Growing Deeper Roots: My Story of Invisible Illness

Okay, so I'm starting to run out of ways to say "I haven't written in a while." I have also run out of excuses. The last time I wrote, I had the excuse that I didn't have any internet all summer so I couldn't post. Well...I moved out of that house August 15th...so that doesn't work. No excuses. I'll just catch you up. I spent the last month of my job at WAC in a cute 1 bedroom apartment in Chestertown. I got to live alone, cook for myself, shamelessly sing in the shower, and host girls-only wine nights. It was a lot of fun but by late September, I was ready to move on from WAC. So I did. Yesterday, I started a new job as the Legislative Director of a Delegate for the Maryland General Assmebly. Onward and upward.  But first, I'll make it up to you for neglecting you for so long. Feast your eyes on a photo-list of all the wonderful happenings since mid-July.  1. I helped one of the best people I know move out of his house in Chestertown and ...

Wow. It has been a while since I've written. There are many reasons but the most notable is...I don't have any Internet! On June 13th I started a new job (YAY!) at my alma mater. I am serving as the interim International Student Services Coordinator at the Global Education Office at Washington College. The pay is average and the office is in a weird period of transition, but things feel good.  I'm living with my friend Cat in a quirky little beach house a few miles out of town and I'm working in the same office as my best friend, Alex Levy. My boss is this amazing woman who took the Director position as a step on her retirement track after a long career in DC and New York working for Council on Foreign Affairs and starting an international consulting firm. I could not have a better role model as I start my career in politics.  Katie, Alex, and I at our boss's Fourth of July BBQ The Eastern Shore is a beautiful (albeit humid, I will admit) place in the ...

Writing about my journey with chronic illness has been both therapeutic and difficult for me. Many times, processing my pain and recovery is more easily done when I start writing about it. Other times, the stage of recovery in which I have found myself is so full of complex emotions and thoughts, that stitching them into words coherent to another person, even one on a similar journey, is just impossible.  So I have been upfront when writing this blog, letting you know that my posts might come more sparingly as the journey's direction changes. When I started going to therapy and working on the grieving component of my illness, I was honest with you, letting you know that I wasn't always going to write about the process, I would have to keep parts of it private. That's the stage I was in most of this spring, sorting my own thoughts out and wondering if I'd ever be able to put them into words. Or if I would ever really want to, if I would want to open that story up to...

The last week has been a complete whirlwind. So much has happened and I'm so tired that I can barely recount it all. The pictures are barely uploaded and I haven't even unpacked but it has been so long since I have updated my blog that I felt it was worth a summarized post.  Last Saturday, May 21st, I graduated college. With many many mixed emotions, I crossed the stage and received my diploma for a BA in Political Science and minor in Economics, magna cum laude. As I've written about on here not long ago, my early graduation came with many bittersweet considerations and it was very difficult for me to remember the triumphs of the day. I tried my hardest to remember that my graduation, a year early, was not to be taken for granted, as this time last year, I was uncertain that I would be returning to school at all. I tried to remember that graduating from college is a distinct accomplishment under any circumstance but my situation should have made the occasion even sweete...

As I mentioned a few times now, I participated with in the 6th Annual Loudon Lyme Disease Races! The event, including a 1K, 5K, 10K and virtual race, was this Sunday and it was packed! I had a small team, just my best friend Kate and my mom. I thought it was fitting that these two women were the ones that walked the 5K with me as they've been the ones walking through this whole journey with me. (Corny, I know.) In addition to offering the races and awards, the event had a raffle, a silent auction, and several booths for bug-preventing products, advocacy groups, and other companies and organizations relevant to Lyme disease.  Big thank you to all who contributed to my fundraising efforts including Emily Levy, Anna Zastrow, Ally Venable, Kate Vannoy, Michelle Venable, and Molly Igoe! You all continue to be a great source of support for me and all of us fighting this terrible illness.  I hope to get a bigger group next year with better planning and more time to prepare....

The Maryland General Assembly passed it's first Lyme Disease bill during 2016's legislative session. I was lucky enough to have an internship in an office in the MGA this semester and spoke with the sponsor of the bill, who is also my Frederick County district representative. Delegate Kathy Afzali represents District 4 of Maryland and sponsored the Lyme Disease - Laboratory Test - Required Notice Act, which requires health care providers to provide notice of potential inaccuracies in diagnostic tests. The goal of this patient-driven act is to ensure that patients are receiving accurate information about the tests used to diagnose Lyme disease, hopefully significantly decreasing the number of misdiagnoses.  Today, only a month after the MGA Sine Die, Maryland Governor Larry Hogan has signed this Lyme Disease - Laboratory Test - Required Notice Act into law.  Taking affect in October, this law will require health care providers to provide the following disclosure to...

One of the truly moving experiences I have had during my journey to health is one of friendship and relationship building through the illness. The Lyme disease, dysautonomia, and chronic illness communities are full of strong fighters who are just as committed to helping others win their fights as they are to fighting their own. I am encouraged every day by the stories of other patients and Emily Levy's story is truly inspiring. Emily's been battling Severe Chronic Lyme Disease since 2007. Emily is a student at Babson College, about to graduate with concentration in Technology and Entrepreneurship Design at the Boston and San Francisco campus. She is a Center for Women's Entrepreneurial Leadership scholar and co-founder and CEO of PICCPerfect.   During Emily's treatment for Lyme Disease, she spent 6 months with a PICC line delivering IV medication. Keeping a PICC line clean, safe, and healthy is a challenge and nurses haven't come up with any tool better than a...