November 1997 – I’ve heard, by more than one parent, that they refer to a life with arthritis as a roller coaster ride. You’ve got some soaring highs and some terrifying dips. After Amanda’s first joint injection, we were filled with hope that we had “conquered the beast” and she would enjoy a long period of pain-free existence. Well, the Beast had other ideas! In November, Amanda developed a flare in her other knee and both elbows. Every morning, we struggled to get her out of bed – she was too sore to walk – and to get her dressed – she couldn’t bend her elbows enough to put her shirt on herself. After spending months when she was small teaching her how to dress herself, we were back to square one.
We also noticed a pattern developing. Just prior to the flare being significant enough to notice the joint contractures, she would go through a period of Hissy Fit Hell! She had a hair trigger temper and just ‘bout anything would make her blow! Mount Vesuvius had nothing on this child! Her tantrums were unbelievable – my easy-going, calm, introspective child had, overnight, turned into a primal raging Neanderthal. She would cry uncontrollably, scream unrelentingly, and her coordinated foot kicking/arm waving efforts could have drawn Olympic judges praises had their been an event for Hissy Fits. You always hear that hindsight is 20/20 so it took a couple of eruptions before we started to make the connection. But Amanda was simply in too much pain and too frustrated about it to be able to communicate her frustration effectively. When we finally got the point, we were able to try to refocus her frustration and we verbalized what she was feeling. She didn’t have to pitch a fit to have us get the point and we gave her the words she was looking for to describe how miserable she felt.
Unfortunately, this meant that we were back to HSC for more joint injections! Again, she fought “the mask” – screaming the entire time that she hated “the mask” – the laughing gas they used to put her out. The way she referred to it, it almost sounded like a living, breathing entity that she had to fight until her dying breath. Arthritis had taken away all of her power but this was one thing she could take control over – she’d be damned if she’d go to sleep quietly! And, almost as if she was punishing us, she vomited all over the back seat of the van! Of course, we knew it wasn’t intentional but it sure felt like it was! Again, we broke out the Disney movies, ice cream, and games to keep her occupied for the 48 hour period. Now, I’m not sure if she just knew what to expect and didn’t fight us on the “incarceration”, or if she was simply too pooped from the anaesthetic to fight, but it was much smoother the second time around.
May 1998 – November 1998 – The arthritis continues to rage, unabated, in Amanda’s body. She endures two more sets of joint injections which give her some measure of relief but it seems to rear it’s ugly head again in a few months. We’ve also noticed that there seems to be a bit of a pattern to her flares. Late spring and late fall seem to be a time when she develops the most problems. She continues to be a trooper and takes most things in stride. The worst part of the day, for her, seems to be morning. She has significant stiffness and pain when she gets out of bed. Some mornings she will crawl out of bed because it’s too painful to walk. Our physio from the Arthritis Society suggested that we give her a soak in a warm bath for 15 minutes in the morning and try to get her moving a little better. It helps somewhat – at least gets her limber enough to get moving and get rid of the stiffness.