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They Don’t Know What They Don’t Know: Learning to Manage Judgement and Criticism from Others When Living with a Chronic and Debilitating Condition

They Don’t Know What They Don’t Know: Learning to Manage Judgement and Criticism from Others When Living with a Chronic and Debilitating Condition

Written by Lisa Matthews I know I am not alone in my suffering…Recently, I read an article published in 2018 by The National Library of Medicine where it was estimated that,…

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Living with Dystonia – A Story of Overcoming Adversity

Living with Dystonia – A Story of Overcoming Adversity

On April 26th, I had the honor of speaking at the American Brain Foundation’s Commitment to Cures fundraising dinner during the American Academy of Neurology annual convention in Boston. I…

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What’s the Best Thing We Can do When We Are in Pain?

What’s the Best Thing We Can do When We Are in Pain?

In a word, nothing. In two words, don’t panic. In two other words that are the same but are more positive and action oriented…be calm. Let me explain…when we experience…

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How Photography Helps Take my Mind off my Pain from Dystonia

How Photography Helps Take my Mind off my Pain from Dystonia

I have lived with dystonia (a neurological movement disorder) and chronic pain for over 20 years. The very active life prior to dystonia is night and day compared to the forced sedentary…

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Managing an Overly Stimulating Environment to Protect our Health

Managing an Overly Stimulating Environment to Protect our Health

The other day I read a post in a dystonia support group that is similar to something I see and hear very often. I’m sure you have as well, and…

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How do we Move Beyond Pain and Suffering?

How do we Move Beyond Pain and Suffering?

We have all at one time or another experienced pain and suffering of some kind. I sure have, living with dystonia for over 20 years, the first 5 of those years being…

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How Resilient are you Living with Rare Disease? Probably more than you Think

How Resilient are you Living with Rare Disease? Probably more than you Think

Having lived with chronic pain and involuntary muscle contractions from a neurological movement disorder called dystonia since 2001, I felt defeated many times. But I am still here battling every day… and…

Continue Reading How Resilient are you Living with Rare Disease? Probably more than you Think
We Have to Stop Beating Ourselves up When We Are in Pain

We Have to Stop Beating Ourselves up When We Are in Pain

Chronic pain reminds me of a bully that picks on kids in the schoolyard every day. Like the bully, chronic pain does not follow any rules and after multiple beatings,…

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You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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