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.