My 2 year Sepsis Anniversary- I hope to see you again in 1 year!
As I was thinking about what I wanted to share on my 2 year Sepsis Anniversary- I started having some very dark...
Read moreMeet Mandy, and Nugget- 2 Tough Cookies!
I first met Mandy several years ago at an IDF Conference. Of course, Mandy was in her LBD (Little Black Dress) for...
Read moreMeet Judy K- PI patient- as we end PIDD Awareness month
“We must be willing to let go of the life we planned so as to have the life that is waiting for us” Joseph Campbell...
Read moreMeet Joanna
A PIDD patient living in New York during the Pandemic Joanna has years of experience living with rare disease and...
Read moreWash your Hands!
I started writing this last week when I couldn’t stop crying. I was not crying for myself – but, for our...
Read morePI + Flu patients tell their stories
After speaking with 4 PI patients – I learned how different their flu stories are. Sharing with you to compare...
Read moreMe and Santa
Why am I looking forward to Santa? It’s not for presents – it’s for spending time with family and being...
Read moreMy 1 year Sepsis Anniversary- today I’m celebrating ME!
So this is where and when it all started for me – exactly 1 year ago today. I was at Mayo Clinic for routine...
Read moreHow has summer been so far?
Did you go on vacation? Make the family picnic? Take the road trip? If you did – how did it go? Were you able...
Read moreRare Disease, Summer Fun and Expectations
Dear Rare Disease Patient, Whether it’s Primary Immunodeficiency, Myositis, Lupus, MS, RA or any of the delightful...
Read moreWhere have I been lately?
I’ve been in hiding. I had 1 week at Mayo in May and I came home with HOPE. Even though I didn’t like any of the new...
Read moreIDF National Conference 2019!
Feeling a bit nostalgic this evening as I watch my Zebra buds checking in to The IDF National Conference. I’ve been...
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