Wednesday, July 15, 2009

Woman's Day Article on Rheumatoid Arthritis

I didn’t want to take RA to the beach with me!

I went to the beach the other day. We tried to take a day off from all of our vocational and avocational activities. We hardly ever take time off from school or work. Many of you know that the Rheumatoid Arthritis Warrior website is also hard work – several hours per day.

Of course, we left the computer at home. But, I didn’t even bring a notebook! And I said, “No camera either. I‘ll be tempted to get to work.” I tried to leave the Rheumatoid Arthritis at home too. I ate a good breakfast and took a big dose of Advil.

Woman’s Day magazines have been piling up around here since I started the blog. My daughters read them. But, I just have no time… So, I took the last 3 issues with me to the beach to catch up. It would be a work-free zone: just me, my CD player, my iced tea, and my kids.

Of course, you know RA won’t stay away. But sometimes, if you get really comfortable, sit very still, and get mentally absorbed in something, for a few minutes you can forget about it. That was the idea anyway.

When everyone was off to play in the surf, I settled onto my lounge chair. My daughter had rinsed it off and placed my thickest beach towel over it. Magazines are a luxury to be savored. So, I picked up the most recent one and read it one page at a time…

Until I got to page 76. My heart stopped. It was a light little page about Rheumatoid Arthritis. With a picture of a thin and muscular young woman laughing into a backstroke in tinted blue water. I think the image looked like a spa ad. But, ok, I’ll read now and judge later...

What a disappointment! I have read so many stories in this magazine about women who triumph over illness and adversity. About women who have a hard time getting a valid diagnosis and barely survive horrible diseases... And THIS is what they have to contribute to our campaign against ignorance of RA?

They made it sound like a minimal case of the flu. Anyone reading that article would be shocked to hear your stories, to read the emails I get, to look over the comments on this blog, or see the messages you leave through the Facebook page. It sounds like a different disease.

The teacher in me came out and I got an urge to take a red pen to that page. I would like to correct every misconception and inaccuracy and send it in to their editors for inspection. I still might.

I will not be dissecting each misstatement in this post. However, I will spend the rest of my life getting the correct info about Rheumatoid Arthritis known. One by one, I will address each thing.

I will not stop until Rheumatoid Arthritis is understood or cured for good, whichever comes first. Stay tuned.

What else can we do?

I flipped through the front pages to look for a letter to the editor section. No letters from readers department? Maybe they want folks to reply on the net, I figured. So, with some searching I found the internet version of the article and left my comment.

The comments are on two pages and you can add yours. Also, you can “Rate the story” by clicking on the stars. I hope one star means “Please try harder.” Click here to see it.


Anonymous said...

Hello...I just found your blog via twitter and am crying as i write this. So much your posts make me say "that's me" I am some drug store braces bought on each hand in order to type to you. I almost constantly have a fever and think it is the flu, yet it's not. I live in pain...constantly sometimes so bad I can't walk or even lock the door so I can leave the house. I have been to a rheumatoligist for over a year - he felt my hands and said "it's not RA" come back in 6 mos... despite my having an RA factor of 280. My rings no longet go on my hands and shoes I wore last year don't fit... I'm scared and don't know how to find a doctor to help... If I felt like that girl in the mag...I'd be on top of the world

Kelly said...

Gosh, Anonymous,
Isn't it unbelieveable how far reality is from what is being presented about RA? It is just not possible I guess to believe it is as bad as we say it is...

But, I am NOT giving up.
I hope everyone will take a few moments and tell WD mag what is what - nicely. :D

MissDazey said...

I added my 2 cents worth, wanted to write more, but found myself getting too upset. This is one of those fluff pieces I swear is paid for by the major pharma companies.

However, I am happy you got to the beach and could enjoy some time with your family. That is what is most important in life. Making memories to share for years and years.

Kelly, I wrote a blog about my best friend and the miracle they had. Hope you will read it.

Kelly said...

I will for sure. ;-)

bkenney1 said...

Hi Kelly,

I follow your blog regularly, which I think is great. Because of your commitment to raising awareness about RA, I thought you might interested in learning about a new program that we will be launching focused on RA.

I did not have your email address, but I am including mine so I hope to hear from you and I can share more details. Feel free to shoot me an email at your convenience as we would value your input.

I look forward to hearing from you.



Brian Kenney
Centocor Ortho Biotech Inc.