How to Receive in the Season of Giving

Dec 08, 2020

We are officially now in what some refer to as “the season of giving;” giving thanks, giving gifts, giving of yourself, time, resources. It stands to reason that if there is giving, there must be receiving. As I think about what it takes to receive, I wonder: why is it so much harder? Why do I judge myself for it? Why do I feel needy when I accept help from others? Maybe you can relate.

What I find so difficult about living with chronic conditions is acknowledging that my life is...

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Navigating Solo Holidays for Maximum Joy

Nov 24, 2020

Because of family traveling in from out of town and the fact that I am especially susceptible to this virus (immune compromised, immunosuppressed, and I have lung disease), I’m refraining from participating in the small gatherings that are happening.  Not only will I be alone on Thanksgiving, but then my wife and I will quarantine from me for the two weeks following.  I’ll be alone for 18 days in total.  That’s longer than any time I’ve been alone since...

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Learning to Love This Imperfect Body

Oct 20, 2020

In the years that I’ve been sick.  My illnesses have multiplied and compounded.  What began as a diagnosis of mono, eventually became Myalgic Encephalomyelitis and Fibromyalgia.  Later I developed a rapidly advancing muscle wasting disease called Polymyositis and the adventure of having an auto-immune cluster of rare diseases began in earnest.  I lost 40 pounds of muscle weight in less than three months.  Along with it, I lost the ability to rise from a seated...

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How to Ask for Help When Everyone Is Struggling

Oct 06, 2020

With the weight of our collective and individual worlds, everyone is struggling in their own shape and form. Reaching out for others is incredibly important, but its hard to do that without feeling guilt due to the collective trauma and pain that everyone is going through. We would love to see a story that affirms that it is OK to still reach out for help, and maybe even potentially tips for navigating asking in today’s climate.

  • Discuss the feeling of needing help but feeling like...
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The ADA, Thirty Years of Impact

Jul 21, 2020

The history of institutionalization, marginalization, and oppression of individuals with mental and physical disabilities are as old as recorded history.  The fear, shame, and lack of understanding that have accompanied many disabilities has led to the killing, isolation, and mistreatment of disabled people in many, if not most, societies.  Whether disabilities were seen as “unclean,” or as a sign of being out of favor with god, or they were perceived as someone being...

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White Supremacy and Chronic Illness

Jun 09, 2020

I’m the only white kid in my family. Understand, me saying that does not give me some kind of get-out-of-racism-free card, just a different lens on growing up white than the one you may have had. Being the youngest in a family with two brown siblings made me aware of my whiteness earlier than some. It made my whiteness overt when for most white people, it isn’t.

That’s part of what privilege is — the invisibility of the advantages our skin color confers. If you had the...

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What's It Like to get Infusing Meds?

May 26, 2020

For five years now I’ve been getting infusions to keep my body from fighting itself.  Infusing meds are a big part of modern rheumatology.  Thanks to the large population of folks with rheumatoid arthritis, there are now a growing class of IV or intravenous meds aimed at helping those of us who have immune systems misprogrammed to attack ourselves.  These meds are generally designed to halt, slow, or shift that process, although some, like IVIG, provide additional...

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What is Myositis?

May 12, 2020

Myositis is a type of inflammatory myopathies that are most commonly thought to impact the muscles (which they do) but they can also affect the heart, lungs, GI tract, and be associated with the development of cancer.  Myositis is considered autoimmune in nature; in it the body begins attacking its own muscles, connective tissue, skin, blood vessels and other organs.  It is estimated that between 50-75,000 people in the U.S. have one of the forms of myositis.  This makes it...

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When the Story Gets Hard…

Apr 28, 2020

A mentor of mine says that “when the story gets hard, the story gets good.”  Mind you, when my story is in the midst of a hard swing, is likely the last moment I want to be told that things are “getting good;” and yet, time and again, looking back, it has been true.  We have these sayings like “it’s always darkest before the dawn,” because life is struggle.  Suffering is the shared mark of the human condition, and while we are scared of...

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How to Shelter in Place

Apr 14, 2020

President Kennedy was said to have been quoting a Chinese curse when he said, “may you live in interesting times.”  Well, these times are nothing if not interesting.  A global pandemic during a time of unprecedented global travel, communications, and commerce; at a time when our earth has more people on it and, therefore, a greater demand than ever for her resources.  This, my friends, is getting interesting.  As world leaders are responding with every...

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