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
Bear Finding Balance
A little blog revealing the raw realities of living with chronic illness, rare disease, and mental illness. I share tips and tricks to dealing with the trials of illness, and I hope to encourage others through my writing
Bridgwater Crafts
A blog about living with chronic diseases while crocheting, knitting and reading.
Cat Burchmore – Reveal Your Magic
A blog with a unique perspective from someone living with cancer. Covering all life topics, living with a chronic illness and work life, too.
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.
Elizabeth Barone
Twenty-something with an autoimmune disease trying to build a career as an author, one book and pill at a time.
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.
Homeschool Insights
A family blog: Sharing encouragement and tips for living with Chronic Illness and Homeschooling
hopeforheather
“Cowden Syndrome and Lhermitte-duclos Disease are words, not sentences.”
HypoGal, Shortcuts To Living With A Chronic Ilness
HypoGal Blog shares everyday life with a chronic illness.
I’m Sick And So Are You
A humorous and sometimes emotional take on lessons learned after being diagnosed with a desmoid tumor.
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.
Inkblots of Hope
Hope is an option, even in chronic illness and other seasons of pain.
Laughing while you’re crying
A blog about trying to live a positive life, with a rare brain condition called IIH and writing to raise awareness that migraine is more than just a headache. My aim is to help just one person with my story, if I achieve that, then I have done what I set out to do.
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.