April 24, 2015
Good news! My blog was named as one of Healthline‘s Best Rheumatoid Arthritis Blogs of 2015. I’m slide #4 on the list: http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs#4
Thank you so much to everyone who reads my blog and supports me and what I do! I’m forever grateful for the wonderful friends I’ve met through my little blog and for being part of the online RA and patient advocacy communities.
April 20, 2015
I just attended an incredible conference in Jersey City, NJ comprised of health bloggers and advocates from all over the country, who all suffer from different chronic diseases. Wow! What a weekend! I’m sad it’s over, but so happy to have been a part of it. I have a lot of blogging and photo updating to do from this weekend (and in general), and I will post more here ASAP about the conference. I just want to write a little something right now before I head to my next adventure….which is MOVING TO BROOKLYN, NEW YORK! Yikes! More on that soon, too.
If you’re interested, you can look up #HealtheVoices15 on Twitter for lots of photos and posts about the conference. Health advocates coming together with experience that spans across MANY diseases and conditions is a pretty powerful thing.
December 5, 2014
So I’ve been recently thinking about the idea of starting my own RA/arthritis/health podcast. I already volunteer at an awesome community radio station in Minneapolis, KFAI, and I have a passion for radio, storytelling, journalism, and spreading arthritis awareness.
Would you guys listen? Would anybody listen? Could I do it and not sound like a total moron? Let me know your thoughts, please!
December 2, 2014
Here’s an article I wrote for RheumatoidArthritis.net recently about the change in federal regulations regarding certain pain medications. I’m not very happy about these changes, to put it mildly. It’s now even more difficult for people with chronic pain to get the relief they need. Luckily I live in a state right now where I’m not required to go to the doctor for an office visit just to get a handwritten prescription from him (and therefore charged $200+ for the office visit). A couple of new friends I met in New York and New Jersey over the last two weeks have to deal with this. It’s ridiculous and discriminatory, in my opinion. Something needs to be done! Nobody should have to be in pain in the first place. Nor should anyone be forced to suffer additional pain because of government laws that hurt patients instead of helping them.
January 30, 2014
I’m a girl you can’t shut up! –said musician/artist/Riot Girrrl/feminist/activist Kathleen Hanna. And I’m really glad that she doesn’t shut up. I recently wrote a blog post for RheumatoidArthritis.net about a wonderful documentary I saw last month called The Punk Singer (2013), which is about Kathleen and her contributions to feminism, the riot girrrl movement, music, and the world in general–as a creative and empowered woman. You should definitely check it out; it’s not out on DVD yet (March, I think), but it’s still showing in some cinemas. The documentary also reveals Kathleen’s struggles with a serious, chronic illness, which came as a surprise to me.
Here’s my blog post regarding my thoughts about the documentary, Kathleen Hanna, and my own passion for becoming involved with advocacy work:
I hope you like it! And again, please see The Punk Singer if you can. It’s great.
January 26, 2013
It’s official – I’m going to D.C. again for the Arthritis Foundation’s annual Advocacy Summit! The Summit this year is March 4-6th and I can’t wait. I registered for it yesterday – the last day to get the “early bird” discount. Hopefully I can get a travel stipend again like last year, because my financial situation is even more dire than a year ago (is that possible?). But being a part of the Summit is really important to me, especially since last year was such a positive, incredible experience. I’m going to contact some people at the Arthritis Foundation who are involved with the event to see if I could also photograph and write about the Summit in some sort of official volunteer way. I’d love to do something like that in addition to being one of the delegates.
Here’s a photo from last year’s Summit of Emily, part of our Minnesota group, reading a letter she wrote for Representative Keith Ellison (I think), sharing her story of living with arthritis.
And here’s a photo of Emily again, along with two other awesome kids (Sammi and Ali) who were part of our Minnesota group. I met and got to know so many nice people last year at the Summit – can’t wait to do it again!