I Want My Life Back

Tags: , ,

Roo swingingRA can hurt so bad that even tough guys cry. Lately, I’ve cried for a different reason. I want my life back so much.

I want to run on the beach, but I stumble running to the bathroom. I want to hold a tennis racquet, but most days can’t hold a TV remote properly. Want to paint my faded front door, but I haven’t been able to paint my nails in 5 years.

Not whining. Not asking for pity. I’m working through this. One more time.

Isn’t it weird that one day you can lift a 50 lb bag of concrete (before RA) and the next day, you can’t pick up a cup of coffee? I have yet to read an explanation for this. I’ve asked a couple of researchers who said, “Swelling?” Really?

I remember asking my first rheumatologist if I would lose muscle tone. I didn’t ask because I’d read about cachexia. I hadn’t read much of anything at that point. It just made sense to me that if you don’t use muscles, they will atrophy. After a long life of weight lifting and pushups, I didn’t want to lose anything. I remember it like it was this morning because I was so unconvinced when Dr. KBC insisted that it was not a concern.

It’s a distressing change. Is that an understatement?

For as long as I can remember, I’ve woken up every morning thinking about what I want to do that day. Sometimes, it’s very early and I don’t quite remember about the RA. I awaken thinking of things I want to do. Of course the delusion doesn’t last long thanks to pain. It’s usually over an hour before I can get up.

At that point, I tell my soul to be still and accept whatever God makes me able to do that day. I ask Him to help me to be glad with whatever comes. I’ve said that for 26 years.

I am determined to fight to get as much of my life back as possible.

Swinging therapy. Every day Roo stays for an hour on the swing set whether he’s frustrated or happy. This morning, the sky was grey and the wind was brisk and cool. How rare for June in Florida. I went out with Roo to sit on a swing.

Never was a person more happily uncomfortable. It was the happiest moment I’ve had in months. Whatever we have to do each day, may we find a moment like that.

Recommend reading

NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.

Click here to read all the comments or add yours!

Kelly Young. All rights reserved.

This entry was posted on Friday, June 17th, 2011 at 6:00 am and is filed under RA Education. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

Advertisement

The Post

Comments (65)


Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.