But This Time, It’s Different

It wasn’t long ago that sitting in a hotel room in DC was nearly a home away from home. Flights across the country. Meetings. Dinners. And if it wasn’t DC it was San Francisco, or New York.

I would pack my bags, hop a shuttle and not bat an eyelash to get to where I was going.

Yesterday I left Los Angeles nervous. I had all my meds, I had all my friends lined up on the other end to help. I had no idea how my first trip alone would go since being diagnosed with Lupus. Would I get sick on the plane? Would I need a doctor in DC?

I made it to DC fine, but a bit worn. I’m swollen. Edema is bad for me when I fly for some reason now. And I spent the night queasy in my hotel room, trying hard to eat despite no appetite. When you take as much medication as I do, an empty stomach can ruin your day.


I woke up this morning still swollen and still slightly queasy, but ready to head to the White House.

Oh, did I mention that’s why I’m here? I’ve been invited to attend the President’s first Twitter Town Hall. This will be my third White House visit, but my first as a sick person.

It’s a strange feeling. Knowing I will see people I haven’t seen in a long time, wondering how they will react to my swollen frame and my steroid face. Knowing the White House New Media staff will recognize me and have no idea what the hell happened to me…did she eat too many donuts playing blogger on the internet all day?

No. She took prednisone for months at a very high dose to save her life, and still isn’t back to work.

Speaking of…this is a big test. I want to return to work and normal life badly, and traveling alone is a huge step in getting me there. I need to show the doctor I can do this, and I need to be able to show myself and my husband I won’t land in the hospital on the other end of the plane ride. Or after a day of meetings. Or…well, just or.

I’m excited to be involved in a social media White House event. It makes me feel like I’m still in the game, even if I am playing from the disabled list. And I’m excited to see if I can handle this trip and return to LA for my second round of treatment with IVIG, and my continued chemotherapy. But most of all I’m nervous and anxious and a far cry from the confident and strong woman I was pre-diagnosis. My life has changed so much since the last time I was here.

But I know that woman is still in there. She’s a bit more hesitant than she used to be, and she carries a whole lot more medication…but she can still rock the West Wing with the best of them, and plans to in just a few hours.

Do you have a question for the President? You can tweet @BarackObama with your question and watch the townhall live here.


  1. Thinking of you today and knowing you’ll rock it.

  2. I’m so proud of you getting up the courage to do this and I truly believe that you can. I firmly believe you can rock the West Wing and perhaps maybe get a few of them to wake up to the dismal state of healthcare in the US whilst you are at it.

  3. habanerogal says:

    Look out SHE’S BACK ! Rock the trip it’s been too long hope it goes well .

  4. Hoping the swelling and nausea go away so you can enjoy your day. Thinking of you!

    (And I betcha ten bucks @BarackObama won’t answer my question.)

  5. Chiming in from the peanut gallery but I really, truly think that the version of yourself that’s in Washington is stronger, more refined instrument for change than pre-diagnosis Erin. You still have the brain, the braun and the skillset you did before but now you’re part of the people you have been advocating for, having already earned the respect of your peers and still showing up when it is clearly everything but easy. Go get em!

  6. I’m so glad you’re still playing, even if you’re on the disabled list. You are going to rock that Town Hall!

  7. I’m so inspired by your courage. Have no fear. You’re going to rock it.

  8. Kick ass Erin!

  9. You are awesome. I’m watching the Town Hall now and cheering for you. I know this was a big jump. Hopefully the swelling went down so you could really experience today’s event.

  10. Congrats! and Good Luck. Julie

  11. Love this!! You are going to rock the White House and they will definitely know who you are from you attitude there!!! I am sure this will be your second home and you will feel like you never left.

  12. It was awesome watching you tweet yesterday.

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