By Tami Borcherding, as told to Sarah Ludwig Rausch
I was diagnosed with rheumatoid arthritis (RA) 10 years ago, the summer before my first grandchild was born. Before I went in to see my doctor, I knew something was going on. A couple of mornings, I couldn’t move my hands because they were so clenched and stiff. Fortunately, my doctor diagnosed my RA early, so before I would have gotten to a point where it was really difficult, I was already on a regimen of care.
I didn’t know much about RA at first, so I did lots of reading. The biggest thing that left an impression on me though was something my doctor said: “How you handle this determines how it progresses. You need to determine the path you want to be on.” I decided that I could either sit around and be sad that I have RA, or I could just say, “So I have RA. I need to still move on. There are a lot of things in my life that are good.” I made that choice early on, and it has worked for me.
With RA, every single case is different, and it progresses differently too. On the outside, you’d never know I have it, and for the most part, it doesn’t impede what I do. RA used to affect mostly my hands, but I don’t have it there as much anymore. I credit that to all the sewing I do. (I’ve made 1,200 masks for our local hospitals in the last 10 months.) Now the joints in my feet are what’s affected the most. For the last 2 years, I’ve been feeling it in my shoulders, too.
I’ve had a few flares over the years where I wake up and can’t even get out of bed for a while. For the most part, I don’t have much pain in the morning, but I’m stiff and sore if I use a lot of joints during the day. I know now I need to stop doing something when I can tell it’s really wearing on that joint. But I also know you either use it or lose it — I have to move through a little bit of pain because if I don’t, my joints will get stiff and I’ll lose mobility.
My RA doctor said that he’s noticing my joints are starting to get a lot more wear, so I don’t sit for long periods because I know it’ll be hard to get up. Getting up from the floor is difficult. The pain in my feet is bad enough that I know I can’t use them for balance as much as I used to. That’s a little different, but it hasn’t really stopped me from doing anything. I know that may come, but for right now, I’m going to take it and be positive about it.
I retired 2 years ago, but I was a preschool teacher for 35 years, and that was a blessing for me. I needed to hug the kids, get down on the floor with them, and hold them, so it forced me to use my joints. I think that’s a big reason my RA hasn’t been as painful as it could have been. Before the pandemic, I helped the school out when they needed extra hands, because I like to keep busy.
I have a music degree, and I used to sing for public events like weddings. I don’t sing anymore because the doctors think that RA settled in my vocal area. That was a tough one. But little kids don’t care if I sing well or not, so I can still sing with them and they think it’s wonderful.
Right now, I’m on a regimen of methotrexate and sulfasalazine, and they have worked for a number of years. I had two medications fail before that though, which isn’t fun. First, I had to be weaned off the current medication for 2 or 3 months. Then I started a new one, and it took a few months to know if it was working or not. You can also be on a medication and it can eventually stop helping. I’m grateful what I’m on now is working, but if it ends up failing, my next one will be an injection.
I go in for bloodwork every 3 months to make sure my meds are working and twice a year for a physical. I also have a bone density test every 3 years because RA really affects the strength of your bones.
My husband, Lynn, was diagnosed with cancer in 2017. He says we’re taking care of each other now. With COVID, we’re not out and about like we were, and I can tell if I’ve gone a couple days without doing much. I wake up in the morning and think, “I’m not moving very well. I better get busy!”
My doctor gave me hand and movement exercises that I do pretty religiously. I’m also cautious about my diet. If I have a lot of dairy for a couple days, my joints are stiffer and puffier, so I limit dairy, chocolate, and red meat. Heat helps a lot. I’ve worn out two heating pads. We even invested in a hot tub about 7 years ago, and it really eases the pain.
I think a good attitude helps. I know I need to make the best of everything I do. If there’s a little pain, I remember there are many people who are hurting a whole lot more in the world. I can’t live in fear that someday I’m not going to be able to walk very well or that I won’t be able to sew. I can now, so let’s go!
News – A Day in the Life of Someone With Rheumatoid Arthritis