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“Wow,” was the first word that came to my mind when I started to exercise with Jeannie Di Bon’s new program: The Zebra Club. My feelings regarding Jeannie’s new app were very similar to when I read Diana Jovin’s book Disjointed, which I recently reviewed as well. However, I wouldn’t be much of a journalist […]
Speech at my film screening @ Chapman University Interviews Podcast with Linda Bluestein and EDS Awareness https://www.chronicpainpartners.com/webinar/we-are-visible-podcast/ Volunteer Work Newsletter for Chronic Pain Partners
The holidays are around the corner, and soon, we all will be ordering presents for our healthy or chronically ill friends and family. I don’t know how you feel about this, but I always have a hard time finding the right gift. Luckily, there are a lot of great gift guides online, and I, personally, […]
Can you believe that the year is almost over? Again? I feel like since the pandemic started, time has flown but also stood still at the same time. Unlike 2020 – we can all agree that 2020 should just be canceled entirely, right? – I have mixed feelings about this year. Yes, the pandemic made […]
My back hurts, sitting in an uncomfortable grey metal chair with red and white tape next to me, so nobody can sit down right beside me. I stare at the white wall that features a giraffe and a leopard – at least I think it’s a leopard, but I don’t know much about wild cats. […]
“Wow, I feel like my condition has stabilized a bit. Finally, I can take part in regular life again!” I thought a few weeks ago. Life has been challenging throughout 2020. Actually, challenging isn’t even the right word. It has been a major disaster. When the pandemic started, a lot of past trauma that I […]
Ehlers-Dan… What? Most people – and sometimes even medical professionals – do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness. I feel like this can only be changed by actively and publicly talking about EDS as […]
It is not easy to live with a chronic condition. All of a sudden, your whole life changes, and nothing is like it used to be. You fall into a big hole that does not seem to have a bottom, and it is challenging to get out of it again. However, with time, you learn […]
I recently had the pleasure of interviewing actress and advocate Jameela Jamil for ABILITY Magazine. Jameela Jamil is an advocate for social justice, body neutrality, LGBTQ rights, and for a while now, she has also been using her public platforms to speak out about her life with Ehlers-Danlos syndrome and many comorbid conditions. In our interview, […]
John, the CEO of EDS Awareness and a dear friend of mine, asked me to send out this new newsletter once a month. It will include useful information about all things EDS: resources, important events, articles and more. I plan to make this a place for every one of us to connect and hope to share some […]
Only two years ago, I would have never considered therapy. Well, I guess life changes, and even my stubborn self can change her mind. Up until today, I have a bit of a love-hate relationship with therapy, but I feel it changed my life for the better, and I don’t only see my therapist when […]
This is a letter I wrote to myself right after getting diagnosed with EDS in 2014. It’s all the things I would have needed to hear from doctors, friends and family. And it’s also advice I gave myself. It was published by The Mighty in 2016. Maybe this text can help you if you are […]
