Tags » Rare Disease

Shame. An Unwanted Guest

A burning feeling
grabs hold of me
sits inside my being
weighs me down
attacks my thoughts
steals my energy
savages my hope
tells me awful ideas… 418 more words

Rare Disease

To Tat or Not to Tat (Part II): There's Always A Work Around...

So in a previous blog post, I mentioned how I asked my transplant team if I could get a tattoo.

I understood why they told me no but I was disappointed.   236 more words

Blog Entries

Bukowski's Writing & Me

It’s interesting that I happened to stumble upon this late last night…

Charles Bukowski (my favorite poet) penned The Crunch in 1977.  This was year I was born. 174 more words

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Why I am an advocate

Recently I was asked why I’m an advocate for childhood cancer, early onset colorectal cancer and rare diseases. It happened on a day when I was exhausted from chronic pain and just wanted to sit there and do nothing. 306 more words


Article: Massachusetts Lawmakers Seek Protections Against Discrimination In Organ Transplants

I want to thank my friend, twitter buddy, & disability advocate Gregg Beratan for tweeting me this article.  I also came across it in my google alert. 746 more words

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This is me.

I’m a former drug addict, abuse survivor, cancer and rare disease warrior, and I battle depression, PTSD and anxiety on a daily basis. Damn, I forget you’re not supposed to talk about things like that or suicide because most people prefer to let everyone see the illusion about how perfect their lives are. 71 more words


Fear Is A Soul Stealer

I used to live a fantasy
yep, it was a lie
an untruth I told myself
safe in the world
nothing bad could happen
I was done, finished… 547 more words

Life Coaching - Recovery From Abuse & Trauma