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.
Thanks for reading!
September 13, 2013
The Upper Midwest Region chapter of the Arthritis Foundation is having its annual ARTHRITIS WALK tomorrow morning, and I’m excited to be taking photos of it again. I also decided at the last minute to join my friend’s team, The Young Adults, and participate as a walker and fundraiser in addition to taking photos. This walk is always a fun event and it’s inspiring to see how supportive people are of the arthritis cause — whether contributing donations, walking in the event, or just cheering others on.
Here is my personal fundraising page for the walk if you would like to support the walk and make a donation to the Arthritis Foundation:
Here’s the link for the home page of the event, which has a lot of general information about it:
Thank you so much!
August 28, 2013
A new RA website is officially launching TODAY – RheumatoidArthritis.net
It’s a cool site, full of information about rheumatoid arthritis for patients, families, spouses — everyone really! A great part of this site is there is a community of bloggers sharing their personal stories of living with RA. And the exciting thing is, I’m going to be one of their featured regular bloggers! So now in addition to blathering on about medical appointments and swollen joints on this blog, you can read my posts over at rheumatoidarthritis.net too. Whoo! Actually those will probably be a little more organized structurally. And maybe more well-thought-out. Although I do try to not sound like a blubbering idiot on here, too, I swear. Ha ha. In any case, I hope you like the new site and my blog posts.
So check it out! It’s a neat site and I think it will be a helpful resource and source of communication and community for people affected by RA.
May 2, 2013
I meant to post this last week but time got away from me, it seems. Funny thing, I received this “threatening” collections letter the day I had my last Remicade treatment – which is also the day I read a really fascinating Time magazine article titled, “Bitter Pill: Why Medical Bills are Killing Us” by Steven Brill. It’s from Time’s March 4, 2013 issue and I luckily found a copy at the clinic so I snatched it up to read while being hooked up to my Remicade I.V. for three hours. Good decision! Although after reading the article (and in the middle of reading it), I became so infuriated and upset, because much of what Brill writes about has affected my life in similar ways. Unfortunately you have to pay to read the article online, but it’s really worth it. Everyone should read it – especially if you go to the doctor often, have a lot of medical expenses, or have any kind of health condition.
The article profiles several different patients and tells their stories about how they racked up huge medical bills, mostly from hospital expenses. Whether a cancer patient, an ER patient for heartburn thought to be a heart attack (and a $21,000 bill for that), the recipient of an overpriced implanted medical device, or a patient injured from a simple fall, one thing is constant in all of these stories – everyone was drowning in thousands, even hundreds of thousands of dollars of medical bills. And the majority of the medical costs of these bills were grossly inflated and overpriced. Luckily I have managed to stay out of the hospital so far this year, but since January 1 I have accumulated a lot of medical debt due to doctor office visits, MRI and X-ray scans, prescription drugs, and expensive I.V. treatments for my RA. Let’s also add the bills for my psychologist appointments that I find necessary to help me stay sane trying to navigate all of this health crap on a daily basis. I feel like I’m going to the doctor all the time, even when I sometimes do cancel appointments (especially the therapy appointments) just to save money. Or I try to hold off on making appointments until after I’ve met my deductible and out-of-pocket maximum for the year. I’ve heard stories from many other people who also go without their medications, treatments, or doctor visits because they can’t afford it. This, I feel, is simply wrong. Nobody should have to sacrifice his or her health because of financial reasons. But the way our healthcare system is set up, that is exactly what patients are pressured to do if they can’t afford their medical bills. Go into massive debt? Declare bankruptcy? Lose your house? Risk your life? It’s such a racket, with your dollars lining the pockets of the CEOs and administrators of many health care and hospital systems – especially these so-called “nonprofit” hospitals that are actually making huge profits.
April 6, 2013
Where has the time gone?! Seriously. I’m sorry it’s taken me so long to post these JAM photos, but here you go! The annual Juvenile Arthritis March was held March 2, at the Mall of America, and it was a great success. It was the busiest I’ve ever seen it in the four years I’ve been photographing the event. And a record amount of money was raised this year – over $153,000! Anyway, here’s the link to the photos I took. Enjoy!
Two days after JAM, I went to Washington, D.C. for the Arthritis Foundation’s Advocacy Summit. Once again that was a fantastic, inspiring experience. I’ll write an update post about D.C. and the Summit soon!
(there’s still snow here, ugh)
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!