Category Archives: Amber Says

Where Do You Find Your "Normal?"

Where Do You Find Your “Normal?”

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The last thing my family did before going into quarantine at home was to go to the grocery store, of all places, to sell Girl Scout Cookies and fundraise for the Boy Scouts. We meet all kinds of people while fundraising at the grocery store, and this time was no different in that respect. However, there were some noticeable contrasts, as most people were keenly aware that we were facing changes to our everyday lives in response to the pandemic.

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New Year's Resolutions for People Living With IBD

New Year’s Resolutions for People Who Live With IBD

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With the turn of every new year, there’s a predictable pattern. People start making their  New Year’s Resolutions and plan to begin their new activities (or stop the old ones) at the turn of the year on January 1st. Many of the resolutions center around losing weight, eating better, stopping smoking, or exercising more. However, are these the things that people with inflammatory bowel disease (IBD) are most concerned with? Better health for those that live with Crohn’s disease or ulcerative colitis might include resolutions that go beyond the focus of what healthy people consider at the start of a new year. I have some suggestions for those that live with IBD who are looking to make resolutions for themselves this year.

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How I’m Learning to Be SMARTer About Managing My Health

How I’m Learning to Be SMARTer About Managing My Health

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I’ve never before considered contacting a health coach. I’m fortunate to have a robust support network and as an experienced patient, it seemed to me that perhaps a health coach wouldn’t have much to offer me. My mind was changed, however, when I got in contact with Pack Health.

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IBD Is a Marathon, Not a Sprint

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“Who wants an Oreo?”

A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”

“Probably,” says the man in the road.

“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”

I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.

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20 Years Later: The Matrix and My J-Pouch

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I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, just that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).

I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.

When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition and the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready.

(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)

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Consider These Points Before Sharing Your Story

Before You Share Your Story

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As people with inflammatory bowel disease (IBD), it is important that we share our stories. We need to share in order to bring awareness of our disease amongst the public but also to other people who live with the disease. IBD is isolating but there is a thriving community that’s willing to share information and support in order to prevent anyone from feeling alone in their disease.

However. I have concerns.
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Coming Clean About My IBD Mistakes

Coming Clean About My IBD Mistakes

I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed.
This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

When I was 16, I was diagnosed with a disease I’d never heard of called ulcerative colitis. Approximately 700,000 people in the United States are affected by ulcerative colitis – a chronic inflammatory bowel disease (IBD) characterized by inflammation of the large intestine (colon and rectum). It is not caused by food or a contagious disease. 

Those are the facts. Now, for the reality. Continue reading →

Vote In Real Elections

Vote In Real Elections, Not Online Ones

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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 →

5 Keys to Uncovering Poor IBD Information Online

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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 →

What Can’t You Do?

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Monsters are real

Recently, during an interview, I was asked to talk about what I couldn’t do because of my IBD or my j-pouch. I may have visibly bristled at the question, though I tried to mask this initial negative reaction. I did think about how to formulate an answer–probably for a good solid minute. In the end, I couldn’t come up with anything.

The interviewer made a few suggestions, but they were things that I don’t dwell on, such as dietary restrictions. Having some dietary restrictions is not something I think about often. I can absolutely still eat all kinds of healthy food as well as not so healthy, yet tasty, food like chocolate, and also have a cocktail. I no longer see food as an obstacle or a problem, because I’ve worked out my diet and I pretty much stick with what I know at this point. Therefore, this is not something I ruminate about or concern myself with too much.

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