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Monday, September 29, 2014


When people ask me "what do I do" it's not an easy one word answer. First of all I do a lot of things. I blog, I write, I take photos, I sing in a band, I bike, I decorate a room two-thirds of the way and then never finish, I'm on a life's mission to make the perfect dirty martini.....etc. If you mean my day job, well that's not a terribly easy answer either. Technically I do Government Relations work with a concentration in Health Policy. Huh? Yea we're on the same page sometimes:). I work for a non-profit organization that helps patients with very rare, chronic conditions afford their treatments and therapies. Our policy shop, where I work, is tasked with working on issues and legislation, on both the federal and state level, that help our patients get better access to insurance and affordable prescription drugs. 

Since we're a non-profit there are very strict guidelines (as there should be) as to how much we can lobby and we take them very seriously. But within the parameters that I can....essentially I work as a lobbyist. At least that's the easiest way to explain it so you have an idea of what I do every day. Here's where it gets fun. Within that sphere I also do Alliance Development, Grassroots Advocacy and manage our social media outlets. I have a lot to pack in a day, and on top of all of the areas I cover, I travel quite a bit. It's been almost ten years now so I've got the hang of it, but some days are just crazy and I do my best to keep my head above water. 

This leads us to the next question I get....."what do you do all day?". Ha! If you only knew:). I literally never have the same day twice, so I thought it would be fun to shadow myself for a day so you could see just that. Although the past couple years I've begun managing more of our state issues, this particular day I found myself in Washington, DC with a jam-packed schedule of meetings and the beginning of a two day conference. Is every day like this? No. But are 50% in some way or another? Yes. It can be challenging, but it's also really fun and rewarding, and I feel lucky to get to do work that fulfills me while at the same time knowing it actually does help people. No matter what our profession or life situation, the way we live today is manic and stressful, fragmented and over-the-top. Finding little moments to catch my breath and find humor in the ridiculousness of a day is how I make it through. 

So's my Wednesday......

5:15am  My dog Miss Austen wakes me up, as she does every day, because she's hungry and thinks I live only to serve her every whim. I tell her no in a stern voice and attempt to go back to sleep.

5:45am After 15 minutes of listening to her whimper, I try not to fall down the stairs in my groggy state because I have relented and am going to get her breakfast.

5:52am My alarm isn't going off till 6am today so I tell myself that I can get 8 more minutes of quality sleep. Delusional, but comforting.

6:00am The alarm goes off and I curse God! I'm so warm. My bed is so comfortable. Maybe I can convince congressional staffers to do all of our meetings on skype today? I could tell them I have Ebola?

6:07am I get in the shower still cursing God.

7:20am After a cup of coffee, a lot of under-eye cover up, a hair dryer and a little lip gloss I'm feeling human again and carry my four bags out to the car with Miss Austen dangling from my right arm. Why do I (and this dog!) need this much crap?

7:40am Drop Miss Austen off at my mom's house and feel the strong, familiar pang of mommy abandonment guilt hit my stomach. "See you Friday baby girl, momma loves you."

8:05am I'm on the train to DC and so excited to be able to catch up on some emails and cross a few things off my list so I don't have to worry about them hanging out there for the whole day. PS this is my "Amtrak breakfast of champions" and I rarely deviate. I am creature of habit. I also like to sit in the cafe car on the train because it's easier to work.

8:45am My email goes down!!!!!!!!!!!!!!!!!!!!

8:52am Email is also not working on any of my mobile devices!!!!!!!!!!!!!!!!!!!!

8:54am I start internally panicking because I'm in DC for the next three days and then KY for the first three of next week. %^&%&^$$^&!!!!!!!!!!!!!!!!

9:00am I reach the IT Dept at work and they begin to try and fix the problem. "Please baby Jesus!"I start working on my testimony for a hearing in KY next week.

10:15am I arrive at Union Station and we're trying an email work around but it's spotty at best. My blood pressure is rising a tad, but I am telling myself that surely carrier pigeons still exist and are working robustly in North America should I need to call on their services.

10:22am I have five minutes before I meet a colleague so I duck into H&M to maybe get something fun for the band's next show. I really don't like shopping so I squeeze it in when I can. Deciding that everything looks a little too Miley Cyrus I resolve to find something already in my closet and let the tweens do their thing.

11:00am We've had a good internal meeting so I feel like the next couple weeks are planned out but my email is still not really working. I may or may not have stomped my foot and shouted out an expletive at this point. Shake Shack seemed like a good idea given the circumstances.

11:16am We're in a cab on the way to Capitol Hill and my email seems to be working. My joy dissipates however when I see I have 127 new ones since about 8:15am this morning.

11:25am We get to the House side of Capitol Hill. I love this damn building and will never get tired of the view. I remember vividly the first time I got to go inside for work, not as a tourist. It was like Mr. Smith Goes to Washington and I called my Dad when I got home, practically screaming over the phone as I told him the story. I was so excited. I still feel excited every time I walk in.

11:26am If you turned 180 degrees from the picture of the Capitol you would see this view, Rayburn House Office Building. It's my least favorite because it's like a maze and I can never find my way out. We're here for a Caucus Hearing and a few meetings about a bill we're working on.

11:30am Today's hearing is for the Rare Disease Congressional Caucus. Caucus' are sort of like clubs you can join as a Member of Congress. They help you define your agenda and let the public know what issues are important and unique to you.

11:40am Congressman Leonard Lance (R-NJ) is co-chair of the Caucus and starts today's meeting. They're focusing on Out-of-pocket expenses (OOP) for patients with rare diseases and pathways for new treatment. It's important for us to be here because we have programs for patients with a lot of these conditions and whatever we can do to lower their OOP costs is paramount.

12:30pm We begin meetings with some members of this Committee for the next couple hours because they have jurisdiction over the bill we're working on and we need their support. We fan through the underground tunnels between the three House office buildings and I snicker at the young interns who are milling around. It still feels like high school sometimes.

2:45pm Meetings are done and I pop in the WC to check my makeup and make sure my hair doesn't look like a family of squirrels is nesting in it.

3:13pm We arrive at the Marriott Wardman Park (clear across town) for a Patient Advocacy Workshop. Patients who are attending the same conference come to these things to learn about how they can mobilize and organize in their own state to make a legislative impact. We're happy to help guide them and I love hearing the excitement of an advocate who's had their first experience meeting a Member. Yea they're just people too.

4:00pm My mind starts to drift. Stop thinking about that! You're only hurting yourself! I don't care! Stop thinking about that you're only torturing yourself! I don't care! Yes you do. You have to take care of yourself because there's no one else to. My sugar must be low I'll duck out for a coffee:).

5:00pm I hop on a conference call with the west coast.

6:00pm We have a dinner meeting at The Palm. It was too dark to get any pics, sorry, but the potatoes were kinda yummy.

8:00pm I have a drink with a fellow member of a coalition in KY. We're working on a bill together and she happens to be in town for the same conference so we plan out the next couple months of activities. This year KY has short session, which for them is 30 days, so it will all be over by February. Crazy, but true, so there is a lot of prep work and session really becomes the end of a process not the beginning. PS I totally forgot about my camera by this point.

9:30pm I finally check into the hotel I'm staying at for the night and hop in the shower. It makes me feel better after a crazy day like this.

10:00pm I start checking emails from the day and making my updated to-do list.

11:15pm I try and go to sleep.

11:58pm The pillows are too soft. Rats!

Time unknown.....I fall asleep and get up to do it all again the next day:)

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