Woman’s Day Reply to Rheumatoid Arthritis Comments

Many have been asking about me Woman’s Day magazine’s RA article.

Here’s what happened.

On July 15, I gave my sincere response to a one page article in Woman’s Day on Rheumatoid Arthritis. Many of you responded to the online version of that same article with comments that were intelligent and straightforward. Some of those comments were good enough to be whole blog posts! And there are over 30 of them!

As I mentioned in that post, I also began attempting to directly respond to the magazine’s editors.

Fast forward to August 21. I mentioned the Woman’s Day article in a blog post on the mythical RA. That day, someone left a url for the author of the article in a comment on the blog. After I checked it out, I did email her directly.

Here’s where we stand.

On August 25, I got a reply email from the author of the article, Judi Ketteler. Judi sent me the magazine’s reply. Here it is:

A Note from the Editors:Thank you all for your comments. We know that RA can cause severe pain, suffering and disability and certainly didn’t want to undermine that fact. This online story ran as a one-page article in the magazine under our “Checkup” column. The column (and story) is designed to provide a basic primer and is aimed primarily at people who are not familiar with the condition. It’s factually correct and the author interviewed a top rheumatologist. That being said, there are limitations to what we can cover in such a short amount of space. If we cover RA in the future, we hope to include real-life patient stories and provide more detailed information.

This was this past Tuesday. That was my first indication that someone at Woman’s Day was going to acknowledge us. I took some time to consider how to react.

What does this mean to us?

Someone close to me used to tell me: Some days chicken; some days feathers. If you’re from Texas, you’ll get it. The rest of us try.

I am predisposed to sports analogies and relate almost anything to football. So, I say: You win some, you lose some.

We lost this way.

The editor’s at WD actually think that what they wrote is “factually correct” and a “basic primer” on “the condition.” It is excruciatingly obvious that they think that they are right. Unfortunately, the actual facts about Rheumatoid Arthritis are evident to us every day.

We won this way.

At least we know the score. Where we stand is more apparent than ever. We have a 2-front war on our hands: 1) We fight Rheumatoid Arthritis in our own bodies and lives. 2) And we fight misperceptions about RA, too.

The WD article hit a hot button with RA’ers because it is an illustration of what we deal with every day: friends and neighbors who misjudge us because of RA; family members who refuse to adjust expectations or offer appropriate assistance; a general public which doubts the serious nature of our illness; employers who fail to recognize our limitations; and certain doctors who view us as weak-willed whiners. My son says, “People misjudge by appearances.”

But we are in the fight. We are on the field. The game is not over.

Recommended reading:
My original post: Woman's Day Article on Rheumatoid Arthritis
Taking RA seriously: Can Rheumatoid Arthritis Kill You?
On the lighter side: Weathering Rheumatoid Arthritis

The Truth About Rheumatoid Arthritis Will Be Told!

I got some good news this week that I know will make you smile, too. Let me back up a bit.

A few weeks back, the company which markets Remicade put up a new website about Rheumatoid Arthritis. It is a video series presented in a “talk show” format. It is highly polished and full of star power. The “host” is Deborah Norville.

When I heard about it, I was eager and excited. A long time ago, I had read that Norville’s mother had died of RA. At one point, I had made an attempt to reach Norville for an interview, but had not gotten a reply.

I hurriedly watched the video segments. However, my enthusiasm burst quicker than a cheap balloon. I sensed the presence of my arch enemy: the mythical RA. I could tell that the script writer did not understand Rheumatoid Arthritis.

To me, the worst video was the one on exercise. You’ll never guess what they called it! Yep you guessed it: “Use It or Lose It.” When I first heard that, it was like the Grinch stole my Christmas.

Here is how I felt: How can I accomplish my goal of telling the whole world about the real Rheumatoid Arthritis when…

1) The big money goes into a slick presentation which contradicts what I know to be true?

2) How can we ever get anyone to listen? I am just one blogger.

HOWEVER, here is what followed:

1) I made my opinion of the video known those in charge. I tried to represent “the real RA” and what has been shared with me by so many RA’ers.

2) They listened! Based on my input, they are making changes to the script of the exercise video.

This is what they told me: “The new copy has been adjusted to be more reflective of varying levels of ability for people living with RA.” They sent me examples of the changes.

They even changed the name of the video segment on exercise to “Stay Active at Your own Pace.” And they are taking my conversations with them into consideration as they draft new scripts future video segments. I will keep you up to speed on that.

I know they have a way to go until their site reflects the same brutally accurate version of Rheumatoid Arthritis that you see on Rheumatoid Arthritis Warrior. But, this is a step in the right direction. And, even more important, it is proof that someone is listening.

(Pssst: it's not a pizza! It's a monster cookie.)

Links:
The New Way RA Video Website
My Original Comment on the Videos
(if you want to add a comment on the Johnson and Johnson page, please watch the videos first)
Will the Real Rheumatoid Arthritis Please Stand Up (re: mythical RA)
One Month Birthday (where my original goals are listed)

Rheumatoid Arthritis in the News: Rituxan Success

Mountain Climbing With Rheumatoid Arthritis

Every day I peruse articles and journal abstracts, updates and tweets about Rheumatoid Arthritis. Maybe that is why I get so behind with emails or other blogs I’d like to read...
I think I am straining to see the future. What is next around the bend? From where will our cure come?

Anyway, a couple of weeks ago, I found this great article in the UK Mirror online. I am so happy to share with you this positive example of RA in the news. Kudos to Caroline Jones who wrote this is marvelous story of Wendy Dawley, a 33 year old RA-er.

According to the story, Wendy was the ripe old age of 30 when Rheumatoid Arthritis reared its ugly head. She just woke up one day and “Every joint in my body hurt – my neck, elbows, shoulders, even the balls of my feet. I couldn’t put my feet on the floor to stand up… It felt like severe bruising – or as if I’d been beaten up.” Sound familiar to any of you?

Why does it feel so good to see that in print? Maybe RA-ers have just had it with people acting like we are not very sick. I cannot tell you how many times people have thanked me for just voicing what they are experiencing. I know how they feel; I want to send flowers to Ms. Jones.

Miss Dawley was shocked by how suddenly the Rheumatoid Arthritis disabled her. She had thought that Rheumatoid Arthritis was what happens when you get old. Unfortunately, she learned otherwise. “There were times I couldn’t even get up, let alone go to work, meet friends or do any exercise. My social life ended. It was so bad I had to move back in with my parents, because I couldn’t look after myself. I felt like a child.”

Happily for Wendy, she was able to get into a trial for Mab Thera (called Rituxan in the US) three years ago. These are the brand names for rituximab. Rituximab was originally created to treat B cell lymphoma. It depletes B cells, a type of white blood cell (also called lymphocytes), by inhibiting the protein CD20. B cells are one link in the inflammation process of autoimmune diseases like Rheumatoid Arthritis.

Rituximab is used in cases of refractory Rheumatoid Arthritis, meaning that the RA has not been brought under control by other treatments that usually work to reduce symptoms (like TNF blockers such as Humira and Enbrel). It is administered by intravenous infusion which can take several hours. After 2 doses, it is not given again until the patient’s RA flares. It is used in conjunction with methotrexate.

How does Wendy feel about living her life on chemotherapy? “Long-term I presume I’ll always be on some kind of treatment, but it’s a small price to pay for getting my life back.” She describes herself as “transformed.” In fact, on a recent vacation, she went mountain climbing! No wonder her story was uplifting!

The story of Wendy Dawley’s Rheumatoid Arthritis has lots of common themes. Let’s hope we can make her happy ending more common, too.

Note: Here is a link to read the entire Mirror.co.uk article. There is not a comment box on the Mirror website, so I sent them an email to thank them for the accurate and hopeful article. Here is the email in case you want to do the same: mailbox@mirror.co.uk

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

Why is it so hard to get a Rheumatoid Arthritis diagnosis? RA-ers ask me that all the time. Why don’t we watch the mini-movie and then we’ll talk?

Video on referrals for Rheumatoid Arthritis:




There are some familiar themes there:

Minimizing:

Rheumatoid Arthritis patients report that healthcare professionals often underrate their symptoms. Sometimes, it is as if doctors are hard of hearing. But, other times it can be worse: they can intentionally discount the patient’s descriptions of the disease. Did you hear the lady say that her doc thought her just a “neurotic teenager”? I know one RA-er who was sent to a psychiatrist instead of a rheumatologist. I have actually seen doctors scoff about RA.

Ignorance:

Astonishing as it is, even many physicians are unable to recognize Rheumatoid Arthritis when confronted with the symptoms. They may not know that many RA-ers are seronegative, like another woman in the video. They frequently have misconceptions of Rheumatoid Arthritis. Otherwise, they may rely too heavily upon the ACR’s 7 guidelines.

Under-diagnosis:

Concerning Rheumatoid Arthritis, misdiagnosis is consistently “under-diagnosis.” Doctors tend to look with skepticism upon portrayals of RA which sound dramatic or extreme. (Who could believe someone could live with this much RA?) This tendency can cause doctors to “miss” Rheumatoid Arthritis entirely, seeing instead less serious conditions.

Consequences:

Some patients in the video stated that they were made to feel that they or their illness was unimportant. While that infuriates me, I actually have more grave reasons to protest. This is about more than hurt feelings. Here are some other consequences:

1) When doctors do not accurately hear what Rheumatoid Arthritis patients recount, it results in delay of an accurate diagnosis of RA. Of course this means either lack of treatment or an inappropriate treatment. Remember the dear mum in the video who was forced into an exercise program to treat her RA? If she had had another condition, instead of RA, she might have improved. However, it made her worse BECAUSE SHE HAD FULL-BLOWN RHEUMATOID ARTHRITIS.

2) If symptoms are not accurately heard, they cannot be accurately recorded. This may hurt the patient’s position with future providers, with long term disease management, and with insurance issues regarding treatment options.

3) Rheumatoid Arthritis is believed to cause permanent damage even during the first months of being symptomatic. Patients are permanently harmed when doctors refuse to hear them and do not refer to specialists or begin treatment.

4) Finally, I believe that one reason scientists can’t find a cure to Rheumatoid Arthritis is that the disease process is not entirely understood. It is impossible to cure what we do not understand. Failing to listen only exacerbates this problem.

Bewildering, huh?

Dangerous thought: what if doctors were hired based on whether they could find the right diagnosis… like plumbers and electricians? Would that help?

Recommended reading: Diagnosing Rheumatoid Arthritis
RA Warrior’s RA
It’s Okay to Laugh if You Have Rheumatoid Arthritis

Chicken Soup for Rheumatoid Arthritis Warriors

Today Rheumatoid Arthritis Warrior is 2 months old on the web. It is much, much older in my own computer... But we don’t need to tell our true age right?

RA Warrior is unique
The Rheumatoid Arthritis Warrior website is as unique as I am. It is impossible to duplicate sincerity. This blog is a true reflection of my own fight. God has made each one of us for a particular purpose. It cannot be duplicated.

Only the beginning
This blogspot page is only the beginning. Soon, you will be able to see what I have been visualizing for a long time. However, watch for a few “Danger: Under Construction” signs as we endure any growing pains.

Hard work
Working on RA Warrior has been extremely challenging, but rewarding work. My own life has been affected by many of you. Comments, emails, messages, and some of your own blogs remind me daily of why I do this and help me keep fighting.

Overwhelming gratitude

Here is part of the list of what I am thankful for:

Meeting exceedingly beautiful people;

Knowing I am not alone;

Having a good use for my perseverance and determination.

I am also thankful that the Rheumatoid Arthritis Warrior blog has continued to grow through what is called the summer dry spell for the blogosphere. Even with this timing, RA Warrior has over 5,000 page views and 33 splendid members. Are you a member yet? We have also gained over 200 Facebook fans in only one month. (Are you a “fan” yet?) Usually that requires advertising or an outside source of promotion. We are just us. You and me!

Woman’s Day Update

I was blown away by the way you responded to the Woman’s Day article on Rheumatoid Arthritis! Your comments were good enough to be whole blog posts! I will try not to be intimidated by how clever ya’ll are!! (To read their article & comment on their website, click here.)

What’s new here?

I have added twitter to the blog. You can follow me there to see what I am up to (in the few moments when I am not writing – hahaha). A few folks have asked about linking to RA Warrior or tweeting about our pages. PLEASE tweet and link away. We want to share!

I have also installed copyright statements. Basically, the point is “NO fishing.” Of course, I know none of you friends would! But, I want everyone ELSE to know that I have already been working with the U.S. Copyright Office to get numbers to register my work, which is already protected by law.

New to RA Warrior?

After you have read posts, I recommend you check out the “comments” sections. Many are rich with information and passion! We’d also love to hear your views, so add them. Even “older posts” are only a few weeks old. They are still relevant and folks stop by and check them out all the time. (I’ve seen the Google data.)

All in all it has been a good birthday. Only a few new wrinkles. Let’s have some cake.

Recommended reading:
a little about why I blog: RA W’s One Month Birthday
a little about me: My Angel Gabriel
for a quick laugh: Dr. Dolittle

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.

The UK's "Campaign Against Ignorance" of Rheumatoid Arthritis

Studies show that people do not understand very much about Rheumatoid Arthritis. There are many misconceptions. But, you probably already figured that out on your own.

In the UK, the National Rheumatoid Arthritis Society is trying to change that. They have an entire campaign about it. They call 2009 the “Year of Rheumatoid Arthritis.”

The director of the NRAS said that they were shocked at the “alarming ignorance” about RA. People do not realize what the symptoms are or who gets Rheumatoid Arthritis. They confuse it with Osteoarthritis a.k.a. “regular arthritis” or OA.

There is also confusion about the seriousness of the risks involved in RA, such as heart disease. It is not seen as a systemic disease. People do not recognize how it brings suffering and disability.

When I first heard about this “Year of RA,” I told friends it was the “coolest thing since ice cream.” I even sent a link out in an email. It was proof of what I knew by experience – and it’s always good to be validated.

I told one rheumatologist about the UK campaign and he called it unnecessary. He said, “I don’t think people are confused about RA. They know enough.” At the time, I was too shocked to reply.

But now I realize that it was a clue to our predicament. That same guy did not approve of using the internet to research RA. (I had given him a printout of the UK NRAS campaign article.) I guess he felt like knowledge is dangerous.

He is not worried about whether people understand Rheumatoid Arthritis. He does not encourage patients to learn more about RA. He does not approve of passing around printouts from the internet. He has never read an RA blog. He is ignorant of the ignorance.

But ignorance is not harmless. Ignorance of Rheumatoid Arthritis is especially dangerous. People who are already affected may not be able to receive the support that they need. Others may not receive an early diagnosis due to ignorance of the disease.

The UK campaign also seeks to encourage early treatment of Rheumatoid Arthritis. That is the only key we know which may help curb damage. People do not seek treatment if they do not know what RA symptoms are or that it is a serious life threatening disease.

So here is our situation: most people do not know what RA is. But, we know a lot about it. We need to speak up. We need to declare war on ignorance just like they are in Britain. We cannot wait for the medical professionals to do it for us. Some of them may be satisfied with the status quo.

NRAS study RA poll and Year of RA

Rheumatoid Arthritis and Depression

New Depression / RA Study Is Not Surprising
Rheumatoid Arthritis is in the news this week. It seems researchers have found that most RA patients battle depression. The study was done with 75 RA patients, mostly women.

Was anyone surprised? I have never met anyone diagnosed with Rheumatoid Arthritis who did not experience at least some depressing thoughts over the diagnosis. It is a normal reaction to news of such horrifying proportions.

For me, it was like a sentence without a crime. Of course I grieved! I grieved the myriad things which I had planned but would never do. I grieved my future. I grieved the delight of running on the beach. I grieved the pleasure of being able-bodied.

There is a normal grief process with several stages. Psychologists call it the normal grief process for a reason. It is considered healthy to encounter and process grief in each of those ways. And then it can be put aside.

Clinical depression is a more lasting sadness. It is like getting stuck. Often, counseling or even medication is needed to become un-stuck.

That’s the catch. Most things in life tend to cycle around: We have hard times, but they usually pass. Then there are some better days. There is an opportunity during a stronger period to process what has occurred.

But Rheumatoid Arthritis never reads the rule book. It tends to only progress. (That means “get worse.”) So, there may never be a period of lower stress during which you can process the feelings and move forward. Instead, there are often more shocking developments and more losses to grieve as the days go on.

It is pretty difficult to avoid getting stuck. Remember the diagram of the 4 courses of RA? Who could scale those peaks and not fall into a pit?

What can we do?

We can allow ourselves to grieve. We can purposely move through the normal stages, even if we must do it repeatedly (since the onslaughts of the Rheumatoid Arthritis are repeated). We can even welcome the grieving as healthy since we have honestly lost much.

Second, we can connect with others who understand and validate our grief. Often, those close to us do not understand what Rheumatoid Arthritis is or have denial issues about RA. Imagine trying to process grief over the death of a friend while folks are telling you “It’s not so bad.” As if it really is not. As if there had not been a death. That denial would not help the grief process.

Third, we can examine our medications and supplements. The study in the news today found that RA patients who use steroids are more likely to become depressed. Some supplements like Omega fatty acids are good for the RA symptoms and for our brains. Discuss depression with a doctor and consider what might be changed.

Fourth, of course, if we become truly stuck, we should ask for help. Sometimes, as mentioned, this means counseling or medication. At least for a spell.

Once in a Bible study on I Peter, I was taught something that really helped me: Stop being surprised at the trial you are enduring. You have brothers who are enduring the same suffering all around the world.

Peter was referring to persecution. But, it helps so much to stop being surprised at our suffering. No one is surprised at the grief of a cancer patient. Getting diagnosed with Rheumatoid Arthritis is bad news. We ought to grieve.

RA / Depression study: Science Daily article UPI article Pysch central