Without getting into specifics, the last few months have been some of the hardest in my life.
I’m on the upswing right now (knock on wood, pray I don’t jinx it), but I imagine this fall has been just as difficult on my loved ones.
So this Thanksgiving, thank you to everyone in my life whose patience is unending and whose loyalty is unwavering and who still love me no matter what side of myself I reveal to them.
An extra special thank you to people who encourage me to share stories and write and try my hand at being creative (however infrequently). Thank you for making me feel like I have something worth saying.
I’ve been trying to write a post about turning 25 for weeks and it hasn’t been happening.
(By the way, I turn 25 tomorrow!)
Every year, I have a minor existential crisis before my birthday. It’s just a fun little tradition I do. (Drives my family and friends nuts, but I think they’re used to it now.) I freak out that I’m getting too old too fast, that I haven’t done enough, that I’m not good enough—but I also get excited, too.
I expect to wake up the day of my birthday every year and experience some cosmic shift in the universe where I will feel different, have the clarity I’ve been ambling after for years, finally attain maturity, and understand who I am and what my purpose is.
It hasn’t happened yet, but I’m still hoping it will on Friday morning when I wake up, because it has to at some point, right? Just statistically speaking?
my 21st birthday, the height of my maturity
I never give up hope that one day everything will just click together and make sense. I’m hanging onto the dream that one day, I can take a deep breath and say, “So that’s why.”
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The last few weeks, I’ve been psyching myself out over the fact that I’m officially a quarter of a century old, as if 25 is so much more significant than 24. Although tomorrow I will be able to rent a car *AND* run for the House of Representatives. (My Congresswoman is up for reelection next year. Should I run against her? Linford 2017?)
A quarter of a century means I’m eligible to have my quarter life crisis. (Declaring you’re having one before 25 is so morbid, people lambast you when you say you’re experiencing it at 20, I learned several years ago.) And boy! The confusion of “what do I do now?” with my treatments makes me feel eligible for a crisis.
So between all of that that, a meds change I went through at the end of August, the season change affecting my POTS, my brother moving out (we miss him, even though he’s close), and going back to school—I’m a bit of a mess.
I’m experiencing the highest highs and the lowest lows.
And it’s hard for me to reach out beyond my parents and my therapist. Sometimes, even though writing is hard, it’s easier to post a long, sweeping public release on my blog than it is to text the people I love the most that I’m sincerely terrified, not just ALL CAPS NERVOUS ALL THE FEELS. I’m trying so hard to change. I’m trying so hard to learn why this is. At least I know I’m not alone in being this way. Thanks for that, Tumblr.
source: lordoftheinternet on Tumblr
Changing and growing up is the worst. And even if in the grand scheme of things, I’m still young, I’ve got plenty of time, I feel like the Big Cosmic Clock is ticking. It’s scary. And fear doesn’t mix well with chronic illness, especially when you’re predisposed to have heightened levels of adrenaline running through your body.
I’m learning. Even when I don’t want to, my therapist is holding me accountable to learn more about myself every week, even the weeks when I walk in to her office exhausted and ask her to do all the work so I don’t have to. “But what fun would that be?” she usually says back to me.
I’m choosing to have faith in the people who tell me everything’s going to be OK, even though making the choice to believe isn’t easy. Usually, when they have Ph.D.’s and M.D.’s after their names, I’m more inclined to believe them. I’m hanging in there. Therapy helps. My support system helps. Long, long baths with Bath and Body Works aromatherapy products help. Music helps. (I’ve started listening to Laura Stevenson, and she’s some kind of wonderful.)
Exactly 10 years ago, my mom took me along with her, her siblings, their spouses, and my younger cousin Zach on a 10 day cruise to the Baltics. (My dad was slated to go but had to work so I scored his ticket instead. Thanks, Dad!)
THE FAM
It was the vacation of a lifetime: we spent days walking through gorgeous, timeless cities, I got to try my hand at photographing old buildings, we stuffed our faces at the 24/7 all you can eat buffet in a very American fashion, I spent hours in the cruise’s pools, and it was something I will never forget or stop cherishing.
It’s also something that I’m so glad happened exactly when it did; because while my POTS was undiagnosed, I was in a good place. I was physically fit, I could manage long walks and I could survive on less than 10 hours of sleep a night.
Right now, my health is a little rocky, and sometimes I get a little down about if and when things will get better–so I hold on to the fact that, “hey, something amazing happened at exactly the right time.” I remind myself that as a teenager, even without the power of diagnosis and treatment, I was strong, had a perfect experience, and it brings me comfort when it’s hard to stay optimistic about when I’ll feel better.
Because as a teenager, I had so much strength. I’d even go so far as to say I had energy, in a POTS-y sense. The energy that lets you wake up without hitting the snooze button, that is.
Ready to steal that boat in Stockholm and claim all of Sweden for myself
Our 10 day cruise was more about exploring than relaxing. Each day was long and grueling on my body. We walked for miles and I kept going and going (not without complaining–I was 14, mind you, it was my right) but my body held up for the most part.
Tallinn, Estonia was the most unexpected dream of a city. We walked the furthest and up the most hills that day, but the view was worth it.
The prettiest view of Tallinn, the most underrated city in Europe. I’d walk up hills to see this again.
The interesting thing now is that I can look back and pin point all of the different signs of POTS. Even though I slept plenty every night, the fatigue was extreme and draining–I couldn’t understand it. I tried to fight it in the car as we drove through cities like Gdansk and St. Petersburg but I *had* to nap to keep my sanity.
This was the first photo I took in St. Petersburg–early morning with sleep still in my eyes from dozing in the car on the way to the cathedral. It was beautiful and perfect.
I remember trying to walk down steps of a museum and feeling a complete disconnect from my body–I felt like I was back on the cruise ship while it swayed with the waves but I was on solid land. I was familiar with this vertigo, it happened all the time when I was exhausted. I had my arms out on either side of me like a toddler learning to walk while I made my way down a large, red carpeted staircase. I wonder what the museum guards thought of me.
I remember the intense dehydration I’d experience–and how I was never satiated. I would fumble with foreign money, apologizing over and over as I haphazardly flung coins at cashiers in gift shops while grabbing whatever water bottles I could find (which all turned out to be seltzer.) (My apologies, all of Scandinavia!)
After our visit to the Sibelius Monument in Helsinki (that’s my aunt in the brown shirt!), I went to a gift shop and rather than buy a souvenir, I almost ran over fellow tourists in my search of hydration. I was a woman on a mission.
I also remember the crazed feelings of panic I’d get from standing around for too long. A few years ago, I noticed that I get mild to severe panic attacks in museum settings due to tachycardia from standing, the sensory overload, and overcrowding. I can’t imagine or remember what my tiny, 14-year-old brain who had NONE of this information back then felt.
I FLIPPED out while touring Peterhof, home of Peter the Great, in St. Petersburg. There were so many people, so many rooms, so many paintings–my brain, my body, my ANS, couldn’t handle it. I still managed to love it though–the insane gold rooms and overly ornate furnishings, what’s not to gush over?
There were SO many signs back then about POTS–but even through those signs, those symptoms–I was kicking POTS’ butt.
I was the most excited about being in Copenhagen. My family is fairly Danish and I researched Denmark up, down, left and right before we got there. Visiting the Amalienborg Palace was thrilling.
One day coming back from the boat from our excursion, my cousin and I were craving cheeseburgers and knew we had to get to the restaurant on the top deck before they closed at 6 to order them. Knowing it’d take too long to wait for the elevator, we ran up 10+ flights of stairs in 15 minutes before close to get them. No cheeseburger has ever tasted so good.
My designated walking shoes for the trip gave me blisters the first day I wore them so I threw them out and tackled miles of Europe in flip flops. If that’s not a feat (puns!) of the body, tell me what is.
The GORGEOUS city of Gdansk, Poland is the one where I tore my feet up. It was worth it and I’d do it again for those colorful buildings and beautiful church.
When we returned to the cruise ship every day, I went swimming and perused what the boat had to offer me. I hardly took any extra naps… aside from the ones in the car rides.
My cousin Zach and me, chillin’
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When we got home from Europe, I crashed for days and when I was awake, talked about nothing else except for My Big Trip for months. (It’s 10 years later and I’m still talking about it.) (I also eagerly watched High School Musical 2 which had come out while I was overseas. Hey. Just putting the era into context for you–2007 was a magical year.)
But it was more than a really good trip–it was a huge physical accomplishment–especially now that I have the context of what my body was going through.
In a very Disney Feel Good way, I’m proud of myself for getting out there every day and walking, discovering parts of these beautiful cities–even if I did do embarrassing things like break down and cry in a train station on the last day because I couldn’t decide what I wanted to eat. (The stereotypes about girls are true–we don’t know what we want to eat. Especially when we’re 14.)
Chillin’ with Hans Christian Andersen’s Little Mermaid in Copenhagen on my last day
I was so lucky to get to visit seven different countries in just ten days–several of which I have ancestry from. I’m so lucky that my health, while not perfect (it never has been), was as good as it was for those seven days.
And yes, I highly recommend all of Scandinavia + its environs to visit. Even with POTS.
Because you can have symptoms and still have the trip of a lifetime, one that you’re nostalgic for every day, even 10 years later.
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.
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Day 1
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.
Day 2
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.
#SQUAD GOALS
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.
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Day 3
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–
“Exercise by itself is not a sufficient treatment. It’s very important to get to the root of the problem.” -Dr. Kamal Chemali #dysconf
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!!)
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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.
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.)
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.
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.
Meeting with Senator Kaine’s office was great—it was definitely a 
