Jingle Bell Run/Walk

November 23, 2015


I just finished editing and posting the photos I took at last weekend’s “Jingle Bell Run/Walk” which was put on by the Arthritis Foundation’s Upper Midwest Chapter. It was fun seeing all of the people decked out in their crazy Christmas/holiday outfits. It was also great to see such a big turnout.

Here’s a link to the album on Flickr if you would like to see more photos:

2015 Jingle Bell Run/Walk: St. Paul, MN

And, here are a few more of my favorites:







July 28, 2015

My new RA Facebook page, “Inflamed: Living with Rheumatoid Arthritis,” has 99 “likes” now, which is exciting. But come on, people! JUST ONE MORE TO REACH 100!

ONE more…anybody? :)

Juvenile Arthritis March, 3/7/15, Bloomington, MN

Bloomington, MN, March 7, 2015

I finally finished editing the photos I took at The Walk to Cure Juvenile Arthritis a couple weekends ago. The event is an annual 5k walk that brings out tons of people to raise money to help find a cure for Juvenile Arthritis and support the kids and families who live with the disease. This was my fifth year photographing the walk for my local Arthritis Foundation chapter, and as always, it was great to see all of the people who participated in the event and to be surrounded by so many people who are dedicated to and passionate about arthritis advocacy.

Here’s a link to the photos if you’re interested:

Walk to Cure Juvenile Arthritis 2015

I, myself, was diagnosed with RA when I was 18 (although I started having symptoms at age 17), so I was on the cusp of juvenile vs adult rheumatoid arthritis. My pediatrician gave me a preliminary diagnosis and immediately sent me to see an adult rheumatologist who I stayed with for the next 10 years. During the end of my teen years and into my 20s, I lived a very isolated and lonely life regarding my RA. I didn’t know any other teenagers or college-age people with the disease and spent these young years battling the physical and emotional pain essentially alone. To say it was hard would be a big understatement.

Volunteering at the walk this year, like the previous years, it made me feel happy to see all of these young people and their families coming together to support each other, and to nurture the friendships and relationships they’ve made over the years, as well as forming new ones. It breaks my heart to think of little kids having to deal with the intense, debilitating pain of RA, but I do feel better knowing that many of them are not alone.

Could I do a podcast?!

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!


May 31, 2013


The Pfizer summit today was really excellent – professional, well-organized, interesting, FUN! It was exciting and inspiring having the chance to meet and talk with other bloggers as well as the people from Pfizer and Twist Marketing. Everyone has been so warm and welcoming and just really a pleasure to talk to and work with during this event. I’m impressed. This is obviously not a very long or detailed update, but I wanted to write something quick before I fall into a sleep coma (exhausted). I just got back to my hotel after taking a little stroll around Times Square tonight with two awesome young women bloggers from the summit. They’re both flying back home tomorrow which I’m bummed out about, but hopefully we will keep in touch and we can meet up again soon. I happily have a feeling that there’s a pretty good chance of that. SO –breakfast with the ladies tomorrow morning…maybe the MoMA with Britt, AKA The Hurt Blogger? I’m kind of just “winging it” while I’m out here, but that’s okay, and actually pretty fun.

More soon – I promise!



Hello from NYC!
This is just a quick first post because I’m running late (as always). I arrived here yesterday for a rheumatoid arthritis blogging/social media summit organized by Pfizer. Today is the actual event (in five minutes!) and we’ll be heading over to Pfizer’s headquarters. Last night we had a really nice dinner and I got to meet some of the other people who are here for the summit – a group of fantastic ladies! I’m excited to talk with them again today and to hear more of their own arthritis stories and what they’re doing regarding arthritis advocacy and social media outreach.

So – now I have four minutes to run downstairs at my hotel to meet the group. Better go! I will definitely post again later today/tonight. If I don’t die from heat/sweat stroke. 90+ degrees again today?

I still can’t believe I’m finally here, seeing New York City for the first time.



Summit recap

April 30, 2012

Ali, age 8, Washington, D.C.

Apologies for taking a while to post again, but I’m dealing with an RA flare-up now – my right thumb and forefinger joints are painful and swollen from yard work I did last week. I know I shouldn’t have been raking and pulling weeds, etc., but I was working for a friend who agreed to pay me to clean up his yard. As I am currently unemployed, well, I needed the money. But in retrospect I wouldn’t have done it if I had known my hand was going to flare up. I have a rheumatologist appointment tomorrow and I’m hoping he can give me a cortisone injection to make this go away. I’ve been taking 20 mg of prednisone for weeks and I’m pretty desperate to get off of it.

Anyway, onto the Summit news! I can’t stress enough how glad I am that I decided to attend The Arthritis Foundation’s Advocacy Summit in D.C. The event was incredibly organized and professional which I found impressive. It was also exciting and empowering just to be with people who were all passionate about improving the lives of those who suffer from arthritis. I met so many nice, interesting people who either have arthritis themselves or have children who have the disease. I loved talking with many of them and hearing their own stories. The Summit also ignited much more of an interest and passion in me to continue doing advocacy work. Actually, I think I would really like to move to D.C. if possible. I fell in love with the city almost immediately and could seriously see myself living there. I don’t know how difficult it would be to relocate, but I decided I’m going to try.

Read the rest of this entry »

I’ve been trying to get more involved doing arthritis advocacy work and recently I’ve been sending emails to my senators and representatives in Washington, D.C. urging them support various arthritis issues and legislation. Here’s the transcript of the email I sent today to Representative Erik Paulsen (R). I have no idea if he actually reads any of these, but I figure that it can’t hurt to try, so I’ll keep sending them. Hopefully someone is reading them.

If you want to send an email or letter to urge your representative to support this legislation, click HERE.

Please Co-Sponsor the Patient Access to Critical Therapies Act!

March 9, 2012

Dear Representative Paulsen,

As someone deeply concerned about arthritis, I am writing to ask you to
become an original cosponsor of legislation to improve access to the
critical treatments that can keep me, and my loved ones, active and
productive citizens.  Biologic drugs can now prevent patients with
conditions such as rheumatoid arthritis, lupus, and psoriatic arthritis,
from becoming disabled, seriously ill, or even dying.

Unfortunately, many health insurance policies are moving these critical
medications, such as biologics, into “specialty tiers” that utilize high
patient cost-sharing methods known as “co-insurance”.  This
fourth/specialty tier now commonly requires patients to pay a percentage
of the cost of medication – anywhere from 20% to 50%, which can often be
hundreds or even thousands of dollars each month for a single medication –
rather than a fixed co-payment amount.

Congressman David McKinley is introducing legislation later this month,
the Patient Access to Critical Therapies Act (PACTA), that would treat
these specialty drugs the same as Tier III non-preferred drugs.  Under his
legislation, commercial health insurers would impose the same co-payment
obligations for specialty drugs as they already do for Tier III
medications.  Providing insured patients access to these treatments will
allow me and many more of your constituents to remain in the workforce,
raise their families, and avoid becoming permanently disabled or seriously

I urge you to step forward and become an original co-sponsor of PACTA and
support your constituents who have chronic, life threatening, and
disabling conditions.  Please contact the Legislative Health Assistant in
Rep. McKinley’s office, at x54172, to become a co-sponsor of this

I have been on several of these “specialty” biologic drugs since about
2003 and I am also constantly in debt and trying to keep my head above
water to pay for these medications. If I don’t have the medication I will
most certainly become crippled. There are so many people out there in
similar situations to mine, and it’s not fair that we must be at the mercy
of the insurance companies and the drug companies just in order to live a
relatively normal life. People shouldn’t have to suffer because they can’t
afford to pay for medications. Please help.

Thank you very much.



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