Sunday’s NY times published a front-page article on headache. It talked about the decades (centuries) of neglect of headache disorders – a disease identified as one of the most disabling diseases in the world today. It talks about the FINALLY rising awareness of the seriousness of these diseases. It talks about new headache treatments – […]
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I am so honored to be interviewed for the Living With An Invisible Injury podcast. Listen here:
The fact that the 1step2life app grew completely out of our experience as a family is so deeply ingrained into the fiber of my being that I forget to tell people about it. Hence this post. I was asked for information about 1step2life by the editors of MyChronicBrain – an online magazine and newsletter for […]
This year of COVID has been a year of loss. Loved ones. First dates and coffee with old friends. Shared worship. Beach parties. From the profound to the trivial. For many who live with complex illnesses or who struggle to get out of the house and make it to school or work, it’s also been […]
One of the hardest things about invisible illnesses is that they’re – um – invisible. No one can see them. Only the person who has them knows they exist. The most common chronic pain conditions in children and teens – headache, migraine, gastrointestinal problems, skeletal issues – are trivialized. That’s pretty awful. Anyone, anytime, can […]
When my child’s in pain, my first instinct is to try to fix it. That’s my job right? But it’s not always what they need. Sometimes they need to vent and blow off steam. This is hard for us. It’s worse for them. If we jump in too fast we’re not giving them permission to […]
Biofeedback is a set of techniques that allow you to exert conscious control over what are normally involuntary biological functions. For example, consciously slowing your breathing and heart rate are common forms of biofeedback. With more practice, you can learn to increase circulation in your hands and warm them up. You can become more conscious […]
I walked into my son’s room this morning – it was immediately obvious it was one of ‘those’ days. Light sensitivity. Migraine spike. Fog. You know the gig. So I asked my usual self-care questions: Did you take your rescues? Water? Salt? Magnesium oil? Daily meds? “Yes. Yes. Yes. Yes. Yes.” No eye roll (thank […]
We were very excited that Taneisha Cordell of News5 Cleveland, an ABC affiliated covered the development of 1step2life. Development of the app was inspired by my son, Sean’s, struggles with intractable persistent pain. He talks here about his struggles and how 1step2life has helped him feel empowered to take back his life. For their full […]
Some days are worse than others. That’s just how it works. You can wake up today feeling refreshed and inspired to put your best foot forward. You can do all of your recommended exercises, eat all the “right” foods, think all the “right” thoughts, and still have pain flare-ups throughout your day. We can never […]
Note: I wrote this years ago, when my son’s migraines first when chronic. Much has changed in our lives. Sending him to school with his pain remains one of the hardest things my husband and I – and certainly our son – has ever had to do. But every single day he went – maybe […]
When do I get my old life back?
The answer is, you don’t. That’s why they call it a ‘life changing event.’
Acute pain is protective. With chronic pain, the pain itself becomes the disease.
1step2life started with my son’s experience with severe chronic migraine disease. It made no sense to log pain when the pain is always there. What he needed was something that helped him celebrate his victories – making it to school, getting the mail, turning down the pepperoni pizza and sticking to his low tyramine diet. […]
Doctor! Doctor! It hurts when I do this!
Well . . . don’t do this.
As a developmental psychologist who has studied parenting on four continents, I can tell you a lot about raising teenagers. But nothing prepared me for watching my son shaking under the covers flinching from the light, and unable to speak from pain.
Today was a bad pain today. It was noon and already he’d taken all his rescue meds. He’d used all the tricks – double water, salt. He’d already done three hours of biofeedback. And there the pain was – a big looming suffocating force drilling into his brain.
Many people living with chronic pain have a condition called photophobia – their brain interprets light as a painful stimulus. That can make looking at screens a painful experience and makes designing an app extra challenging!
1step2life’s core mission is to build an app that helps kids living with chronic pain get out of bed and into the world. There are many things that make this project special to me. One, in particular, is how many of the Oberlin students involved GOT involved because they suffer from pain themselves. When we […]
As children become teens, they take more and more control over the decisions that govern their lives. Parents set rules, but teens who disagree with those rules have choices: they can obey, argue, or hide the fact that they’re not doing what they’re supposed to. In the US, most parents and teens agree that it’s […]