Spending Spoons like a Drunken Sailor

For most of us in the auto-immune world, the Spoon Theory is the language we use to communicate our energy levels and how exhausting it can be to have a chronic disease. I've not used it much, but it's a powerful metaphor for how we get through a day and try and allocate our energy.

I've been on a new biologic, Xeljanz, for the past three months. I've also started back on Leflunomide  around the same time and am still taking the ever-present steroids. And throw in some form of pain meds as and when needed - more often than I'd like, but a girl's gotta live.

I'm approaching this blog entry slowly, tip toeing up to the topic, not wanting to disturb anything. Because I may actually have some energy back. Maybe. I may be taking less pain meds. I may not have super swollen feet 24/7 that are hard to walk on. I may actually be feeling a bit better. Possibly. But shhh. Don't tell anyone so I'm not jinxed.

So, of course, I'm spending spoons like a drunken sailor!

Why not? I've been feeling pretty crappy for - frankly - several years and this is the first time in recent memory that I don't have to meter out my energy worried about how I'm going to make it through the day. I can make it to the end of the day, and still have some spoons left. It's like I'm almost a normal person. Almost.

But I'm an over-doer. I try and cram too much in. And I'm paying for it this week. Work has been busy with lots of stress, long hours and weekends, with no real relief in sight. Home is busy with hockey time two, competitive swim schedule, dance, homework and trying to feed everyone and ensure that they are in the right place at the right time with the right equipment (trickier than you think!). However - I'm not as bad as I've been in the past under similar circumstances. Again, don't tell my body that. I'd hate for it to revert back to it's usual state of flare.

As every good Canadian knows, Gord Downie, lead singer of the band the Tragically Hip, passed away last week. The Hip were an integral part of my musical life since high school. His poetry, expressed through song, provided support, meaning and insight at various points in my life.

One song that stands out in light of this post is "Firework". It's my go-to Hip feel better song (apologies for the language). It's about how temporary things can be - they can last as long as a firework. I'm hoping upgraded spoon allotment is more permanent.

The reason I write

Oh, it's been a while. Like a year and a half. I've been busy being a mom, full time HR guru, Parent Council President, hockey mom, swimming mom and working through all this with a very flare-y arthritis-ridden body. It's been a roller coaster of flares, prednisone (up to 50 mg per day!) and failing out of 3 biologics. Goddamit. I'm crying just writing this. 

I'm trying a new style of writing with this re-invigoration of my blog - less editing, more stream of conscientious, more raw honesty. We'll see how this goes. 

We had some people over on Saturday - hockey team parents - for a get to know you gathering. Nice people, good event. We talked about kids, work, hockey and then started discussing where we went to school and what we studied. I have a writing degree and someone asked if I write outside of work. Well, I offered up that I had kept a blog chronicling my RA journey. 

One of the ladies eyes lit up at the mention of Rheumatoid Arthritis and launched right into all the diet changes she's made that have taken her off all her meds and now she has no symptoms for her Psoriatic Arthritis. I commented that I had tried that path with limited success. She pursued the conversation.

Sigh.

I tried to find my grace as a host and a human being, but I’m sure a trace amount of annoyance came through as I felt needed to defend my health choices to a total stranger, in my house, in front of my guests. I used words like “nine shoulder surgeries” and “severe rheumatoid arthritis” and “26 years”, but no – apparently diet changes and going gluten-free are going to solve all of my problems and get me off all of my meds. 

This is why – for years – I didn’t tell people about my RA, didn't write about it, didn't Facebook it. Nothing. Nada. I don’t have the energy or patience to educate or explain my disease to strangers who really don’t get it. Nor should I feel the need to defend my health choices to complete strangers. But I did feel the need to defend my choices. This conversation upset me so much, I’m back at the keyboard looking for some therapy.

I have tried alternative and traditional therapies, diet changes, supplements, acupuncture, laser therapy, massage therapy, a complete elimination of all grains and dairy – all with minimal to no success. The effort required was not worth the minuscule improvements I saw in my health. And - frankly - it's none of anyone's business how I approach my health.  

It's four days later and I'm still frustrated by how much this has gotten under my skin. One of my favourite songs from the past year has been "Float On" by Modest Mouse. It's about moving on despite setbacks you might have. That's me. Trying to float on with my RA. 

Love is.

Love is best expressed in silent actions than flowery words.  In the past 15 months I’ve had 5 surgeries which included 3 total shoulder replacements. I’m aware the math doesn’t work – since I only have 2 shoulders. Needless to say, it’s been a hard year. While I’ve written many posts on what RA has taken, with the right perspective, you can see beauty in what people give when you need them.

Chronic disease is hard on a marriage. 8 surgeries in 6 years is like throwing kerosene on a fire, if things were bad before, they are only getting worse.  Imagine your spouse tomorrow tied their right arm behind their back for 6 weeks and you have two active children aged 9 and 11 years old. It’s like adding one-third the work to your day and reducing your help by 50%, but throw in some free babysitting. Irritation on both ends is a strong possibility, as are high emotions from the frustration. It’s not always pretty. But I think if you ask John, he would say our marriage is stronger for going through this together. He’s picked up some skills along the way. He can now expertly put my long, curly hair into a bun or a  ponytail and we were just getting to braids (ok, kidding on the last one). He can hook up an IV to a PICC line. He is an expert a pillow “nests” for my shoulder. He’s my arms and hands when they don’t work and hold me up when the world seems to be falling around me.

My parents set an example for the kind of parent I aspire to be. In December 2014 they moved to Ottawa to be closer to me and my family. They recognized that I would need more support in the years ahead, given my declining health. Their actions show true love – parenting is leading by example, and they have set high bar for me to follow.

My friends are a mix of “new” and old. I have very good girlfriends from 20 years ago at university and friends that I’ve met through my professional life and the moms of my kids’ best friends. They all support in different ways – taking me for groceries, running errands, coming over for a visit, feeding my Starbucks Chai latte habit and sometimes just listening to the apparent never-ending story of my RA struggles.

My RA journey isn’t solitary; it involves people in my life. My husband, parents, kids, friends, colleagues. I’ve been on a Death Cab for Cutie (yes, that’s a band name) binge lately. Their song “What Sarah said” is a haunting story of the despair of the hospital which puts into sharp focus who is important in your life, with the pivotal observation: “Love is watching someone die”. I have found throughout my RA and most recent surgery journey, that I am surrounded by love and friendship.  For that, I am grateful.

All Flared Up

Oh, it’s been a while since I've posted. That usually means lots has happened and I’m still processing. I'm just getting back to work full time since my reverse shoulder replacement in November. Yes, you read that correctly. They took my shoulder joint, reversed the polarity and sewed me back up.  Yes, they can do that. Yes, it really works.

Brief history lesson. I've had eight shoulder surgeries in six years, and seven of the surgeries were on my right side. Back in October 2014 I had shoulder surgery #3, had screws removed in March 2015 and found the joint was infected. Removed that joint, put in a spacer in April 2015. October 2015 saw an arthroscopic surgery to determine there was no infection. November 2015 I had a total reverse shoulder replacement. Oh, and another infection. Cue another round of IV antibiotics followed by four months (and counting) of oral antibiotics.

I'm flaring. Again. Flaring for me means my joints are swollen for most of the day, I have stiffness for a few hours each morning, and I'm in a notable amount of pain – which means more than my usual baseline amount of pain.

It seems to be a pattern in the past year. Have a major joint surgery, take 6-10 weeks off work, go back to work and flare. This time it’s much less well controlled, I'm on 40 mg of prednisone – the most I’ve ever been on - and I might as well be taking tic-tacs for all the benefit I’m feeling. At least with the tic tacs I’d have great breath and wouldn't be gaining so much weight.  This is my 5^th flare in about 15 months, and I've also had 3 major and 2 minor shoulder surgeries in this time. Coincidence? I think not.

I counted my daily meds – I'm on the highest pill count I can recall. I’m at about 24. And that’s not even keeping all the pain and inflammation at bay.  If I ever get around to writing a book or a more significant, publishable article about my RA, the title will be “Pain is not my biggest problem”. I can manage pain. I can take the pills. I can breathe, rest and modify my activities . It’s the fatigue that gets me, trying to get through a day with some amount of grace and humour, yearning for rest so that I can try again tomorrow with a glimmer of hope that it might be better. It’s the red, angry inflamed fingers staring back at me from the keyboard and the never-ending fear that these uncontrolled flares are causing permanent damage resulting in a lesser future for me – less than I already expect.

RA is a terrible, terrible disease. I’ve been on the RA path for 25 years now. I’m a veteran. I know there are elements of my disease that are in my control, and some that are not. But the fear never leaves me. If my surgery count is 8 at 40, what does 50 look like? 60?

As I’m trying to stay positive, I’ve been listening to some of my favourite songs from university days. James’ “Sit Down” came on a while ago, and it’s the first time I really listened to the song for the message. An amazingly upbeat song about supporting those who are depressed, lonely or outcast. I somehow seem to be amazingly upbeat given the (at times) depressing circumstances of my health.

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.