I shared the story of the beginning of my journey with RA in RA and Me
I’m back for part two. I went back to my rheumatologist in March. It’s a new one because the original married and moved, but the one I got in her place is so incredibly nice.
The Official Check-In
I got a new set of X-rays and labs done to check my joints and various levels in my blood. Those X-rays showed slight inflammatory damage in both hips, but all the other joints are good.
The labs came back great. My liver, which gets a daily beating thanks to the meds I’m on, is back to normal functioning.
I’ve been sober for over two years, so this is fantastic news. However, I’m seronegative for RA, so one of the few ways that my rheumatologist can see anything is through X-rays.
If I happen to have a lot of inflammation when I see her, she can feel it or see an elevated white blood cell count in my labs.
I attempted sulfasalazine (an anti-inflammatory) for a month, but had a delayed allergic reaction. It turns out my sister (who has lupus) is also allergic to sulfur-based medications, but I didn’t know this until after I got sick.
My liver enzymes shot up and I spent a week mostly in bed. I lost a few pounds because I couldn’t eat. I had a full body rash, which was not attractive. I even had to push back my batch writing for that week.
I ended up in the ER for severe right side pain and that wasn’t fun. It turned out I had a stomach bug on top of this mess.
My rheumatologist immediately took me off this medication and I’m never touching a sulfur-based medication again. Yikes.
The Daily Grind
I have issues every day. Some days, it is a struggle to get out of bed. I am either too tired, in a lot of pain, or both. Some days, I feel great and can tackle lots of things.
Over Spring Break, I went with the kids to a silo in a nearby park, which contains 120 steps.
No problem. I walked up, down, and went home. I didn’t do much for the rest of the day.
The next day, we went to Bernheim Forest to see the Giants. They are large wooden structures, but this required lots of walking. We walked a bit over three miles. I was tired when we got home, and my right knee and hip had hurt a bit off and on.
I spent the next day in bed. I was exhausted. Everything hurt and I kept dozing off. I didn’t do much besides showering. Even so, I don’t let this hold me back. I have to live my life and do things.
My immune system is garbage but at least I won’t get malaria. Plaquenil has taken care of that. However, if you’re sick, I’ll probably catch whatever it is. Don’t even look my way…just kidding.
There’s still a lot that I want and need to do. Life doesn’t stop when you get a diagnosis such as rheumatoid arthritis. It changes and some days are tough, but I am not stopping.
My grandfather managed to live a full life despite his medical issues, one being RA. That’s my goal. I want to do fun activities with my kids, yoga, and other things. I just have to take breaks and otherwise care for myself. I have to listen to my body.
I’m trying to see this diagnosis in the best way I can. I have a lot of support, a great sense of humor and a good rheumatologist. Next up is a local walk for autism awareness.
It’s Not Always Easy
I took Julian and Lily with me to the March appointment- there was no school due to the teachers protesting in Frankfort. They were a little bored, but I think they may understand a little more what is going on.
When you’re a kid, it’s hard to see a parent in a lot of pain and/or tired a lot. This is even worse when you don’t get why. They have been a bit more understanding since then, so I guess it paid off.
On the days I can’t do much, I try my hardest to make things as easy as I can on them. I might ask them to help with laundry or other smaller chores, but that’s it. They are used to this because of the migraines, but it doesn’t make it easier.
I move slowly and the boys jokingly call me a turtle. I just tell them that the turtle can’t make dinner if she moves too fast and they get quiet pretty quickly.
Having RA is not easy but I choose to find a way to get through it, even on the bad days.
Are you a parent with a chronic condition? How do you handle it?