I am more than my RA

EDITORIAL BOARD
Cheryl Koehn

A day in the life of Alice – explore the ups and the downs of family life with RA.

Saturday 8:30 am

Eyes open: time to take the “joint inventory”. Have to figure out which ones are going to need special attention to get through a jammed-pack day planned with the kids and a dinner out with friends.

8:35 am

I’m struggling to pull the covers off. I begin to stand slowly, but the pain in my knees feels like it’s spreading. How am I ever going to make it out of my bedroom?! My knees seem to be the joints that the disease decided today to prey upon and cause me the most pain.

8:50 am

I’ve made it downstairs and the kids are eager to have their breakfast. It’s difficult to be cheery while pouring the “cheerios”.

9:20 am

Our little girl wants a bath this morning. So, it’s all fun and bubbles with a lot of splashing. But I can’t take it for long. I’m devastated. Today’s flare up is unbearable. I have no energy to tell the Mr. Duck story I know she wants to hear. I’m frustrated and upset. My disease is again threatening to take these moments away from me.

My partner has to change his plans and takes over and it’s to the sofa for me. I’ve only been up for an hour and I already need a break.

12:45 pm

The sun is shining; the rest has provided some relief. I try to remember not to blame myself if my disease and treatment plan don’t cooperate 100%. Now that I’ve had RA for a few years, I know there are things I can and can’t control. I’m feeling better and a bit stronger, but what an awful morning! But I won’t let it get in the way of trying to have a great weekend. Before we go out, I make sure to record this morning’s flare in my RA journal, which I share with my rheumatologist. I notice in my journal that in addition to the fatigue and soreness this week, I have not been sleeping well.

I’ll make sure to mention these details at next week’s appointment. Off we go on a family walk in the park; we feed a few ducks and devour an amazing picnic lunch near the playground.

3:30 pm

We’re on our way back home and while my knees are still stiff and painful I’m feeling better and in a good frame of mind. Finding a way to get through another bad morning makes our park outings and weekends all the sweeter to enjoy.

5:10 pm

I start getting ready to go out with my friends. I’m meeting them for a drink in town and we’ve had it planned for weeks. I’m thankful that my body, while exhausted and in pain, becomes less stiff as I move through my day. Yet I’m nervous my knees or hands won’t hold up and do the things I want them to when I’m out tonight.

5:40 pm

Time to brush my “pearly whites”. I love the electric toothbrush my family gave me for my birthday. It really makes brushing my teeth so much easier – one little thing of the hundreds of things I do each day in life that has to be modified to make life manageable.