New Year’s Resolutions for People with Chronic Illnesses

If you’re anything like us, you probably spent a good chunk of 2018 dealing with your chronic illness, adjusting to new developments and learning from the hard knocks along the way. We’re not big believers in New Year’s resolutions, but we like to make lists and bring visibility to chronic illness, especially of the invisible variety. These New Year’s resolutions are an accumulation of some insights and hopes for the new year. We know that different conditions require different handling and that not all of these resolutions will work for everyone. We all have different experiences and life situations and that’s cool! But we want to share these resolutions to show solidarity, help allies support friends and family and let others with chronic illness know: you’re not alone.Read more

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Online Groups- the double-edged sword?

When I grew up in the 1980’s, I was the only one with Crohn’s far and wide. It was not a very common disease for children (or it was not diagnosed very often, who knows?). The internet wasn’t around yet. The German DCCV e.V was around, but at the time only through print publication, and again, mostly for grown-ups. And while I did indeed feel lonely at times, I can see the good in this too- I was simply forcedRead more

Word Warrior Wednesday: Cheryl Strayed

Today’s words of Wisdom are from Local Treasure and poet Cheryl Stray. You may know her marvelous memoir “Wild” or have seen the movie (also great!). She has also written “Tiny Beautiful Things”- a compilation of her advice columns on “Dear Sugar”. Her Newest is called “Brave Enough” and it’s a collection of little words of wisdom, quotes to “guide, motivate, validate, challenge and comfort us in our own lives”. here it is:Read more

Word Warrior Wednesday

This is another one of my Mississippi Street Fair pics, you can see the artist in the right corner! I love Marcus Aurelius, the philosopher king (actually Emperor). He is a stoic, and his work is mostly about the philosophy of service and duty, describing how to find and preserve equanimity in the midst of conflict by following nature as a source of guidance and inspiration. Lee always says I would be the worst spy in the world, because myRead more

How does your garden grow? (Self-care)

My friend Harriett and her fencing coach have a lovely expression when people ask them why they fence:” keeping the crazy howler monkeys in your head at bay.” I’ve heard “fighting your demons”, “being mindful”, “the mind-body balance”- call it what you want, but everybody needs something for themselves. I prefer self-care. Some people are crazy about the coloring books for grown ups, others do Yoga, Meditation- what have you. You need to have something that reminds you of yourself,Read more

Microaggressions and IBD

“Crohn’s? Oh, that’s ok to have, it’s treatable.” “So and so has had kidney problems, you just have a dicky tummy” “You can’t feel that bad, if you are still wearing make-up” “But, you are so young! Isn’t RA only for grannies?” “You got a PhD and you have Crohn’s?” “But you look so good” If you suffer from IBD, these utterances probably sound familiar in one way or another. I will go ahead and call them microaggressions. The termRead more

I’m in remission (whatever that means…)- a guest post

I am welcoming my first guest blogger, Mark McNamara! Mark has had Crohn’s disease for 22 years. Originally from Colorado, he currently lives in Portland, OR. With the support of the Crohn’s and Colitis Foundation of America, Mark facilitates a support group in Portland for patients with IBD. Mark works for the Oregon Health & Science University and enjoys hiking and stand up paddle boarding. I’m in remission (whatever that means…) I’m in remission, whatever that means. It’s been fourRead more

Travelling with IBD II – Carry- on and outfits

 You booked your flight, you have planned your trip, you’ve packed your suitcase. Now for your carry-on. What: I prefer a backpack and a purse, small enough that I can put it in the backpack if necessary. I have never understood people with trolley’s for carry-on (exception, people with kids). What in the world is in there?! Most people with IBD suffer from back pain, often mild arthritis etc. So do your backpack research!  About six years ago, I investedRead more

Travelling with IBD- Tips to make the journey smoother I

I haven’t written much, life has been hectic, and, I was visiting my family in ze fatherland. I have been back and forth between Europe and the US since 2004, and I have traveled extensively within the US.  Here are a few things picked up along the way. The Planning phase: Talk to your doctor: No matter how well you may feel, no matter how great your blood work looks like, make sure your doctor is on board (pardon theRead more

I heart colonoscopies- Tips and advice

There is no way around it: Colonoscopies are important. Even if you are not a Crohnie, don’t smoke, don’t have a family history of colon cancers, if you are older than fifty, you should have one every five years. A 2013 study in the New England Journal of Medicine found out that you can lower your risk of developing colo-rectal cancer by 40% through colonoscopies. How? Cancer doesn’t come overnight, and pre-cancerous cells or polyps can be found via colonoscopies.Read more