Unexpected Priveledged Problems When You have disabilities, Wear AFO’S /Leg Braces & Have A Neuromuscular Disease Like Charcot Marie Tooth or MS.

FIRST WORLD PROBLEMS

Disclaimer: All problems are relative to the person, situation, demographic, & resources . The following “problems” are those faced by me, an admittedly privileged suburban woman with invisible (not obvious) physical challenges due to an inherited neuromuscular disorder called Charcot Marie Tooth (CMT). The hashtag #firstworldproblems refers to those everyday, non life-threatening, and sometimes superficial  ”problems”…

Invisible Disability, Self-Esteem & Body Confidence

BODY CONFIDENCE

When I was 15 years old, I went to ”fat camp”. It was the mid 80’s and after several failed attempts to lose weight via kids’ Weight Watchers’ meetings and ”the grapefruit diet”, I begged my mom to send me to this diet camp I had seen advertised in a teen fashion magazine.  The camp,…

Fashion, Style & other tips for summer wedding & party guests with disabilities like charcot marie tooth disorder, MS & other neuromuscular or neurological conditions.

Do’s & don’ts for weddings

We learn lessons from the moment we can comprehend. Some are taught in books and classrooms, and some are learned from experience.
I was diagnosed with a progressive neuromuscular disorder in 2nd grade. No one ever taught me how to actually live with the physical challenges of having Charcot Marie Tooth Disorder.

Disability and Travel

NO STAIRWAY IN HEAVEN

The fantasy of a tropical escape from the freezing winter is what powers many people through another 4 inches of snow to shovel, or their extra long commute home from work on ice covered roads.

My husband and I love going to all-inclusive resorts in Mexico. The weather is always perfect, and we get to truly relax without having to really plan or think.

For us, one of the best parts of getting away is the planning; It’s our vacation foreplay. We love using sites like Tripadvisor to scan through photos and traveler reviews.

This year we chose the Secrets Akumal Resort in Riviera Maya. The resort was breathtaking and lived up to its many 5-star reviews. The service, beach, entertainment, and even the food was amazing.

But, our favorite part of any resort, the main pool, was missing an essential element… A WAY TO GET IN & OUT.

I have since learned my lesson. Here are a few resort tips for sunbathers with physical challenges:

Woman With Charcot Marie Tooth Disorder

SKINNY JEANS & LEG BRACES

To say it has not been easy finding myself is an understatement for sure
I literally put my parents through virtual hell from age 10 until my early twenties.

I’ll spare you the details for now. Let’s just say…
Delinquent Depressed teenage girl + mom fed up and near nervous breakdown = Shipped off to Boarding School far far away
Like many teenage girls, I was really insecure and wanted to be accepted so badly that I literally cried out for attention.

Everything was black & white and I remember worrying constantly…

What if No one saves me a seat at lunch?
What if I NEVER get invited to Homecoming?
What if no boy EVER really likes me?

I wanted to have the “perfect body” and “perfect boyfriend” just like Seventeen Magazine told me I could have and should have.

There were no Dove “Real Beauty” campaigns back in the 80’s.