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

WHAT’S IN MY BAG: Protest Edition

This saturday, March 24, I went to the March for our lives. I had been back and forth about going, because quite honestly, I don’t like crowds, I was worried about violence, I worried about restrooms… Then, I pushed myself, and I am glad I went. I can assure you that standing outside in Portland in March is fun, but I was in great company- my neighbor and her sweet, sweet daughter came too.  Also, it was the first timeRead more

Here’s why people who “don’t look sick” use the disabled toilets

  This one is for the bathroom police, that is, those who feel compelled to tell others that they can’t use the disabled stalls, because they don’t deem them disabled. One would think in the year 2018 and with 117 Million Americans suffering from a chronic disease, this shouldn’t happen anymore, but it happens. All the time. It has happened to me (and ended badly for the other person), it has happened to friends of mine, and while I don’tRead more

Dear Public Restrooms….

I wish… …you were clean, all the time. I would happily pay a quarter every time just to have that assurance. I am not even asking for a self-cleaning toilet.  Alas, I am taking clorox wipes with me wherever I go. … stalls were sound and smell proof. Seriously, what is this metal wall in between business? It’s bad enough for me to know that I can make these sounds, does the world need to know? …if you don’t haveRead 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

Spoonie Essentials Box 1: My Review

I already told you about the Spoonie Essentials Box, and lo and behold, my first box arrived yesterday!   Check out the color combo and the fonts! Uplifting and dynamic, looking like handwriting, yet professional! (that was the geek in me speaking!) I got the Small box, and here’s what was in it: A super sweet note on the importance of self- care  a heart shaped bath bomb a spoonie necklace a pair of xo socks bag of candy aRead 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

Favorites: scar-care

Disclaimer: I am not being paid by anyone to review these products. I take skincare very, very seriously. Around 6% of IBD sufferers may actually have eczema as a symptom, and with all the meds we are taking, our skin can go through some changes, Azathioprine for example, makes your skin extremely light sensitive. So, be careful, wear your SPF, and always read ingredient lists on your products. I try to avoid anything with mineral oil in it- for ethicalRead more

Word Warrior Wednesday, post election blues

Yesterday began with a lot of hope, and ended in tears. Lots of them. And lots of vodka. To me, it would have meant a lot to have both of my home countries led by women. Moreover, not have one of my home countries make the same mistake that my other home country made eighty years ago. Last night, I was afraid for my future and others’. I am an immigrant, and I am female. Just like any woman, IRead 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