Blog: Lightening the Shadow - Darla Nagel

When Doctors Leave You for Retirement

8/2/2021

I’m facing the retirement of two helpful physicians and knowing their replacements will be different in their approach to my illness. I am concerned about my care, especially if I have a relapse. I am grateful for all the ways these two physicians, known in my book as Dr. Three and Dr. Special, have helped me. I wish them a blessed retirement yet wish they could remain in the field for patients like me.

A patient has to be assertive with, provide a timeline of illness events and tests to, and review records from physicians. I did all three with these two doctors after negative experiences with previous physicians. The patient/provider relationship is vital. There is a crucial need for physicians with knowledge of ME/CFS care, especially in light of the increase in cases of long COVID, or post-acute sequelae of COVID.

If you’re a budding health care professional who wants to know more about ME/CFS, email me! If you want additional lessons learned from chronic illness, email me so that I send them your way!

Man using wheelchair assessing accessibility

Photo: Province of British Columbia, Flickr Creative Commons

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

What Is Ableism? What Is Ableist Language?

6/30/2021

Stemming from a possibly good-intentioned presumption, ableism is the exclusive attitude that disability has to be fixed. Many people with disabilities don’t want to be viewed as less capable of life activities and don’t want their voice to be ignored. Ableist language, however subtle, promotes ableism.

Consider these examples:

“You’re blind to what your boyfriend wants.”
“You’d have to be insane to get a fourth dog.”
Lumping people together by using “the”: “the elderly,” “the handicapped,” and “the mentally ill.”

To learn more, read my disability activism post or online examples of ableist language.

Black woman using hearing and seeing assist devices

Source: Maryland GovPics, Flickr Creative Commons

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

Inspirational Quote for People with Disabilities #12

6/1/2021

“We all carry scars...inside or out. You’re no different to the rest of us.”
--Downton Abbey, Mrs. Hughes to Mr. Bates, who uses a cane

Whether the disability is visible or not, we need to look at the commonalities rather than the differences between people with disabilities and people without.

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

Easy Dairy-Free Baking Recipes Tried for 2021

5/3/2021

Can you bake on a dairy-free diet? Can you bake on a vegan diet? Yes and yes. Baked goods will still turn out without eggs and milk with a few substitutions. Here are three recipes I’ve made a few times: cranberry orange muffins, maple granola, and unbelievably vegan brownies.

Cranberry Orange Muffins (Vegan)
Makes 6 jumbo muffins. Adapted from Healthy Living Market.

2 cups flour
2/3 cup sugar (or a mix of granulated sweetener and sugar)
2 tsp baking powder
1/2 tsp baking soda
1/2 tsp salt
1 cup orange juice
1/3 cup applesauce with 1 Tbsp oil
2 Tbsp orange zest
1.5 teaspoons vanilla extract
1/4 tsp almond extract
1.5 cups fresh cranberries, roughly chopped (or 1 cup dried cranberries and 1/2 cup diced orange)

Heat oven to 375. In large bowl, mix dry ingredients (except cranberries). Make a well in the center and add liquid ingredients. Mix just until wet ingredients are moistened. About halfway through mixing add the cranberries.
Fill muffin tins 3/4 full and bake 23-25 minutes, until lightly browned on top and a toothpick comes out clean.

Maple Granola (Vegan)
Makes 8 cups. From Cookie and Kate.

4 cups old-fashioned rolled oats (use certified gluten-free oats for gluten-free granola)
1 ½ cup raw nuts and/or seeds (I used 1 cup pecans and ½ cup pepitas)
1 teaspoon fine-grain sea salt (if you’re using standard table salt, scale back to ¾ teaspoon)
½ teaspoon ground cinnamon
½ cup melted coconut oil or olive oil
½ cup maple syrup or honey
1 teaspoon vanilla extract
Later:
⅔ cup dried fruit, chopped if large (I used dried cranberries)
Totally optional additional mix-ins: ½ cup chocolate chips or coconut flakes

Preheat oven to 350 degrees Fahrenheit and line a large, rimmed baking sheet with parchment paper.
In a large mixing bowl, combine the oats, nuts and/or seeds, salt and cinnamon. Stir to blend.
Pour in the oil, maple syrup and/or honey and vanilla. Mix well, until every oat and nut is lightly coated. Pour the granola onto your prepared pan and use a large spoon to spread it in an even layer.
Bake until lightly golden, about 21 to 24 minutes, stirring halfway (for extra-clumpy granola, press the stirred granola down with your spatula to create a more even layer). The granola will further crisp up as it cools.
Let the granola cool completely, undisturbed (at least 45 minutes). Top with the dried fruit (and optional chocolate chips, if using). Break the granola into pieces with your hands if you want to retain big chunks, or stir it around with a spoon if you don’t want extra-clumpy granola.
Store the granola in an airtight container at room temperature for 1 to 2 weeks, or in a sealed freezer bag in the freezer for up to 3 months. The dried fruit can freeze solid, so let it warm to room temperature for 5 to 10 minutes before serving.

American Girl Brownies (Yes, Vegan!)
Yes, they’re soft in the middle! Makes a 13 x 9 pan. Adapted from American Girl.

2 cups flour
1.5 cups sugar (or a mix of granulated sweetener and sugar)
1 cup cocoa powder
2 T baking powder
1/2 tsp salt
1 cup oil
1 cup maple syrup
1/2 cup dairy-free milk (unsweetened)
1 T vanilla
1 cup dark chocolate chips

Heat oven to 350. Whisk dry and wet ingredients separately, and then put the dry into the wet. Mix until just combined. Fold in chips. Pour into greased pan. Bake 34-36 minutes, until toothpick comes out clean.

Why do I care about vegan baking? The reasons are both for health and the environment.

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

Melissa Blake Is a Model for Disability Advocacy

4/5/2021

Melissa Blake’s disability is visible, and so is her pride about it on social media. An Illinois resident living with a genetic bone and muscular disorder, she has made her voice heard in publications such as Psychology Today, the Chicago Tribune, and HealthyWomen as well as her blog, So About What I Said. Her core message is simple: listen to people with disabilities. Blake sees that as the way past ableism. As she wrote in HealthyWomen this year, “My hope for a brighter, less ableist future is the reason I continue to be so visible and vocal, especially on social media.” She is an honest, down-to-earth woman with a love of TV and pop music. She is a true friend to the disability community.

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

Where Can I Send Cards to Patients? A Card Swap

3/12/2021

Since July I have been involved with the monthly Chronic Warrior Card Swap, in which people with chronic illnesses send one card to a recipient whose name and address are emailed to them. I enjoy making cards and brightening people's days, so this is a win-win for me. I always include an uplifting handwritten message in my cards. Then again, with these recipients, store-bought or printed-off cards are welcome as well. We have some understanding of the difficulties of daily life with illness. There are backup systems in place if you're not able to send a card in a given month.

This card swap is an easy way to help and meet other patients. It's not a chain letter system. I recommend joining. Get started by visiting ChronicWarriorCollective.com.

Don't Let the World Weigh You Down

3/4/2021

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

What’s the Point of Illness Memoirs? A Review

2/19/2021

I read an article that is part reflection on the cultural or philosophical purpose of illness memoirs and part review of What Doesn’t Kill You: A Life With Chronic Illness by Tessa Millerby. The article, “The Consolation of the Illness Memoir” by Anna Altman at The New Republic, caught my attention as the author of an illness memoir. Some intriguing quotes from the article:

“They each have to navigate an extortionate, elaborate, and emotionally draining private health care system. Miller connects her own experience to the American health care industry as a whole, from a several-billion-dollar wellness industry peddling dubious cures and therapies to a medical system in which doctors typically give their patients 11 seconds to explain their symptoms before they interrupt them.”
“‘Chronically ill people grieve two versions of ourselves: The people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined),’ [Miller] writes. She introduces the idea of ‘ambiguous loss’ a type of grief that arises when there is no clear outcome. That ambiguity, Miller acknowledges, can prevent resolution.”
“Whether because there are so many different diseases and conditions without a unifying experience, or due to our inability to truly understand another body’s experience of pain, the fact that millions of people in the United States live with chronic illness, many of them invisible, remains opaque in our cultural imagination.”

The article’s author notes that she has chronic migraine. Even if illness memoirs so far have failed to revolutionize American health care and cultural treatment of people with chronic illnesses, I believe the books are well worth writing and reading, for the benefit of patients and those closest enough to them to truly listen. Have you written one? If so, let me know, and I'll read it!

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

Best New Hand Warmers of 2021

2/1/2021

As a person with Reynaud’s disease, I frequently try new ways of warming my fingers and toes. The two solutions I’ve tried this year are affordable (and available in pink, among other colors). I detest that they’re made in China instead of the USA but like their effectiveness enough to share them with others with cold fingers.

AmazonBasics Desktop Space Heater
This ceramic 6 x 6 x 3 space heater heats fast and well when aimed at my right hand. With only one button, it’s the easiest space heater to operate. It’s just heavy enough not to tip over and just loud enough to prompt me to turn it off during video calls. It cost me $26 on Amazon in January 2021.

Beskar Hand Warmer
I’ve managed to get this hand warmer to work for 7.5 hours (1 hour on medium and the rest on low) before recharge, which is longer than any electric hand warmer I’ve had. It’s easy to operate and a little larger than many other models. It cost me $25 on Amazon in January 2021.

See a previous review of warming products here: https://www.darlanagel.com/blog/winter-warmer-product-reviews-for-feet-and-hands.

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.

Why to Hire People with Disabilities (and Retain Disabled Employees)

1/22/2021

Companies shouldn’t hesitate to hire qualified job candidates who have disabilities or chronic illnesses. These employees, overall, strive not to be burdens but instead to succeed. They are used to solving problems related to access, inclusion, and productivity, often in creative ways or with a team. See how many useful soft skills are mentioned in that sentence? Imagine the increased profits that could be realized through just one employee with these skills and work ethic. Disabled employees have plenty to offer, so offer them the job!

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.