For the past five years I’ve been in the trenches of the political, miscommunication and awareness fight of advocating for patients living IBD. I am the unlikely advocate. I was a private person & I’m not the most knowledgeable person when it comes to science. But I made a connection with…
Tag: CCFA
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Empowerment begins with Congress!
Such a weird title, right? What does your level of empowerment have to do with Congress? Well, after last week’s election most of us were left feeling befuddled, bewildered and blind sighted. Wasn’t so much about the politics. Politicians win and lose all the time and we move on. But…
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Cycling For A Cure
I was suppose to be in Washington D.C. this week with the CCFA. But the traveling schedule I had during Thanksgiving to get Jax to and from Kansas to be with his grandparents and father, took a serious toll on me. I am suffering from a full on AS flare…
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The Colon-less Advocate
The first of the month brought another great trip to Washington D.C. for the Digestive Disease National Coalition’s annual Public Policy Forum & Day on the Hill. I have to say that it isn’t the easiest thing for me to just get up and go away for a few days…
The Fake Colon and the Terrible, Horrible, No Good, Very Bad WEEK!
ugh! Ugh! Ugh! Ouch! Ugh! Ugh! Ouch! Sigh! Ouch! Ugh! Ugh! Ugh! Ouch! Sigh! Ouch! Ugh! Ugh! Bleh! Ouch! MuthaF*$#*!!!!!! Yea, I think that just about explains what is happening in my gut right now…or lack there of. Sorry guys! I know some might say, “Such language!”. Yea, well I…
Life As I Know It
It’s been weeks since you’ve heard from me. Mostly because it’s been weeks that I have functioned without some sort of challenge. Let’s see the last you heard from me I had received my first Remicade infusion treatment. That is when it all got rather…nutty, as Hippo would say. Within…