An Advocate for One

Back in the mid-nineties everyone was watching Seinfeld.  We caught up years later when it went to syndication.  Hubby and I were too busy raising our three little kids and restoring a 1921 Bungalow (well, just keeping the doorknobs on most days).

Our world changed when our seven year old daughter, B, awoke in the middle of the night with her wrists and ankles locked.   She’d had uncontrollable strep throat, followed by presumed Rheumatic Fever (specialists were in disagreement), and suddenly we were confronted with Juvenile Arthritis.  It was presumed to be temporary; when it proved not to be, I was suddenly that mother who was issued eye rolls by rheumatologists.   You don’t “want” your child to be diagnosed with arthritis one doctor told me.  To be fair, he was right.  I didn’t want her to have it.  Twenty-two years later, I still don’t want her to have arthritis.

For years, we contended with “normal” labs and disbelieving rheumatologists, all the while teaching our daughter to be strong. Come up with a good back story for that surgical scar!  Ride the bike, climb trees, play basketball — despite ankles that roll and rib joints that lock up and make breathing painful.  We taught her to keep dreaming.


I became an advocate for one, seeking answers.   We did not have the luxury of a second car, so while B was in school I walked my baby boys to the public library in their double stroller.  An outing in the dappled sunlight of tree-lined streets for them, and information for me.  I lifted heavy, dusty volumes off the shelf to find only side-note mentions of Juvenile Arthritis.  


This was the sole means of information for parents of children with arthritis in the early days.  We relied entirely on existing publications found in the library or browsed for newer research in book stores.  Years later in Alaska, I booked passage on the World Wide Web.  I spent long winter nights with my beige Mac Performa 6320.  The same old dusty volumes were now available electronically, and I sought information as to why her joint pain persisted and what form it might be.

 

Entrance to our neighborhood, adorned in ice fog
 
B finally saw a visiting pediatric rheumatologist from Seattle who shared my suspicion of Spondyloarthropathy.  Yet when the HLA-B27 test proved negative, this diagnosis was discounted by our local rheumatologist.   It was not until she was twenty-one that finally, finally a rheumatologist believed that she had Psoriatic Arthritis. That diagnosis was ultimately amended to Undifferentiated Spondyloarthropathy and Rheumatoid Arthritis.


The world has changed so much in the twenty-two years since B was stricken.  Information is now at our fingertips, yet diagnoses are sometimes still just as elusive.  


Despite the easy availability of information today, it is still just as important for parents to advocate.  First for your child’s medical needs, for awareness that Kids Get Arthritis Too, and to help your child find new ways to dream. Keep adventuring, even if the path takes a new curve.  You never know what you will find around the bend.


Autumn in the Chugach Mountains, Alaska
(our favorite hiking area & after-dinner drive)
 
When did Chronic Life visit you & how have you helped your child keep dreaming?
 
 





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