What a month

It’s been crazy.

I’ve always loved the fall. It’s just a superior season to everything else, because I can finally break out my jeans and hoodies and large assortment of hats. And stop shaving my legs. It’s a good time to be a human being. Sure, season changes mean major pain for POTSies and patients of all forms of dysautonomia, but I think it all balances it out. I’d rather have body aches in the fall than feel pukey in the summer.

So, what have I been up to this glorious month?

I turned 26

My friends and I spent my birthday weekend having fun dinners, hanging out, and watching our favorite shows. Shira came out from GW and we had a great day catching up, exploring what little there is to explore in Fairfax County, and having an awesome dinner at Founding Farmers in Reston.

Shira and I met a nice panda bear outside of Founding Farmers

We also had a family dinner at one of my all time favorite restaurants, Sweetwater Tavern. I’ve gotten the same birthday dinner for the last several years, a filet and crab cake. Please, if you find yourself in Northern Virginia, treat yourself to this meal, because they know what’s up.

The best part of my birthday (besides spending it with my close friends and people reaching out to me to wish me a good one) was my birthday fundraiser for Dysautonomia International. I did one last year that I was super proud of—I raised $300, and my goal had been $250, $10 for every year I’d been alive.

This year I had the same goal, $260, $10 for every year of my life, and my friends and family went above and beyond in every way possible. The fundraiser ended with $801 total, a large part of that from my insanely generous big brother.

I’m so humbled by the generosity of my loved ones and the loved ones of my parents who donated—I’m so lucky, and Dysautonomia International is going to use this money for great things.

I taught my church group about dysautonomia

My church takes activities planning VERY seriously and named me one of the activities co-chairs last month. I told them it was a huge mistake, that I’d be bad at it (even though everyone else in my life said “oh, you’d be PERFECT for that!”), and my church leaders said, “oh great, a chance for you to grow!”

I wanted to make a bunch of turquoise ribbons and bags of candy for an event and had to think of an activity for one of our Monday night get-togethers, so I combined the two. I got to teach everyone about dysautonomia and POTS and put them all to work. It was great–there weren’t many people there that day, but they were receptive. They asked questions. They were surprised when they learned how common it was. And they were so helpful.

So, if you’re ever in my position: you’re an activities director with a need to plan something, put your church group to work.

The Town of Leesburg declared October Dysautonomia Awareness Month

Every year, volunteers for Dysautonomia International across the world reach out to their local government leaders to ask that they declare it Dysautonomia Awareness Month in their respective towns, counties, states. I did the same. The town council and mayor of Leesburg, VA issued a proclamation declaring it Dysautonomia Awareness month and I got to speak a little bit on why it’s so important that we recognize dysautonomia and its related disorders.

A group of dysautonomia warriors (including my parents and big brother) came out to accept the proclamation from the Leesburg Town Council

I hung out with some neurologists

Lauren Stiles, queen/President of Dysautonomia International (and really just queen of dysautonomia in general), invited me to be one of the exhibitors at the American Association of Neuromuscular & Electrodiagnostic Medicine Conference at National Harbor. I was excited for the experience, because I love a good conference, and despite living in the DC area, I’d ever been to National Harbor before. It was nerve racking though—while I love talking about dysautonomia and POTS to my friends and people I meet day to day, I’m very nervous when talking to doctors.

Lauren Stiles and me at our booth

I was very symptomatic, but I had a great time watching doctors get interested in dysautonomia at the conference. So many of them have dysautonomia patients but don’t have the resources to treat them, and Dysautonomia International is there to help by facilitating physician education programs with those doctors at their hospitals or universities.

I got a zebra friend from the National Organization of Rare Diseases


We lit up the Capital Wheel turquoise!

While we were at the AANEM conference, we planned a get together at National Harbor. We lit up the Capital Wheel at National Harbor turquoise as a part of Dysautonomia International’s campaign to #ShineaLightonDysautonomia this year and it was STUNNING. The first night of AANEM was the test run for the wheel and Lauren and I rode the wheel which was amazing. It was so beautiful up there—scary, but beautiful—and seeing a monument lit up for your organization and cause is exhilarating.

The night of our get together (that we intended to take big group photos with the wheel), had POURING rain, the type of rain where you step outside for two seconds and you’re soaked to the bone.

Still, a huge group turned out for dinner and we had a great time getting to know each other, talking about what does and doesn’t work for treatment, lamenting over how awful the barometric pressure changes have been making us feel (season changes are not kind to POTSies!), and adding salt to our food.

Dr. Abdallah and me! I haven’t seen him in months and I was so excited to tell him how well I’ve been doing. He was so happy and thrilled for me. He’s one of the most compassionate doctors in any field and dysautonomia patients are lucky to call him ours.

I launched Dysautonomia International’s 2018 Online Charity Auction

Over the last few months, I’ve been reaching out to independent businesses, online shops, artists, stores owners with connections to dysautonomia, and asking them to contribute to our online auction. I did this last year and we had great success, and I’m excited to see how it turns out this year!

Visit the auction here and bid on items before in closes on November 2!

My friends raised awareness

It’s been a great month. Busy. So busy. I love Dysautonomia Awareness Month because everyone rallies together to do their best work to raise awareness in 31 days.

One thing that really touched me was when my best friend Erin, dedicated her precious puppy’s first birthday to Dysautonomia International:

View this post on Instagram

For my birthday, it would be a real treat if you could help contribute to a cause that is near and dear to my Mahm’s heart ☺️ October is Dysautonomia Awareness Month. Someone that my Mahm loves very much is affected, and since dysautonomia isn’t rare, chances are someone you love may be affected too. 💙 . ➡️ SWIPE for more info ➡️ . . The autonomic nervous system regulates functions throughout the body that we don’t normally think about, but they happen anyway- so dysfunction can be debilitating 🧠🌪🤕 . . You can click the link in my profile to donate and support research and education that ultimately benefits those living with autonomic nervous system disorders. 🔬💊📈 . . . #corgisofinstagram #puppiesofinstagram #puppy #corgipuppy #apollosfriends #corgis_of_insta_pic #corgibums #corgisftw #corgis_of_philadelphia #corgisareawesomee #myfavcorgi #KONGdog #bootycorgis #tricolorcorgi #corgi_ig #threecorgis #cutenessoverload #thedogpeople #buzzfeedcorgis #corgithecutie #cutecutecorgi #friskyinphilly #corgidays #dysautonomiaawarenessmonth #dysautonomia #whatisdys #shinealightondysautonomia

A post shared by Wembley the Corgi 🧜🏻‍♀️🐾 (@adventuresof.wembley) on

Thank you

For being there. For reading my posts. For celebrating my birth month and my favorite awareness month.

It’s been an incredible October.

I can’t wait for next year.

Refills and phone calls

Comments

  1. Mindy McALlister
    October 31, 2018 - 9:09 pm

    Well it looks like you are doing some great work! I’m sure it’s weirs talking to doctors but who better to speak to them than someone like yourself who has been through so much. Lauren picked the perfect person for this role. Thank you SHannon! Also, what a huge undertaking it is to ask for donations for the auction – great job and thank you again.

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