How long have you lived with RA?
I was diagnosed at 29, but like many people I think I had symptoms that I didn’t recognize to be RA signs from my early 20s. When I was younger I used to wake up feeling like I was walking on burning glass. Turns out, that wasn’t normal!
What advice would you give to someone who has just been diagnosed with RA?
I have a lot of suggestions, and it’s not because I think I know everything it’s because I really wish that I would have found this blog when I was first diagnosed to learn from all of the others… so I’m just doing my part. Here are a few things that I can think of:
A good attitude will help with pain and emotional stress… BUT allow yourself to grieve too, because pretending like it’s not real is not good for anyone. I still have some ugly cries once in a while, and right after, I re-group and continue to drive on.
Educate yourself. Learn about everything you possibly can, you must be your own advocate.
Communicate: A lot of people don’t understand what you are going through. Figuring out the right way to share what RA is all about without throwing a pity party of downplaying its seriousness will help others try to understand. This will remove some isolation (sorry, this is common) that you may experience living with this disease. You’ll find that friends and family who understand make a world of difference! The ones that don’t might not be the friends you think they were…
Be forgiving: It’s ok to say no, and you really should rest when you’re tired. Things will be different, but different will not feel bad after time. It’s likely hard for you to understand that now, but you will…
Focus on the day. You can’t get caught up on how you felt yesterday or what tomorrow will be like. RA is such an unpredictable little monster. I used to put too much energy thinking I was finding trends in my health, but that used to just let me down when I was wrong.
Don’t let it change who you are. It doesn’t have to.
Do you use any mobility aids?
How has living with RA helped to improve your life?
I am really intentional with my time. This helps me focus on what matters most to me, because I don’t have unlimited energy. I also never know what the RA monster will deliver for me tomorrow, so time is just so valuable. It’s funny though, my intentionality might simply be choosing to do yoga, take the time to curl my hair (what a treat), and going for coffee with my husband. That could be it for the day… but if I prepare myself for that mentally… then I’m alright.
I don’t take anything for granted, and simple wins make me really happy. A nice walk on a summer day feels different that it did before.
I also have a lot of patience for others, even more than before, as similar to an invisible illness like RA… you just never know what someone else is going through.
Most importantly, I have learned who the most important people in my life are. They are the ones that want to understand, who haven’t given up on me, even after a million last minute cancelations… I’m so lucky to be loved the way I am.
Do you have any visible signs of RA?
Most people say they’d never know which is meant with wonderful intent. Sometimes I’m stiff, sometimes I can’t get up at all, and sometimes the fatigue across my face is so obvious it’s funny. I have actually had to take a nap under a desk at my office before.
Can you please describe some of your favorite coping strategies for living with RA?
Bikram Yoga has been a game changer. It’s a time dedicated where I know I’m positively contributing to disease. When I’m doing Bikram, I seem to forget everything else, and there is something so incredibly relieving about that. I leave the class feeling so balanced and normal. It’s like a little mental vacation.
I talk to my husband and friends. I’m lucky to have people who listen to me. It helps, a lot. I could probably talk more about it.
I really wish I knew someone in Toronto going through the same thing.
Can you please describe your current medical (traditional and alternative) treatments?
I take Methotrexate weekly injections which is better than the tablets (for me). I’m on Plaquenil which gives me terrible side effects, but I’m being put on Enbrel so hoping I can come off that one. I take Voltaren, Tecta and Folic Acid as well. I have found that the anti-inflammatory diet has been amazing for me. I am actually nervous to think about what things would be like if I wasn’t on this diet. Worth a shot if you are open to trying new things!
Is there anything else about yourself that you would like to share?
I suppose there is a lot to know about me! I am into writing and playing music, yoga, reading, walking my dogs, finding good coffee (sort of my bad exception to the anti-inflam diet), and LOVE the days when I get to pretend that I don’t have RA. It’s happened a couple times and it’s awesome. I am still learning, and it’s a struggle. I would love to find others close by (toronto) to connect with. Here’s my Facebook if you want to connect: https://www.facebook.com/nicole.mcphail.1