maddymeetslyme

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.Continue reading “Advocating for Federal Lyme and Tick-Borne Disease Funding”

Why is Lyme Disease So Challenging?

Lyme is incredibly challenging to diagnose, leaving patients without care for long periods of time. The test is about 50% accurate, so even if a doctor suspects Lyme, they have a 50/50 chance of giving a proper diagnosis. However, even if you get a positive result, you have now been diagnosed with a disease soContinue reading “Why is Lyme Disease So Challenging?”

Will It Get Better? Nighttime Panic

Whether you are staring at the ceiling or watching the fan spin, the time between getting in bed and actual sleep can be dangerous. For many of us with chronic illness, insomnia is a constant battle. Many diseases create this symptom, and it can be endlessly frustrating, especially when another symptom is extreme fatigue. TheContinue reading “Will It Get Better? Nighttime Panic”

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 surroundingContinue reading “Isolation Takes a Toll”

Helpful and Hurtful Comments to Make to Someone with 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 reallyContinue reading “Helpful and Hurtful Comments to Make to Someone with Chronic Illness”

Healing Fatigue

I’m going to collapse from the weight of my bones. Pushing my body so hard the floor groans I’m going to collapse from the frenzy in my mind My thoughts hijacking my soul every time The frustration, the emotion, the pain continue to climb and finally, I fall I would cry but I feel soContinue reading “Healing Fatigue”

Lyme Disease and Mental Health

The Central New York Lyme and Tick-Borne Disease Alliance was nice enough to do an interview with me about the intersection of Lyme Disease and mental health. The Alliance asked me because many of my most serious Lyme Disease symptoms have been related to mental health, and it took a long time for doctors andContinue reading “Lyme Disease and Mental Health”

Response to the WNBA’s Denial of Elena Delle Donne’s Medical Exemption

It has taken me a few days to think through how I wanted to respond to this situation because truly, all I wanted to do when I first learned of the incident was scream. For those who don’t know, the WNBA is restarting their season this month, and to combat the spread of COVID-19, theContinue reading “Response to the WNBA’s Denial of Elena Delle Donne’s Medical Exemption”

Standardized Tests and Chronic Illness

Frustration. That’s the emotion I find myself coming back to recently. Frustrated I can’t study for longer than three hours without the next day being a flare. Frustrated when I wake up and immediately know studying is not in the cards at all. Frustrated that I can’t seem to fall asleep no matter how tiredContinue reading “Standardized Tests and Chronic Illness”

Let’s Talk Fatigue

Until November 2019, I had no idea what it felt like to wake up and not feel more tired than when you went to bed. In fact, I didn’t know I was supposed to feel refreshed. After 21 years, I finally got some relief after starting a new supplement and finishing my IV Vancomycin. IContinue reading “Let’s Talk Fatigue”