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
Posts filed in: Crohn’s
About that semi-colon tattoo…
This year, Mental Health Awareness month is May. And for a few years now, I have seen articles and blog posts about semi-colon tattoos pop up in my timeline. People get them to raise awareness for mental health and suicide awareness, because a semi-colon continues a sentence that would have ended otherwise. Usually the words “powerful” are somewhere to be found in the article. In my corner of the internet, that is IBD groups and Instagram, every year, people getRead more
My Quest with Quest, part II
You can read part I of my rant about Quest Diagnostics here. The next day, I had dog training, in Northwest Portland, then drove back to my house, dropped the dog off, and went back. Because 84 East is always busy, I decided to drive down Burnside street, which of course was full of construction, so that it took me 30 minutes to get to the lab (inside safeway) instead of 20. I get in, prepared to wait, as IRead more
Dentists…
I hate going to the dentist. Not because of the pain (not a fan of it, but it’s not awful), but because of the air of moral superiority I encounter every damn time. Through a miracle, I have had fairly good teeth throughout my life. No root canals, a few fillings, two wisdom teeth pulled. So I have been lucky. IBD can manifest orally as well: Mouth ulcers and swelling of the lips, often due to malabsorption of nutrients andRead 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
My 17 in 17 challenge
I have been going back to exercise classes after Thanksgiving. During my childhood and youth and well into my twenties, I hated any form of exercise with passion. One, I was shit at it, and very often just too sick to do anything. Second, German PE teachers are assholes. #notallgermanpeteachers you want to say? No, all of them. One of my favorite writers, Arnold Stadler once wrote that there were two types of PE teachers at his High school. ThoseRead more
Hey, FDA
Hey, FDA: I am tired of being infantilized as a patient. I am really tired. With the increasing number of people being addicted to painkillers and other drugs, you have decided, that it’s best to crack down, to make it harder to obtain these products, and to monitor emergency rooms. You’re overlooking that most opioid people addicted to opioids actually did not get them prescribed, but had them illegally- they stole from a friend etc. As Maia Szalavitz ofRead more
World IBD Day: In celebration of community
Throughout the day, I have posted about IBD, and IBD awareness- there are many blogs and foundations that provide support, education and connection among the IBD community. They give me ideas for blog posts, they give me feedback on blog posts, and while I am all about educating people about symptoms and treatments (and warn them of quacks), I think another aspect of the disease that often is underestimated is the loneliness that many people feel with it. And IRead 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
Insomnia- I can’t get no sleep
Deep in the bosom of the gentle night Is when I search for the light Pick up my pen and start to write I struggle, fight dark forces in the clear moon light Without fear, insomnia, I can’t get no sleep Me quoting Faithless lyrics of course shows my age and that I am a true child of the nineties. Oh well. Having insomnia however, is a (fairly) new one for me. You see, I can’t remember not having anemia,Read more
