Category Archives: Amber Says

About IBD - This Is My Superpower

This Is My Superpower

Contained below are mild spoilers for the Season 2, Episode 4 episode of Farscape, “Crackers Don’t Matter.”

In 1999, my husband and I came home to his parents house after a night out. We found my mother in law watching the Sci-Fi Channel, as she often did in those days. The show that was on was Farscape. It was everything that the other sci-fi shows of the era were not. It was intelligent, bright, messy, sexy, funny, and relatable. I immediately fell in love with it.

The premise of the show is that John Crichton, astronaut, is testing his ship, called a “module,” in low Earth orbit, when he’s catapulted out of the galaxy through a wormhole. He winds up in deep space, immediately pisses off a high-ranking military officer, falls in with some escaped prisoners, and is off on an adventure.

Oh, and there’s no way to get home because nobody knows where Earth is located.

Continue reading
Alien: How IBD Inspired an Iconic Movie

Alien: How IBD Inspired an Iconic Movie

Spoilers for Alien are included in this post. If you haven’t seen it, go watch it and come back. It was released in 1979, but I promise it holds up.

What any individual person takes from a piece of art is shaped by their views and experiences. Two people can read the same book, see the same movie, or view the same sculpture and take different inspiration from it. This can be true even when the intent of the artist is fairly clear, because we all view art through our own unique lens.

That being said: Alien is a horror movie. I’ll tell you why.

Continue reading
About IBD - The Power In Your IBD Story

The Power In Your IBD Story

When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.

I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.

It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.

Continue reading

Climbing the Steps to Pandemic Recovery

I remember looking down at my abdomen shortly after having the first of two surgeries to complete the j-pouch procedure for treating ulcerative colitis. It was open surgery, so I had a line of staples closing the surgical site that was about 8 inches long. I spent most of those first weeks with a pillow clutched against my abdomen because it felt like my guts were going to fall out. I couldn’t imagine how I would ever complete a simple sit-up again.

Yet, I did recover. I can do the things that seemed beyond reach in those first days and weeks, but it didn’t happen right away or without effort. As the country becomes vaccinated against COVID-19 and we consider next steps, I am reminded of that feeling of having no idea how I would ever be whole again. Restarting a face-to-face life is off in the distance: hazy to the point of being unrecognizable. I’m struck by the similarities between resuming life after surgery and resuming life after a pandemic. They happen slowly, with the individual steps being so small they are almost imperceptible.

Continue reading
Why the Patient Protection and Affordable Care Act (ACA) Made Me Cry

Why the Patient Protection and Affordable Care Act (ACA) Made Me Cry

I remember the first article I wrote about the Patient Protection and Affordable Care Act (ACA). It was in 2010.

During my research, I saw that part of the legislation was that “pre-existing conditions” could no longer be used to deny insurance coverage, starting in 2014.

The implications were so personal and important to me that I cried.

Continue reading
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.

Continue reading
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.

Continue reading
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.

Continue reading
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.

Continue reading
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.

Continue reading