After I was diagnosed, I was admitted to Sick Kids for 2 weeks for treatment - I was in pretty rough shape. I had 8 cortisone joint injections in 8 joints in one day, because the lack of mobility and significant inflammation in all of my joints warranted some aggressive treatment. My wrists, my knees, my ankles and my shoulders. I remember being on the treatment table, staring up into the ceiling where there were purple butterfly decals stuck there. Given the 8 needles going into my body 1 by 1, who the hell thought butterflies on the ceiling would help any kid with that kind of pain?
My parents came to visit. My mom during the day, and dad would stop by at night after work. It was hard on all of us, likely more for my parents than for me. I, of course, didn't see that at the time. But now that I am a parent myself, I would go out of my mind if either of my children had to go through what I did.
I remember one night, my dad came to visit after work. He was a little tired from a long day, and I was wheelchair bound from the 8 joint injections. I was itching to walk, he wanted to sit. We cruised around the ground floor of Sick Kids to the day clinic area. After hours, it was empty. We could talk, laugh, visit. He sat, I walked. And then he invented the pain machine. It worked like this: I would hold his hands and all the pain I had would go to him. As a parent, what else can you do? I still start crying when I think about the pain machine and how hard it must have been for my parents to see me suffering.
Sick Kids put my back on my feet, walking without pain, on better meds and with some physio exercises to keep my range of motion strong. I was armed with knowledge, custom-made resting wrist splints with hot pink velcro and some hope that everything might be ok - at least for a little while.