rare disease

A Picnic With Ants
My life disAbled, living with multiple chronic illnesses. It just is.
AS I Live & Breathe
A Woman’s Journey With Rare Disease
Bridgwater Crafts
A blog about living with chronic diseases while crocheting, knitting and reading.
Eco Fluffy Mama
Eco Fluffy Mama is a blog that focuses on Green Living & Chronic Illness. Tamsin talks about her own health conditions and also hosts guest posts for others to talk out about their health conditions.
Finding my Miracle
Keeping it real and laughing when I can as I figure my way out through this medical maze that is my life.
Green Eggs & Spoons
Sharing my journey of trying to find my new normal as a medical zebra with a dash of comedy and a splash of realistic optimism.
HAE Girl
HAE Girl is a blog about my experiences with Hereditary Angioedema, and Polycystic Ovarian Syndrome. HAE Girl is all about being yourself, sharing our stories, laughing at our lives and of course, creating a community of chronic illness fighters to support each other.
hopeforheather
“Cowden Syndrome and Lhermitte-duclos Disease are words, not sentences.”
Inflamed & Untamed
I’m Sara and I have Crohn’s disease and a rare disease called, Chronic Intestinal Pseudo Obstruction. I also had my entire large intestine removed and live with a J-pouch but prior to that lived with a temporary ileostomy.
Living Today Well
As a lifelong “spoonie” I have faced the blank stare of doctors who can’t or have no idea how to help, the glare of unbelieving bosses (and “friends”) and pity in the eyes of those who truly love and care for me. I have experienced both good and bad times, like most of you.

I have fought to recover from nine major intestinal surgeries, ongoing intestinal inflammation, chronic debilitating nausea, Hashimoto’s Thyroiditis, abnormal kidney and liver function, abnormal endocrine function, cancerous fibroid tumors resulting in multiple surgeries finally necessitating a full hysterectomy… and now my new favorite – abdominal cutaneous nerve entrapment syndrome – or ACNES.

I have spent my life adapting my behaviors and activities to achieve a level of normality. And I have been quite successful at times. Other times – not so much. I have learned to be very good at hiding my symptoms and medical issues by slapping on a happy face, and some great make-up! I am sure you have too.

So I decided to start this blog to create a resource to make those days a bit more bearable. A place where I strive to find the nugget of goodness in this sea of negativity; the crumb of information or encouragement that may just help one of my fellow “spoonies.” My goal is to share the lessons I have learned and the methods that help me. Hopefully I will help you, make the most you can out of every day.
Memoirs of a Strong Woman; A Frightening Look Inside the US Healthcare System
A trip to the local Emergency room culminates in profiling, medical neglect, and then gaslighting, and ultimately physical abuse by a sadistic on-call neurologist and then his female resident. Little does the patient know this is just the beginning of a horror story that never seems to end.
Miss•Treated
Miss•Treated is devoted to fighting misogyny or sexism in the medical profession one story at a time.
Miss•Treated
Moving Naturally with Hypermobility
Education for patients and healthcare providers on proper physical therapy techniques, natural movement, and restorative exercise for Hypermobility Syndromes, such as Ehlers-Danlos syndrome (EDS), including the complexities often caused by overlapping conditions.

Living with chronic pain is one of the hardest things that many of us have to endure on a daily basis. Living with pain while also coping with the multi-systemic effects of joint hypermobility, commonly diagnosed as Ehlers-Danlos syndrome (EDS), is even more challenging. One of the best treatments for chronic pain due to Hypermobility Syndromes/EDS is learning how to move and exercise properly — our muscles do what our connective tissues cannot.

Move More. Move Better.
My Invisible Illness Life
Living a life full of love, hope, happiness and faith in the face of chronic illness
My Medical Musings
My musings of living a medically retired life with a rare genetic bone disease, permanent colostomy & Rheumatoid Arthritis
My Normal
storytelling for rare disease health
Not So Average Mama
Not So Average Mama blog is a blog about life in general. I write about many topics including Chronic illness and alternative ways of treating. We are also an unschooling family. I work as a professional photographer and spend my spare time with my kids at roller derby as well as fostering puppies.
Not Standing Still’s Disease
Proof that you can conquer anything – even chronic illness – with a sarcastic attitude, a smile, and a backwards baseball cap