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General

When it Comes Down to Winter Survival


Even though I took my birthday week off, I’m coming back with a self-indulgent theme; the winter storm I just weathered in my tiny house, with pain, limitations and all. This is something that will touch most of us at some time or another—survival skills in storms and natural disasters.

Some of us live in very sheltered conditions out of necessity or privilege. My budget limits my choices, and I chose a rugged lifestyle over the other options available. I would easily qualify for a housing subsidy, but I’d have to live in a complex. I went with a tiny house on wheels so I could enjoy privacy and pleasant surroundings, and be able to move elsewhere if my space stopped offering those things. Quiet, and a level of control over the sound profile in my environment, are critical for my health. I could not have that in subsidized housing. Even the low-end condominium I left last year was noisy enough to keep me constantly stressed.



Disability

Managing Rare Conditions in the ER


This post was inspired by the pitfalls of modern life—I misread an article because I speed-read it. I thought it would make a great blog topic, but when I went back to get information from it at a proper scholarly pace, I realized I had it all wrong. Then I thought, “But what if I’d had it right? I bet that’s a real concern for my audience.”

The deal is, a woman at St. Charles Hospital in Bend died in the ER because her adrenal crisis was misdiagnosed https://ktvz.com/news/2019/12/30/st-charles-bend-hit-with-26-5-million-wrongful-death-suit/. Which is a terrible thing, made even worse by the fact that her life could have been saved with a dose of an inexpensive corticosteroid.

Now, when I first saw the article, I thought the woman knew what was happening and had been unable to convince the ER doctor of it. When I realized my mistake, I remembered the research I did on dysautonomia, and how many people had doctors who didn’t believe them.



Disability

Holidays II: The Sacred Nap


Napping made The Week magazine’s list of Things They Said Were Good For Us in 2019. It was number one, not that they were ranked, but the fact that they mentioned it first is not for nothing.

For regular, healthy people, napping for at least 5 minutes twice a week or more is beneficial for heart health. They don’t know why, but a study of over 3,000 adults showed that people who nap are less likely to have heart attacks (The Week, December 27, 2019, v19:956-957).



General

Holiday Parties with Special Needs


Image source:  Giphy.com

I’m getting ready to go to my annual holiday party with a cosplay group I belong to. We celebrate my town’s historic brothel district by dressing as Victorian-era madams and we show up in the town’s historical district for the local festivals, especially Dirty Dan Days, which celebrates our founder. He was a robust customer of the local sporting houses.

Before I got hit, the party was no big deal. In the 9 years since, it’s been an annual labor of love. Half fun, half ordeal.



Disability

Invisible Disabilities–Why the Holidays Do Us In


Today I was driving home from a chiropractic appointment, one I usually ride my bike to, but we’re having a “Pineapple Express” here in western Washington and it’s blowing and dumping rain. We have one week until Christmas, and I feel like I went over Niagara Falls in a barrel. Why?

The holidays can leave us all feeling exhausted, overextended, unfulfilled, broke, and broken. When you have a hidden disability, the holidays can be unmanageable. Why do they hit us so much harder than the physically unchallenged?



Disability

The Emotional Labor of Invisible Disability


There’s a lot of talk about emotional labor in romantic relationships and friendships these days. Wikipedia defines emotional labor in terms of the workplace:  “Emotional labor is the process of managing feelings and expressions to fulfill the emotional requirements of a job. More specifically, workers are expected to regulate their emotions during interactions with customers, co-workers and superiors.”

The concept came about when women began to push back against the expectation of doing most of the emotional labor in the workplace. It caught on rapidly and was applied to non-work relationships. If you’re the one in your group of friends who initiates all the activities and coordinates everyone, you’re doing the emotional labor for your group. If you’re the one in a marriage who buys gifts and sends cards to all the relatives on both sides, you’re doing the bulk of that emotional labor in your marriage. Those are broad-brush examples, and emotional labor can extend to things like dealing with a loved one's addiction, or it can be as simple as choosing a gift for someone, or researching a joint purchase.



General

We Need to Feel Seen


Source: IPINMG.com

This meme appeared on my Facebook feed last week and I knew immediately that it would inspire a post. If it’s not clear on your device, it says, “Just because someone carries it well doesn’t mean it is not heavy.” This is the source of much of the dissonance in my life.

I like to look like I have it all together. I’ve come a lot farther than anyone expected me to, and I’m proud of that. At the same time, though, I want some people to see what it takes to put up that front.



Disability

Finding the Silver Lining in Loss


I have a friend I see once every summer, the nephew of the owners of the resort where I stay. Jamie has a degree in philosophy and we have the most amazing conversations. The things we talk about influence my thoughts over the next year until I see him again and we pick up where we left off.

The summer before last, Jamie asked me, “If you could go back in time and not go out on your bike the day you got hit, would you?”



Disability

Belated Veteran’s Day Tribute


On Veteran’s Day last week, I bought a  poppy from a veteran outside my grocery store, to help disabled veterans, and I thought, “I bet a lot of disabled veterans are affected by issues you can’t readily see.” Then I got taken down by this virus that’s still trying to hold me down, and that column didn’t get written on time.

Today, a little late, I honor the veterans. And disability is all year round, not just...


Disability

When We Get Sick, Do We Feel Worse?


Remember when I said November is nobody’s favorite month? Welcome to cold and flu season. You can’t go into a drug store without practically being chased by syringe-wielding nurses who want to give you a flu shot. “No thanks, I’m good,” I say. If pressed, I claim I got mine from my doctor already. I’m allergic to eggs, which makes any egg-cultured vaccine a problem. I’m so allergic, in fact, that I failed to develop any immunity to rubella after getting the vaccine in 1983. I did, however, have so much congestion that I got a bacterial infection that made me seriously ill for 3 months. (I know about the lack of immunity because the state of Montana was still blood testing for marriage licenses in 1988.)