Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time talking, but there is so much activity that I sometimes wonder, is this really me? Is this the same girl who loves trying to break her record for how long she can sleep?
I’m a volunteer every year, so my #DysConf experience is very different than the average guests’. For me, #DysConf is non-stop. It pushes me to my limits physically, intellectually and emotionally. I usually spend at least a week recovering, which is why my recap takes a little while. (Forgive me!)
But even though I’m tired and sweaty and sore throughout those four days (and days afterwards), I love every minute. I love handing out badges and folders and goodie bags to people checking in. I love posting pictures to Dysautonomia International’s social media. I love helping run the teens program and being one of the first fellow POTSies first time guests meet. I love the Photo Booth at Karaoke Night. I love everything about it—because for four days, everyone gets me. Everyone can see in my eyes when I’m fatigued and they understand it. If I tell someone I *need* a 15 minute break to lay down, they know I’ve reached my limit and I’m not dodging responsibility—I really just need a rest.
I love this weekend because it’s the anniversary of when I was first diagnosed—when I jumped into this world feet first, and I finally had a support system that recognized, “Hey. You weren’t faking or exaggerating anything AT ALL.”
I love this weekend because not only do I get to be myself, I get to be more than myself. I get to help others in the same way that someone helped me a few years ago.
So every year, let’s do this. I can convince my body to keep going, going for #DysConf.
I arrived at #DysConf around 10 am on Friday. The hotel was just regaining power after a horrible car accident had knocked out the power in the area and blown a transformer. Tysons Corner is a CRAZY place for traffic (and one I’d avoid at all costs except two of my doctors are located in the heart of it) but thankfully things were lightening up by the time I got there.
The workroom for volunteers was full of boxes and desks and was the only legitimately cold/nice room in the conference area of the hotel (well, to me, at least. I’m overly sensitive to heat and sweat like a maniac.)
I got to work right away on stuffing folders with some other volunteers then moved over to loading flash drives with the PowerPoint presentations. (Yes, that’s done manually!) Katie, her mom, Emily and I loaded 600 flash drives using as many computers as we could find. (Katie had three, I had three, Emily was using her tablet.) Somehow we managed it within a couple of hours.
Every time a new volunteer showed up, we all got into a frenzy because it’s usually the same gang that signs up every year—over the weekend we morph into a hyper supportive family and it’s so good to see familiar faces.
And I can’t even tell you how happy we were when Elyse showed up—she’s the only person who could motivate me to take a spin class.
The infallible Elyse
Katie and I took a little time to cool down after setting up flash drives and getting cups set up for the goodie bags. We checked out our hotel room—on the 24th floor!—and had some snacks before we prepared ourselves for conference check in.
Being on the top floor, we had a view of terrifying clouds making their way into the area which was nerve-racking as conference guests were supposed to be landing at the local airports and driving in from who knows how far away.
When we were setting up check-in in the lobby, the storms finally started to break out. The lobby we were in was an atrium and at times the sound of the rain on the roof overpowered our voices. We were reading Facebook status updates from friends who were on airplanes trying to land at Dulles but were being diverted to Richmond because of how nasty it was (shout out CeCe)—I think the airport actually shut down at one point.
We kept going though—checking in soaking wet conference guests, giving them their freshly assembled folders, name tags, lanyards and goodie bags. Kyla and I checked people in together and competed for who could find the name tags quickest at our table and since I’m not sure if she reads my blog, I’m going to say I won. (Ha! Take that, Kyla!)
Katie and I FaceTimed Shira before we started our teens programming—Shira couldn’t come to #DysConf this year because of her health—but she was holding a Sick Chicks birthday party at home in California, so we introduced our attendees to each other and said “I love you” a million times.
Around 7, Katie and I started the teens program together. My loud voice came in handy for corralling kiddos and getting their attention. We did some opening ice breakers and had snacks with them, mingling over popcorn, pretzels and Gatorade. Katie ran through the conference programming with them and we invited them to play games with us for a while and tried to help the shy ones break out of their shells—it went especially well at the Apples to Apples table. (But doesn’t it always with that game?)
adding an additional hand to Dysautonomia International’s logo
I was running some other errands around the conference when Katherine finally showed up (she flew in from Boston after work—her flight was cancelled and we were afraid she wouldn’t get in until morning) and I lost my damn mind when I saw her. I hadn’t seen her since last conference (although we text preeeeetty constantly) so it was so. damn. good. to finally see her again. Katie, Katherine and I #squad hugged it out with her and then got anxious about seeing Daniel and waiting until we could FaceTime Shira some more.
We ordered a pizza and ate it on the floor of the staging room around 10 pm after Daniel FINALLY showed up—we’d been working ALL day and we were *READY* for dinner. My stomach hurt a bit afterwards (ugh) so I went up to bed early but I felt so much better when I took my evening meds and got to spend time with friends and looked over the schedule for the next day.
Everything hurt on Saturday morning. My body was so sore but we got up and ready to go.
#DysConf officially kicked off immediately after breakfast (which I wanted to stay at forever because there’s something about a buffet full of scrambled eggs and home fries that inspires me to never leave) and I was off in a storm trying to document everything for social media.
Every year I do social media for the conference and some years and some days I’m better than others. On Saturday morning there was tons of exciting stuff to check out—like an acupuncture session in the “Zen Room” which had sessions all weekend on things like yoga and meditation… and needles in your skin. People were loving it though and tried to convince me to stay when I popped my head in. (No thanks, just the idea of it made me tachy.)
Awesome quilt where people wrote their names, locations and length of time it took them to get diagnosed
Lunch was super fancy—we did an Awards Luncheon this year rather than the Awards Dinner like we did in the past. My friends and I grabbed a table up front so I could grab pictures (and also just so we could enjoy the show.)
Dysautonomia International celebrated its Five Year Anniversary and we showed a video that practically put me in tears. Ellen and Lauren handed out the awards which also warmed my sometimes-cold heart all toasty. Everyone who volunteers and puts their heart into dysautonomia research and advancement is such a superior class of human (in my humble opinion)—Erin and Taylor won Volunteers of the Year (they put on the Race to Beat POTS I went to!), Dr. Goodman won Physician of the Year and Irina won the Amelia Moore Sparkle Award which is so well deserved. Irina does *so* much thankless work, writes up so many explanations on the Dysautonomia International Facebook page and website and makes difficult to understand information accessible to everyone. She’s absolutely BRILLIANT. (#fangirl)
As many members of the Dysautonomia International Medical Advisory Board, Board of Directors and Patient Advisory Board that we could corral at lunch
In the time between lunch and the next set of sessions, I practiced for my presentation on Hope and Recovery, specifically aimed at teenagers. Unfortunately, I was crazy unfocused because I’d been running around all before lunch and now I was a little foggy after eating.
Katherine and I were two of the presenters for Hope & Recovery along with two absolutely lovely ladies, Tess and Emily, who knocked it out of the park with their speeches. I was insanely proud of all of them and so happy to be in their company, and was happy that we all got to deliver authentic messages that weren’t overly saccharine—just 100% true to our experiences. (This includes Katherine, in case I wasn’t being clear. Everyone is just amazing.)
Emily, Tess, Katherine and me coming atcha to give you hope
Afterwards, I literally ran to my next room where I co-presented on POTS in College with Jenny. This one got a *little* dicey. Our presentation was more in a panel format and we wanted a lot of participation from our audience—but it got a little out of hand here and there. There were disagreements about what colleges are and aren’t legally liable to do; what types of things “all” people with dysautonomia experience, etc., but I felt like we handled it well and that was confirmed to me a half dozen times by kind people who came up to me after the presentation who said we did great. (Thank you, kind people! I wish I could buy you an ice cream!)
Again, I had to run to leave that presentation and go straight to another room so I could introduce one of Dr. Glen Cook’s presentations. He’s been on the Medical Advisory Board for a year but I hadn’t gotten the chance to formally meet him yet. He’s super kind and I would have loved to talk to him longer.
After taking some pictures, I sat in on one of Dr. Opie-Moran’s sessions about relationships and chronic illness. I’ve gotten to know her at conferences over the last few years and can’t say enough nice things about her—she’s absolutely lovely and makes me feel calmer just in her presence. (She’s a psychologist, so that works really well for her.) I try to attend as many of her sessions as possible and take her ideas back to my therapist (I’m convinced they would work in the same practice if Dr. Opie-Moran didn’t live in the UK) and loved her ideas and the way she did her slides. (She always throws some jokes in.)
Good social connections give you better health! (Dr. Opie-Moran says so!)
Quick shout out to Crista who rescued me that afternoon as well—I can’t imagine how bad I looked but she saw me, forced me to sit and got me two water bottles and a bunch of salty snacks. Bless you.
Afternoon sessions closed up for the day and I got to talk to my Mom who was there for the day and lots of guests from the conference. I got to meet some of my blog readers (Hi Mindy and Lindsey!!!!!) and I hugged way more people than probably wanted to be hugged by me. (I’m very sorry, but that’s just how I get at #DysConf.)
Katie, Katherine, Daniel and I left the hotel and grabbed dinner at Silver Diner. We shared a disgustingly delicious plate of cheese fries (yummm) and I ate pancakes before we trekked it back for the evening.
We FaceTimed Shira in at dinner
We had to split ways for the night—we had some different responsibilities and Katie wasn’t feeling well—I mingled and talked more before hitting the dessert reception/karaoke party. I didn’t sing (well, not until Bohemian Rhapsody at the very end of the night with a huge group)—but I did take TON of pictures with lots of people.
I woke up the same way on Day 3—incredibly sore body, hungry for the breakfast buffet, but determined to get going.
Before I hit up the opening session, I got to try a free paraffin wax treatment on my hand which was awesome—it was SO hot but my hand that got the treatment (which are already pretty soft) felt even smoother even a week later it feels softer than the other.
I loved so many of the sessions of Sunday—there was an autonomic testing demonstration (the person who volunteered was so brave); Dr. Chemali, phenomenal neurologist and also an incredible pianist!, gave a session on the autonomic nervous system and music; and the phenomenal and perfect Elyse Schwartz gave teenagers much needed coping skills for life as only she can.
Elyse with teens
I was definitely slowing down by lunch and even though the conference was almost technically over, we still had tons to do.
I went in for the closing Q&A with the expert panel which is my favorite session of the conference. Sometimes the doctors like to trail off with hyper-detailed information that goes over most everyone’s heads, but what I love most is when they disagree with each other (yes! Conflict!) OR when I get advice or a new motto I didn’t know I needed. This year I got a couple new mottos–
Immediately following the Q&A, I said goodbye to tons of people who were leaving—I got to connect with so many people this year that warmed my heart in so many ways. I’m so grateful that a lot of them live in Northern Virginia so I’ll get to see them again before next year. (There are so many people that I’m forgetting to shout out to and I’m so sorry the names aren’t at the top of my head—but alas, still a week of brain fog exists.)
After hugs on hugs on hugs, I got to work on Lobby Day materials with Katherine (Queen of all things Lobby Day) and Katie. We made schedules for 150 people (the meetings had been updated by the congressional offices as early as that morning) and we got them knocked out right in the knick of time. (We also had to make use of the printers at the front desk because they weren’t working in the business center. Whew. Good times when someone asked me to check them in at the hotel.)
I met my team at Lobby Day training that night—we got to learn some of the in’s and out’s of what to ask for, how to ask it, and how to leave an impression with members of congress—(pro tip: personal stories are what matter!!)
I love #DysConf.
I was diagnosed mere weeks before the first #DysConf in 2013 and the hotel it was held in was down the road from the house we lived in at the time. Even though I got sick at the first conference and couldn’t stay (the air conditioning didn’t work and I couldn’t handle it), #DysConf has been my lifeline from that point—it connects me to my community and reminds me why I need to do some things that are scary, like call my members of Congress and push for them to advocate for me, and reminds me why I need to take care of myself in ways I really don’t want to, like exercise. (Yeah, it always come back to that one, doesn’t it?)
#DysConf is a testament to not having to be alone anymore. It’s how I meet and connect to people who support me and people I can support because I have grown stronger.
AND I HAVEN’T EVEN GOTTEN TO LOBBY DAY YET. (click here!)
Historically, #DysConf Lobby Days have been on the hottest days of the year.
This year, at with a high of 91 degrees, it was actually the coolest Lobby Day we’d had so far… and let’s just say I FELT every single one of those degrees.
We arrived downtown later than we’d planned and booked it to the Capitol for our group photo as best as a group of POTSies could. I got to help hold the banner in the front row (holding banners is a rarity for me as a tall person), but I was relieved when the photo taking was over because OH MY GOSH it was bright and hot out.
We would be talking with our members of congress about two issues that day:
- We would ask all of them to attend or send a member of their staffs to a Congressional Briefing on Autonomic Disorders this October
- We would ask them to help us obtain funding for a CDC Epidemiological Study on POTS (which has never been done before)
I met up with Team Virginia and we walked over to the Hart Senate Office Building for our first meeting with Senator Warner. I was assigned as Group Leader (AYYY!) and was a little jittery about it but felt confident as I spent the night before practicing and going over materials with Katherine and Katie. Plus, at my previous Lobby Day, Dr. Chemali was our group leader and he was the *perfect* person to learn from in terms of persuasive speech on dysautonomia. (Pro-tip: on your first Lobby Day, invite a world class physician to go with you and beg them do the talking. They’re AMAZING at it.)
Senator Warner’s office gives out peanuts in Virginia shaped baskets because #SouthernHospitality.
Our meeting with Senator Warner’s Legislative Aide went very well—she was extremely kind and passionate about her job. She was brand new to her position—just three weeks in—but had been working in the health care field for quite some time. She listened to us closely and thanked us for educating her on dysautonomia as she hadn’t gotten to learn about disease-specific issues in her career yet. We all felt very motivated after that meeting to go on to our other ones.
Our group split in half after that point—mine went on to meet with Representative Comstock’s and Senator Kaine’s offices.
Our feet and bodies were giving out so we Uber’d across the Hill to Rep. Comstock’s office and in the middle of the meeting we heard a huge blast but all thought nothing of it. (The meeting was going well, so that’s all that mattered.)
When we came out of the building, there were ambulances next to the Capitol and policemen blocking the streets and almost no cars anywhere. We later found out that a car had run into a barrier, injuring a policeman, and the police detonated the trunk to see if there was anything dangerous inside the car.
All while we were yards away. Always fun on Capitol Hill, right!?!?
Because of the blocked traffic, we had to walk back across the Hill this time (my shoes were tearing up my feet… NOT fun), and we hung out in the Dirksen cafeteria until our meeting with Senator Kaine’s office.
Meeting with Senator Kaine’s office was great—it was definitely a flashback to my visit last February—and his staff was so enthusiastic about health matters. It meant a lot to have our voices heard (and I did feel like our voices and concerns were heard by everyone we met with); it was heartening, it was what’s SUPPOSED to happen when you meet with your representatives. It’s these types of moments that legitimize Schoolhouse Rock videos—the process seems to be working correctly!
And if it doesn’t work correctly, we got e-mail addresses and phone numbers to follow up on continuously. 😉
We walked back to “home base” after our meeting which was a room at a United Methodist Church building on Capitol Hill where we provided more snacks and drinks where the buses could pick us up. But since the accident had closed everything down on the Hill, our leaders were scrambling to figure out where to send us to get picked up.
When we finally got on the buses home, my brain started to slow down… because this meant the conference was fully over. I tried to calm down, but I still had the adrenaline of the last few days in my body.
We got back to the hotel and I said more goodbyes (there are some people you have to say goodbye to at least six times) and my dad picked me up on his way home from work. I came home with way more stuff than I arrived with—I got to take home some leftover materials and souvenirs.
This was immediately put up in my room
I arrived home, had dinner, took an hour long bath, and was surprised at how long I stayed up that night—I was still wired. I missed everyone terribly from the moment I left, but was glad to be back in my own bed (there’s nothing better).
Lobby Day was HARD, but more so physically than it was mentally.
Taking meetings with staffers from members of congress isn’t as scary as it seems once you do it a couple of times—especially when you have a group with you. The hardest part was the walking (and the fact that my shoes betrayed me.)
Sharing our stories was easy and natural. We’ll be following up with our representatives’ offices to see if we can really make change happen (hopefully we can!)—but the important thing is that it’s in their heads now and that we’ll keep going back, even if it requires another visit in 90 degrees.
I’ll just bring better shoes next time and hope no accidents happen.
FEEEEEEEELING GOOD THAT LOBBY DAY’S OVER!
» #DysConf 2017 recap Part One here
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