What advice would you give to someone who has just been diagnosed with RA?
Well I was diagnosed with JRA at 2 years old, so I’m not really sure what I would say except, this is not a death sentence, you’re just on a different path now. Parents don’t read all the Internet information on medical websites, they will drive you nuts. Talk to real people and other children as their experience will help you gain some perspective, but remember that each person who has RA will have different symptoms, and will require different treatment. Always voice your concerns in the doctors office, and if you don’t like your doctor, you can always look for a better one. My physician who treated me as a child is still in my life, and makes times to see me when I have concerns or good news! Your doctor will become family! Always do what’s right for your child, they will need a lot of love and support. This advice kinda blends over to those who are not children and were diagnosed in there late teens to older adulthood. For these people here, I would say that learning about your own diagnosis is the best thing you can do for yourself, for example in research articles, or other health professionals. I know everything about my RA now, it may take awhile, and remission does happen, so keep positive and take it one day at a time.
Do you use any mobility aids?
No, I do use mobility aids.
How has living with RA helped to improve your life?
Now this question is funny to me because, at first thought I was like ummm RA has ruined my life. My now that I think about it more deeply, I only had 2 years without it and I was an infant. So RA is my life, it has helped me learn a lot about myself and become a stronger woman in life. It’s what drove to me to become a nurse, because I had great nurses who help take care of me growing up, and I wanted to be just like them…and I am lol! It has shown me who my true friends are. When I was kid I got a wish from the WISH foundation to Disney world and it was amazing! It gives me a better perspective on life, meaning I try to live life to the fullest. I say try because sometimes my RA roundhouses my butt, so I remember to take time and relax to roundhouse it right back!
Do you have any visible signs of RA?
Yes I do. In my hands my knuckles are big, I have limited range of motion in my neck, and I walk with a “gangsta” limp!
Can you please describe some of your favorite coping strategies for living with RA?
My favorite emotional coping strategies are spending time with family, my new niece and nephew, my bigger nephew, my friends, my colleagues, and sleeping on my foam mattress!! I love watching comedy movies, laughing always relaxes me afterwards. Listening to music that goes with my mood, dancing, cooking, did I mention sleeping on my foam mattress ahh that is truly heaven! Oh and my Xbox 360, ipad 2, and PS3 also work wonders!
Can you please describe your current medical (traditional and alternative) treatments?
Ok so as I mentioned before I have had RA for 30 years. I have tried so much medications that it’s crazy!! But, during my last biologics drug simponi, I said I am done! My doctor said, you have been on everything except Actemra. I couldn’t believe that after 30 years of this rollercoaster, there was nothing left to try. So, I said fine ill try Actemra. Now, I know that everyone responds differently to medications but Actemra … Oh how I love thee! My CRP and ESR Levels were sky high and now they’re both
Is there anything else about yourself that you would like to share?
I would like to share that, YES. I am 32 and I know I look 16. I don’t use mobility aids because I had my hips replaced when I was 26/27. To open jars I either run them under hot water or tap the edges with a knife and it seems to work. Feel free to ask me questions and I will respond! My email is nursebee2009[at]gmail.com.