Eight years ago today, I became a Rheum Mom. Well, not exactly. I did become a mother to my older daughter, Scarlett, who has grown into one of the most amazing people I know. My RA, however, had been in remission for about four years, and I had been off all medications for two years by the time I first held my beautiful babe.
Four months later, I began to feel the heaviness in my joints and fatigue that is unique to new parent fatigue. It began to affect my work and my ability to mom. I begrudgingly trekked to my Rheumatologist’s office and restarted Celebrex and the hated methotrexate.
At this point of my life, I didn’t call this disease “my RA.” In fact, I rejected it. I knew enough to listen to my body and balance my activity and rest, but I did not want to identify myself by this disease. No matter how head-strong and optimistic I was, however, my body had different plans.
Despite feeling somewhat better on maintenance medication, my symptoms continued. My rheumatologist explained that I had probably moved from the “flare and remission cycling” form of RA to my symptoms now being a chronic condition. These symptoms could stabilize, but would more likely increase over time, which meant my abilities would decrease over time. That was not what I wanted to hear. And, as stubborn as I am, I attempted every alternative approach to managing the condition. Nothing worked. By the time Scarlett had her first birthday, I could not carry her up a half flight of stairs in our split level home.
Up until that point, I had declined my doctor’s advice to begin biologics. The biologic medications had scary side effects and I just wasn’t ready to get that serious about a disease I still did not accept. But I had to draw the line when it came to taking care of my child.
About six months after I started biologics, the unthinkable happened – I got pregnant. I had already resolved not to have any more children – it was challenging enough to take care of the one I had. To make this a double whammy, I was on a pretty high dose of methotrexate when I got pregnant, meaning there was a high risk of miscarriage or birth defects. That pregnancy was a nightmare. Not only was I in constant fear for the child growing inside me, but I had active disease my entire pregnancy, and had a major bout of depression to top it off.
My little Rose was born perfect – and has been a major blessing in my life. Sometimes I wish I had named her “Joy,” because that is what she has been. What hasn’t been joyous is the progress of my RA since she has been born. I was back on medications a week after she was born, and at four months I had such a bad flare I was nearly incapacitated. I will describe the nightmare of that situation in a future blog.
That experience is what changed my life more than anything. I had to face the fact that I had a chronic, progressively disabling condition. This condition would affect my ability to be a mom, no matter how strong or optimistic I was. This is when I had to think about how to talk to my kids about my limitations, how I would have to change my plans to be mother of the year, how I had to learn to feel blessed with every experience I do have with them. This is when I officially became a “Rheum Mom,” and I have been learning on this path ever since.