There are a few unchanging truths about me as a human being:
- I love Stephen Colbert
- Yes, I want to see a picture of your golden retriever puppy, did you really have to ask?
- I hate exercise
Here’s the catch about me and exercise, though: I’ll do it for a good reason. Usually, that reason is to get my doctors off my back.
I have a really good new reason though. In 10 days, I’m going to walk and raise money for my all time favorite charity, Dysautonomia International.
YES. I’m willing to walk a mile in the middle of June for them, because here are some of the things they’ve done for me:
- They provided me with information about dysautonomia and POTS, teaching me what my previous doctors could not
- They connected me with my cardiologist (one of the top POTS experts in the world)
- They provided doctors with powerful education seminars and tools to give them the information they need to accurately diagnose and treat dysautonomia
- They introduced me to hundreds of people and made me feel so much less alone in this disorder that went undiagnosed for 10 years
- They provided me with the best support system I could imagine (love y’all)
- They empowered me to be a stronger self-advocate not only in my doctors’ offices but with my own government
- They gave me opportunities to volunteer and give back to my community
- They fund tons of research studies
- They gave me opportunities to participate IN those research studies
SO HERE’S WHERE *YOU* COME IN.
Dysautonomia and POTS are so, so common but barely have any recognition or funding.
In the United States, an estimated 1 to 3 million Americans have POTS. By comparison, 400,000 people in the United States live with Multiple Sclerosis, and 1 million have Parkinson’s. Nearly everyone is familiar with MS and Parkinson’s—as we should be!
I want POTS to have the same recognition and funding as MS, as Parkinson’s. I want every disorder that affects and take so much from so many to have adequate funding for research.
I want it so badly that I’m willing to do what I hate most in the world—
In the middle of June.
So, will you sponsor me?
I know a mile doesn’t seem like much, but I currently do about 15 minutes of cardio every day on my recumbent bike—and walking a mile will be a huge challenge for me.
One of my cardiologists told me, “You will never enjoy exercise, your body was designed to hate it.” I suffer from excruciating back pain when I go walking in addition to tachycardia, sweating, joint pain, weird tingling sensations and general grumpiness. (Tell me you wouldn’t be grumpy if everything in your body hurt.) But the statement this makes: that I’m doing what I can, that I’m on my way to recovery every day, and helping Dysautonomia International in the process? Let’s do it, man.
It would mean the world to me if you could spare a couple of dollars for Dysautonomia International—I volunteer what I can to this amazing organization that changes lives, and if you could help us continue what we do with a donation—I would appreciate it so much.
I realize this was a bit long. But that’s a fourth fundamental truth about me—I have difficulties being concise.
I’ve been a volunteer with Dysautonomia International since 2014 and the biggest part of our year is the annual patient conference. This is my fourth year attending the conference (four for four!) and the third year as a volunteer. I am as excited as ever because this year has some really exciting things in store.
I’m local to the area but this is the second time I’ll be staying at the hotel so I can waste less time driving and sitting in traffic and spend more time with friends, learning and gearing up for more fun at the conference. Every time I get ready to stay at the hotel and pack though, I feel like a deer in the headlights. What to bring? What to leave at home?
To save time, I sat down and figured it out. Here’s my finely tuned packing list. You can trust me, I’m a #DysConf expert.
Turquoise, because #MakeNoiseForTurquoise
Your shirts, your pants, your dresses, shoes and underwear. Even if we can’t see the turquoise you’re rocking, wear it anyway and get in the mood because this is the ultimate in Dysautonomia Awareness Weekends.
Everything you need to function. Your pills and vitamins, your compression stockings, your binders and braces, your special pillow that puts you at an incline so you can finally sleep properly. Start your personal packing list tonight and work on it every day as you use your “must haves” so you know it’s complete.
A couple of snacks
The conference will provide water and salty snacks but I like to bring my water bottle, a daily Gatorade and a few of my favorite treats so my own daily routine is consistent. (Gotta have those 2 PM pretzels.)
Comfortable clothes for conference sessions
Keep it casual and comfortable during the day—the schedule is busy so don’t sacrifice feeling well for looking high fashion all day, unless you finally unlocked the secret to cozy couture.
A light jacket or sweater
Even though it’s the height of summer in the muggy Mid-Atlantic and the hotel staff goes above and beyond making accommodations comfortable for us, the indoor temperature can fall and rise depending on the size of the room and how many people are in there. Bring a light sweater or jacket so you’re not left sweating or shivering.
An outfit that makes you feel fabulous for the awards banquet
The Saturday night awards banquet is all about dressing up and having fun. It’s cocktail attire so no need for prom dresses and tuxes–wear something that makes you feel as great as you are. If you need ideas, check out the Facebook albums of past conferences.
A swimsuit and/or workout clothes
The hotel has a pool, hot tub and fitness center for your daily exercise or if you want to relax at the end of the day.
Your favorite pajamas
There will be pajamas parties aplenty so be prepared. Extra points for bunny slippers.
Photographers will be all over the conference but they won’t be able to get every one of your selfies, pictures with new friends and every funny video of karaoke night. Take tons of photos this weekend and share them with us online with the hashtag #DysConf, we would love to see the conference through your eyes.
Extra space in your suitcase
As always, there are awesome baskets up for bid at the silent auction and a merchandise table at the vendor fair. There will be shirts, jewelry and books for sale by presenters.
A notebook & pen
I like to get a cheap notebook before the conference as my “everything” notebook for the weekend. Combined with the slides that the doctors are usually generous enough to share with conference attendees, it becomes my resource for dysautonomia information, thoughts and information. I like writing down quotes that resonate with me, possible symptoms and syndromes that I want to look into more with my team of doctors, contact information for new people I meet and even funny doodles.
Something to wind down with
The conference is busy and exciting and even though you’re going to have a blast, it’s good to take a break during the day and calm down at night with a book, some relaxing music or a TV show on a tablet or computer. Bring some ear buds, your iPad or Kindle or your favorite paperback.
If you plan on sight seeing downtown D.C., bring:
- lightweight and light colored clothing
- the most comfortable walking shoes you own
- sunglasses, hats, sunscreen (yes, all three!)
- your water bottle
And word of advice: schedule way more time than you think you’ll need, especially if you’re taking the metro. It’s going through a rough time right now.
If you forget anything, don’t panic! The hotel is located in Northern Virginia where a fundamental truth stands: you are never more than 15 minutes away from a shopping center. There are grocery stores, pharmacies, hospitals, shopping malls, all steps or mere miles away. If you’re without a car, there’s a high likelihood you can become good friends with a local at the conference or a volunteer who can give you a ride, so no worries.
So get your bags ready and we can’t wait to see you!
LET’S DO THIS.
Dysautonomia International knows how to party. They know that #GivingTuesday is the best, and want to make it last every day of December.
I used to think of charity in the abstract. I participated in service projects, I bought wristbands, I practiced my vocab to donate grains of rice. I gave $5 here and there as a kid to my church humanitarian fund, I read books to some kids, and I baked some cupcakes. Y’know, charity.
But none of these left a lasting impact on me.
But now that nonprofits like Dysautonomia International are one of my major support networks, I’m learning how important it is to find one that means something, anything to you, and to be involved in any way, shape, or form. And whether it *is* buying a wristband, whether it’s baking some cupcakes, whether it’s donating $10—as long as it’s FOR something greater, something that means something to you, that’s meaningful.
I’m giving what I’ve got to Dysautonomia International for #GivingTuesday and the month of December because they’re looking to expand their physician education programs, and I’m really excited about that! I cannot wait for the day that all of my doctors are familiar with dysautonomia and POTS because despite all of my studying, I do not always understand medical terms, I can only guarantee that I understand what I feel and experience in my body. I cannot wait for doctors to be educated so that other people can get diagnosed quickly and will not have to wait a decade like I did. Physician education is such an exciting project, because it brings us one step closer to everyone’s goal: a cure for dysautonomia.
Donate to Dysautonomia International here