Comments on: Woman’s Day Reply to Rheumatoid Arthritis Comments http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/ Bringing information & encouragement to fight RA Thu, 24 May 2012 14:37:00 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Kathryn Wieland http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-217683 Kathryn Wieland Mon, 21 May 2012 05:39:37 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-217683 Dear Woman's Day, As one of the many men and women who are suffering with rheumatoid arthritis I was very extremely disappointed in your article about RA last year. It made RA, which is a serious, disabling disease, seem like a minor problem. There is no 'typical' case of RA; every person's disease follows it's own course. However, the degree of pain and disability that I have suffered is very common for RA. There are a few people with RA who are lucky enough to have a mild case. A "mild case"may just be RA in it's early stages which for some people lasts years. I often come across people who think they have RA who haven't been properly diagnosed by a rheumatologist. New studies show that there is a "window of opportunity" in the first two years of the disease in which aggressive treatment can prevent damage to joints. This makes it absolutely imperative that the 1.3 million people in the U.S.with RA are diagnosed early in order to prevent disability. If people are not educated properly about RA we will continue the cycle of late diagnoses and disability. The human suffering can not be measured, and the strain on the Social Security system is reaching it's breaking point. That is why I want to describe how the course my RA has taken and how it has affected my life.I was a concert violinist and was unable to continue in that job since 1999 or any other due to the RA. I am 50 years old and my RA started when I was 19 in 1981 when treatment consisted mainly of aspirin and corticosteroids. Because I was a violinist and my case was mild, I chose to stay in denial until my disease reared it's head with a vengeance when I was 33. Until then, I found all sorts of reasons to explain away the pain in my feet and hands. Fatigue had been such a usual part of my life for so long that I failed to recognize it despite family urging me to go to the doctor. I have had both feet completely reconstructed, surgery on both hands and will have to have surgery again on one of my feet and hands this year.I I was married for 20 years and my husband, because of articles like yours and popular misconceptions,believed that having RA was my fault because of my "lifestyle choices". He honestly thought if I lost some weight, got some exercise, and stopped taking all those drugs the doctors were conning me into believing I needed, that my RA would magically disappear. I wish it were true. These misconceptions are so widespread that they isolate rheumatoid arthritis patients and they contribute to divorces as they eventually did mine.Friends and family who can't see pain and fatigue don't understand that that RA patients never know from day to day, hour to hour how they are going to feel. We walk a tightrope between living as fully as possible and conserving energy. If you have had several really bad days then everything that you need to do piles up around you. A good day comes along and the tendency is to try to catch up on the piles of dirty laundry, go to the grocery store, and take care of all the other chores that have been neglected . But if you give in to this perfectly natural desire, the pendulum swings back and several days will be spent recovering in in bed. The obvious solution is for friends and family to help or to hire some help. Some lucky people do have family that they haven't exhausted. Unfortunately, it is hard for most people to understand that people with RA may need help. Misinformation like your magazine article only compounds the problem.Several years ago I had a friend write me an scathing email about how selfish I was and ending a friendship after seeing me in the grocery store one evening after I couldn't babysit her son that morning. I was stunned and incredibly hurt. But, she just couldn't understand that the only way I could do the few essential chores I had to do like go to the grocery store was by staying in bed most of the day. Making plans becomes almost impossible and leads to loss of friends which results in isolation just when help, understanding, and support is needed most. .Living on Social Security Disability and having constant medical expenses like many RAer's do, makes hiring household help, even occasionally not feasible. Before I had my feet reconstructed a year ago, when I would try to walk I fractured bones in my feet because they were so deformed from rheumatoid arthritis.I had to make a tough choice to start taking pain medications nearly 10 years ago so that I was able to have any quality of life at all. However, the pain medication only keeps my pain down to a dull roar. I, like most RA patients, made the risky decision of taking biologics. In 2000 it nearly cost me my life. One of the risks of biologics is death from a severe infection because of a suppressed immune system. This is exactly what happened to me after my first dose of Remicade. I developed MRSA pneumonia which led to septic shock.I spent 5 weeks comatose on a ventilator in that ICU perched between life and death followed by a long a tedious rehabilitation.I was so traumatized by the whole experience that it was ten years before I had the courage again to treat my RA with another biologic. No other therapy would slow down the progression of my disease, and those years caused a lot of damage that I can not reverse.I had to come to the realization that the quality of my life was so poor that I was willing to risk dying even after I had come so close to really losing it.RA patients who take biologics (Enbrel, Remicade,Orencia etc) ,which is the majority of patients with moderate to severe RA now, risk death and cancer rather than live with poorly controlled disease. RA patients feel sicker than many cancer patients going through chemo, but instead of it lasting for a few months it lasts for decades. People would not dream of treating a cancer patient they way RA patients are treated because most people hear rheumatoid arthritis and all they think of is their grandpa's "rheumatism" or garden variety wear and tear osteoarthritis.One thing that no on ever talks about few people know is that RA patients have a significantly shortened lifespan because they usually die of heart disease. The chronic inflammation causes atherosclerosis. You need to publish a new article which is an accurate representation of RA that also stresses the need for early diagnoses in order to prevent disability. Interviewing real patients with documented RA and telling their stories would finally be a huge step towards educating the public about this disease.. It was sloppy and irresponsible of Woman's Day to publish without doing the proper research(one source is not proper research!). RA is the number one case of disabilty in the US with approximately 1.3 million people in the United States have rheumatoid arthritis and about 1-2 percent of the world population are affected by rheumatoid arthritis. http://arthritis.about.com/od/rheumatoidarthritis/p/rheumatoidfacts.htm A study, published in the June issue of Arthritis & Rheumatism reveals that number of new cases of rheumatoid arthritis (RA) in American women appears to be on the rise.(2.5% between 1995 and 2007). When you write an article about a disease that affects the lives of so many people so profoundly, it is your moral responsibility to due it accurately and thoughtfully. Rheumatoid arthritis patients find it extremely frustrating when RA is minimized in the press. We already fight an uphill battle trying to get other people to understand what the nature of the disease and how seriously it impacts so many lives. As a women's magazine, you should be ashamed for misrepresenting a disease that affects so many women and their families. Sincerely, Kathryn Wieland (please withhold name if comments are published) “Watch your thoughts, for they become words. Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it becomes your destiny.” The Dalai Lama Dear Woman’s Day,
As one of the many men and women who are suffering with rheumatoid arthritis I was very extremely disappointed in your article about RA last year. It made RA, which is a serious, disabling disease, seem like a minor problem. There is no ‘typical’ case of RA; every person’s disease follows it’s own course. However, the degree of pain and disability that I have suffered is very common for RA. There are a few people with RA who are lucky enough to have a mild case. A “mild case”may just be RA in it’s early stages which for some people lasts years. I often come across people who think they have RA who haven’t been properly diagnosed by a rheumatologist. New studies show that there is a “window of opportunity” in the first two years of the disease in which aggressive treatment can prevent damage to joints. This makes it absolutely imperative that the 1.3 million people in the U.S.with RA are diagnosed early in order to prevent disability. If people are not educated properly about RA we will continue the cycle of late diagnoses and disability. The human suffering can not be measured, and the strain on the Social Security system is reaching it’s breaking point. That is why I want to describe how the course my RA has taken and how it has affected my life.I was a concert violinist and was unable to continue in that job since 1999 or any other due to the RA. I am 50 years old and my RA started when I was 19 in 1981 when treatment consisted mainly of aspirin and corticosteroids. Because I was a violinist and my case was mild, I chose to stay in denial until my disease reared it’s head with a vengeance when I was 33. Until then, I found all sorts of reasons to explain away the pain in my feet and hands. Fatigue had been such a usual part of my life for so long that I failed to recognize it despite family urging me to go to the doctor. I have had both feet completely reconstructed, surgery on both hands and will have to have surgery again on one of my feet and hands this year.I I was married for 20 years and my husband, because of articles like yours and popular misconceptions,believed that having RA was my fault because of my “lifestyle choices”. He honestly thought if I lost some weight, got some exercise, and stopped taking all those drugs the doctors were conning me into believing I needed, that my RA would magically disappear. I wish it were true. These misconceptions are so widespread that they isolate rheumatoid arthritis patients and they contribute to divorces as they eventually did mine.Friends and family who can’t see pain and fatigue don’t understand that that RA patients never know from day to day, hour to hour how they are going to feel. We walk a tightrope between living as fully as possible and conserving energy. If you have had several really bad days then everything that you need to do piles up around you. A good day comes along and the tendency is to try to catch up on the piles of dirty laundry, go to the grocery store, and take care of all the other chores that have been neglected . But if you give in to this perfectly natural desire, the pendulum swings back and several days will be spent recovering in in bed. The obvious solution is for friends and family to help or to hire some help. Some lucky people do have family that they haven’t exhausted. Unfortunately, it is hard for most people to understand that people with RA may need help. Misinformation like your magazine article only compounds the problem.Several years ago I had a friend write me an scathing email about how selfish I was and ending a friendship after seeing me in the grocery store one evening after I couldn’t babysit her son that morning. I was stunned and incredibly hurt. But, she just couldn’t understand that the only way I could do the few essential chores I had to do like go to the grocery store was by staying in bed most of the day. Making plans becomes almost impossible and leads to loss of friends which results in isolation just when help, understanding, and support is needed most. .Living on Social Security Disability and having constant medical expenses like many RAer’s do, makes hiring household help, even occasionally not feasible. Before I had my feet reconstructed a year ago, when I would try to walk I fractured bones in my feet because they were so deformed from rheumatoid arthritis.I had to make a tough choice to start taking pain medications nearly 10 years ago so that I was able to have any quality of life at all. However, the pain medication only keeps my pain down to a dull roar. I, like most RA patients, made the risky decision of taking biologics. In 2000 it nearly cost me my life. One of the risks of biologics is death from a severe infection because of a suppressed immune system. This is exactly what happened to me after my first dose of Remicade. I developed MRSA pneumonia which led to septic shock.I spent 5 weeks comatose on a ventilator in that ICU perched between life and death followed by a long a tedious rehabilitation.I was so traumatized by the whole experience that it was ten years before I had the courage again to treat my RA with another biologic. No other therapy would slow down the progression of my disease, and those years caused a lot of damage that I can not reverse.I had to come to the realization that the quality of my life was so poor that I was willing to risk dying even after I had come so close to really losing it.RA patients who take biologics (Enbrel, Remicade,Orencia etc) ,which is the majority of patients with moderate to severe RA now, risk death and cancer rather than live with poorly controlled disease. RA patients feel sicker than many cancer patients going through chemo, but instead of it lasting for a few months it lasts for decades. People would not dream of treating a cancer patient they way RA patients are treated because most people hear rheumatoid arthritis and all they think of is their grandpa’s “rheumatism” or garden variety wear and tear osteoarthritis.One thing that no on ever talks about few people know is that RA patients have a significantly shortened lifespan because they usually die of heart disease. The chronic inflammation causes atherosclerosis. You need to publish a new article which is an accurate representation of RA that also stresses the need for early diagnoses in order to prevent disability. Interviewing real patients with documented RA and telling their stories would finally be a huge step towards educating the public about this disease.. It was sloppy and irresponsible of Woman’s Day to publish without doing the proper research(one source is not proper research!). RA is the number one case of disabilty in the US with approximately 1.3 million people in the United States have rheumatoid arthritis and about 1-2 percent of the world population are affected by rheumatoid arthritis.
http://arthritis.about.com/od/rheumatoidarthritis/p/rheumatoidfacts.htm A study, published in the June issue of Arthritis & Rheumatism reveals that number of new cases of rheumatoid arthritis (RA) in American women appears to be on the rise.(2.5% between 1995 and 2007). When you write an article about a disease that affects the lives of so many people so profoundly, it is your moral responsibility to due it accurately and thoughtfully. Rheumatoid arthritis patients find it extremely frustrating when RA is minimized in the press. We already fight an uphill battle trying to get other people to understand what the nature of the disease and how seriously it impacts so many lives. As a women’s magazine, you should be ashamed for misrepresenting a disease that affects so many women and their families.
Sincerely,
Kathryn Wieland
(please withhold name if comments are published)
“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.”
The Dalai Lama

]]> By: Marilyn http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-66364 Marilyn Tue, 10 May 2011 18:30:48 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-66364 Well... if Woman's Day has a limited amount of space in which to present information on a condition why bother to print misinformation? Somewhere there is a very lazy editor. Well… if Woman’s Day has a limited amount of space in which to present information on a condition why bother to print misinformation? Somewhere there is a very lazy editor.

]]> By: Mary http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-52545 Mary Thu, 27 Jan 2011 19:54:04 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-52545 Hi Kelly! I hadn't realized you had posted a reply until just now; that was during an extremely crazy month medically for our family. There's a reason why I've cooled on the Arthritis Foundation, and this is why. I've read their Arthritis magazine off and on for over twenty years. To me they are every bit as guilty of promoting the positive without balance for those of us less fortunate. We desperately need more public respect for RA. I am so delighted you have created this site and are so active in advocacy. -Mary Hi Kelly! I hadn’t realized you had posted a reply until just now; that was during an extremely crazy month medically for our family.

There’s a reason why I’ve cooled on the Arthritis Foundation, and this is why. I’ve read their Arthritis magazine off and on for over twenty years. To me they are every bit as guilty of promoting the positive without balance for those of us less fortunate. We desperately need more public respect for RA. I am so delighted you have created this site and are so active in advocacy.

-Mary

]]> By: Kelly Young http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-18722 Kelly Young Sun, 13 Jun 2010 21:22:04 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-18722 I agree! Go Connie!! :soldier: I agree! Go Connie!! :soldier:

]]> By: Connie Asher http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-18721 Connie Asher Sun, 13 Jun 2010 21:20:33 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-18721 Dear Warriors, Please don't give up this fight. I just sent WD another letter, and e-mail. The truth of what ""Rheumatoid Autoimmune Disease" (love the new name idea) really is------is just begging to be told. Kelly has shown us all how to fight the good fight, so let's keep this campaign going until they respond. Love you all! Dear Warriors,

Please don’t give up this fight. I just sent WD another letter, and e-mail.
The truth of what “”Rheumatoid Autoimmune Disease” (love the new name idea) really is——is just begging to be told.
Kelly has shown us all how to fight the good fight, so let’s keep this campaign going until they respond.
Love you all!

]]> By: Tweets that mention This is far from over: Woman’s Day Reply to Rheumatoid Arthritis Comments -- Topsy.com http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-17083 Tweets that mention This is far from over: Woman’s Day Reply to Rheumatoid Arthritis Comments -- Topsy.com Fri, 04 Jun 2010 06:12:46 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-17083 [...] This post was mentioned on Twitter by Pamela Esparza, Kelly Young: This is far from over: Woman’s Day Reply to Rheumatoid Arthritis Comments http://bit.ly/8ASNnb [...] [...] This post was mentioned on Twitter by Pamela Esparza, Kelly Young: This is far from over: Woman’s Day Reply to Rheumatoid Arthritis Comments http://bit.ly/8ASNnb [...]

]]> By: Kelly Young http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-6435 Kelly Young Sat, 27 Feb 2010 01:28:51 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-6435 Mary, I argued similar points to both the editor & the author of the article over emails back and forth. They both stood their ground, saying that the Arthritis Foundation supported their article and their viewpoint. I can't forward your reply, but up in the 1st paragraph of this post there is a link to the "comments" there and you can add your 10 cents worth. 8-) Mary, I argued similar points to both the editor & the author of the article over emails back and forth. They both stood their ground, saying that the Arthritis Foundation supported their article and their viewpoint. I can’t forward your reply, but up in the 1st paragraph of this post there is a link to the “comments” there and you can add your 10 cents worth. 8-)

]]> By: Mary Higdon http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-6431 Mary Higdon Sat, 27 Feb 2010 01:02:26 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-6431 Articles which gloss over the realities of RA do a disservice to the many people suffering with the disease. As annoyances go, it's right up there with the ads to treat "the minor aches and pains of arthritis". It is good to inform many people that their aches and pains could be serious. It would be helpful, especially since RA targets women disproportionately, to have some lengthier articles about the realities of more severe arthritis. Far, far too many people have a mistaken idea that because the word "arthritis" is involved that it isn't something serious. The other thing that has really bugged me is the many many articles about overcoming the disease. Don't get me wrong, some of them are truly inspirational and I do enjoy reading those. But what I don't want is an unrealistic expectation that everyone can have a fantastic outcome, and that if you don't, it's somehow your fault. At some point editors need to recognize that RA is a serious condition, with serious consequences and that many people are suffering nearly as much from the lack of public knowledge about the disease as from the disease itself. Please feel free to forward my comments to Woman's Day! Articles which gloss over the realities of RA do a disservice to the many people suffering with the disease. As annoyances go, it’s right up there with the ads to treat “the minor aches and pains of arthritis”. It is good to inform many people that their aches and pains could be serious. It would be helpful, especially since RA targets women disproportionately, to have some lengthier articles about the realities of more severe arthritis. Far, far too many people have a mistaken idea that because the word “arthritis” is involved that it isn’t something serious.

The other thing that has really bugged me is the many many articles about overcoming the disease. Don’t get me wrong, some of them are truly inspirational and I do enjoy reading those. But what I don’t want is an unrealistic expectation that everyone can have a fantastic outcome, and that if you don’t, it’s somehow your fault.

At some point editors need to recognize that RA is a serious condition, with serious consequences and that many people are suffering nearly as much from the lack of public knowledge about the disease as from the disease itself. Please feel free to forward my comments to Woman’s Day!

]]> By: Ching Ya http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-392 Ching Ya Mon, 31 Aug 2009 16:32:26 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-392 Good that you brought up the issue to the RA community. Even though I don't know much about RA, but surely have learned some from your site. Hopefully the notice create awareness so whoever is working on the subject needs to be thorough in their research and writings. Good that you brought up the issue to the RA community. Even though I don’t know much about RA, but surely have learned some from your site. Hopefully the notice create awareness so whoever is working on the subject needs to be thorough in their research and writings.

]]> By: jamie http://rawarrior.com/womans-day-reply-to-rheumatoid-arthritis-comments/comment-page-1/?show=comments-390 jamie Sat, 29 Aug 2009 08:24:58 +0000 http://rawarrior.com/woman%e2%80%99s-day-reply-to-rheumatoid-arthritis-comments/#comment-390 It is with great sadness that I now realize that everyone at WD has rose colored glasses on. How truly pathetic that they will not research deeper into their own articles, blurbs, tidbits, etc. I know of several million people that may no longer buy, read, or trust this so called magazine. Makes all of us want to and need to work all the harder to get the truth out and take the rose colored glasses off the nation, nay, the world. OK, my rant is finished, for the moment!!!! It is with great sadness that I now realize that everyone at WD has rose colored glasses on. How truly pathetic that they will not research deeper into their own articles, blurbs, tidbits, etc. I know of several million people that may no longer buy, read, or trust this so called magazine. Makes all of us want to and need to work all the harder to get the truth out and take the rose colored glasses off the nation, nay, the world. OK, my rant is finished, for the moment!!!!

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