It’s been awhile since I last wrote. My whatever-the-&*%^-this-is has been flaring, and I’m not a huge fan of my Grumpy Cat alter-ego. So I’ll keep this short.
Next week is National Invisible Chronic Illness Week. Have you heard of this? There seem to be some great resources for promoting understanding and awareness of invisible illnesses like lupus. Check it out when you have time and let’s discuss.
- My health insurance will be cancelled in December after 18 months of coverage through COBRA. I’m self-employed and have been denied individual coverage. My husband is in school for another year, so no group coverage for this girl. Lucky for me, the Affordable Care Act marketplace goes into effect Oct. 1. In theory, I’ll be able to get insurance. Even more lucky? Lupus Colorado has been advocating for all of us, providing Connect for Health Colorado with feedback based on our needs (thanks LC!). I plan to get started next week, so stay tuned.
- To all of you readers who live with chronic pain, BRAVO for getting out of bed this morning. Or at least turning on your computer. I’m too exhausted and nauseous to do much else. Everything burns. I’m budgeting time and energy with a foggy head, trying to balance rest with caffeine to get my work done and avoid being a zombie tonight with my my family for at least an hour. A virtual hug to you all.
Next time we chat, my attitude will be better. Until then, I leave you with the immortal words of Joe Dirt: http://www.youtube.com/watch?v=Akec_5zCgso.
I hope his attitude–and not mine–is contagious.
Yoga has been a constant in my life since I was 25 when I wanted nothing more than a yogi’s body. It protected my runner’s knees, calmed my spinning mind, and grounded me when I was pregnant. And since I got sick, yoga has helped change me on the inside. It’s taught me about inhabiting–and loving–the body I’m in. Even in perceived moments of failure.
Today I received a gift from Bernie Clark, a yoga instructor based in Vancouver, through a 60 minute online yin yoga class called Happy Hips where he spoke about happiness and joy. It’s true, my hips feel yippy skippy. But I most benefited from his words on suffering. I think you might too.
Bernie (I hope he’s okay with my informality) used an example from his childhood, a day where everyone in his class was to receive a vaccination. He observed his friend spend every moment leading up to the shot in agony and fear, completely overwhelmed by the pain he would soon experience. In contrast, Bernie received his shot without all-consuming worry. Sure, it hurt. But only for a few minutes.
I’m making progress. Not because I’m “realizing” how unhealthy I am physically, but because I published this statement in a recent post:
“I maintain a healthy weight.”
The statement is true. Sort of. There were a few months during The College Years when I consumed nothing but fried cheese and beer, and post-baby when those last 10 pounds didn’t instantly melt like it did for some of my friends (“just breastfeed…” they said…”It’ll melt off…” they said. Ha!).
Yet, my weight is typically near the top of the BMI “normal” range. And the perfectionist in me hates it.
Of course, my brain decided to process this progress at 3 a.m. I woke to obsess whether people who know me would roll their eyes, remembering dimpled thighs and my round face.
Was I lying to myself? If my weight is normal, then why can’t I wear skinny jeans? Would my self-proclaimed doctor friends remind me that the high end of the BMI chart might not be healthy after all? And, of course, did my weight contribute to being sick?
A thunderstorm was rolling through. And as if the thunder itself gave me a talking-to, I suddenly thought:
By Carie Sherman
When your adventures include autoimmune disease, fatigue is your constant companion. And by “fatigue,” I’m not just talking sleepy.
You know the commercial for COPD where the elephant sits on the woman’s chest? That’s what fatigue feels like for the lupus patient. Only the weight of the elephant isn’t just restricting movement and breathing–it’s also restricting your ability to think. Every step you take become scripted events: You literally must think through each action you take once your eyes open.
I must have sounded like Rain Man to my many docs, chirping “fatigue, fatigue!” at each appointment. My persistence paid off: Eventually, they helped me discover other issues impacting my health. And I’m thrilled to report it’s been months since I found milk in the pantry or woke up to honking at a stoplight. (I promise, I rarely drove after that incident!)
Here are common conditions that impact my fatigue and could warrant a conversation with your physician.