Tag Archives: awareness

About IBD Podcast 23

About IBD Podcast 23 – I Have Power With Megan Johnson

How can we help new ostomates better adjust to their stoma? Megan Johnson, who you might better know as The Front Butt YouTuber, had a unique journey on the way to becoming a permanent ileostomate due to Crohn’s disease. Her experiences with the abysmal patient education material in the hospital after ostomy surgery sparked her desire to make accessible content that helps people adjust after surgery and “be comfortable in their own skin.”

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Vote In Real Elections

Vote In Real Elections, Not Online Ones

You’ve seen the posts: “Click like” or “Retweet” to vote! An interaction with a post is a “vote” and after a certain amount of time the “votes” are tallied and a winner is declared. Magazines may use this type of crowdsourcing to decide their “best restaurants” or a photography web site may use it to choose a “cutest baby” photo.

I’ve been online, running web sites for myself and for others, since 1996 and this type of popularity contest is nothing new. It’s never going to go away because it’s inherent in our culture. It might be something we have to accept, up to a point. However, I take issue with using this type of “voting” for where we are now: choosing a “best” person from the online chronic illness community. Continue reading

About IBD Podcast Episode 10 With Brooke Abbott

About IBD Podcast 10 – Advocacy With Brooke Abbott

Are you ready to tell your story? Your legislators in Washington D.C., in your state, and your home town want to hear from you about how IBD has affected your life and the legislation you care about. Brooke Abbott of The Crazy Creole Mommy Chronicles and Amber tell you how to get started in health activism and how to make your voice heard in our government!
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World IBD Day Isn't For You

Why World IBD Day Isn’t For You

If you have inflammatory bowel disease (IBD), or you love someone who does, you don’t need an awareness day to tell you the impact it has on your daily life. People living with Crohn’s disease or ulcerative colitis and their caregivers already have a vast education on IBD that can only be gained through experience. World IBD Day isn’t really for you.

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You Get Tired With Shawntel Bethea and Brooke Abbott

Episode 21 – You Get Tired With Shawntel Bethea and Brooke Abbott

The healthcare space isn’t a level playing field. Minority populations face complex challenges when it comes to accessing and receiving care, which is why April is designated as National Minority Health Month. In regards to inflammatory bowel disease, it’s not well known that Crohn’s disease and ulcerative colitis also affect minorities. Shawntel Bethea of Chronically Strong and Brooke Abbott of The Crazy Creole Mommy Chronicles discuss how they’ve been affected by healthcare disparity and offer concrete ideas on what can be done to start addressing healthcare gaps in their communities.

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It's OK If You Haven't Found Your Voice Yet

It’s OK If You Haven’t Found Your Voice Yet

When I still had my colon, I was at the pharmacy on a regular basis. Like most people with IBD (ulcerative colitis, specifically), I was always taking several medications in an effort to keep the inflammation down. I also usually needed over-the-counter things as well — witch hazel and wipes and antacids.

Once when I was in my mid-twenties, the young man behind the pharmacy counter tried to talk to me about my prescriptions. He then questioned my use of that particular location of the pharmacy.

“You know,” he said to me, “there’s a store in [town that I lived in] that’s closer to you.”

We have slang now to describe what this man was doing to me. He was mansplaining it to me. For some reason he thought he knew better. Continue reading

5 Keys to Uncovering Poor IBD Information Online

Just as not all healthcare professionals provide the same level of care, not all health websites are equally trustworthy. Most people know by now not to believe everything published on the Internet. However, it can be difficult at times to determine whether or not a health website is giving out accurate and credible information. In the journey to learn more about inflammatory bowel disease (IBD), it is vital to use critical thinking and become a savvy information consumer, as these skills will help in sifting through websites to find the ones that can be trusted.

How can anyone tell the difference between an IBD website that is worth coming back to and one that should be passed over? There are several different clues that help in understanding if the author of a website or an article is providing quality information that is useful in understanding IBD and in coping with the challenges of Crohn’s disease, ulcerative colitis, or indeterminate colitis. Continue reading

About IBD Podcast 1 – Let’s Talk About That Fungus Thing

The first edition of my About IBD Podcast where I talk about this fungus fracas, how it relates to IBD, and why I’m not too worked up about IBD research done on mice.

Music:
Happy Rock – Bensound.com – http://www.bensound.com/royalty-free-music

 

What It Means To Be #IBDvisible

Puzzle

Is there always a piece of you that’s missing? Maybe a piece of information that you leave out when you meet new people. Do you keep your IBD secret because you might open yourself to problems at school or work?
Image © Pawe³ Windys http://www.freeimages.com/photographer/windys-39131

People sometimes tell me, “Oh, I’ve read your blog.” It’s often said almost sheepishly, as though it were something that were slightly distasteful or embarrassing. It does seem to take a little courage for people to tell me this, which also leads me to believe for every person who tells me this, there are others who are reading and yet never say anything.

For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
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My Spectacular Advocacy Fail

Do you ever feel like the one that sticks out? I do, frequently. I've done my best to make the most of bad situations, but when it's my child that is the one who "sticks out," I don't always react in the most rational, thought-out way.

Do you ever feel like the on that sticks out? I do, frequently. I’ve done my best to make the most of bad situations, but when it’s my child that is the one who “sticks out,” I don’t always react in the most rational, thought-out way.

A man approached me at an event, not an IBD-related one, and asked me what everyone was doing. The event was a walk at a local beach and it happened to be for food allergy awareness.

“This is a walk to raise funds and awareness of food allergy.”

“That’s strange,” he said to me, and made a face of disbelief.

“Why is that strange?” I said.

“Because you think it would be cancer or Alzheimer’s or something.” Continue reading