Tags » Rare Disease

Thank You!

Hey All! Stephanie worked very hard to put together a thank you video for all of our donors and sharers! Thank you so much for all of your blessings! 22 more words


New Fundraiser! Please help!

Hello!  Please check out my new storefront.  I have added more shirts with a variety of colors and sayings.  Each one helps me financially plus helps to bring awareness for both rare diseases I have. 7 more words


Why can't I sleep?

Does anyone else suffer from sleep anxiety?  I don’t know if it’s from the brain tumors, hysterectomy menopause, anxiety about my dire finances, depression, being overweight…or if it’s a hot mess from all that and more. 102 more words


HuffPo Blog: When the Time Comes, Could You Let Go & Die?

I have a very good feeling about my transplant & my ability to recover & squeeze some more time out of my life. That said I’m not naive, I know even the strongest have had blood clots post transplant, or factors beyond their control happen that changed the outcome. 376 more words

Blog Entries

I Chose Life

Yesterday was my birthday. I am now 71 years old. And this was a profound birthday with more personal and emotional growth.

I write frequently about the realities of living with rare and chronic medical conditions. 1,026 more words

Life Coaching - Recovery From Abuse & Trauma

the life cycle of a chiari malformation

i really WISH that Chiari malformation was called a chiari disease.

Malformation is to me a misleading term given that it isn’t curable by the surgery i had and many others had for it. 1,628 more words

Me And My Defects

Why I'm writing a Blog

My Name is Lucy, I am 23 and you could say I am like any other ‘normal’ 23 year old, but that wouldn’t necessarily be true.  299 more words

Charcot Marie Tooth