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®
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 […]
6 Rules For Reading Bad News on Facebook
Love it or hate it, Facebook is firmly rooted in society. It’s how we get news, stay connected, or kill time. Whether you think it is a “good” or “bad” influence in our lives, it is a tool, and like any tool, its value depends on the user. I love Facebook, but I have always […]
How to Reduce Pain from an Ear Infection
We have a Rubber Duck down today – #TheStretchySon has a double ear infection and a high fever. He is the picture of misery. It is clearly bacterial, so I had no problem starting amoxicillin. But I am also using this extremely effective trick for clearing out the infection and most important, PAIN CONTROL. Parents […]
How to Handle College and Chronic Illness
Emily speaks for me, and for a lot of people. College is often a huge transition out of our parents’ home and into our independent lives, which can be stressful. For those of us who are chronically ill, or worse, are yet undiagnosed, college and dorm life can seem daunting. But I don’t have all of the […]
I Think I Have EDS – What Do I Do Now?
You Are Not Alone You or a family member are newly diagnosed with Ehlers-Danlos Syndrome (EDS), or you suspect you have it based on the following criteria. You’re in pain. You’re overwhelmed. Likely, you’ve been trying to find answers for months or even years. You’ve probably “tried everything,” to feel better. You might have even developed a […]
A Letter to My Daughter
I had to write a letter to The Durable Daughter for a church retreat that she is going on this weekend. In the Unitarian Universalist Church, 13 year olds are in a “Coming of Age” year, which we have deemed a significant milestone, as these kids prepare to transition from middle school to high school. I […]
Guest Post: Patrick Davis
Patrick Davis: Hello everyone. I have been given an amazing opportunity by the wonderfully funny and intelligent host of the page which brings so much awesomeness into our lives. (The Malleable Mom: blush!) We were talking to each other about physical disabilities, and she asked me to write about my experience in dealing with blindness. Owing […]
Products to Help EDS
As a patient with Ehlers-Danlos Syndrome (EDS) and a mother of two patients, I have spent the better part of the past several years finding products to help EDS patients like us. Mainly, we need things to help our posture, adaptive equipment, and alternative pain control. Some of the things I have bought have worked […]
Reduce Anxiety From a New Diagnosis
My husband kissed me hello after he walked in the door today. “Thanks for not having cancer…again.” A suspicious lump had me racing to my local breast center last week, and the biopsy results came in today (benign – whew!) Seven months ago, I had brain surgery to remove a tumor that turned out also […]
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