I am a woman, mother, friend, daughter, sister, Leader, advocate, employee, writer, and so much more. But I am living with the chronic illness of RA. I have lived with this illness for over 40 years now. I am here to share my thoughts and ideas with others that are living with RA.
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I don't get to meet a lot of people who 've lived with this disease for as long as I have - I was four when it first appeared, nine when I got diagnosed and am now well into my fourth decade with it.
Welcome to the site! I'm glad you're here.
Thank you so much for the warm welcome Lene.
I did have that same problem for a very long time growing up with JRA in a low income family. I did reach out to the local Arthritis Foundation a few times but was never given the opportunity for youth camps and never really met anyone with JRA that looked like me or understood what I was going through. It was my senior year in college when I met three beautiful women with JRA and RA. I was 30 years old. One of those women was a school mate that I had a Women and Religion course with and she was in her later 20's and was newly diagnosed. She didn't look like me, damage from the JRA, being newly diagnosed. But we hit it off real quick. Then I was approached and given the opportunity to help coordinate the 1st ever Women with Disabilities talk at the University and met the other 2 great women. The first was a young woman in her very early 20's, if at all. One of my many duties included putting together a female student panel with young women with disabilities and found her. She had the damage (sorry, for lack of a better word) and looked like me. We hit it off! And then there was an Academic panel with 2 women with disabilities and I had the great honor of meeting Mary Felstiner, author and Professor at San Fransico State University. She also has RA and the damage that made me identify with her as well. And she put the conference and me in her book called, 'Out of Joint.' It was difficult for me but freeing as well. I had a great transformation and new that it was my journey forward to do something for women with disabilities and esp. with Arthritis. So now I am a Founding Board Member of Arthritis Introspective. We bring the young adults or adults in their prime together to share with others like us who need each other. I know this has been a very long reply and may sound like a commercial or sales pitch. But that is not what I am trying to do at all. I just want to acknowledge that there has been little support for you and I and that there is now. And of course I am very bias about my group:) Please visit our website and become a member, join the forums, connect, find a support system locally or start one and come to our national Gatherings if you can:) The website is http://www.arthritisintrospective.org
I do apologize again that this was so long.I do want you to feel that you have lots of potential friends all over the US. And I cried when I found this site. There are many of us around. I love it:) And I am so excited for the future.
I checked out the website and that looks very, very cool. I get a lot of questions from people looking for support groups in their area and until now, haven't been able to refer to them to a source where they can find something like that, so this was very helpful.
And it's funny what you said about finding somebody who looks like you. Poking around the new site, I found a picture of a woman who looks remarkably like me (even down to the haircut) and it... it's hard to describe, I suspect you know how I felt, but it almost made me cry. I'm so used to looking different and by now, I didn't really think I noticed it anymore or even that it bothered me, but seeing that picture made me feel at home. Thanks for that.
Hi there,
I am 26 and I have been diagnosed with RA since I was 18. It was so comforting to here that someone has made it as long as you with RA. How did you do it? How do you feel? How was raising children, etc.?
I automatically think I'll be crippled by 40 because I will have had the disease for so long.
Thanks :)
Hi Jen,
I am glad you replied to me. I am also glad to have made it "this long!" I feel pretty good. I have pain and swelling and some damage due to the years. I wonder what kinds of medications you are taking? The medications that are out there now can prevent a good amount of that damage to your joints. I was so young with it and in a time where it was so rare for children to have JRA or Arthritis period, that they did not have as good of medications. I have been so lucky as to only have had both hips totally revised and then redone 2 and 4 years ago.
I am still raising my boys, 12 and 19 (almost 20). My 19 year old just came back home. I love my children. It was difficult with my 2nd son as he was bigger and my Arthritis hit me hard postpartum and I could not lift him. I had to get help from my mother and wherever I could. Their father is not in the picture at all and I am doing this without child support because he is MIA. That is another story for another site:) I work full-time and they are very flexible thus far. I feel blessed, but when it hurts, and it does every day, some days harder than others, I can get down. But I have met some AWESOME friends that have JRA, RA, Fibromyalgia and other forms that know what I am going through. We support each other and belong to a National Support system called Arthritis Introspective. We are having our 3rd annual conference here in Tempe Arizona in April where we meet other friends that look like us and understand what we are going through. And we are having some great activities that are accessible, like Sailing and Glider Flights, and some great educational sessions that give us more tools on how to live and cope with the effects of this nasty illness. You can get more info on www.arthritisintrospective.org. I also love this site because there is so much information available and people to talk with. I am so glad we have all this now. I take what I need and leave the rest. And in the past few years I have learned so much about my options.
Where are you located Jen? How are you feeling? What medications are you taking and activities do you do? I hope you don't mind me asking. I think the best thing for me has been trying to remain happy, and active and not letting others dictate what is going to happen to me and what I can and cannot do. I am strong and stubborn:)
Sincerely, Samantha
I am taking plaquenil, enbrel, and prednisone if I have a flare-up. The meds have made me able to live life again. I was scared but it was so worth it. My hubby gives me my shots once a week. Because of these meds I can lift my child :) I have been through a lot and I have damage in my hands, arms, and I can't bend my elbows that much. But, I have an amazing job, family, and set of supportive friends. :) Life is good. God is good.
You are so inspirational to me. I feel like I can live as normal of a life as I can with this disease :)
Thank you Jen. Yes you can live as normal a life as you can with this illness. Just keep up taking care of yourself, be active and get a great support system. There are times when it is not a great day or "normal" but it passes with life. For me it is better to not give in and just live. I try so hard not to worry about side effects, what I cannot do and when my time will come to and end and this keeps me going. And when other people, like you, think I am inspirational it perks me up. I just keep do what I can to learn and help others. I am here if you have any other questions or need to chat
You are doing great and keep it up! Hope you have a great weekend.
Samantha