When I was pregnant with my daughter, who's now 20 years old, I started experiencing swelling in my hands and feet. But I just kind of played it off. I already had a six-year-old son, so pregnancy wasn't new to me, and I figured, well, I'm pregnant, some swelling is normal. No big deal. But after she was born I started getting really bad headaches, to the point where I couldn't even tie my own shoes. Nothing made the pain go away. It was almost like a migraine, but I wasn't getting sick the way some migraine sufferers do.
Again, I figured it was just exhaustion and everything else from having two small children in the house, until one night when my daughter was crying and as soon as my feet hit the floor when I woke up to go and check on her I knew something was definitely wrong with me. I couldn't walk. I couldn't do anything. The pain was just unbelievable.
I went to a neurologist, because we thought that the severe headaches might be a sign that it was an issue with my brain. But the neurologist basically said that I had to go to bed when I was tired and wake up when I wasn't, and I'm looking at him like, "Okay, I have a six-year-old and a three-month-old. That's not an option."
My dad was diagnosed with RA later on in life, in his later fifties, or early sixties, and he finally said to me, "You know, Dorothy, my hands and feet had pain like that, too. Maybe you should go see my rheumatologist." I figured it definitely couldn't hurt, and was sort of at my wit's end, so a couple of months later I went and saw this rheumatologist, and even as I'm just sitting in his office and he says, "Okay, so you have headaches at this time and that time, your hands swell at this time, and then this happens ... " and he just laid out all the symptoms and made it clear that he believed me. I just burst into tears, because for the first time in a while I could say with certainty that I wasn't nuts. There really was something wrong with me.
Even though I was relieved, in a way, to have the diagnosis -- at least we knew what we were facing -- that didn't make the day to day of living and working any easier. My daughter danced, my son was in sports, so that took up my weekends. I guess I'm not the kind of person who thinks, "Okay, I'm sick. I just have to sit here." My dad wasn't like that, and neither was I.
Thinking back, I remember that me dad always complained that his shins hurt. Back then, I'd be like, "Really? Your shins hurt?" But now, I know what he was talking about. He passed away six years ago, but I still take a lot of lessons from what I learned from him, about RA and life in general.
If you have RA or any autoimmune disease, keep educating yourself. You have to know about it, you have to know about the newest medications coming out. Of course, no two RA patients are alike. There is probably nobody walking on this earth who is taking the exact same combination of meds, in the same doses, that I am. You have to be able to trust your physician. Listen to him. And if you don't trust that guy, find another one, because there are other doctors out there. That's really my biggest thing: you have to be able to talk to your doctor. Get a plan, set a goal.
Every year I set a goal. This year we're doing the Run/Walk to Milwaukee Irish Fest 5K, which benefits arthritis. Last year we did the Color Run. Not that I'm running it. If I can run, I run, but if I can't run, I'm walking. Either way, I'm going to finish it, because in my head that's my goal this year.
Set goals even for your kids. If they're small and they want to do something, let them do it. They'll know when they have to stop. Your body's going to tell you, "Okay, enough's enough. I can't do this." But give them that chance. Don't make them live in a bubble, and don't live in a bubble yourself, because you have one life, and this is it.