WEGO Challenge; My Favorite Social Media People
As I blogged about, this has been a rollercoaster week for me health wise so this is an incomplete list of my favorite places on social media. As promised I am continuing WEGO’s National Health Blog Post Month. Today’s prompt is:
Favorite Fridays : Who are your favorite people to follow on social media? (Twitter, Facebook, Instagram, etc.)
Community is at Our Fingertips!
I like to follow social media sites that help me learn about my own illnesses (“The Big 3” are: Myasthenia Gravis, Polycystic Ovarian Syndrome, Bipolar Disorder) but I also like to learn about other disorders because the truth is we are all brothers and sisters. Since we live in the Internet age it’s easier than ever to spread awareness about diseases that are rare or misunderstood. Myasthenia Gravis (MG) only happens to 1 in 100,000 people. Without the Internet, I wouldn’t know anyone with MG! Online I’ve met many wonderful activists living with illnesses like: fibromyalgia, CFS, lupus, Multiple Sclerosis, Muscular Dystrophy, RA, migraines, and terminal cancer. Because I’ve worked in mental health, I’m also blessed to know some fantastic mental health activists. Without further ado, here are some of my favs:
A. GREAT TWITTER NEWSLETTERS (HEALTH)
@HealClick: This newsletter has great information on many illnesses including fibromyalgia, Lyme Disease, CFS, RA, MS, and lupus.
@julianna12369: Julianna has a newsletter called The Chronically Awesome Reader. She shares useful tips on many illnesses including: bipolar disorder, lupus, and fibromyalgia.
@RogerDJones1: Dr. Jones is a physicist and entrepreneur who has many Twitter newsletters. One of them, QMedicus Immunology, has many helpful articles on autoimmune diseases.
B. COOL BLOGS (FIBRO, CFS, BEAUTY)
Laughing From My Sick Bed: I love this blog. The author, Irene has lived with fibromyalgia, migraines, and CFIDS/ME/CFS since 1975. And the title says it all! Like Irene, I believe that having a sense of humor is essential to surviving pain. (FYI: CFIDS = Chronic Fatigue Immune Dysfunction Syndrome, ME = Myalgic Encephalomyelitis, CFS = Chronic Fatigue Syndrome). The Twitter handle for this blog is @upasbook.
Focal Point Beauty: Nineteen-year old makeup prodigy, Kristine, runs this site. Kristine is one of my former students. She was actually my Mock Trial Team’s captain. Together we gave the other students makeovers; each of my former students knows the fundamentals of accessorization in addition to the three pillars of Aristotelian thought and the 25 most common logical fallacies. I’m blown away by how advanced Kristine’s technique is when I think back to what I was like at her age.
C. MYASTHENIA GRAVIS (FACEBOOK, TWITTER)
FU MG Myasthenia Gravis: Yes that’s what the Facebook group is called. I’m so glad I found it. I’m a new member who’s excited about meeting other Myasthenics. This FB group is not depressing; everyone has a great sense of humor despite our pain.
@mgaireland: This is a great Twitter resource that shares the latest research and advances in Myasthenia Gravis.
@boovicious: On a good day there are five people talking about MG on Twitter. @boovicious is one of my oldest friends on Twitter. Despite having MG, she even plays the piano and has defied many of her physician’s expectations for life with MG.
@cjvillano: Another cool #MGWarrior who also has remarkable determination in the face of this illness.
D. PCOS (FACEBOOK, TWITTER)
PCOS Diva: Amy Medling, the woman who started PCOS Diva, is like a life coach for women with PCOS. She gives women the tools to advocate for themselves and live happy lives despite their pain. On Twitter, her handle is @pcosdiva.
@Nyxks: This Twitter account has a great newsletter called “#PCOS Daily.” The articles help you better understand how to manage PCOS and whenever possible, decrease pain through lifestyle changes (cutting certain foods out of your diet).
@PCOSDietCookBk: This Twitter resource helps women with PCOS with delicious recipes so we can stay healthy while not being bored by everything we eat.
This is a really cool Facebook group for women fighting endometriosis. Endometriosis, the sister illness of PCOS, is the leading cause of pelvic pain and infertility in women. Suffering from PCOS and having family members who are fighting endo, this is a cause close to my heart. This Facebook group has something called Endo Warriors Buddy Program, which matches women with someone who also has this illness. Terrific idea!
F. BIPOLAR DISORDER RESOURCES (TWITTER)
@askabipolar: I write for Ask a Bipolar, one of the most popular depression websites. Readers can anonymously submit any questions they have about this illness—whether it’s about their own symptoms or how to help a loved one. You can read our articles at www.askabipolar.com.
@natasha_tracy: Natasha is an award-winning blogger and speaker. She writes a blog for Healthy Place (“Breaking Bipolar”) and has owned her own blog, “Bipolar Burble,” for eight years. Natasha gives factual information on bipolar disorder in addition to advice like how to talk to someone if you’re feeling suicidal or how to be productive with this disease.
@melodymoezzi: Melody is a critically acclaimed author, columnist, and speaker. She writes for bp (bipolar magazine), The Huffington Post, and Ms. Magazine. You can read her blog at www.melodymoezzi.com. Publisher’s Weekly praised her memoir, Haldol and Hyacinths, which came out this year.
G. LUPUS AND FIBRO (TWITTER)
Because MG is so rare, I’ve made more friends online who have lupus and MG. We go through many of the same emotions and have found strength in each other. Here are a few resources and people I trust:
@HibbsLupusTrust: HPT has volunteers who support patients with lupus. They say that “raising awareness is a way of life.”
@lupussistas: As a woman of color, I really appreciate what this former journalist turned lupus advocate is doing. Her goal is to raise greater awareness of lupus, particularly in the African American community. Many minority communities are ill informed about autoimmune diseases.
@LupusToday: This Twitter account has a great daily, comprehensive newsletter called “Lupus Today.”
@osaxy: Sherri is a brave woman of faith who lives with lupus and fibromyalgia. She is also a survivor of domestic violence.
@fashonbutterfly: They’re dedicated to global awareness of lupus and support research for a cure.
@fibrowellness: This is a resource dedicated to increasing fibro awareness and empowering patients.
H. SJOGREN’S (TWITTER)
@rsr1424: Rebecca is an inspiration to people who live with Sjogren’s, RA, and fibromyalgia. She’s like a ray of sunshine to many people afflicted with chronic pain.
@sjogrensstyle: Their tagline says it all, “Embracing the flair while avoiding the flare.” The founder (site: http://www.sjogrensstyle.com) lives with Sjogren’s, Lupus, Hashimoto’s, and Raynauds.
I. OTHER FACEBOOK PAGES I REALLY LOVE (ALOPECIA, CANCER, SPINA BIFIDA, MS)
Shine on With the Bald Princess: This FB page empowers women living with this Alopecia Areata (thought to be a systemic autoimmune disorder) and educates people unfamiliar with it. Women with this illness are bald. This page is filled with inspirational quotes, stories, and pictures.
Jane Maden Bingham: This one-woman powerhouse and cancer survivor started the successful campaign, Beautiful and Bald Barbie. I joined along with thousands of other people; Bratz ended up making bald fashion dolls with the proceeds going to City of Hope. As a doll collector, autoimmune warrior, and relative of cancer survivors, it’s my dream to interview Ms. Bingham one day.
Spina Bifida Association: This awesome FB group is devoted to prevention of Spina Bifida and empowering patients, including children, who live with this disease.
National Multiple Sclerosis Society: This non-profit has 176,000 followers on Facebook. They educate people about MS and help MS patients connect with one another.
J. BEAUTY (INSTAGRAM)
@upclosewithmadi: Madi shares pictures and advice on beauty and fashion. She is a freelance hairstylist and makeup artist. I just love her work!
So this is probably the longest entry you will ever read on this blog. But since I’ve met so many amazing people with different illnesses, I had to pick a sampling from each illness. Stay tuned for tomorrow’s WEGO post when I answer the question, “What’s the most embarrassing situation your condition ever put you in?” I’ve got a funny (short) story on that one. See you tomorrow.