Growing Deeper Roots: My Story of Invisible Illness

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...

People throughout Virginia and parts of Maryland are gearing up for one of the biggest Lyme fundraising and morale building events of the year. The Loudon County Lyme Race is expected to draw a crowd of nearly 2,000 activists, patients, caretakers, and runners.  Last year, the race raised a net of $50,000. This year, Gotschi, event founder and  owner of Sterling-based DryHome Roofing and Siding has a  goal to write the National Capital Lyme Disease Association a $75,000 check. The event includes a 10K, 5K and 1K family walk/fun run, and new this year—a virtual race, in which participants who cannot make it on race day can log their scores and still make donations. Gotschi started the Lyme run in 2010 after watching his wife battle the illness for years before she was properly diagnosed.  Like Botschi, 70% of the participants have been directly affected by Lyme disease. The Loudoun Lyme Run will take place at the Brambleton Town Center, at 22855 Bram...

Yesterday was my last day of classes in undergrad. I will be crossing the stage at graduation on May 21st and will promptly begin my post-grad life, searching for jobs, studying for my GREs, and researching graduate programs. What a sweet time to be alive.  But with my celebration, I feel a strong sense of dissatisfaction. As I collect my cords and regalia, I am painfully aware of how empty parts of my college experience is.  I never studied abroad. I didn't finish my independent research for Cater Society.  I dropped my economics major.  I have a long list of trade-offs I made for my health and while listening to so many other soon-to-be graduates recount their undergraduate experiences, I am hyperaware of everything I missed out on.  Sometimes I can't resist obsessing over what I could have done differently over the last three years; should I have stayed for all 4 years even though it would mean $25k more debt? Should I have taken time off when I ...

Today is May 1st. While some people at my liberal arts college might be excited for their nudity-ridden May Day traditions, that is not the focus of my excitement today. Today is the first day of Lyme Disease Awareness Month! For the next 31 days, communities brought together by this terrible disease will work tirelessly to bring awareness, education, funds, and advocacy to this important issue. These patients and activists work year round but this month is the time for everyone else to join them. I will be continuing using my social media platform and this blog to spread awareness all month long. I will also be participating in a 5K for Lyme Nat Cap on May 15th. Across the country, there will be many many other events for you or your allies to partake in. Fighting chronic Lyme can be isolating and devastating but we are not alone in this fight! I hope we can all come together this May to move forward, closer to a world without Lyme! Events to look forward to: ...