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.