It took a year of tests to finally confirm it: I have rheumatoid arthritis (RA). I began experiencing the symptoms about four years ago, and now I’ve added RA to the roster of other medical problems I have: dysautonomia, fibromyalgia, Sjogrens. The lining of my stomach has thinned, and I have a condition called Factor V Leiden that caused me to have a heart attack at age 48. All of my different health issues compound one another.
Having RA has changed my life forever, in all aspects. This horrible disease slowly eats away at you. For example, I owned my own design business for 20 years, but I finally had to sell it in 2015. I just couldn’t deal with the stress of the deadlines any longer, and my work was no longer at its best.
I had also been volunteering at a local nursing home with my certified therapy dog, Ace. I trained Ace myself, and I purchased his half-brother and trained him, too. But when my body began attacking itself, Ace and Deuce became my therapy dogs.
I used to be an outdoorsy person. Now, I have to be an indoor person. Due to the RA medication side effects, I can’t be out in the sun or else my skin will blister in a matter of minutes. Swimming and lounging in our pool used to be the Zen part of my daily routine. Now, because of RA, swimming hurts. The sun that was once my therapy now causes me so much pain. Gardening, too, used to be one of my favorite pastimes — herbs and flowers, mostly. I can’t do much of that anymore, either. And the 3-5 miles I used to walk daily? Now I’m lucky if I can make it around the block.
It’s also very hard to travel now. When we do travel, we see our grandchildren. Getting on the floor and playing with them used to bring me such laughter and joy. Now, it brings me great pain — physically, but even more emotionally. To not be the grandma I had always wanted to be is very difficult for me to accept.
That has been the biggest challenge of having RA: It has changed my life in ways that make me feel like I’m letting my family and friends down.
Ever since my diagnosis of RA, I’ve been trying medications to attempt to relieve my pain. Nothing has worked very well so far. And to top it off, the side effects are awful. I’ve seen a little progress with my hand movement, but the pain persists. It’s hard to know whether to stick it out with my current regimen or to try something else altogether.
Despite all the negative aspects of my condition, I’ve still been able to find things I’m passionate about in life. I’ve always had a need to create, so I began taking photos of nature, my dogs Ace and Deuce, and our grandson. Turns out I’m a pretty good photographer!
RA has changed the way I live my life in other positive ways: It has taught me to stay away from anything and everything that brings me stress, and I’ve learned that it is important to be your own advocate. When you’re living with an invisible disease, you have to speak up for yourself. I’m not afraid to do that anymore.