|
Maybe you liked the 80s, but I'm sure you don't want federal research funding for a disease that affects more than 1 million Americans to be like it was in the 80s. Check out this video from #MEAction: https://youtu.be/B5mw45nE6Qg #NotEnoughforME #pwme 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.
0 Comments
Did you know it's Invisible Disabilities Week? If not, now you know and can share the news with others. How visible an illness or disability is does not determine its severity. Millions suffer not only from invisible disabilities and illnesses but also from others' misunderstanding. You can change that by:
 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.
One year after the launch of Lightening the Shadow, my book for people with chronic illnesses and their healthcare providers, I see hope. I see hope in the form of readers who have opened up to me about their own experiences, of a tiny increase in federal research funding for ME/CFS, and of my continued ability to write and copyedit. If you haven't left a review of the book on Amazon or Barnes & Noble, write one today! Reviews are how writers reach more readers, and there are many more readers out there who need this book. If you haven't read the book, it's never too late to read it! You can get a free sample on Amazon or get a free expanded sample by emailing me. We have the most hope in ending the silent suffering of ME, fibromyalgia, and all other invisible disabling illnesses if we work together in making our experiences known.  Source: Kinden Kuo, 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 better day to learn about ME than Severe ME Day? Rather than reading stats or a list of symptoms, read a patient's story, written to educate doctors, patients, and those who know patients. You know the name of this patient. My account doesn't take long to read. Get a copy for someone you love, for your healthcare provider, or yourself. Help end the suffering of ME. https://www.amazon.com/Lightening-Shadow-Diagnosing-Invisible-Chronic/dp/069214949X  Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare providers and encourage patients. To receive quarterly updates from her, email darla.nagel{a}gmail.com.
I do not know the cause of ME, but I read research abstracts when I can. It’s uncertain how each organ system goes awry and in what sequence. Organ systems are interrelated and affect each other. ME/CFS impairs mainly the immune, neurological, and endocrine systems.
 What causes ME? Source: Liza, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to encourage patients and educate health care professionals. If you want to receive quarterly updates from her, email darla.nagel {a} gmail.com.
As a patient with a chronic illness and a biomedical copyeditor, I often read books including medical conditions or research at my leisure (off the clock). Here are two book reviews (cross-posted to Barnes & Noble and Goodreads). The Day I Forgot - But Will Always Remember by Dr. Brenda Brown Dr. Brown shows the frightful nature of sudden cardiac arrest and the invisible yet disabling aftereffects that can occur. Her words as well as photos will resonate with many readers. She has written this account as part of her recovery, yet this book isn’t just about her: Appendices contain other survivors’ stories and resources that every person should know about. After all, sudden cardiac arrest can happen to anyone. Disclosure: I copyedited a substantial portion of this book. An Elegant Defense: The Extraordinary New Science of the Immune System by Matt Richtel Richtel’s book manages quite a feat: binding storytelling with science. By naming, describing, and assigning images (e.g., first responders, scouts, police officers) to different cell types, he makes the immune system science readable and applicable not only to the four patients profiled but also to any patient or physician. Have you wondered what advantages immunotherapy holds over chemo? Have you wondered why autoimmune disorders are so tough to treat and they continue to become more common? Is it really so bad to skip handwashing and antibiotics now and then? Top scientists and medical doctors offer their insight on these questions and more. Readers will be fascinated at how many mechanisms our immune system has to control. As a biomedical copyeditor who still has many concepts to learn, this book has been immensely valuable for not reading like a textbook. The one personal drawback of this book is that as an agnostic, Richtel can’t see that the overwhelming complexity of human immunity had to have been divinely created, not evolved, and that human “diversity” alone won’t be enough to solve the medical problems humanity has gotten itself into.  Pierre Metivier, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to encourage patients and educate health care professionals. To receive quarterly updates from her, email darla.nagel {a} gmail.com.
“Live for what tomorrow can bring, not for what yesterday took away.” —Author unknown, quote posted in the Michigan Vascular Mobility Center in Flint, MI Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate health care professionals and encourage patients. If you'd like to receive quarterly updates from her, email darla.nagel{a}gmail.com.
You’ve read a lot about ME/CFS and a bit about fibromyalgia and Reynaud’s disease on this blog, but today a friend of mine, Beth Koenigsknecht, takes the floor to describe her chronic illness, Friedrich’s ataxia. Here’s what she wants the world to know about her experience with it: I was diagnosed with Friedrich’s ataxia and it was genetically confirmed when I was 15. Now I am 33 so I have officially had Friedrich’s for 18 years. However I was diagnosed with heart condition at age 12, which unbeknownst to me was an FA symptom, and was having balance difficulties, so technically I have been FA symptomatic for 20 years. FA is pretty rare so I would be surprised if you had heard of it. Typically Friedrich’s ataxia presents in adolescence which can be anywhere from age 12 to age 18. I know of specific patients showing symptoms as early as age 5 or as old as their 50s but those are not very common. I followed the typical route by being diagnosed with a genetic blood test at age 15 prior to my physically confirmed cardiac condition at age 12. So I started at age 12 having to take a pill every day and go to doctors which actually jumpstarted my interest in science and desire to be a doctor myself. My activity level was accordingly restricted so that essentially meant that I was not allowed to play sports or run around. Which actually fit perfectly with my bookworm status and focus on academics. I preferred to curl up and read a book rather than play outside and I was content not being able to participate in gym class at school where I was allowed to work on my homework instead. And so the next two years went by swiftly until I turned 14 and really started to notice balance difficulties and what I thought of as muscle weakness. My pediatrician agreed and referred me to a physical therapist so that I could work on strengthening. Suffice it to say that that was the beginning of my neurological stuff that resulted in me being diagnosed with this unpleasant disorder that I had never heard of at the time called FA. But again with only 6,500 of us in the US alone and a very minuscule sliver that is practically unnoticeable of the world population in general, is not uncommon to not have heard of it. I have bounced between interest in science, writing, and art through the years. My bachelor’s degree is in neuroscience, followed by a master’s degree in English. I worked as a writing tutor for college students for those five years and then I taught just one writing class during the fall and spring semesters at a community college for the next two years. By then I had discovered that the disorder which initially I thought was not so bad, really just kept getting worse ever so slowly yet at an alarmingly steady pace. It is horrible but what makes mine so different from others is that in FA you remain cognitively intact, yet continue to physically deteriorate until you die in a shortened lifespan.  Source: Flickr Creative Commons To mark #MillionsMissing and my tenth illness anniversary, here are the second five of ten things I would have done if I had not developed myalgic encephalomyelitis. If I had remained healthy, I would have
 Learn more about life with ME in the book Lightening the Shadow. Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten health care professionals on patients' experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
Ten days before #MillionsMissing and seven days before my tenth illness anniversary, I’m reflecting on ten things that I would have done if I had remained healthy. Here are the first five. If I had remained healthy, I would have
Darla Nagel is an editor and writing tutor 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@gmail.com.
|
Darla Nagel
Darla copyedits biomedical research while living with an invisible chronic illness. Categories
All
Archives
May 2020
|
RSS Feed