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Solve ME/CFS is a nonprofit that supports scientific research and physician and caregiver education on ME. Patients benefit from its research grants and free educational newsletter and webinars. I like keeping up with research developments and learning names of scientists who are interested in exploring ME. Without a new generation of researchers and clinicians focused on ME, we will lose the little progress we’ve made in the past decade. SolveMECFS.org has a large website, so I’ll narrow it down to the most useful parts: patient resources, whose audience ranges from those who don’t know what ME is to those who’ve lived with it for years, and scientific initiatives, including links to a patient biobank registry and patient narratives for medical professionals. This resource has been added to my list of resources for patients with ME or fibromyalgia. With Solve ME/CFS, you can get involved in advocacy campaigns or simply learn more about your diagnosis. If there are other resources you’d like me to share, let me know in the comments! 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.
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Want a new prayer to pray for yourself or for someone who has a chronic illness? Use these two prayers from the book A Year of Prayer: Lord Jesus, you are the Lord of our bodies and our souls. Teach us to care for the bodies you have given us, and remind us that they are temples of the Holy Spirit. Keep both our souls and bodies safe from all harm and danger today. In your name we pray. Amen. O Great Physician, your forgiveness brings us the healing we need. Yet so many remain afflicted with sickness and disease. Strengthen doctors, nurses, and all who care for the sick, that they may use the skills you have given them to bring comfort and relief. Encourage all who are ill with your presence and love, that they may put their trust in you. Amen.  Source: Long Thiên, 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.
A mother’s love is an art more beautiful than any piece hanging on a wall or standing on display. It includes self-sacrificing concern for the emotional and physical needs of her children, no matter their age or ability to reciprocate. Mothers who care for their children with chronic illnesses and disabilities have a demanding role that I share my appreciation for every day. Thank you, mothers! My mom, who is just like me but better and taller, believed in my illness from day one, advocated for me in front of dismissive doctors, cooked my meals and did my chores, pulled me off couches when I couldn’t get up, and read pages from my memoir draft, and that list barely skims the surface. Thank you, Mom! Give your mom a hug, phone call, or whatever token of love and appreciation she wants today.  Mom and me having the chocolate fix of our lives in Germany in March 2014 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.
I received, from another writer with a chronic illness, a list of venues for disability-related writing. Check them out. Not only can publishing your writing be therapeutic, but it is also a powerful way to spread awareness of the experiences of people with disabilities. Don't be afraid to share your voice.
 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. The shelter-in-place order has its consequences for our social, emotional, and financial well-being, but a benefit of it is its opportunity to experience what life is like for those who have chronic conditions that leave them homebound. Such patients are used to decreased socializing, decreased financial and community resources, and increased isolation and loneliness. The current period is nothing new for them. They’re used to doing whatever it takes to maintain what health they have. Plus, they stay sheltered for months or even years, long enough for their careers to be ruined and their friendships to fade. We trust the coronavirus sheltering in place will be temporary and try to use this time to do the things we normally don’t have time to do. Why not also take this time to understand the needs of people who are usually homebound? Why not also take this time to show these people you care? If you have a chronic condition that is isolating, now is your chance to share your experiences with the world. Share this post or share your own experience. Stay at the top of others’ social media feeds. Make your voice heard! On the other side, we could see a brighter future for people with chronic illnesses and invisible disabilities. Let’s make a positive change!  Source: Sarah Wynne, 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. Have you been belittled for having an invisible chronic illness, and have you tried treatment after treatment for adult acne? I said yes to both and read two articles this month that were both reassuring and informative. The first, from the March issue of Women’s Health, profiles eight women with chronic illnesses, including polycystic ovary syndrome and fibromyalgia, and their self-advocacy. “Owning It,” by Alison Goldman, can be read here: https://www.alisonmgoldman.com/womens-health-march-2020-owning-it The second is better if skimmed because it’s a medical journal article. However, it’s full of facts about diagnosing and treating, both with pharmaceuticals and with complementary (nondrug) approaches, acne in women. The article by Drs. Tan, Schlosser, and Paller can be read here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986265/ We stand to gain much if we advocate for ourselves and make informed decisions about our own health care. 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.
I tried, really. Several books and research articles made me think this diet would help with my systemic hormonal imbalance, inflammation, GI upset, and acne. Going dairy-free, while still a way to benefit the environment, is not a way to benefit my personal health. I had zero improvement in my digestion, pain, and acne. Going forward, I'll restrict but not eliminate my consumption of dairy products and eggs (i.e., my breakfasts and baking will be vegan). If you're thinking of making any diet change while chronically ill, you have to talk to your health care professional first and ease into the change. For more background on why I tried this challenge, see my previous post. I am grateful for the products and resources I used during my dairy-free challenge. Coconut Cloud cocoa mix and Ghiradelli Twilight dark chocolate bars were my chocolate replacements. One of the resources I'd recommend to people considering changing their diets to benefit their health is The Complete Acne Health and Diet Guide by Dr. Makoko Trotter. His book is full of research, skincare ingredients to avoid, patient testimonials, and recipes. However, he recognizes that cutting sugar and dairy might be too much to ask and kindly summarizes the best course of action: Reduce sugar! The second is Alisa Fleming’s godairyfree.org, the companion site to her book. Various tabs cover health conditions the diet can ease, FAQ, product reviews, and guidance for baking and dining out. In short, too much dairy promotes hormone imbalance because of the hormones naturally and unnaturally appearing in milk. It's frustrating to still have my digestive system be malfunctioning. If you have an idea as to why this well-researched diet didn't work for me, let me know in the comments! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel{a} gmail.com.
“Let nothing dim the light that shines from within.” —Maya Angelou Bonus quote: “See the light in others, and treat them as if that is all you see.” —Dr. Wayne Dyer 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.Do you have poor circulation, Reynaud's, or cold intolerance? If so, winter stinks, but for Christmas I received two warming products. They've made work and relaxation more comfortable. First, I tried the Proaller foot warmer. This soft, lap blanket–sized pocket heats up within 30 seconds, has three heat settings, and is washable. I've never needed the high heat setting because medium is already very toasty. You can stick your feet in, but I also put the warmer on my lap and tuck my hands inside. Second, I tried the ValueRays Mouse Hand Warmer. This square pocket with nonskid bottom and fleece top plugs in and heats via USB. It's slightly larger than the average mouse pad, so your mouse pad, mouse, and hand will fit inside and move around without the scroll wheel or buttons being affected. I can slide my mouse across the outside of the pocket if my hand gets too hot. This product also doubles as a lap warmer if you're of a fairly small build. Here's to toasty fingers and toes in 2020! If there's another warming product you want me to try, tell me in the comments! 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.
Take Daily as Needed by Kathryn Trueblood Never have I read a book that truly captures a feeling I've often had: guilt for the effects of one's chronic illness on one's family. Trueblood's 2019 novel is written as a chronological set of short stories centering on one somewhat dysfunctional family. It's an atypical novel focused on what may seem to be atypical experiences but actually are the norm for countless families. Because there is so little well-written fiction concerning a family with various emotional and physical disabilities and illnesses, this book helps fill that void and is therefore valuable. There are books you read to escape from the harshness of life, and there are books you read to find empathy in dealing with the harshness of life. Those who seek the latter will find it in Take Daily as Needed. The illnesses focused on are ADHD and Crohn’s. You can learn more about the book on Goodreads. The Clear Skin Diet by Nina and Randa Nelson If you’re searching for a radical way to eliminate acne and for research that counters the commercial food industry’s claims that we need meat, dairy, and fat in our diets to survive, you’ll find it in The Clear Skin Diet (2018). Dozens of young people following the plan, which eliminates all animal products, oils, and high-fat plant products and promotes fresh, unprocessed foods (I know, that might make you quit reading right there, but humor the beautiful authors for several more chapters), totally cleared their severe acne. The photos, testimonials, and snippets from nutritionists and functional medicine doctors appear honest and dramatic. The book is written in an approachable style and provides counterarguments for common objections and over a dozen recipes. I was inspired to try the diet, following it 80% for four weeks as my specialist recommended. You need to consult with your own physician before making such a radical change. That is not emphasized enough in this book. I made extra trips to the bathroom the first three days of the diet (eating way more fiber!!). (If it helps my acne, I’ll let you know in a separate post. I’m only a week in.) Those with cystic acne, food allergies, or depression should consider this book. You can view the authors’ website at ClearSkinDiet.com.  Photo credit: Stefano Corso, 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.
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