The Monday following Thanksgiving in 2008 I called my doctor for the referral to a rheumatologist. When they called me back they said they had made me an appointment. In January. I knew there was no way I could wait that long. At that point I could barely walk. It was all I could do to pick Avery up out of his crib. So I called every rheumatologist in the area until I found one that could see me the very next week.
At my first appointment with the rheumatologist, she took note of my symptoms – morning stiffness that lasted for hours, pain and swelling in almost every joint, fatigue, etc. She ordered blood work and X-rays of my hands, feet, knees, and hips. I went back a week later, on December 18, 2008, and heard those dreaded words. Rheumatoid Arthritis. Sero-negative RA, to be exact, which simply means that my blood does not show a rheumatoid factor. Turns out a lot of RA patients don’t have that. She said that most of my joints showed osteoarthritis caused by RA, but that there didn’t seem to be any damage yet except for a spot on my hip she wanted a closer look at. We agreed I would start Prednisone, but put off any other treatment until I weaned Avery. I wanted to breastfeed for at least a year, longer if I could. In the meantime, she ordered an MRI of my hip.
When I went back in the beginning of January, the rheumatologist told me that the MRI showed erosion points on my hip. She told me I needed to start aggressive treatment right away to prevent further damage. She prescribed methotrexate and started the insurance pre-authorization process for Remicade. (I’ll share more about RA treatments in a later post.) I weaned Avery in two weeks. It seems so crazy to say this, but at the time, that was the worst thing this disease had done to me. It robbed me, and him, of more time to experience that one-of-a-kind bond. I knew I would never have that again as we had already decided that Avery would be our last child.
Now, of course, I know that the decision to start treatment was the right one, as difficult as it was. Avery needed me to be able to do more than breastfeed him. All three of my kids needed me to be able to bathe them and play with them. They needed me to be able to pick them up when they fell down and hurt themselves. And let’s be honest…they needed me to be able to referee the fights that inevitably take place between siblings.
Unfortunately, none of the treatments I’ve tried since my diagnosis have been effective in eliminating pain or swelling. Alana and Alexis are five now and Avery is two and a half. I still struggle to pick up any of them some days and forget carrying them around. My wonderful husband, Jordan, has taken over the vast majority of housework duties and is usually the one to bathe the kids. I can’t always get in the floor or run around outside to play with them, but I try to make up for it with lots of snuggly story times.
We’re all still adjusting to this different life that RA has thrown us into. I think we’ll probably always be adjusting since this disease loves to mix things up. But one thing I’ve promised myself is that I will never stop fighting. If defeating this disease means a cure, I’ll probably never be able to beat it. But it will never beat me. Take a look at that picture up there. I have too much to fight for!
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information and should not be relied upon as a substitute for professional healthcare advice.