sustainable systems & storytelling
Throughout my 32 years of life, I've always been kind of weird. For the last six years, I've navigated up and down the illness spectrum--sometimes bedridden and sometimes passably semi-functional. Recently, new clues are making sense of the mess and I am way more excited than I should be about my likely genetic fuckery. Apoptosis... Continue Reading →
Hello! How are you? What exciting things are going on in your life? How is vaccine rollout going in your city? How is your creative spirit these days? Do you have any plans for the week ahead? It's 80 degrees in Phoenix and I am insanely jealous of the snow I'm seeing across others' posts,... Continue Reading →
Six years ago, I was a high-functioning and successful Type A personality who had seemingly achieved success in all areas of life. I was an overpaid department head who excelled at my work. I had a fit an athletic body and loved teaching others how to achieve the most challenging poses in yoga. I had... Continue Reading →
Four years ago this month, I was forced to spend a full month in bed while assaulted by a vicious cough, painful aches and terrifying hallucinations. I lost 16% of my body weight and gained a permanent scar on my lung. I was told it sometimes takes years to fully recover, so I practiced patience... Continue Reading →
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 →
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 →
It's hard to start the day off productively when it takes all of your energy to simply roll out of bed. This is particularly true when you're dealing with chronic illness, or even just a pesky stomach bug. Building good habits can be hard, and maintaining those good habits through health struggles can be even... Continue Reading →
You must be logged in to post a comment.