Monday, August 29, 2011

WEGO Health TV

WEGO Health TV works to create videos containing advice and information from bloggers and other online community leaders about various health issues. Recently they contacted me and requested that I contribute to their new Rheumatoid Arthritis channel. So I did!

I have to admit, especially considering how easy it has become for me to write honestly about my RA on this blog, I was surprised at how difficult I found it to talk about my RA in front of a camera. But I think it is good to challenge yourself once and a while, and now I have been featured in two videos on their RA channel.

I was going to embed the videos in this post, but I didn't like the way they played automatically (rather than giving you the option to press play). So, if you'd like to see the videos, please use the following links:

(1) School and Work with RA

(2) Staying Active with Rheumatoid Arthritis

Jacuzzi!!

This RA Factoid is brought to you by my friend RK!

Apparently, the word "Jacuzzi" started out as the last name of a family of Italian immigrants, who were originally aircraft manufacturers. But the seven brothers decided to switch to making whirlpool-treatment hot tubs in 1948. Their inspiration for creating such a soothing and therapeutic wonder? One of their sons suffered from RA! So every time you find relief in a jacuzzi, you can thank the Jacuzzi brothers for their quest to help those of us with RA!


(Heard of any other good RA Factoids? Send them my way and I will post them!!)

Wednesday, August 17, 2011

Please Consider Signing this Petition!!!

Please consider signing this petition!!

Public investment in biomedical research could improve the lives of millions of Americans forced to live daily with arthritis - including nearly 300,000 amazing kids and ME!! 

And, if you are reading this blog, biomedical research could probably improve your life or the life of someone you love. So please consider signing! And tell your friends!

Tuesday, August 16, 2011

Nabumetone

After literally taking all the anti-inflammatories in the house over the last few weeks (and we shop at Costco, so this was not a small number of pills), I finally gave in and went to see my rheumatologist yesterday about the massive and seemingly everlasting hip pain I've been dealing with lately.

He gave me a prescription anti-inflammatory that I had never heard of: nabumetone. They are like horse pills - I swear that picture is the actual size of the pills. In any event, I am really hoping that they work to manage some of this hip pain, because the next step is a short dose of prednisone. And we all know how I feel about prednisone

Here's to hoping my hip pain is on its way out (and that prednisone will not be necessary)!

JA Family Day

On Saturday, APL and I went down to Denver to volunteer at the Arthritis Foundation's JA Family Day. For us, it was a little bit like a mini day of being at JA Camp - and while we had fun with the kids the parents got to attend seminars to learn about their kids' arthritis. I was also super excited to get to see some of the same kids from camp again.

We got to do crafts, play games, and go swimming with the kids. After lunch we hit rocket-shaped pinatas and then the kids got into teams and made their own rockets out of 2-liter soda bottles. When the parents were done with their seminars, everyone watched while the rockets blasted off into the air.

APL and I both had a lot of fun hanging out with the kids - the kids are all so wonderful and full of life. I especially loved watching APL interact with the kids, particularly with an adorable 4-year-old little boy who took a liking to APL while we were in the pool. And I was really glad to be able to help a 5-year-old girl, who was scared to be without her mom, forget all about her mom while having a ton of fun in the pool.

But I will admit that in some ways JA Family Day was more heart-wrenching for me than camp. Even though I knew that a lot of the kids at camp had been diagnosed with arthritis at a really young age, this was the first time I had ever interacted with really little kids who were already dealing with arthritis. The youngest child at JA Family Day was about to turn 3, and her dad told me that she had been diagnosed with arthritis just as she was learning how to walk. She was still so young, and full of smiles and happiness, so it was really hard to imagine her dealing with the pain of arthritis at an even younger age. And I can't even image what her parents must have gone through.

It seems so incredibly unfair that these amazing kids - and their parents and siblings - should have to deal with arthritis at such a young age. And it is hard to accept that they will have to deal with arthritis for the rest of their lives. I know there isn't anything I can do to take the arthritis away, but I am really glad that there is anything at all that APL and I can do to help these kids and their families - even if it is something so small. Especially since we had so much fun doing it!

Thursday, August 11, 2011

Josh Sundquist

As long as we're on the subject of inspirational people, a friend just sent me a hilariously uplifting video. Josh Sundquist lost his leg to cancer at age 9, but he isn't letting it stop him from pursuing his dreams. I thought it might make you smile too:

Tuesday, August 9, 2011

Jeffrey Gottfurcht

On May 14, 2011, Jeffery Gottfurcht became the first person with RA to climb Mt. Everest!! Diagnosed with RA 10 years ago, at the age of 28, he decided not to let RA take this life goal away from him. He has also done amazing things for arthritis awareness, including starting a foundation to help children with arthritis live their own dreams: the Jeffrey Gottfurcht Children's Arthritis Foundation.

Considering the complaining I've been doing about my hips lately, his accomplishment is hard for me to even fathom. I mean, we're talking about Mt. Everest here. But he did it. And I find myself inspired. 

Just yesterday I was talking with a friend about whether I would ever be able to hike Half Dome again - a hike APL and I have each done separately that we have talked about wanting to do together someday. The hike takes you to the top of one of the most famous images in Yosemite National Park, which APL and I share as one of our favorite places on earth and is only a few miles from where we got married. But since my diagnosis I have had my doubts about my ability to hike 16 miles with about 5,000 feet of elevation gain - not to mention the cables you have to use to actually climb up the back of the dome. I've been wondering if I could ever have the hand strength, leg strength, and stamina to do it.

But if Jeffrey Gottfurcht can hike Mt. Everest with RA, surely a little planning and preparation could enable me to hike Half Dome if I really wanted to. Maybe Half Dome is my Everest - and maybe someday I'll get to accomplish that goal too.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)

Monday, August 8, 2011

Excruciating

My hip pain has been excruciating lately. It doesn't seem to matter what position I am in or what temperature I am. I've been eating anti-inflammatory pills like candy to no avail. Even vicodin doesn't even seem to take the edge off.

I have no idea what to do next.