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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:)

Sunday, September 21, 2014


A busy weekend where nothing seemed to go right and an unexpected work trip this week means no new posts for a couple days. Be back as soon as I can!:)


Friday, September 19, 2014

It's Friday, Love

{ A bracelet made of old buttons + some new glittery baubles = my favorite new combination }

I had a super productive rainy day at the house last Saturday which helped me start the week out well for a change. I needed a day to myself, quite. I'm learning to build them in knowing that with my schedule if I don't, I'll implode. Then Sunday I had a great time with a friend who's recovering from surgery. So wonderful to see her back on her feet again and smiling. Then the week took off and I haven't really stopped since. A couple great opportunities at work and a few days in DC for a conference rounded out the week. The one thing I'm in dire need of is some exercise. I've had a sniffle for a couple weeks but I'm currently on the mend and craving some cardio. It absolutely sucks when your body won't cooperate. Here's hoping for a bike ride this gorgeous weekend. Sunday the band is at Strangeways Brewery if you're inclined to join us. Show starts at 1:30pm!

See ya next week!

{ New born baby smell makes me very happy. Welcome to the world Miss Sadie! }
{ Yummy }

{ Anyone up for a trip to France? }

{ I love Open City Diner in DC because you get animal crackers with your coffee }

Wednesday, September 17, 2014

Best Laid Plans

I made this chalkboard last year during Staycation. You can check out my post about how I did it here. Originally gold, it was supposed to serve as the chalkboard menu I'd always wanted in my kitchen. As my guests arrived for dinner parties they would be greeted by this most french bistro-esque of accouterments and find themselves salivating over the delicacies that awaited them.

That lasted about a week. One day.....I was having a bad day and I needed to get something out. The person I needed to talk to wasn't there, my dog Miss Austen tended to tell me to stop being so blind and get on with my life (not something I wanted to hear at the time) and screaming off of my back porch seemed a little excessive. So I took the chalk in my hand and wrote a thought on the chalkboard. I immediately felt better. I don't do well keeping my emotions in and I'm also a visual learner, so in retrospect, my creative outburst seems almost destined.

For almost a year now I've been doing the same thing. Writing out a phrase or thought that made me feel better or was what I needed to tell myself even if it wasn't pleasant. I've kept track of all of them and the progression is really interesting. Sad, happy joyful, lonely, hopeful, angry, lonely, accepting........ok. I won't be sharing any of these thoughts on the blog because they're very private. Silly perhaps, because I do share so much of myself and my life here, but appropriate none the less.

You'll also notice the frame isn't gold anymore. This past spring I needed a change. I needed projects. I needed a distraction. So I proceeded to paint till I could paint no more and essentially redecorated my house. My sister came over during the summer and looked around at the changes quizzically. This is definitely different than your usual style. It was. When I moved in I was 29 and very much still a little girl. Today I am a 35 year old woman with many new adventures and experiences that have changed me.

What life keeps also showing me is that I will never have it all figured out. There will never be an end to the journey. Each new turn and bump in the road will mean I will have to figure out who I am now. That's not always an easy or pleasant process and I'm an American so I also want it to happen in like a second. It doesn't.

So why this post today? Well, funny enough I'm feeling better. I don't know what to write next on the board but I know it will come to me. And I'm very excited to see what color the frame is in another 5 years.

Monday, September 15, 2014

The Gala

Every time I have a big event for work or the band or whatever, I say next time is going to be different. I won't be running around like a chicken with my head cut off. I will be prepared days in advance so I can soak up all of the excitement and enjoy the fruits of my labors. I've known about this for how long? And still last Tuesday cut to me running around Macy's trying to find a dress for an event THE NEXT DAY!!!! Good lord. I've resigned myself that prepared, put together me is a figment of my imagination and I am doomed to continuously wait till the last minute in a flurry of satin, advil and wine. It could be worse. I could be boring:).

Last week my organization celebrated our 25th Anniversary in Baltimore at the Legg Mason Tower. A huge milestone and one that begged for a party. And what a party it was. We had such a fabulous time and the evening could not have gone better. We also raised a lot of money and celebrated the people who have supported us along the way.

The pics are a bit of a mash up today. Some are mine, some were taken with an iphone and some are courtesy of the fabulous team at Hayes and Fisk photography. I highly recommend them as well as McBride Events who were invaluable during the planning process.

Cheers! Here's to 25 more years!

Friday, September 5, 2014

It's Friday, Love

{ Fresh flowers and new dish towels in the kitchen }

Today's It's Friday, Love is dedicated to being thankful. We got some good news today. So in the words of Joey, we have a lot to be thankful for!

  • I'm thankful for my wonderful friends who have taught me the power of listening. It's the most profound way to show someone you aren't judging them and that you care. 
  • I'm thankful for modern medicine.
  • I'm thankful for wine.
  • I'm thankful for Puffs Kleenex with Vicks and lotion built in. They're saving my life right now.
  • I'm thankful for the hope that somehow seeped back into me today. It might be irrational and untrue, but I feel hopeful none the less.
  • I'm thankful that everything happens for a reason even if we can't see it at the time.
  • I'm thankful that everything has a right time and the big guy upstairs knew a couple things were brewing but they just weren't ready yet. 
  • I'm thankful for outdoor adventures.
  • I'm thankful for happy accidents, serendipity and whatever other words mean the same things.
  • I'm thankful for my camera. It lets me capture life the way I see it.
  • I am thankful that it will be alright. Maybe not today or tomorrow, but someday. Someday. 
I'm signing off for next week. It's a super busy week of work, our 25th Anniversary Gala is in Baltimore and it's been a year in the planning. I'll have my camera in tow so look for some fun shots. I hope everyone has a wonderful week and I'll see ya when I get back!

{ Perly's re-opened and I've already been there twice this week }

{ I will miss my visits to Dover Hall. Thanks to Jenn McBride and the amazing team at McBride Events for working on the gala with us }

{ A new arrival is immanent for my friend Ashley, a member of our Ladies Who Lobby contingent }

{ Matza Ball Soup, did I mention I've already been to Perly's twice this week? }

Wednesday, September 3, 2014

We Climbed A Mountain

Life officially works in mysterious ways and I hope to God everything happens for a reason. I had these pics from our weekend hike of Humpback Rock and a part of the Appalachian Trail (about 4 miles thank you very much) all ready to go yesterday (under a different title and body) I just forgot to hit the post button. First day back from vacation.....fall is here...a lot to do.

Then I got some news yesterday which hit pretty hard and means that there will be no more hikes for a while. That makes these pics even more special, and like everything else that has happened over the past few days, shown me I wasn't supposed to post them yet for a reason.

We hiked a goddamn mountain on Sunday and we will hike it again one day soon!