Monday, April 4, 2016

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 5th 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.