Looking for lost time…

I wish there was a way to keep track of the time we spend dealing with health. Even when I am doing well, as I am at the moment, it still takes time. Time that I don’t really have. Example: My doctor wanted me to have my remicade levels tested. A simple blood test, done about a week before your remicade appointment. So I ask whether I just go downstairs to their lab. No. Because this specific test has beenRead more

Remicade Protocol #237472

It was Remi-Day on Monday. Praise the lawd I guess, because I sure had flare symptoms. I didn’t sleep well and thought I could take care of that at the practice. But no, this didn’t happen because they must have booked several people at once. So as I get my chair, I overhear that Travis’ ex got engaged, only a year after their break up (tut tut), I hear another man describing his golf adventure in painful detail, and IRead more

Medication TV Commercials

I remember the very first time I saw a commercial for Remicade on TV in 2004. I was shocked. In Germany (and most other western countries), only over the counter products can get advertised on TV. So, I was familiar with Aspirin commercials, or cough syrup. But Remicade? I didn’t have TV for a long time, so I haven’t paid attention much, but recently, it was discussed in a bunch of forums and it got me watching, and thinking. MyRead more

Remicade Protocol 4859

Monday was Remi day- I had it scheduled around my upcoming South Africa trip (you want to have it in advance but not the day before). I usually take the first appointment in the morning, because I hate waiting. It was 7.30 am sharp as I walked up to the counter, only to be reprimanded by the guy behind it. Apparently check-in time was 20 minutes early. I gave him a sharp and nasty look, and said, “nobody is hereRead more

It’s Tuesday, and I am tired…

Even though I am a lapsed, non-practicing Catholic, there are certain ways that this belief system has shaped the way I think. I associate my grandfather with Catholicism, and how his fierce beliefs in justice often brought him pretty close to liberation theology. The whole flipping tables and whipping people thing that Jesus did? Tots okay in my grandpa’s book. If there was an injustice, he called it out, and it was a way to articulate his catholic identity toRead 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

The Mountain Calls- a Remission Story

“The mountain calls”- “der Berg ruft” is a common saying in Southern Germany, Austria and Switzerland, that is, everywhere we have mountains. It derives from the famous 1937 movie of the same title, by the unforgettable Luis Trenker (yes, this was before he had his own clothes line). It’s about the first person climbing the Matterhorn. I’ll save you an essay about Mountain films. When I was in the hospital this January, I was on ward 10 B, I hadRead 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

Making Pacts with the Devil- an update on me

When people ask me what it’s like living with a chronic disease, I sometimes say that it’s like making a pact with the devil. Let me elaborate: The best known pact with the devil in literature is probably Goethe’s Faust (ok, maybe Christopher Marlowe too!). Faust, the protagonist, has a terrible problem: He’s educated, good looking, no shortage of money, generally in a good place, but no, Faust is super unhappy. He wants to know more! He wants to doRead more