Developed at around age 8 or 9. My first diagnosis was at age 9, second diagnosis following biopsy at 16… the doctor that gave me the first diagnosis lost his licence in an unrelated incident and so, when the swelling temporarily went down, the diagnosis was all but forgotten about and ignored for years.
What advice would you give to someone who has just been diagnosed with RA?
Firstly, be persistent! With my diagnostic struggles, countless times having difficulty in school because even teachers couldn’t understand my limitations, struggling to get doctors to take me seriously… I have learned that nobody understands your body, limitations, needs, and abilities better than you. You need to be persistent in this, whether a doctor saying, “I don’t feel the need to run more tests” when you know you still need more answers and need to make them realize this, or saying “no” when your phys ed teacher tries to get you to do physical activity you know will harm you. You are in the drivers seat with your medical life, and you need to take responsibility for it. Never back down if you feel your health depends on it, and don’t accept answers that contradict what you know has to do with your body, even if it’s a doctor!
Do you use any mobility aids?
I am usually able to hobble around well enough on my own, but if not, I’ve got my crutches, or my mom and boyfriend to lean on.
How has living with RA helped to improve your life?
I’ve learned to never take anything, especially your health, for granted, because nothing is a given in life, even if it should be. With RA, also, I have found that a lot of things seem easier to deal with, and therefore give me a lot less stress, just because they seem insignificant in comparison to the battle that is sometimes a simple daily task. It’s a blessing in disguise, really, this ability to not give a damn about issues and therefore tackle them easier because I have this, “RA is worse, I’m getting through. This…? I could get through this while sitting on the toilet!”
Do you have any visible signs of RA?
I have scars from a biopsy on my right knee, as well as stretch marks on it from a specific flareup I had a few years back. They’re finally starting to fade! My right foot points inwards naturally because of deformation of the right knee, and my toes and fingers are starting to show subtle deformities. I usually have inflammation in my knees, fingers, wrists, jaw, and sometimes other joints, and my finger and toe nails are yellowing from my methotrexate. My hair is starting to thin from slight hair loss from mtx, but the only people who notice are those that know me very well.
Can you please describe some of your favorite coping strategies for living with RA?
When my dog was still alive (she passed earlier this year), I would cuddle her. She could always sense when I was in pain, and would even lick the joints that were bothering me the most. It always comforted me. I always felt like she somehow understood. Now, I run an RA blog. It helps, knowing I’ve made many people more aware of my condition. The feeling that I have done something good gives me a lot of comfort. Other than that, I will sing as loud as I can (unless my jaw hurts too much), watch movies, hang out, vent to my boyfriend, whatever.
Can you please describe your current medical (traditional and alternative) treatments?
I have been given many steroid injections and oral steroids, but none worked. Now I inject methotrexate weekly, though I plan on coming off of it because it isn’t helping and the side effects are too overwhelming for me to cope with. I smoke medicinal cannabis to help with the pain and to help eat when my jaw is acting up, and I do yoga with my friend, Becky, to try and keep a little active.
Is there anything else about yourself that you would like to share?
RA is a disease that you need to take control with. I find doing things that benefit the cause helps. I, personally, blog (if you are interested, feel free to check out my RA blog www.arthritisy.tumblr.com or my RA-anecdotes blog www.those-ra-moments.tumblr.com) to help spread awareness for the disease and get my feelings about it out. I find it helps, and every time I see, “I never knew RA was like that! Thank you for informing me” or “I have started donating to an arthritis charity in my area after seeing your blog,” it makes me feel so warm and good inside!