Growing Deeper Roots: My Story of Invisible Illness

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...

As I mentioned, I have returned to WAC a week early to train as a Peer Mentor. The Peer Mentor program is designed to match upperclassmen with first year students during orientation and the first semester so that the first year students have someone to guide them through their transition. This is my second year as a PM and I really enjoy it. Two of my suite mates and a bunch of my other friends are also PMs, so training and orientation is a blast! We started training on Friday. Then, on Saturday, we went to Echo Hill ( http://www.ehos.org/ ) for a bonding retreat. Now we are back in the classroom, training until the freshman arrive on Thursday. I've been using this time to practice in the wheelchair and experiment with my walking abilities around campus before everyone else arrives. I'm getting pretty good but there are still many of parts on campus that are too steep for me. Peer Mentor training is surprisingly fun and exciting. Although we have several boring sessions a ...

The other day my friend Kate asked me a question about how I was feeling. I'm so used to spouting out my BP or HR in response to "How are you?" or giving a generic "Oh, you know, been better been worse" or the ever so popular "Fine, how are you?"  But Kate was more specific. She asked me how I was doing with adjusting to the new phase of all of this. The phase where we've stopped looking for a solution to my syncope and started working to adjust and manage it. Learning to live with it. Creating a new normal.  I hadn't realized it until that point, but I have been feeling frustrated. When I was first diagnosed with the tumor I was scared, but I was determined and hopeful. I've lost that. In the last few weeks I have lost hope of an independent existence or a normal life without fear of fainting. I've stopped saying "When I get better..." My mindset has shifted from defensive action to maintenance and survival. People ...

              Long before my life was turned upside down-or rather, sideways-from my illness, I knew that I wanted to go into public policy or law to focus on health care reform. I've been interested in the ethical and public interest components of medicine since taking a freshman seminar called Ethics of Globalized Medicine. I suppose, since I signed up for the course eagerly, my interest may have started even before then.               Since then, I have taken several other classes that delved into the inner workings of health care and medical law. While we often debated the legitimacy and ideology surrounding the Affordable Care Act, more often than not, our discussions surrounded the shortcomings of the American Health care system that no one could deny: our wasteful spending, the gaps in coverage, the profit margins within the industries. As much as I have learned in the classroom about these issues, I hav...

So it has been another roller coaster of a week. And you all know how I feel about roller coasters.  After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.  Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.  Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basica...

When things started to get bad for me and I started to lose parts of my life to my illness I read up a lot about my symptoms. I read a lot about Lyme and POTS and Pituitary growths. I read medical records and reports. I read everything I could find online about treatments and illnesses. I read news articles about new research. And I read personal blogs. I learned a lot from experts, researchers, and patients. I came into this fight armed with information and knowledge so I could be my own advocate. However, nothing could have prepared me for what would really happen. Nobody told me how hard it would be. I knew I would have needles and IVs shoved into my arms and back and legs and everything. I knew I'd be peeing in a commode. I knew I wouldn't be able to shower. I knew I would be uncomfortable and sometimes in pain. I knew it was going to be a long recovery. But there were many things that no one warned me about. No one told me I would feel guilty. I never imagined that ...

One of the cool (I use this word loosely) things about being in the Lyme community is that it is HUGE. Now on one hand this completely sucks because there are 300,000 new Lyme patients every single year and the majority of the political, social and medical world is ignoring us. But on the other hand, this means that even when I'm laying on the couch all day alone at home watching all my friends post summer fun pictures from all over the world, I know that I'm not really alone. I might be confined to my bed during the majority of the summer and my socialization might be limited to interactions with doctors and my caregiving family, but while reading blogs from all over the world (Lyme is worldwide, don't forget) and connecting to other people who are going through this too, I can keep a little bit of my sanity. So I've collected some of my favorite and most relatable quotes from other blogs about Lyme disease and Chronic illness. Here are a few. From  Maisie  of Lyme ...