By sharing key information with their doctors—such as how rheumatoid arthritis (RA) affects their daily lives—these women have discovered the treatments and strategies that are helping them thrive. Read their tips here to get the most from your days!
“Make your free time matter!”
3-year RA patient: Lauren Marchi, Denver
- Apply sunscreen liberally. Sunburns are even more painful for those of us with a chronic inflammatory disease like RA. On a trip to Florida, I got a sunburn on my legs that sent me into full flare-up mode. Lesson learned—I will put sunscreen on before I leave the house and reapply once I get to the beach to avoid the weeklong flare-up next time!
- Get disability passes at theme parks. A tip for going to theme parks with rheumatoid arthritis—get a disability pass or a wheelchair (or both) for free. At Disney, I simply went to the Guest Services office and explained my condition. They were very sympathetic and provided a wheelchair option and a ticket to pass most lines. This allowed me to last a whole 12 hours at the “most magical place on earth.”
- Traveling by air? Pack meds in your carry-on! Little did I know how painful of a mistake it would be to put my medication in my checked-in luggage. I had no idea that the airlines would lose my bags! By the time I received my luggage, my very expensive medication had spoiled. Days later, I had a flare-up, and I could barely stand the pain! From now on, I’ll pack my meds in a carry-on.
|Photo by Jeremy Madea
“Find what works for you!”
4-year RA patient: Barbara Searles, Lancaster, PA
- Hit the pool. I switched last year to a more gentle form of exercise—water exercise. I can ramp up or down depending on how I feel—and no one in the pool is judging me because it’s all underwater!
- Go to the pros for blood work! I decided to make friends with some people who do venipuncture at a local diagnostic lab location. The lab was fantastic! Friendly, professional, no waiting and most of all…really, really skilled at venipuncture: minimal pain, less bruising and no lumps.
- Manage your meds. Consistent medication is a big help to my overall wellness. So I downloaded a medication reminder app to my smartphone. It’s my savior!
- Try an acupressure mat! For 10 minutes before I drift off, I lie on one. It seems to calm my nervous system and deepen my sleep.
“Give yourself some TLC”
7-year RA patient: Amanda John, Greensboro, NC
- Nap! I came home from work the other day and I was exhausted and achy. All I wanted was to lay down. So I did! I slept for 30 minutes and went out to meet a friend feeling like a new person. Good mood and less achy! Naps are a key part of my treatment arsenal.
- Have a home spa day. At least once a week, I set aside time for at-home spa day. First, I take a long hot bath with Epsom salts. After I am out of the tub, I soak my ankles or wrists in a bucket of hot water with Epsom salts. This may be my favorite part—it feels so good on my joints!
- Try giving alcohol the boot. Certain types of alcohol increase my joint pain, namely beers and higher-tannin wines. I decided to experiment and eliminate alcohol for a month. Joint pain reduced, and I’m sleeping like a baby!
“Become your top priority”
9-year RA patient: Cathy Kramer, Naperville, IL
- Have a mantra for the tough days. During the most difficult months of my RA journey, I had swelling, pain and stiffness from my neck to my toes. But I woke up every day and repeated throughout the day, “My body is always working toward optimal health.”
- Flaring? Be kind to yourself. Last week I experienced a pretty rough flare in my hip. Instead of freaking out, I remained calm and realized that it was a sure sign I needed to take time for myself.
- Start a blog. I felt a strong desire to share what was happening to me. Never did I realize I would find the community of friends I have discovered.
1-year RA patient: Amber Pierce, Dallas
- Find painless alternatives. I pick up my son, Banner, by wrapping my forearms under his armpits, rather than using my hands, which strains my wrists.
- Use everyday items to help. Instead of getting all the way down on the floor, I use small step stools to sit with Banner on the floor without having to get all the way down there. Getting off the floor is a challenge, so the stool (one of Banner’s!) gives me better leverage to get up.
- Let your partner know when not to touch. For Amber Pierce, having her husband, Sam, come to doctors’ appointments so he, too, can get educated about RA is key to his understanding that, sometimes, just a touch can be painful. So when Amber’s wrists are inflamed and swollen, she redirects her husband’s hand if he tries to hold her hand. “Or, I simply tell him I’m in pain there.” And when evening fatigue and achiness make her feel like the flu is coming on, “even a caress or a rub can bother me,” says Amber. “But because Sam knows all about what I experience with RA, he doesn’t take it personally and asks what he can do to help.”
The couple has also had to learn what works for them when they are intimate. “There are certain positions that are more comfortable for me,” says Amber. “And there are limitations to how far my body can stretch or bend. It’s up to me to communicate those limits.”