Growing Deeper Roots: My Story of Invisible Illness

It's been almost 2 years since I have posted to this blog. Believe me, I have tried. I have about 25 saved draft posts that never got published because they ended up sounding like the same repetitive story. Another pattern of rumination. Another soliloquy of self pity.  That's because the last three years of my life have been fairly cyclical and unchanged. I have a few good weeks where my symptoms plateau and I faint only once or twice a month. Then, a storm hits. I get a cold and I crash into a regressive phase where I faint daily, injury myself, get frustrated, and then slowly move back up to the plateau.  I have been tired and frustrated as I put grad school on pause, as I continue living with my parents, as I take three steps forward 2 steps back. So I stopped blogging and started to do what I could to move forward, pretending I am not sick, and working on ways to get healthier like a normal 24 year old. But still on pause.  But over the last few weeks, ...

As you may remember, I am on the (seemingly endless) waiting-list for a service dog. The organization I am working with is called Canine Partners for Life. The only thing that makes me feel better about how long and excruciating this wait is, is knowing that I’m waiting for something great and that as I’m waiting, K9P is getting better at training and matching dogs. Learning about this process has been such a joy. It started in August of 2015. I researched many organizations that worked with alert dogs and choose K9P because they had the best reputation, highest success rate, friendliest staff and alums and community, and a great structure to their organization. Training dogs can be difficult and training them to do tasks for people with disabilities is an art. K9P provides and sustains professionally trained service and companion dogs by using positive reinforcement. They train their dogs to meet the specific needs of individuals and the environments in which they are liv...

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...