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New Year, New Look

Just a quick hello and Happy New Year to you!

We've updated our blog layout to be a bit more interactive and hopefully easier to navigate.  If it's lousy or a PITA, please let us know.  Please also let us know if there are any topics you'd like for us to cover in the coming months and we'll do our bestest to make sure we write about them.  Here's a preview of some things we've been chewing on for 2014:
  • The doctor-patient relationship, including knowing when and how to fire your physician.
  • Medical marijuana, what it can help with, what it may harm, and what people think about it.
  • Complimentary & Alternative Medicine (aka CAM), including acupuncture, biofeedback, and herbal supplements.
  • Each month we'll highlight a rare chronic disease, give an overview and review research (if any) on social and emotional issues.
  • The impact chronic medical illness has on siblings.
  • Transitioning from pediatric to adult medical care.
  • An overview of different types of psychiatric medications and some of their "off-label" use to manage chronic medical conditions.
And much more....

We're also looking for guest bloggers to contribute to our little corner of the internet.  If you have an idea for a post that relates to chronic illness that we haven't covered before, please contact us at

Finally, here are our top 10 posts from 2013 by pageviews as of today:

  1. 20 Things to Try in 2014 
  2. Chronic Illness Catch 22
  3. A Day in the Life
  4. Navigating the World of IBD Diets
  5. The Role of Stress in IBD (Part 1)
  6. The Physical Weight of IBD
  7. Chronic Illness & Suicide
  8. Dating & Chronic Illness
  9. Emotion Focused Coping
  10. Workplace What The?

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The Long Shot

I don't even know where to begin as my head is still spinning with the news I received today.  So I'm just going to put it out into the ether:

Entyvio (vedolizumab), which I started for my Crohn's disease about 6 months ago, did what no other approach has:  cleared my eosinophilic esophagitis. 

But wait, isn't Entyvio a drug for inflammatory bowel disease?  Yes.

Is Eosinophilic Esophagitis a type of inflammatory bowel disease?  Nope.

Are IBD and EoE related at all?  As far as we know today, no.  There are very few overlapping cases.

So WTF happened?

Without getting into the biomechanics of a drug that's way over my pay grade in medical understanding, my gastroenterologist had a theory that the way Entyvio works would block the cascade of eosinophils (a part of your immune system, a type of white blood cell) through it's magical way of selectively keeping my immune system from attacking my digestive tract.

She was fucking right.

Since being diagnosed with EoE in ear…


I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

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Everyone Can Fall Down the Rabbit Hole

A few months ago my 3 year old son uttered the words, "I hate you, mommy."  It was after I yelled at him for doing something wrong, which I've long forgotten what exactly the source of our exchange was. But I certainly can remember those words. I can hear them in my head if my brain decides, at random moments, to replay them.

My intellectual, clinical psychologist brain can explain this for days. He's 3, he doesn't know what he's saying, he learned the word hate somewhere else, presumably at preschool, as I discourage its free use in our house. He's using it to express his anger not his true feelings toward me because once he self-regulates (psychobabble for calms the F down) he tells me he loves me.  Blah blah blah.

Regardless of all that knowledge and shit I have from too much education, those words destroy me emotionally.  Maybe they hit me harder because of my profession because my head goes to all the subsequent pathology he'll surely go on to de…