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Showing posts from December, 2013

20 Things To Try in 2014

2014 is upon us. Out with the old, in with the new. We've entered the time of year where people reflect on the past year and look ahead to new beginnings.  Resolutions are made, some of which are kept while others fall by the wayside because, as we all know, old habits die hard.  I'll be turning 38 tomorrow (wait, what?) and I can say a lot has changed in my life since I was 26 and diagnosed with my chronic illness.  I'd like to say I've grown wiser in the past 11+ years, and not because I went to graduate school, but because of the life lessons that living with Crohn's has taught me.  With that, here are 20 things all of us living with chronic illnesses should strive for in the new year:

1.  If you haven't accepted your diagnosis, work towards that.  It's one of the most freeing things a person with a chronic illness can do.

2.  Connect with people who get it, whether it's online, at meetups, or in a support group. They don't necessarily have to ha…

The Physical Weight of IBD

Weight no more...I finally am writing a blog entry on the physical weight of IBD. I had mentioned it in an earlier post and was reminded of this topic by a brilliant entry by Christina at The Crohn's Diaries and a video by our friends at the Great Bowel Movement called the Weight of IBD.

In a culture obsessed with appearances, what's a patient to do? When diagnosed with a chronic illness, patients young and old want to know, "Am I going to look different?" The answer with IBD is usually yes, at least at times. The classic example is when a patient is on Prednisone. You want to see weight gain?! You want to see water retention?! In regards to appearance, these powerful steroids can fluctuate weight significantly, as well as create the moon face phenomenon. I liked to call it "chipmunk cheeks" and this was something I personally endured for about a year in college. Literally every day I would get asked, "Did you just get your wisdom teeth out?" By t…

Chronic Illness Catch-22

One of my favorite books I read in college was Joseph Heller's Catch 22, a satire about World War II pilots who find themselves in a really challenging situation, whose title has made it into the English vernacular.  To find oneself in a "Catch 22" is to be in a no-win situation, a double bind, you're-damned-if-you-do-you're-damned-if-you-don't if you will.

I was meeting with a client recently and the topic of normal test results came up.  What do normal test results mean to people living with a chronic illness?  They should be good news, right?  We talked about how she didn't feel just happy or relieved, but was also kind of angry about it.  To the person not in these shoes, being angry about normal test results seems really counter-intuitive.

There was this split in her emotional reaction:  I'm happy but I'm irritated.  Part of her wanted the results to be off, just a little.

Even though that would be bad news in terms of her disease, and she…

HIV, Stigma & Mental Health

With the passing of Nelson Mandela, the world's attention has turned to South Africa and the important work he did to fight apartheid and inequality.  Mr. Mandela also worked tirelessly to reverse the catastrophic effects of rampant HIV infection among South Africans.  Up to 20% of women of reproductive age are HIV positive there, and overall estimates put 11% of the population infected.  Those rates are staggering compared to the rest of the world - here in the U.S. HIV prevalence is estimated at 0.4% and European rates are around 0.3%.

Thankfully, anti-viral medications like HAART have changed HIV from a death sentence to a chronic condition that, with proper treatment, many people are able to live with for decades. Because I'm old, I remember when AIDS first appeared in the early 1980s in the mainstream consciousness, including watching the story of Ryan White unfold up until he died at the young age of 18.  People were afraid and HIV stigma was rampant.

Simply getting dia…