I’ve spent most of the past 10 years living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). And 99% of the time, I’m not being honest about…
What It’s Like to Mask Your Invisible Disability
Every Decision I Make Will Be Wrong So Just Poison Me
You are immunocompromised except that you are definitely not immunocompromised you just have a very weak immune system. Yes, we know we said you had…
We Shouldn’t Be The Top News Story
Last weekend, as my family and I returned to dock after a brief kayak ride on a cloudy day at the Jersey Shore, we were…
When You Literally Don’t Know How to Live…Did My Vaccine “Work?”
Do you want to know the answer…when there’s not much you can do about it? It must be what goes through the mind of every…
Why I’m Stopping Treatment for my CVID
I write a lot about my invisible chronic illness to help inform folks who may be Google searching for answers or just commiseration. I’ve been…
CVID Updates: Lifestyle Modifications, Support, and Sharing
I’ve been posting quite a bit lately about my journey with the chronic illness CVID. It’s been a pretty rough few months, but I am…
Inside the Mind of a Person with Common Variable Immune Deficiency (CVID)
By the time I open my eyes my husband has already done the grueling work of getting the kids dressed, fed, and off to school.…
Demanding a Path to Better: Being Your Own Health Advocate
I’ve written before about discovering my primary immunodeficiency and living with Common Variable Immune Deficiency. I’ve also talked about how the diagnosis was pretty much done…
If I Did Everything the Health Professionals Told Me
Having a rare chronic illness – in my case primary immune deficiency – is more than just physically exhausting. It is emotional torture, rife with conflicting advice,…
Living with Primary Immunodeficiency
Ever since my second child was born in 2013, I haven’t been the same. My pregnancy, delivery, and recovery seemed uneventful enough (apart from a…
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