My 2019 Lists

It’s the last day of 2019. I thankfully was stable health-wise, so there isn’t much to share about my health year. I can share books, podcasts, and TV shows that I consumed though, in the hope that they may be entertaining to some of you. Books I’ve read (sometimes re-read) and enjoyed in 2019: “American Gods” by Neil Gaiman. I read this with students, and truly enjoyed it, especially the outside perspective on the US, from 20 years ago. “TheRead more

Twelve Days of Crohn’s-Mas

On the first day of Christmas my Crohn’s gave to me- An annual colonoscopy. On the second day of Christmas my Crohn’s gave to me, two rounds of steroids and a colonoscopy. On the third day of Christmas my Crohn’s gave to me, Three bloody stools, two rounds of steroids and an annual colonoscopy. On the fourth day of Christmas my Crohn’s gave to me- Four referrals to other doctors, three bloody stools, two rounds of steroids and an annoying,Read more

Am I Disabled? On Chronic Illness, Disability, Self-Identification & Internalized Ableism

Originally posted on Chronic Illness, Coping & Critiques:
The relationship between chronic illness and disability – including critical disability studies & the disability justice movement – is something I have actively been trying to understand for years, as my illness has continued to reshape my life. Invisible illness is a strange and alienating thing, and it has been a confusing process. Part of my confusion stems from the fact that there isn’t a consensus within the field of Disability Studies itself. There…

If you wear sweatpants, you’ve lost control over your life- or have you?

  Karl Lagerfeld died on February 19. A controversial figure when he was alive, the obituaries were equally divided. From a twitter feud between Jameela Jamil and Cara Delevigne, to how should we deal with horrible geniuses (I say you bury the concept of the genius, but that’s just me). For me, most important was: “what will happen to Choupette Lagerfeld?” and “who will inherit the bookstore that he bought for himself?” To me, the cat and the bookstore areRead more

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

Update: Same procedure as every year

Friday, I had my annual colonoscopy. This year, I tweaked my prep a little bit. I splurged, and got lobster broth, as well as clear protein drinks. The broth I would get again, the drinks just made me queasy. But, it was worth a try. As usual, I over prepared, so by the time I arrived, I had a raging dehydration headache. I also asked for three warm blankets as I was waiting on my gurney- it was sooo cold.Read more

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

Nurses Appreciation Week: Thank you

  This week (May 6th to May 12th) is Nurses Appreciation Week. I am always torn about xx Profession appreciation week. The cynic in me says that if we paid teachers and nurses and caregivers better, we would truly show our appreciation as a society. But, we can still show our appreciation on a personal level. One way is to vote in local elections, and look at the candidates- what do they say about health and care givers? Is itRead more