A Picture is Worth a Thousand Words

She has TMJ Arthritis.

That’s four words, not a thousand, but you know what I mean.

So often, I get so caught up in the research and quality improvement work I do, that I often forget that Megan and I are patients.  I choose to focus on the positive and obviously I’m at the front lines looking for better ways to treat this, better care practices, and better outcomes for all kids with rheumatic conditions.  I’ve learned SO much about other rheumatic diseases such as lupus, juvenile dermatomyositis, CRMO, PFAPA, scleroderma, and who knows how many others.  I see kids who are STRUGGLING daily with their disease and consider us very lucky for the hand we’ve been dealt in this world.

Then something seemingly small slaps me in the face.  Something like school pictures.  IMG_2068

My first reaction when I saw this photo was “My gosh, she’s getting so big.”  She doesn’t look like a baby anymore.  My second reaction was “Wow, she overdid it on the lip gloss I let her take to school.”  But today, as I took out her photo from last year and replaced it with this new one, I looked at it with fresh eyes, and all I saw was her lopsided face.  This is her face, this is what she looks like.  But what will she look like in five years?  Will this disease continue to progress and eat away at the bones in her jaw?  Will her jaw ever grow normally?  Will she need braces at age 7 to start pulling the bone to stretch it?  Will she need a joint replacement in her teens?  Will she look normal as an adult?

My good friend and founder of the Savvy Cooperative (CHECK IT OUT if you are a human of any kind…it’s amazing!) posted this photo of herself on her way to a joint injection last week.  She has TMJ arthritis as part of her JIA (diagnosed as a baby) and her disc eroded when she was 6, the same age Megan was when we learned her disc was thinning and probably torn.  My other good friend’s son was diagnosed with JIA when he was a baby and has had TMJ arthritis since he was a young kid too.  He’s currently being evaluated for jaw surgery next summer.  Aren’t they both beautiful people?!  I sure think so.  But I’m also super thankful for the amazing medicines we have today that we didn’t have 15 and 20 years ago.

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Lately, I’ve been fielding lots of questions about “normalcy”.  Megan seems to be expressing more often now that she wishes she could have been a “normal” kid.  I usually laugh and tell her she’s definitely not normal and it has nothing to do with her JIA.  She’s a goofball, a unicorn-lover, a stuffed animal hoarder (it’s really becoming a problem….she’s going to be on a tv show when she’s an adult!), and anything but boring “normal”.  But I know what she means.  She means can she just go to school like a normal kid and not have to leave for treatments.  She means can she just brush her teeth and take gummy vitamins at night like her sister does (and not have to take 3-7 pills each night too).  She means can she not use a special pencil at school that protects her finger joints.  She means can she just get a cold like a normal kid and not be sick for two weeks.

We talk a lot about the cool things she gets to do though.  She has been the youth honoree for the Arthritis Foundation’s Walk to Cure Arthritis in Columbus.  She loves attending JA Family Days and the JA Conferences where she meets and plays with kids who are her kind of “normal”.  She is SO super excited this year to be one of the Patient Champions at the Nationwide Children’s Hospital Columbus Marathon and Half-Marathon!  So we celebrate the silver linings, rather than dwell on the negatives.

Plus, what kid could possibly be “normal” with this Pink Unicorn as her mom?!

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