Happiness {13}: On Rollerskates and Wheelchairs


  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 […]

Immunosuppressants: A Voter's Guide


or Be Careful What You Wish For   Sorry, America. I remember wishing people would understand how difficult it is to parent a child who needs terrifying treatments to survive…   Imagine yourself in this situation:  Your young daughter has a chronic illness and is in a lot of pain.  It’s time for a medication shift. […]

2016 Fall SOJIA:  Health Jenga


We just got back from Mayo.  The hospital.  Not the condiment.  In case you’re confused. Cee’s labwork looks normal.  We monitor her inflammation markers and liver numbers every few months.  Good. Cee’s x-rays look clear.  We have x-rays done yearly to assess permanent joint damage and the overall state of her joints.  Good. Cee’s exam by […]

A Resignation Reversal


I called David at about 9:30 this morning.  I told him that I was resigning.  I asked if he wanted me to be done at end of the business day today, or if he’d prefer the traditional two weeks. – I told him about the hate note I got from Elle (so proud of her […]

2016 Winter Update

We just returned from our most recent up and back trip to Mayo.  They’re more cost and time effective than staying over night, but man – – those up and backs are exhausting.  Nothing like sitting for 7 hours to take it out of you. Cee’s arthritis is quieting down.  She’s gotten rid of almost […]

Holding Steady

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 […]

Searching for The Answer

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 […]

The "Truths" of JIA

I may have paraphrased a little, but these are some of the actual “truths” we have been told by professionals, that is, people with specialized training, regarding Cee’s situation. -Mayo  isn’t as great as everyone thinks.  The people in Rochester choose to go to the local hospital instead of Mayo.  That says something. -Mayo is the […]

Cee went to church dressed like a gypsy yesterday.  With all the changes she’s having to put up with, I didn’t push it. My sister picked up a bunch of dresses at a garage sale.  Most of them are everyday play dresses.  Cee chose one to wear for church.  It was  floor-length, spaghetti strapped, and as […]