Material Girl

No amount of vacations, jewelry or distraction are going to take away my disease. No magic combination of words will explain away my disease. No pill, treatment, medication, food or drink will eliminate my disease.

For the past 6 years I’ve been gearing up for, or recovering from shoulder surgery. To ease these disruptive and painful events in my life, I’ve received small charms, diamond earrings and rings. We’ve gone to Venice, Munich, Maine, PEI (twice!) and Disney (twice!). These were great trips and family memories and beautiful jewelry. In the end, I’ve still had 6 shoulder surgeries, #7 is tomorrow.

The fight might be delayed, dressed up or postponed – but it’s waiting for me after every holiday and glittering bit of jewelry. You can’t buy your way out of Rheumatoid Arthritis. You can’t buy your way out of my shoulder hell. This is the harsh reality of my life. It’s my fight, and nothing can take it away from me or make it better. It’s up to me. 

And I’m really tired. Utterly exhausted from the pain, the stress, the pressure to fit things in before my next surgery, the scheduling, the explanations, the sad eyes, people feeling sorry for me, the “you’re so young”. 

There is no easy way out of this disease and my surgeries. It’s a tough slog and there are no shortcuts. The only way I’m going to feel “better” about this is how I wrap my head around it. My attitude towards my surgeries has matured in time. At first, there was a certain amount of novelty. I’ve moved from passionately talking about the cool things surgeons can do to re-build my shoulder and public education on my disease to artfully dodging the “how is your shoulder” question that invariably comes up in conversation. 

I understand, it’s hard not to ask me when given my past 6 years. Almost every conversation has been “how’s your shoulder?”. People genuinely care, and just want me to be better. What they fail to understand, is that there is no “better” and I’m aiming to simply not get worse. At this point, I don’t want to educate or talk about the next scientifically advanced cool surgery I’m about to have. I just don’t want to talk about it period. I now view it as a giant pain in the ass, and I just want to get on with it. “Keep Calm and Carry On” and all that.

As a nod to one of the first albums I ever purchased, I’ve been a Madonna fan on and off for 30+ years and Material Girl just seemed to fit this post. While no amount of trinkets or trips will take away my disease, the happy memories I take from them are what makes my life wonderful. I have a good life, even if there are a few more bumps in my road than most.

Just another date in the calendar

When does surgery become routine that it is just another appointment in the calendar? When it is so commonplace that there is no more fanfare, anxiety, special preparations or lost sleep? When you almost dread telling anyone about the surgery as you are exhausted more from the re-telling and outpouring of sympathy almost than from the pain of the disease?

I think I’ve reached that spot. I’m heading into surgery #7, #6 on my right side and #4 for the past year. These are terrible stats, and they are going downhill.

At my recent appointment with my shoulder surgeon I didn’t happily sign off on surgery that might have brought some closure on the shoulder saga. Oh, no. I found out the results from my shoulder biopsy in August weren’t entirely conclusive. The majority of the results showed the same staph infection from this past Spring, and the minority came back negative. I’m also primarily asymptomatic – no fever, no chills, no pain. Well, about that last one. I have some pain, not the same level as last Spring, but it seems to be creeping back in. This is not good.

I cannot have my proper shoulder hardware re-installed until I’ve been completely cleared of infection. The  shoulder biopsy completed by drawing tissue and cell samples with needles couldn’t definitively determine if I have an infection. This can all be solved with another surgery, of course. Which is scheduled for October 6^th. Don’t celebrate just yet, this in no way replaces the next “big” surgery, I’m adding to the surgical list, not substituting or reducing. This surgery will get deeper tissue samples as I’ll be knocked out and they are going in arthroscopically. Hopefully better samples equal a definitive infection decision.

After they cook up the samples in the lab, there is complicated decision tree that follows. If I have an infection, how are we treating it? If there is no infection, where did the positive results come from?

And the question I really want answered – when the hell do I get off the merry-go-round and get my hardware back and be done with all of this?

I went to the appointment myself, I wasn’t expecting this conversation and turn of events. When I suspect bad news is forthcoming, John comes for support, but I walked in unaware. I was expecting to sign up and get my hardware back and to be done.  In the end, I did sign up for a surgery, but not the one I intended to. I don’t even cry at these appointments anymore. I’ve either become much better at handling all of this, or I’ve become hardened and immune to the cavalcade of bad news that seems to wait for me at Orthopaedic Clinic at the Ottawa Hospital.

I’m listening to “Where does the good go” by Tegan and Sara. Long before they sold out with “Everything is Awesome” and the Lego movie, they were an indie-folky Canadian band with beautiful harmonies. I’ve been asking myself where does the good go? How many more times can I go through surgery and keep my chin up? At least one more, I guess.

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 Beyoncé's song "Halo". I can't seem to find anything positive from my past six months, but this song reminds me to try.

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.

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.

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.

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.