Growing up with mom’s RA
Every day, y’all write comments, messages, and emails that make such a huge difference in this community. But they also have an effect on me. Tonight I found this gem:
Hi all! I don’t have RA, but my mother was diagnosed after she got pregnant with my brother 15 years ago.
I just wanted to let you all know that sometimes your relatives and children CAN understand how hard it is for you to live with RA and the resulting systemic health problems. We might not have felt your pain, but we’ve seen how it can change your opinions and plans and bodies so drastically. Then we educate others who we meet just because caring about someone with RA is ingrained into our lives. Being open with family and friends helps to raise awareness, because we go on to understand how drastic this disease is. We then add more people to the ranks of those who don’t understate the effects of RA and the sacrifices you all have had to make.
I was raised with the knowledge that my mom would have a hard time doing many things. I was there on the receiving end of the mood swings brought on by prednisone dose increases. I worried about her being harmed when she was a test subject for Enbrel, and was overjoyed when it made her life so much better. I try to help my dad understand why the housework can’t just be my mom’s “job”; that she can’t work because SHE HURTS, that housework actually is WORK. I’ve stepped up to the plate after two feet and hand surgeries. I’ve seen how every other health problem imaginable has caught up with her. I’ve seen how she still lives her life and tries to be a warrior. I know I could never do it. I respect her so much for not letting it get her down. She has days of depression, but she tries to wake up the next day and walk tall through her life and hardships.
Long soapbox post short, some of us see your pain and understand to the best of our abilities how much RA affects your life. We can be aware, and we try to make other people understand that RA is different than OA and that it’s not “just a little joint pain”. We just need you to share with us. Tell us how you’re doing when we ask. Tell us if you need help. Share with us treatments you’re considering. Most of us want to help, but we don’t know how to at first.
Take care and stay strong.
What could I add? This one makes me cry. She (?) hit all the right notes and some I hadn’t thought of yet. I have two grown daughters and three sons. How much of this will they say again in 15 years?
On being discovered with RA: telling her secret
Here’s a comment from this week that really grabbed at my heart. I get lots of letters and comments about ways we can make a difference in understanding about RA and the difference that could make in our lives or for investments in science toward a cure. I call it “RA Awareness.”
OK, here’s my pledge after my intro:
I am a working actress who has RA. I’ve had 6 operations on my spine to keep me walking. My feet are deformed and I have RA throughout my body. There isn’t a joint that has not been affected. When I can, I’m still working as an actress. Fortunately, no one has discovered what I go through on set. My mind set is now different. It will no longer be a secret.
My pledge to everyone: At the moment in time that I become famous (hopefully), it will be my goal to inform the world about the Real RA. Hopefully I can accomplish this before it wins out over me. I’m 63. Everyone keep fingers or whatever isn’t hurting at the moment crossed for me!
She says people with rheumatoid disease/arthritis (PRD) are athletes!
Lately, more and more comments come from those who don’t have RA. Here’s one I just loved of course since I miss exercise and some who don’t know me misjudge me on the matter:
Your essay makes clear that every RA sufferer is an athlete by default. The disease forces every patient with RA to battle against it physically. How daunting, yet how triumphant your spirit! Thanks for sharing your story and making RA more understandable to those of us who aren’t RA warriors.
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