As My Joints Turn: my autoimmune soap opera
Autoimmune Arthritis isn't the end of the world, it's just another way of living in the world.
Pacing has always been difficult for me. For years, my preferred method of energy management was simple: throw every ounce of energy I had into accomplishing something and then collapse when it was finished. Was this pacing? No. Was it effective? Mostly no. But I got things done. Then I paid the price with a... Continue Reading →
For years, my autoimmune/inflammatory arthritis disease impacted my joints. I lived with pain from inflammed joints life altering exhaustion, but I was able to push through wth the help of medications, therpies, and force of will. Then my disease becme systemic. A CT scan showed my liver, intestines, lungs, colon, and heart lining all showed... Continue Reading →
This time of year, I would normally be fretting over all the things I didn’t accomplish over the summer. August always arrived much too quickly, school started much too soon, and I’d wonder how an entire summer disappeared while half my to-do list remained untouched. This year is different. There’s no back-to-school countdown hanging over... Continue Reading →
Words I have dreaded speaking, let alone writing: my mother has died. It was peaceful, or at least as peaceful as something so heartbreaking can be. She was surrounded by family throughout the day, loved fiercely until the very end. And then, in a quiet moment when it was just my cousin Tracy and me... Continue Reading →
Perspective with chronic illness is…let’s just say, flexible in all the wrong ways. Last week? Absolute chaos. A flare so aggressive it felt like my body woke up and chose violence. Enter: steroids—the overachieving frenemy. They did their job and calmed things down, but at the small cost of sleep, sanity, and any hope of... Continue Reading →
My weight and I have been a complicated relationship my entire life. I was never the skinny girl. I was the girl with curves—or as my aunt liked to say, “a brick shithouse.” To this day, I’m still not entirely sure if that was a compliment or a construction assessment. I had curves. Big boobs, small waist,... Continue Reading →
Every morning I wake up and think, today is going to be the day I feel better.Today will be the day I can function like a normal human being.Today is the day I will feel great. Then I get out of bed and realize the pain, fatigue, and general malaise are still there. It’s hard not to feel... Continue Reading →
I recently received a letter regarding my healthcare and the upcoming changes being planned. The first sentence includes the following sentence, "the impacts of inflation and costs incurred from high-cost claimants." high-cost claimants high-cost claimants high-cost claimants Reading this letter today was insulting. The language used—phrases like “high-cost claimants”—felt incredibly dehumanizing. It reduces real people and... Continue Reading →
Living with chronic illness for almost 30 years gives one a thick skin. I've met so many people who love to give me free advice. For the most part, it's all good intended suggestions, but I often feel stumped on how to respond. Today someone said, "My friend says those infusions you take are bad,... Continue Reading →
In today's episode of “Whatever Doesn’t Kill You Makes You Stronger”: Insurance + PBM vs. Me I’ve learned that a lot of people don’t actually know what a PBM is. It stands for Pharmacy Benefits Manager—the middleman between insurance companies and patients that’s supposed to keep drug prices low (spoiler: they don’t) and make private insurance more affordable. It’s... Continue Reading →