates in my life. I don't get to escape this. It's etched into my shoulder everytime I look in the mirror, it's etched into my hands in their deformity, and in my face as I cringe in pain. Every. Single. Day. 

I'm tired. I'm just so utterly, gut wrenchingly exhausted of having RA. Especially these past months. So tired it hurts. So tired I just want to pretend it's not happening. I just don't have any more emotional or physical energy to spare to write, speak or think about it. I'd love to go a day where I'm not sick. Where I don't have to take any meds, where I don't have to worry about what I can or cannot do in case I run out of enegery. A day where I don't have any pain. At all. For just 1 day. That is so unimaginable, like winning the lottery. People have dreams of all kinds - money, fame, happiness. All I want is a pain and RA-free day. 

In the midst of these medical appointments and RA-emotional meltdown, I watched the movie "Cake"- a gritty look about a women dealing with chronic pain. That hit pretty close to home. The trailer uses Hearts' song "Hemiplegia" which speaks to me of fighting a battle you might not win, and might never end. Very much mirroring my fight with RA.

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.

Before

 
After
 


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.