Five years ago, a few months before my 49th birthday, I went to bed feeling fine but woke up the next morning and couldn’t lift my right arm. It was a feeling I’d never had before. I’m a fit, middle-aged woman. I was exercising, walking, eating right -- all the things you’re supposed to be doing to stay healthy.
I’d had spine surgery a few years before and have a titanium plate in my neck, and I thought it must be related. I saw my spine doctor, and he said, “This isn’t your neck. I think you have rheumatoid arthritis [RA].” I’d heard of it, but I had no idea what I was in for.
He ordered blood work, and my numbers were off the charts. My rheumatoid factor was greater than 600 -- that’s an antibody present in the blood of many with RA. Normal is less than 15. I was told to see a rheumatologist.
In the meantime, I was in pain. I work full time. I have two grown sons and a very active life and couldn’t do anything with my arm. I couldn’t even hold a coffee cup. The pain progressed into my wrists and knuckles. They took X-rays, and thankfully I didn’t have any joint destruction. My spine doctor put me on a steroid.
After I was officially diagnosed by my rheumatologist, I was put on another drug, which had severe side effects. I started losing my hair, and it made me very sick. My rheumatologist switched me to a different form of the medication and the side effects were better, but it still didn’t give me enough relief. A few months later, my doctor added another drug, a biologic, and it’s that combination that keeps my disease under control. Now most days my pain is a one to two on a scale of one to 10. It becomes something you almost dismiss.
Even though my disease is well-controlled, I still have flare-ups. And if you’ve ever had tendonitis or bursitis in a joint, imagine that in multiple joints then throw a good case of the flu on top it. You feel like you’ve been run over by a truck.
Today, I’m doing really well. I consider myself very fortunate. I was diagnosed when my children were grown, and there are drugs that can slow the progression of the disease.
We talk about the pain and the physical aspect that comes along with a chronic disease, but the mental and emotional side is just as important. I wanted to connect with other people who could understand my journey, and there wasn’t a support group in my area, so I became a trained facilitator and started one for adults with arthritis and other rheumatic diseases. I’m also a volunteer with the Arthritis Foundation. By immersing myself in volunteering, it helps me.
Helen’s Tips for Living With RA
1.) Find your tribe
Seek people who can support you through your bad days and be there to celebrate with you on your good ones.
2.) Be proactive in your health care
Advocate for yourself. It’s not about your doctor telling you what to do, it’s about partnering and learning how to talk to your doctor to get the best outcome.
3.) Practice self-care
A lot of women are bad at putting themselves first. But it’s important to do something that feeds your soul. For me, it’s volunteering and giving back.
4.) Keep a positive attitude
We all have down days. By no means am I flying through this without getting depressed or getting tired of being in pain after 3 days of a flare. I just try not to get stuck there.
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