Sunday, September 25, 2011

I Hate Stairs

I can almost see my parents smile when they reads the title of this post.

"I hate stairs" was one of the phrases that started my RA journey. I was 16 when I was diagnosed and I was in a high school with two floors and no elevator. When I was flaring it would take extra time to get to class, and usually I would wait for all of the kids to be in class before I started to one-step it up the stairs. I didn't want the attention. My teachers knew that I was recently diagnosed and gave me some latitude in getting to class on time.I remembered that my science teacher called my "creaky".

So, I'll stop denying it now - I am flaring. It hurts. I am in between Biologics and it's showing. I am returning to my full-flare tricks and habits. Shuffling after I get up from a chair, loathing stairs, looking for the elevator at work - even though it is at the opposite end of the building. Un-bending my fingers in the morning as they have curled up overnight.

I went for a walk with my four year old daughter in Gatineau Park , and we picked Pink Lake to walk around (she, of course, likes pink). The start of the trail is on a lookout and you walk down some stairs to get to the trail. I walked down fours steps and started to cry. I just couldn't do it. The ups and downs of the trail leading there had been enough and my knees were screaming. And Chelsea said "Momma, what's wrong?" I said that mommy's knees hurt like her shoulders hurt and I didn't think I could walk down the stairs. She said "That's OK. We can go back to the car. I love you."

I feel so bad. She's four and her life will be shaped by a mom that can't do stuff. Already, at four and six, my kids know that daddy can carry them and mommy can't and that mommy's shoulders hurt. And mommy is going to the hospital to have her other shoulder fixed.

And the positive voice in my head says that I have many other attributes and abilities. Kids are resilient. They will grow up to be more empathetic adults. They will see past disabilities.They will be more caring. This is what I hope for.

Probably a bad choice, but I'm wallowing a little and so I am listening to Adele's song "Someone Like You". Powerful song with only Adele and a piano. It's coming to terms with a breakup, about moving on. Bittersweet, like my day today.

Wednesday, September 14, 2011

Arthritis of the Heart: A post from my Dad

Hi. I am Megan’s father.

I have Arthritis of the Heart.

This is a chronic ailment. 

There is no known cure. 

There is no medication to ease this pain.

This location of my arthritis is at the intersection of my love for Megan and the helplessness I feel.
When Megan was 16 years old she was a jock – basketball; volleyball; outdoor education with its rock climbing; spelunking; canoeing; swimming and fitness requirements.

When Megan was 16 years old she came upstairs one day and said – “Dad, my feet hurt.” That statement was the start of her arthritis journey.

As Megan’s father I felt that I had failed her. As her father it is my responsibility to protect her from danger as she grows up. I felt helpless that I could not stop her from having arthritis. It’s irrational – I know. But a father’s feelings aren’t always rational. I wept for my daughter’s pain.

Fast forward 20 years.

We have both learned more about arthritis and each other through Megan’s non-stop journey.
I now know that for every person who has arthritis there are two or three more people who have Arthritis of the Heart. We are the people who love the people with arthritis.

As long as Megan has her arthritis – I don’t want to be cured of mine.

Monday, September 5, 2011

Sometimes, you can get what you want...

When I was young, and things didn't go my way, my dad would sing, with a smile on his face and a twinkle in his eye, the famous Rolling Stones song, "You Can't Always Get What You Want" . Even as a young child, I knew that I couldn't get what I wanted. But that didn't stop me from trying.

But this time, in this particular situation, I got what I wanted, and man - I worked for it. I have a date for my surgery and I am getting the procedure for my right shoulder that I want. I feel the need to clarify that this is my right shoulder, as I already have some hardware in my left shoulder.

I am having a shoulder resurfacing hemiarthroplasty, and my hardware will look like this when I'm all done.  I can't have a total shoulder replacement, as mentioned in previous blogs, as I don't have enough bone in my glenoid to hold a prosthesis.  So what they can do is shave down the humeral head, and then a metal cap with a spike to secure the prosthesis will be implanted. Think of a large, shiny tack being inserted into my shoulder. Don't worry, I'll be well medicated.

I am releived to have a date, something to focus on and plan towards. I am not afraid of the surgery and have an expectation of what the pain will feel like and what the recovery time will look like. I'm ok with all of this. And I got what I wanted. I mean, who really wants a shoulder replacement? Well, I do.