The other day, I was in my closet organizing and found myself sitting on the floor on an extra dog bed. When it was time to get up, I felt an instant moment of panic realizing that I hadn’t planned for this.
Normally, any time I know I am ending up on the floor, I figure out how I’ll get back up first. It usually involves finding a sturdy piece of furniture that I can pull myself up with, and in that moment, I realized I had no such thing. The only thing I had to hold on to was the door handle that was swinging back and forth.
I considered for a moment — was the dog bed cushy enough so that I could get on my hands and knees without excruciating pain?
My body has been through many changes over the years
As it turned out, it was, and I pushed and pulled my way up to standing, laughing at myself and relieved that no one was there to see what had just happened. Then I stopped, because I had just realized something: I am turning 54 years old soon, and 20 years ago if I had been in that position I would have had to slide myself across the floor until I made it to the next room or just wait for help. Twenty years ago, I was in much worse shape RA-wise in many ways.
It is a good reminder because, for the past few years, my body has been through more surgeries for JRA than at any other time in my life. I’ve been silently angry and frustrated at what I’ve been thinking is a big decline in my function and strength.
In the past year, I've done a lot more smiling
It’s true, there are many more activities now that I can’t do because of my joint limitations, and my strength has gone down because of this. But all that negative thinking has stopped me from remembering the good news: For the past year, I have had less disease activity and less pain than I have had for at least 20 years.
Anyone who has lived with rheumatoid arthritis long enough knows that this could change again tomorrow. But I know that if it does, I still had the past year. And for the past year, I’ve done less gritting of the teeth on my daily walks and a lot more smiling. I admit I’ve even tried to skip a time or 2, and even if it looked a lot like getting out of the closet the other day, I didn’t care.
Celebrating instead of worrying
The most difficult aspects of the disease for me are the unrelenting pain and the emotional fallout. Living with pain means that the brain is constantly looping into negative sensations and feelings, and it takes work to combat these. Every big change I’ve made when it comes to the RA has started with a change in mindset, and the first step to this is always realizing your mindset needs changed.
After that day in the closet, I realized that it was time to celebrate my better health instead of worrying about all of the negative changes that I’ve been through. Now, when I get frustrated by the hand that used to be my strong one but now loves to drop things, I look down at my kneecaps. The kneecaps that stayed hidden behind what seemed like buckets of swelling for decades. Then I bend my knees, just because I can.
On average, how many times per month do you (or your caretaker) go to the pharmacy?
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