Back To Square One. Again.
It has probably happened, at least once, to everyone who has ever been diagnosed with rheumatoid arthritis. One day you start to notice that your medications don’t seem to be helping as much as they used to. Or maybe a few weeks have gone by since you started a new medication and you realize that they never started helping in the first place. Or maybe they medications did help, but the negative side effects were too much to live with. And so, as the days go by, you slowly start to feel worse and worse until you and your rheumatologist have no choice but to make the decision to try something new. And that feels like going back to square one.
To be fair, moving on to a new medication or treatment plan isn’t truly going back to square one. After failing a medication or having negative side effects your rheumatologist has a lot more information to work with. He or she has a better idea of what types of side effects you are likely to experience and what types of medications may or may not be effective for you, so your rheumatologist can make a much more informed decision on what to try next. But, because trying a new medication can often be a very frustrating weeks- or months-long process of trial and error, it can certainly feel like going back to square one. You suddenly find yourself feeling crummy, with very little energy, and facing a new treatment, with new risks and side effects, and a great big unknown out in front of you.
It happened to me for the first time about a year after I was diagnosed. At first it seemed like the Remicade infusions were helping, but eventually we realized that I was still going downhill. So I had to take a deep breath and start all over again with Enbrel. That was more than five years ago. And though the combination of methotrexate and Enbrel did eventually get my RA symptoms well under control, a lot has changed since then. I stopped taking methotrexate so that I could safely conceive, carry, and breastfeed my two sons. But recently I realized that it was time to go back to square one. Again.
It happened when my second baby boy was almost three months old. Breastfeeding was going really well, but I was struggling more and more each day with RA pain. I knew that it was time to wean so that I could start back on the methotrexate again. That was obvious. But, for some reason, I was so very reluctant to wean.
Of course I felt sad to loose that special bond with my baby boy. And I also felt a bit disappointed to give up on nursing when the actual breastfeeding part was going so well (particularly considering that there is a lot of pressure to breastfeed – and, unfortunately, judgment for not breastfeeding – in the community where we live). But ultimately I knew, from my own personal experience with my first son, that there is so much more to motherhood than breastfeeding. And I also knew that giving up breastfeeding and getting my RA under better control would allow me to be a better mother to both of my boys. So at first I couldn’t figure out exactly why I felt so reluctant to wean.
Then I realized that, since we currently do not have plans to have more children, once I stop nursing I will have the whole wide world of RA medications available to me. My body will be my own again and I can do whatever it takes to get me feeling as good as possible. And I am honestly excited about the possibility of feeling better than I have felt in a long, long time. And mostly I feel optimistic that I will feel better and have more energy for my boys soon.
But there’s also a part of me that’s a little bit scared because it feels like going back to square one. Again. Because what if I don’t feel better? What if the treatment doesn’t work the way it used to? What if I am still in a lot of pain or dealing with large amounts of fatigue despite being able to take all the meds – only now I have two little kids to raise??
I am trying to stay positive and keep looking forward, the way I always do. I’ll take things one day at a time – or one hour at a time if I have to. But I still have to admit that, at least sometimes, forward can seem a little bit scary.
Have you ever had to go back to square one?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?