Category Archives: Amber Says

In a Pandemic, Every Decision Is Complicated

In a Pandemic, Every Decision Is Complicated

As of this writing, for the past two months, I have not been to a pharmacy or a grocery store. I have used a delivery service. I, like many other people who live with inflammatory bowel disease (IBD), am immunocompromised because of the medication I receive. I am now reliant on other people to obtain the things we need for our household, but it’s unclear to me if this is the right decision.

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About IBD - How to Green Your IBD

How to “Green” Your IBD

The impact of human activities on the environment is well-documented. Many people are concerned about how their daily lives can have a negative effect on the air we breathe, the water we drink, and the health of ourselves and of our children. My background is in environmental science: it began in high school when I worked to institute a recycling program in the lunchroom. I went on to earn my Bachelor of Science in Environmental Science from Michigan State University.

While there’s nothing we can do about having inflammatory bowel disease (IBD), there is something we can do about how it impacts our environment. Crohn’s disease and ulcerative colitis need treatment over a lifetime and this comes with a variety of choices. Environmental responsibility may be pretty far down on the list of things most people with IBD are concerned about, but there are some simple choices we can make that can have an impact.

The place were we have a lot of control as patients is in our own home and in how we manage our disease (alongside our healthcare teams). A few little changes can make a positive impact in how your IBD affects the word around you. I present some areas where we can think about making choices in regards to our IBD that may help us leave a smaller footprint.

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Where Do You Find Your "Normal?"

Where Do You Find Your “Normal?”

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

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

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

“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

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

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

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