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I Have EDS: When Should I Get a Mobility Aid?

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I got a great question from a reader: Question: “I have EDS: When should I get a mobility aid? I feel like it’s my ankles and feet that hurt so bad. I can almost not move after a day of walking. If I got a walker that I could use to sit whenever I need […]

How to be a Power Patient

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Most chronically ill people don’t know how to be a power patient – it’s not instinctive, or it’s been beaten out of us from years of depressing results. For us, the experience of going to doctors for answers is usually the same: we stumble our way through our origin story, trying to piece together the […]

Guest Post: Meet B!

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It’s time to meet another member of our community! We are all different, and yet, so many of us are the same. See if you can find a piece of your story reflected in “B’s,” a Canadian living with Ehlers-Danlos Syndrome (EDS). The Malleable Mom: Tell us a little bit about yourself! B: I am […]

What Causes Constipation in EDS?

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I’ve had shit for brains lately. Not just from the chronic Ehlers-Danlos Syndrome (EDS) brain fog and Mom-brain of raising two teens (and teens with EDS at that), but “I am sick and tired of dealing with all of our chronic constipation and I need to get to the bottom of why” brains. I was […]

Guest Post: Meet Bella!

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From time to time I like to interview people in our tribe, so that you can learn more about what it’s like for other people living with chronic illness or disability. Recently, I had the pleasure of interviewing Bella, a military wife and mother living with Ehlers-Danlos Syndrome. The Malleable Mom: Can you tell us […]

Fascia: The Key to Understanding Chronic Pain

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Have you ever flipped through the channels, and stopped dead at something? This woman was lecturing on my local PBS station, and what she was saying about fascia caught my attention so quickly, I nearly got whiplash. Fascia is a web of connective tissue that runs throughout our body, and until very recently, we didn’t […]

Why We Heart Our Posture Pump®

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It’s been a while since I’ve checked in with you. Mostly because I’m miserably sitting here typing with one hand, and it’s hard. Shoulder surgery suuuuuucks.  I can say that with some authority, because in the last 24 months, I’ve had both brain and spine surgery, and they were cake walks compared to this. The […]

What is a Sleep Study Like?

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Let’s talk about sleep studies: have you ever had one? I did a sleep study about 20 years ago, and it showed that I had very limited amounts of restorative sleep, which they attributed at the time to my having “fibromyalgia” and trying to put me on a number of low dose antidepressants to get […]

How to (Un)Straighten a Neck: the Posture Pump®

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Freeze. Are you reading this on your smartphone or laptop? How is your head positioned? (Looking down, right?) You aren’t alone. The Washington Post reported that over half of the adult population is guilty of behavior that leads to the growing problem known as “tech neck,” and it’s getting worse every year. I began my […]