Mentoring Patients with Lyme disease When You’ve ‘Been There’ Before
When I began my journey with Lyme disease, I craved for advice from someone who had “been there.” I constantly searched for blogs or articles written by people who were sharing their stories. More than anything, I was in such a raw and vulnerable place, I was looking for someone who could be vulnerable with me and share their true experiences living everyday with Lyme and tick-borne disease. I was lucky enough to have a family friend with Lyme who could talk to me on a level no one else could, but I also longed to connect with someone my age. Being sick in…
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Healing Fatigue
I’m going to collapse from the weight of my bones.Pushing my body so hard the floor groansI’m going to collapse from the frenzy in my mindMy thoughts hijacking my soul every timeThe frustration, the emotion, the pain continue to climband finally, I fallI would cry but I feel so disconnected from it allNo tears come, so I lay on the floorThe light at the end of the tunnel is not there anymoreI call this healing fatigue, call it what you mayBut at one time or another everyone has felt this wayWhen the illness stubbornly won’t break awayAfter medications and therapies…
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Advocating for Federal Lyme and Tick-Borne Disease Funding
Yesterday, I had the opportunity to participate in the Center for Lyme Action Virtual Fly-In. Every year at the beginning of the appropriations process, this nonprofit organizes a day of meetings with congressional representatives from all 50 states. As an advocate, I got to sit in meetings with New York’s senators and congressmen and women. There are six programs and laws we are asking congress to fund for the 2022 fiscal year, which include: The Kay Hagan Tick Act NIH Lyme disease and other tick-borne disease research Congressionally Directed Medical Research Program (peer-reviewed tick-borne disease research) National Public Health Framework…
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Comments about Chronic Illness
It’s hard to know what to say when someone tells you they are sick and not going to get better anytime soon. It’s hard to know what to do when that person is in a lot of pain day after day. This challenge leads to lots of hurtful comments, and in those moments, it’s really hard to be the person with the chronic illness. I believe a lot of the inappropriate comments people make towards those with invisible, chronic illnesses are a result of not knowing what to say or how to help. People want to fix the situation, but…
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Isolation Takes a Toll
I could be in a room full of people, but still feel alone. I’m trapped inside my head. While I may have made it to the event, the pain is still there, and it’s the only thing on which I can focus. There are brief moments I pop into the conversation, to the people surrounding me, but as quickly as they come, they vanish. There is a barrier between me and everyone else. I don’t see what is happening in front of me, as my eyes lose focus and my gaze falls on the far wall. Then there are times…
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About Me
Hi, I’m Maddy. Before starting a the “Two Much Lyme Podcast” with Julia, I wrote a blog all about living with Lyme disease and chronic illness called Maddy Meets Lyme. I continue to write, and will share some of my blog posts that correspond to episodes Julia and I publish.
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