sustainable systems & storytelling
After thirteen days of relief, the low-dose naltrexone seems to no longer be working. On Friday afternoon, I felt the subtle return of that all-too-familiar fatigue, debilitating muscle pain, digestive issues, brain fog and moodiness. By Sunday evening, my magical carriage had transformed back into a pumpkin. After two days of immense struggling and far... Continue Reading →
The local hospital just called to schedule my PET/CT scan. On Friday, I'll have a bit of gallium pumped into my system and then spend three hours strapped down while a machine searches my entrails for biochemical anomalies. Since this is a nuclear radiology procedure, I will need to wait patiently for the results like anyone... Continue Reading →
Lately, I've been thinking quite a bit about blame and about responsibility. What does it mean to take full responsibility for your life? How can I let go of past mistakes and focus solely on moving forward? The last several years have been filled with guilt, shame, and self-blame. The monthly visits to my family... Continue Reading →
Yesterday, I received a call just moments before 5pm. An infectious disease doctor at a local hospital wanted to see to me. The medical assistant asked, "Can you come in tomorrow at 8am?" I did not hesitate for a moment in my response. I arrived and the doctor asked me to go over the entire... 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 →
One of my boyfriend's favorite bands is in town for two nights this week. Many months ago--back when I could sometimes stay up until 9pm--he bought a set of pit tickets...for both nights. Now, he's in a bit of a pickle. Should he sell the two sets of tickets and pocket the $600? Should he go... 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 →
