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 […]
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 […]
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 […]
How to Vacation with a Disability
(Don’t have time to read the whole post? Check out my list of tips at the end!) We lasted 12 years without taking our kids to Orlando. But this was finally our year to make the time and financial investment to bring them to Universal Studios and Disney World. However, three out of four of […]
A Brain Tumor is Not Like it is in the Movies
I drove down the road, my son chatting at me about video games from the back seat. “Um hmmm…” I replied. I drove slower than usual down the wooded road. I noticed how bright the sun shone through the leaves. Normally, I am a Mom-on-a-mission, and I have no time for noticing things like sunlight […]
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