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17 Responses to “The Truth About Rheumatoid Arthritis Info Will Be Told!”

    1. Lisa Emrich says:

      Good for you!!

      I know from personal contact that the social media folks at J&J take their outreach seriously. Enough so that they had me give a presentation on blogging and social media from the patient's perspective to their communications people last fall.

      I'm glad that you spoke up.

    2. Robin says:

      GOOD JOB!!!!

    3. Kelly says:

      Thanks Lisa and Robin!
      I know when we speak up, we represent lots of others, too.
      Together, we will move this thing forward…

    4. tharr says:

      You may just be one blogger, but you are truly an RA Warrior! Thanks for standing up for all of us.

      Terry

    5. MissDazey says:

      You are amazing..keep it up. Do you think that they will add a forum? Or new material? I was thinking when they said talk show format they might have question and answer page.

    6. Sara says:

      Go you!!!!!!!!!!!!! That's awesome.

    7. warmsocks says:

      Way to go!

    8. Kelly says:

      Thanks, guys.
      You are so cool. Like Liz said in her comment (FB), there are more of us… so we WILL be heard.

    9. Noelle says:

      Yahoo!!! Way to go!

    10. jamie says:

      Kelly, thank you so much for being the voice of many.

    11. Sandra Mafnas says:

      I just want to say that this is a great start about RA. It is so true that doing anything physical requires recuperation time. Something as simple as getting your blood drawn may require a nap when you return home. I have taken steroids and TNF inhibitors for years and I felt great……the outcome was adrenal and renal disease and early onset of macular degeneration. Now, I’m not 100% sure if these drugs caused it but funny I did not have it before all the trials of different medications which either had me vomiting, diarrhea, severe multiple infections, skin changes, severe hair loss…..to mention a few side effects! In the end I have learned to manage my energy, pace my self, found a great pain management doctor and support from my family. I refuse to take anymore RA drugs that suppresses and screws up my immune system and God knows what else it does. I refuse to take Rituxan because of the potential PML side effect which is not reversible and leaves you brain dead. I’m an RN and I still feel overwhelmed with the information or lack of information. Drug companies just want you to take their drugs…….but until there are safer drugs I won’t take them. Inform your family on how you feel, find a hobby, do your stretches and learn to listen to your body. I con’t tolerate 2 hours shopping only 30 min…..so I limit to 30 minutes. I pace myself otherwise I pay for it physically the next day or sometimes a whole week. If your depressed, which this can easily happen……find an outlet…..think positive as many are worse off than you…….take time to smell the roses and enjoy it…….talk to your doctor…….research what the doctors want to put you on…..make a list of questions and ask them. Personally, I found an outlet of painting which helped my depression and change of lifestyle. Also, try and find alternative ways of doing things. For example I loved walking my dogs but that became to difficult so I use my scooter to walk the dogs. They are tethered to the scooter and love it. They get out and get exercise and I get out and spend time with my dogs. I hope this helps.

    12. Jackie Titus says:

      I am so happy that I found this information about exercise. I was diagnosed about a year and a half ago and I had been exercising prior to my diagnosis. Over the last 8 months I have been progressively getting worse, even with trying new medications. I had noticed that every time I exercised I would have more severe pain and inflammation and so much fatigue. It’s been wipping me out. I thought that I should just push through it. I’ve been feeling so bad about not being able to exercise but I know now that by continuing to exercise I am only hurting myself more. Thanks for all of the great information!

      • Dear Jackie,
        Here’s a link to reply I just wrote to Sheryl which I think really applies to your question too! http://rawarrior.com/25-tips-to-manage-rheumatoid-arthritis-fatigue/?show=comments#comment-172492
        I’m sorry to reply late and I hpe you are still reading! Also here’s a link to a list of all the posts about exercise here on the blog: http://rawarrior.com/tag/exercise-with-ra/
        This disease has several different patterns it can take – most have the same experience as you with activity making active disease even worse. Finding the right medication that helps to suppress your disease will be key. And when you do, you can work out the balance of rest and exercise to know what makes you feel best and most able to live your life. Like you, I was always a person who excercised a lot and I’d much rather be able. Hopefully we both will get there.

    13. rob wilson says:

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

      Sorry, it is a pizza. It might be a “fruit pizza” as the mame of the picture indicates, but it is still a pizza.

      fruit_pizza.jpg

      Rob

      P.S. I enjoy your site and I have had serum negative RA for many years.

    14. Jim Keating says:

      I still exercise 6 days a week in a spinning class ETC. I did
      this for the last 20 years. I have been recently diagnosed
      RA. I have been able to continue my program and it has contributed positively to my disease. The pain goes away for
      hours after my work out. I know my lives quality would be drastically reduced if I had to quite. I hope the pain never
      requires me to quite. I have vowed to continue no matter what
      I guess only time will tell. I am keeping my fingers crossed.I have only been diagnosed 6 months ago, even though I believe I had it in my feet muck longer. They had diagnosed the feet as peripheral neuropathy.To end I hope I am one of the lucky ones

    15. kevin says:

      I am going through the hardest time of my life, i was a athlete and a hard worker but i feel RA took that from me, i am hurting my family as they see me in pain where i cant even get off the couch, i sit at the corner and am afraid for the first time in my life, to even go to the bathroom, bad DREAMS as i turn all night, i feel i lost the fight of RA

    16. Theresa says:

      I have had RA for 8 years I am 44. I have taken myself off all my medicine as I didn’t like the side effects. I soak my feet every night in Epson salt. I do yoga 5 times a week and it helps. I can live with a certain amount of pain but I hated how the drugs made me feel. My Dr thinks I am crazy but the yoga is amazing how it helps, some days are really hard for me and my instructors know about my RA and other days are easy. I found the more I exercise the better I feel.

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