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Ahead of my time

Today was the day that I realized that I was born too soon, or that I was born into a family that didn’t believe in one persons ability to make change.

All of my ideas and opinions for decades have come to life, and I watched from the sidelines because I allowed my friends and family to plant a seed of doubt in my mind, all it takes is one seed to grow into a forest. They were unable to see the forest for the trees.

The forest, my vision for big things that could change the world and solve problems, was dismissed by people too busy questioning the value, originality, demand, and utility of my ideas. They were too focused on the details to look at the big picture. I never appreciated the difference between micro and macro economics, until I started to get people excited about an unproven product or idea that lived outside of the traditional box. The BIG IDEA

My entrepreneurial spirit reared it’s head in elementary school when I started making custom ribbon barrettes and selling them to classmates. I specifically remember an order from Anika Moss for a pair of Red/Pink ribbon barrettes. My mother tried to convince me to make them in Red/white and tell Anika that Red/Pink ‘don’t go together.’ I didn’t listen to my mother because I knew what my customer wanted. The point of my little business was to offer something that wasn’t available in the store. I was in 4th grade, and I earned $200 making handmade barrettes.

In 10th grade I started down the never ending road of Temporomandibular Joint Surgery. I was still modest and uncomfortable with my changing body at the time. Walking around a hospital in a gown that exposed me to strangers was mortifying. But I couldn’t put on a regular pair of pajamas or a nightshirt because I had drains sewn into my face; IV drips running in my arms, and compression devices on my legs. So, I asked my mother to bring me my favorite pair of pajamas, which were a tank top and short set. I cut the tops of the tank and the sides of the shorts open and attached self adhesive Velcro strips for closure. I was able to step into the top and secure the tank at my shoulders without disturbing my drains or IV and the shorts slid between my legs and Velcro-Ed closed on the sides without messing with my legs or catheter.

Since then, I have seen Kickstarter campaigns created by patients who struggle with the same issues when they are living with PICC lines. My idea for licensing characters for kids hospital clothing and designer brands for gifts to people who have extended hospital stays is still a profitable venture. I even had a concept for gowns that had funny quotes- I guess today they are ‘memes’- , my special talent for finding custom solutions to make people comfortable in their surroundings is beginning to take shape. As the years go on, and one surgery turns into 25, I become an expert in what a patient needs to bring to the hospital in order to survive surgery- especially surgery on their head and jaw. A Bell, Adult size bibs, a husband pillow to sit up in bed, moist heating pad, dry erase boards, baby spoons, non-skid socks, I built a toolbox for patients.

When I graduated from college. Fancy Schmancy gift baskets, Seinfeld, Purim, Car WashThat me to creative ideas began as early as age 16

Hope’s Toolbox- Rehab toolkit

HautetototKids online create your own outfit store

Reeleez- Movie theater for kids parties

It’s Klippy- Klip ons for kids

Baby blue airlines- Jet Blue for families

RockCandy Kids- a record label for family music

Take a Bite out of Pain- TMJ Association awareness campaign- take a selfie biting into your meal- anything. Take the biggest bite you can. Challenge 3 people to take a bite bigger than yours or they have to donate 5-25 to TMJ Association.

ASL access and inclusion- create a universal language to break down global barriers. Start by providing access to ASL interpretation of live streaming events, podcasts, audiobooks, stand-up comedy specials. New revenue stream for digital streaming platforms. Side by side with closed caption or in addition. The monetization comes from the number of new customers who weren’t purchasing because they didn’t have access to enjoy the content. Open a management company to represent these highly trained and qualified interpreters to secure sponsorship and endorsement deals.

All of the things that I fought for in my life are finally becoming possible. I was diagnosed with an AVM in 2001 before social media support groups. No one knew anything about this rare congenital condition. Now, we have crowd sourcing shows to share information and help find answers to unsolvable medical mysteries

My TMJ problem has always been a source of embarrassment for me because neither the dental or medical community recognize it as a specialty, but after years of advocacy and showing up to government meetings even when my father said things like ‘what are you gonna schlepp there for, you can’t change anything’ or when I spoke to my cousin who is state senator about ways to lobby the government about this issue and she replied ‘it takes more money than you have’ or when I called my sorority sister who works for the CDC and she told me that ‘Congress needs to designate funds for research before they will add it to their list of recognized diseases.’ Or my former father-in-law who was the president of the American Dental Association whose entire campaign was spent making sure that the state of Alaska had access to dental insurance, while I explained that more than 10 million people are being maimed by uneducated doctors who hold themselves out as specialists and rob desperate patients of their last nickel.

None of these people listened, and none of them are listening now….But with the advances in the genome project and the findings that show a correlation between TMJ dysfunction and connective tissue and autoimmune disorders, we are finally making strides to push this disease into a category that the medical community will take seriously because the first sign of chronic disease may be evident from this joint, which has been overlooked and dismissed as a dental problem.

For my entire life, skin rashes and jaw pain were handled by dermatologists, allergists, orthodontists and oral Maxillofacial surgeons…but a rheumatologist may have been able to halt the damage to my joints and saved me from the pain of diagnostic tests and from the financial burden of a medical problem that was being handled by the wrong profession. Rheumatologists deal with joint damage from Psoriatic Arthritis and Ankylosing Spondylitis. These joint replacement surgeries are covered by medical insurance, but the same PSA that attacks hips and knees can also destroy a TMJ. The TMJ is excluded from coverage because it falls in a dental category. So the same disease that can require surgery of my elbow, wrist, knee, ankle, hip, and shoulder will attack my jaw, but I am responsible to pay out of pocket. The system needs to fix this.

Especially when my jaw is even more prone to failure as a result of the foreign body giant cell reaction from the Silastic implants that the FDA pulled off the market for TMJ trismus use in 1993, the very year that I received my third set. Why should I suffer absolute poverty because of a glitch in the system. How long will I have to fight. What celebrity will need to suffer before I am taken seriously. Which artist or athlete is valuable enough to elicit change.

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