Participants in “Write 31 Days” pledge to write for 30 minutes on a single topic every day in October. My topic? Happiness. After a talk between Cee, David, and myself, today we decided to get Cee’s wheelchair out of its cobwebby corner in the garage. Cee’s pain has been slowly crescendo-ing. First the limp was a […]
Cee has been sick since January ’13. She went from being a completely fine four-year-old to waking up one Sunday unable to walk. After three months of extensive testing and excruciating pain, she was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis. SOJIA is a chronic illness with ups and downs. This isn’t your grandma’s arthritis. […]
We’re holding steady. Cee’s mild pain has stayed about the same. Sometimes her left hip hurts. Sometimes it’s her right hip. Sometimes it’s neither, and sometimes it’s both. Overall it’s not impacting things too much. We watch and wait. “Holding steady” might just be a euphemism for “trying not to fall apart.” Cee has been on oral steroids for […]
Cee is unable to walk, stand, or roll over without intense pain. She wakes up crying multiple times throughout the night. And this is with the meds she’s already on. She spends all her time on the couch or in bed, unless we’re going to swim therapy. There is much wailing and gnashing of teeth to […]
We drew bloodwork today in preparation for Mayo next week. It was awful. Cee’s anxiety level was through the roof, and she screamed through the whole procedure. The nurse called me with a few of the results. Today Cee’s inflammation level is 4x higher than the last levels that David and I remember. The nurse was sympathetic and mentioned that that was […]
As Cee excused herself from the dinner table to go to the bathroom, David and I watched her hobble slowly down the hallway. “When did this become normal?” David asked defeatedly. Normal these days is having an almost-five-year-old who doesn’t dress herself. Who sometimes needs help holding a cup. Who doesn’t like to be hugged or […]
Yesterday was not completely terrible, and today looks like it might be not terrible as well. “Not terrible” is the new “good.” Cee ate. (She didn’t eat any vegetables, and she may have had eggs for all three meals, but they were bright yellow yolk eggs from my aunt’s farm. Lots of nutrition there.) Cee played. (Early […]
Cee had some good moments yesterday. We went to the magician hosted by the library. My sister brought over some kazoos (which the girls love, love, love!). But other than that, things continue to unravel. Cee picked at her food all day. She doesn’t want to go to the bathroom. Apparently she didn’t get the memo […]
I believe this all started on Monday…so tomorrow marks a week of the flare up. I don’t know how long they typically last. As far as the bigger picture, this all started on January 20th. So this weekend marks five months. Five months. Cee’s pain level is increasing. Although there are some brief times where she’s […]
Life is so much better than it was a couple months ago. It’s been so nice that I’ve been lulled into a false sense of security with Cee’s health. We’re dealing with a flare up today that has brought me back to reality. And panic. These things have been hard today: *taking medicine *eating anything *dressing […]