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37 Responses to “Woman’s Day RA Is Destructive, but Phil & Venus Have Cred”

    1. Cynthia says:

      hi Kelly,
      I agree with you that the issue is an important one…so important that I wrote a lengthy letter to Woman’s Day and also a blog post on it today on my blog. In the blog post, I published the letter I wrote to Woman’s Day. Please feel free to visit
      http://cynthialottvogel.blogspot.com/2012/07/teaming-with-ra-warrior.html
      Also, Kelly, I borrowed the image of the Woman’s Day article that you used in the blog. I hope you do not mind…If you do, Please email me and I will remove the image.
      Thanks for the work you do on our behalf.
      Cynthia

      • Thanks. Let us know if they reply. In 09, we had hundreds of people write to them and contact them, but no on ever received a reply as far as the folks told us.

    2. Cynthia says:

      Kelly, the email address you gave for Woman’s Day is no longer a valid email….My letter bounced back to me.
      Cynthia

    3. Ms. M says:

      I’ve gotten to the point in the last year or two where I baldly tell people I lost an eye to JRA. I have an artificial eye because of severe inflammation that began at age 5, could not be controlled with prednisone or drops, turned into glaucoma that 3 surgeries (including at the time brand new laser method) couldn’t help, and was blind in one eye by the age of 15. Had the eye removed in my early 20’s. Yes, this was due to JRA.

      I get the double punch of explaining children get RA too, and that it is a systemic disease. I’m sick of people not understanding this is systemic, lifelong, and degenerative.

      I’ve made a new friend in the past 6 months. She knew I had RA but “didn’t realize it was so severe” (I have a moderate case), until I posted a trip update to family / friends of our week family roadtrip vacation with some gory flare details in it.

      We’ve got a lot of work to do, but everyone we get to understand helps them help OTHERS to understand. I think of myself as a ripple in a pond. Eventually we’ll make a difference!

      • We are definitely making a difference. There are places where we have seen a difference. Yet for some reason there are also those like I’ve mentioned in this posting / links who are determined to promote their “side.”
        We are making a difference because many who are not patients read this website. And, thanks to people like you who put their story out there. No one can argue with our stories, the facts we live with. I had no idea you’d been through that. Thank you for sharing that detail which makes the point so clearly.

    4. As and RA patient I am horrified to see such misinformation in the public media.

      Shame on Women’s Day publishers.

      As my RA continues to worsen; My commitment to helping others understand this disease grow and grows.

      Mary L Aull

    5. Ms. M says:

      Biologics finally stopped the inflammation in my remaining eye (which would flare at the same time as my arthritis). I had a 2.5 yr remission from Enbrel 10 yrs ago, and since then moderate response from various biologics, but they finally tamped down on decades of eye inflammation. I always emphasize to others with autoimmune conditions to get their eyes checked, and to try to do it during a flare to see if the eyes are having trouble too. Inflammaton in the eyes cn lead to many more serious problems.

    6. Lisa B says:

      I wonder what we can learn from other diseases that have a history of being trivialized that now appear to have more street cred. Off the top of my head, depression and diabete come to mind. In my day, both were oftened pooh-poohed or trivialized or considered the patients fault…. Now the public is vastly more informed. How did they get from there to where they are now?

    7. Babs D says:

      Every female in my –and previous generations have RA. I watched my Grandma suffer with RA. This is not a disease for wimps. My maternal Grandma — who passed on the RA genes to me and my siblings, worked as a maid in a hotel until she was in her 80’s. In my youth on trips to visit her, we listened to her cries of pain at night. Yet every morning, there was no talk of pain or disability. My 85 year-old mother still cares for a brother disabled by severe epilepsy –24 hours a day. I never hear my mother talk about the pain, yet I know it’s there. Although, my female role models are gutsy and nothing stops them – they are not WMD versions of RA. Women’s Day does a discredit to every women that has suffered and managed to overcome!

    8. Julie says:

      “WMD” also made me think of “weapons of mass destruction” we frequently heard about, with the invasion of Iraq. With that definition in mind, WMD made me think it was appropriate that RA could be thought of as a WMD, as a major destruction force.
      And on the other hand , WMD could refer to what we need, to combat RA, as in major disease blaster/weapons of mass destruction, to fight moderate-severe RA, especially!.

    9. Deborah says:

      Well here I am and its another day after another night of not sleeping well because every time I move I wake up. I struggle to get up and go to the toilet…in truth I am struggling with just about everything right now. My fingers aren’t working and are swollen and hurt. My knees , wrists, shoulders and toes all ache so much that I feel like screaming. The pain meds offer some light relief and I worry that I am taking too much that they are loosing there potency. I am persisting with the hard meds of Methotrexate and Humira even though right now I see no improvement (and they make me feel sick). I am getting desperate inside.

      I have RA…I am not making this up. I am not exaggerating the pain. I am hurting all over all the time. I don’t feel as though the medical world understands this and I feel lost. I want and need people to understand and believe me. I would give anything to get back the professional life I had. I’m 48 and still have a lot to give.

    10. Catharine says:

      Recently the Arthritis Foundation posted a link on Facebook to an article in which people were claiming there was a correlation between RA and obesity so therefore it must cause it. Again, a lifestyle choices are a reputed cause of RA. Of course there is a correlation. Many RA patients have become obese because of their inability to move in a way that effectively burns calories and fat. But most of these people didn’t start out obese. They became so after years of RA.

      Simple scientific fact. Correlation DOES NOT equal causation. The fact that the Arthritis Foundation posted that junk just boggles the mind.

      Women’s Day is the last place people should be finding experts about RA.

    11. Leigh Ann says:

      I recently told a colleague who suffers from the more typical osteoarthritis we see in the general population. She has had a knee replacement so I know that she can related to the pain. But she was floored when I told her that my si joints had deteriorated from no problems to needing an x-ray guided steroid and anesthetic injection within two years, and that I had gone from being very athletic and active to needing to stop and rest at every landing while climbing stairs within a year of RA onset. This is not “just” a different form of arthritis.

    12. Eliza says:

      I hadn’t heard about the weightlifting. My kids know they can get away with anything because there is no chance of mom spanking them when they misbehave – the pain in my hands would send me through the roof. When you can’t even hold your kids hands while crossing a parking lot, how exactly are you supposed to pick up a barbell? wait wait don’t tell me – it will hurt less the more I do it! Then I guess I will continue to withstand the pain of holding my kids hands, rather than weightlifting to cure my RA.

    13. Pat H says:

      I sometimes think that no one who does not have RA ‘gets it’. But on the same day that I saw this post, I read an article in the New York Times Personal Health blog. (http://well.blogs.nytimes.com/2012/07/09/relief-for-joints-besieged-by-arthritis/?ref=health) The article was about osteo arthritis, but contained this wonderful sentence:

      “Rheumatoid arthritis, on the other hand, is an autoimmune disorder.”

      Not really a lot, but RA was not the focus of the article. Still, a whole lot better than all of those people who responded to the news of my diagnosis “Oh, I have arthritis too”

    14. Our mission is simple. We must as an organization get the correct facts out about the dangers of rheumatoid disease. While having well known celebrities come forward will help, why is it only their words that are deemed credible. Do we question a cancer patients symptoms or medicine side effects? Why must this exist? It is here where the foundation can have the greatest impact. Together we can make this happen.

    15. cammie says:

      Oh how I wish I had RA lite. There are mornings (every morning) when it is extreemly difficult just to get out of bed and get to work. I think somebody forgot to tell my RA is was supposed to be the light kind. Not only is it difficult to get up and and out of bed, but thhe days when the R messes with my jaw then eatingis a real pain. Eating doesn’t always happen on those days. So many other ways that the RA messes up my life and not enough space or strength to right them in a post.

    16. […] Woman’s Day RA Is Destructive, but Phil & Venus Have Cred. Share this:TwitterFacebookLike this:LikeBe the first to like this. This entry was posted on July 11, 2012, in caregiving spouse, chronic illness. Bookmark the permalink. Leave a comment […]

    17. Cindy says:

      I am trying hard to be an advocate here in Vermont where I live. I recently had to apply for the state sponsored health insurance program as I had lost my job due to budget cuts. The state program has two vendors and a “blueprint” for the program. There is a Chronic Care coverage in the program whereby premiums, copays and deductibles are eliminated or reduced. The logic of this makes perfect sense as we all know that early or preventative care prevents more costly care if someone has not received the appropriate care needed for their disease. What does not make sense is that RA is not covered. Asthma, Diabetes, Depression, Heart Disease, PTSD… but no RA. My journey to inquire about this has been extremely frustrating. After not getting answers or getting conflicting answers from the vendors and the managers of the state end of the program, I have written all of my local reps – 6 county senators and one local representative. I also wrote the governor’s office and my national senators and representative. I have gotten very limited responses back. I have found out that the language of the blueprint would allow for RA to be covered under this Chronic Care management, but the vendors have chosen not to include it and there is no real oversight by the state for this. I even qualified for case management services with my previous insurance with one of the vendors due to complications of the RA and a recent diagnosis of lung cancer. This really bothers me both from a financial perspective but also from a lack of understanding and support for RA within the medical and insurance community. I am still trying to pursue this and advocate for change, but it is hard and takes up so much time. I will continue and will fight the good fight.

    18. Bella says:

      Thank you for posting this reply to the WDM article. I cannot believe how my life has changed since my RA, I could not turn on the ignition to my car, lift my baby out of her bed lift myself out of the bathtub without terrible pain. If RA is so mild then why do we take drugs that could possibly lead to cancer then death. If it’s so mild who would risk cancer ..really??

      Thanks again.

    19. Rebecca says:

      I love you for posting this article! I have always ALWAYS hated Web MD, and it pisses me off how often people will come up to me and tell me what they ‘learned’ about Rheumatoid Arthritis from the site.

    20. Donna McAllister says:

      I believe this is done to promote the sale of expensive drugs that my or may not work. RA is making people rich.

    21. Jack Newman says:

      As a relatively recent member of the RA tribe, and at a later time in life than I understand is a common experience, I hesitate to present my issues as meaningful. However, there are few, if any, other venues that seem to be as applicable to what I have become since RA. In the past year or so, I have degenerated from a still-powerful 295 pound 65-year-old to a weak, usually hurting 235 pound old man (2/3 of it muscle loss), many times unable to walk well or even get to sleep because of intense, unceasing pain. Occasionally I am mentally foggy and unable to focus. My neck/voice often becomes seriously involved, and seldom is free of tightness and pain. Fatigue is ever-present, ‘bumps’ have sprouted from my first finger joints and toes. I have always been able to ‘be a man’ about pain and physical damage, and I am certainly trying to do so now. I was not officially diagnosed until about 3 months ago by the VA, and therefore am new to my Rheumatologist, RA terminology, standard treatments, exercise options, and all facets of my new reality. Higher mortality? Increasingly crippled? How fast? Internal organ involvement, and if so, how to fight it? Helpful supplements? My physician sister is a D.O., and suggests Tai Chi as an exercise, any experiences with this? Should I just fight through the misery and walk when my knees are killing me (like this morning), or not? What is best to eat/avoid? Heating pads have helped the past two nights, and of course I am a walking menthol room freshener. Is this bad long-term? I have read msny of Kelly’s very useful posts already, and know I will continue to do so. I will also appreciate any and all additional insights presented. Thanks in advance.

      • Dear Jack,
        I’d start with the RA Map on the menu up at the top of the page. That answers a lot of questions and leads you to some good links for issues you’re asking about. It would take me a couple of hours to answer all of your questions adequately and thats the whole reason that I created the RA Map – which starts with a letter from me and a video message.

        Sometimes heat brings relief, but often ice is effective in reducing inflammation. As long as a joint is inflamed, treat it as you would an injury. If it subsides, you can test to see if it can tolerate the exercise that I’m sure you’d love to do. Exercise is helpful for most humans of course, but RA throws in a wrench. You need to listen to your body & dont press through pain. There are posts on all these issues here. You can use the search box or the TAGS list to find lists of articles on topics – both of those are at the top right.

        I will say that your experience that you describe is VERY common – I have gotten MANY many letters like your post.

        Another thing I’ll say is to take one day at a time. – I’ve worked hard over 3.5 yrs to post articles on many of our important questions and there are more to cover, HOWEVER, it took me 3.5 yrs to write and you wont experience all of those things at one time. And hopefully you wont experience some of them at all. So read one article at a time as you have questions – there are about 700. And then take one issue at a time for yourself.

        Another important thing I’d tell you if we could talk would be – dont expect the worst. We learn quickly to be an optimistic bunch. It’s needed to keep going.

        Finally, don’t expect others to understand fully who don’t have RA – even spouses or medical professionals like your sister. There are many myths and much misinformation. Ask them to accept what you tell them about your experience, but then give them slack to be able to understnad. It’s almost impossible to imagine how RA is and how it affects you – if you haven’t been there. Staying in communication with others who have the disease will provide support and take some pressure off those who dont quite understand.

        Best of luck to you. I’m glad you found us.

    22. violetbrown says:

      Well said. I am printing and taking to my rheumy Sept. 6. THANK YOU KELLY for being our voice!

    23. Chris says:

      Could it be that these people are afraid that if they accurately portray the pain of RA that people will stop reading their magazines? Or is RA just not one of the diseases in vogue right now? I don’t understand why this disease (and the people who have it) are being treated as if it’s no big deal.
      RA hurts. But it hurts even more when you are dismissed by others as being overly dramatic, a complainer, not as bad off as someone else – or worse yet, ignored completely.
      Maybe one day (movie-like dream ripple) someone will write a bestselling book, or a blockbuster movie, or a highly-rated television show that centers on an amazing person who has RA – and does not sugar-coat it. Or am I asking too much?

    24. Jennifer Wheat says:

      As physically and emotionally exhausting this disease is in its systematic destruction (Let’s go with the Weapon of Mass Destruction in this case) of my body’s organs over time, it is easier to deal with than ignorance and stupidity.
      One can be educated, the other cannot.
      I have given birth and raised twins as a single parent for two years before I met my fella. I have had RA for three. I am not a hypochondriac nor do I dramatize.
      The other effect these articles have on me personally is how demoralizing they are. When I despair, when I lose hope, when I cannot push any longer, when my body will not listen to my mind, my faith in my ability to stand another day weakens.
      I am in chronic pain. This is not “dull” trust me. It is sharp as hot knives being slid into my joints. That’s why I go through my day whimpering or crying out. It often is sudden which joint is attacked and how, and how each joint reacts. The other “non dull” pain is the kind that has me writhing in my bed for hours without relief.
      I cannot hold my daughters hands sometimes. I cannot lift them up, physically. That could be chalked up to my “histrionics”, I guess.
      Dramatization doesn’t explain our mortality rate. Or the way our joints shift and move. Yet I had to hear (even though I knew about it from personal research) about the worry of heart attack from my general practitioner instead of my Rheumy, and I consider her a good doctor.
      Just not good enough. She offers me a dream that never may be realized in remission. I did not accept my diagnosis or realize its potential to reduce my life span, wreck havoc in my physical body and relationships with family and friends, quite honestly change my entire world…until a year into my diagnosis. A year. When is the most important time to treat this disease?
      Immediately. The first year is critical, they now think.
      So I educate and educate and educate when I can. Most of my family and friends didn’t even know about RA before me. I certainly didn’t know of it before I was diagnosed.
      I take cancer drugs. Chemotherapy drugs. I weigh with every medicine change, the potential harm versus the potential help. My choices aren’t always clear because these drugs systematically try and kill my systems too.
      I have enough to fight against. I am a warrior, I battle on many sides. RA, my body, my systems, my drugs, my doctors, and ignorance. I want to tell these editors so many things. Don’t add to the legion already out there with these articles. Don’t become my enemy. Do not HELP my diseases destruction of my mind, body and spirit.
      Better you should stay quiet than print this stupidity.
      I remain,
      Jennifer

    25. Ed says:

      Perhaps a direct appeal to Venus Williams and Phil Mickelson is in order. Call them up on behalf of RA warrior and solicit them to expand their iconic role on behalf of the rest of us. Although they are being compensated by the pharmaceutical company who manufactures Enbrel, we don’t know if they know that they are doing harm.
      I would suggest thinking through a way to utilize their celebrity to achieve your end goal which should be clearly defined. They are busy professionals so when you make contact know in advance specifically how and what you would require of them to help the cause.
      I would hope that they will be receptive!

    26. Ed says:

      After three years of trying and assortment of medications to control my RA, today I am going to the doctors to take my first shot of Enbrel. After writing my last comment It dawned on me that the compensation that Phil Mickelson and Ms. Williams are receiving, although being paid for by the pharmaceutical companies, are really being paid by us – the Enbrel end user! The cost associated with marketing Enbrel is reflected in a higher retail pricing. That being said I would hope that they would feel compelled to to set the record straight on behalf of their customers who enable their large endorsement fees to be paid.

    27. Belinda Langley RN says:

      How insulting. It really makes me angry. To get through this, I chant this mantra “there is a purpose to all of this suffering”. This disease takes me kicking and screaming on this roller coaster of hope and lost hope. I really was trying to just get through this, and the skepticism that surrounded me was truly overwhelming. I could not believe that people thought that I actually had something to gain from this. Although every part of my history says the contrary.
      I shake my head, and wonder why people would do this to other human beings. I truly have no idea why physicians, scientists/researchers, writers, would ever do this; create a distrusting relationship between a patient with a serious illness and their support system.
      For anyone that truly wants to know what living with RA is like, I refer them to this song: http://www.youtube.com/watch?v=6PRfDJQY_Y8
      I am not a heavy metal fan, but I heard this song and I watched the video. Everything about this song AND the video is my struggle with RA. Warning the song has a curse word.
      Shame on Woman’s Day and Shame on Web MD.

    28. Rose Balan says:

      Let’ s not forget the very real risk of increased cancer risk among RA patients. That risk includes lymphoma and other blood cancers. Lymphoma, myeloma, and similar cancers become more difficult to diagnose in RA patients because some of the symptoms as well ad the tests, are the same.

    29. Jenny says:

      I’m gone to inform my little brother, that he should also go to see this web site on regular basis to take updated from latest news.

    30. Prue says:

      Hi Everyone! First, Kelly I want to thank you for being the warrior you are and for all of you out there giving your feedback and support. I no longer feel so alone and isolated. I am new to the site and just read this article from WD. Yes, I may be late to this situation, but I find the WD article so off base and inaccurate that I nearly screamed. This county needs to wake up. I was happy to see Troy Aikman and the NFL in support of auto-immune diseases that I wanted to cheer. It is about time!
      I am a 60 year old woman who was formally diagnosed with this disgusting, vile disease in 2001 (a very long story). I have run the range of medications including antibiotic therapy and 2 clinical trials along with multiple doctors. Still have not found one where I live in central FL who is a true advocate for my RA or my hubby’s PA. They just want to take the standard 8 weeks assessment without really listening to what I was saying and coordinating my care with my PCP, ENT, and OPT and they did not want to discuss my treatment with me and have me be an active participant in my care. It was “I am the authority and do what I say”.
      This ugly, nasty illness has caused me to have vision / hearing loss, major joint damage, borderline osteoporosis because my meds have stripped calcium from my bones. So, I know 1st hand that RA is not some minor little problem and should never ever be treated lightly or in such a demeaning manner. Urgh….
      I am grateful and thankful I have my hubby in my life otherwise I do not know how I could manage from day to day. He researches potential therapies to ease the pain and other issues. He cooks for me so I eat right and does his best although is is far more ill with his PA and heart condition.
      I am also tired of hearing “you do not look ill”. I wake up and wonder how will I feel when touch my toes to the floor each day and know I can move forward another day. I try to keep positive since I work around a lot of people and I do not want them to see other person. The one who screams inside. I used to joke with people and laugh that I am way too mean (and I was always joking) to ever be ill or have anything get me down. Well, RA proved me to be an absolute weakling on more than 1 occasion in the many years since I was formally diagnosed.
      In closing, all my thoughts and heartfelt understanding is with each and everyone of you. You are not alone and keep up the fight. Educate everyone you know whenever you can. Knowledge and education can help change the perception of this disease and the approach to the care of people who suffer from it. Thank you!

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