sustainable systems & storytelling
Yesterday, I didn't experience any soreness in my legs all. I ascended a flight of stairs at work, as usual. I enjoyed a two mile evening walk, as usual. But one thing was notably different. I didn't stop once to rest my legs. For the first time in over 20 months, I walked further than... Continue Reading →
I just learned that September is self-care awareness month, and I'm taking it as a sign that it's time for to focus wholeheartedly on loving and caring for my body. Self-care is important for everyone, but I think it's especially beneficial for those navigating their ways through chronic illness, a difficult time, or even and... Continue Reading →
The most challenging part of my illness is not the hair loss, skin ulcers, or constant nausea. I'm starting to come to terms with the swollen joints and the forced sabbatical from lifting, hiking and cardio. I'm okay with the fact that I'll be on heavy-duty medication for at least ten more months and, quite possibly,... Continue Reading →
I spent thirty minutes talking with my infectious disease doctor and nurse practitioner this morning. How am I progressing (or not)? What are my prospects? How does my recovery compare to similar cases? Would a different diet, more sleep, or alternative medicine help? "I don't expect you to get worse," she offered. "Gradually, over the... Continue Reading →
Lightly child, lightly. I have been repeating Aldous Huxley's words over and over in my head for days. It's become my mantra, a reminder that it's okay to lay low and go slow. Entering month five of treatment, my lab work has remained stable as my physical condition has declined. At time of posting, I'm... Continue Reading →
How do you to live life to the fullest when your health limits everything you do? How do you cope with waiting for some relief when, in reality, there's no reprieve in sight? There are no easy answers to these questions. The mounting unknowns become overwhelming as symptoms worsen in spite of rest, medication, and... Continue Reading →
My infectious disease ACNP called yesterday and, with relief in her voice, informed me that the results were in and I do not have meningitis. Sure, the other lab tests haven't been great, but we've ruled out the diagnosis that would kill me. One more small victory. We'll continue down the current path for the... Continue Reading →
