Have you ever been feeling terrible and you think to yourself: “It isn’t that bad” or “It will pass” or “It’s not as bad as I think it is.” I’ve been feeling terrible for a couple months and silly as it may sound, it felt good to have my awfulness confirmed by my blood test this week.
I get in this habit of adapting. It’s supposed to be a good thing, but I take it way too far.
My latest bout started with a severe flare in early April. So bad that I was out sick from work for several days. I was in a lot of joint pain, but struggled even worse with exhaustion. Between the pain and tiredness, I couldn’t think much—my brain was mush.
I called my doctor and he prescribed some additional prednisone. Gradually, I came out of the worst of the flare but never felt back to myself. For the last few weeks I have been resting a lot, feeling a bit like a faded version of myself.
But I tell myself stories: It’s been rainy and dreary, that will make you tired. And of course you feel achier because of the rain. And so forth.
It’s a coping mechanism. I don’t want to go around thinking all day how terrible I feel, how I don’t want to do anything but stay in bed and groan. If I tell myself stories, I’m able to get up and do what I need to do. And if I am busy and productive, I forget to remember how terrible I feel. So, it is helpful. Distraction and busyness have gotten me through a lot of tough times and severe flares.
But at some point I have to embrace the true story so that I can address the root cause, don’t I? Stories (even really good ones) won’t reduce joint inflammation or pain.
So that’s what the doctor’s visit is for—a bit of a reality check and re-evaluation. The day I got my blood drawn, I thought to myself that I was feeling a little better and maybe when I went to the appointment I would be happily surprised with my results. But no such luck! My CRP had skyrocketed in the short number of weeks since the last test to the highest point it has been in years. My blood and bones were screaming: inflammation!
And all I felt was deep down relief. Yes! That explains it! That is why my stories to myself were so unsatisfyingly inadequate. I was suffering. My RA was flaring and it was not my imagination.
The first approach we decided to try is to temporarily increase my prednisone a little (to help with my discomfort) and also my methotrexate (to hopefully address the RA attack). It will take a few weeks for me to feel if the methotrexate is working and then I will return to test my CRP and my liver levels (to see if they are handling the additional methotrexate). It is grand experiment!
I may be foolishly hopeful, but I really do not have a choice. I feel it’s much better for me to expect or hope the medication will work than the opposite. And I do have other options, such as switching to a different biologic medication.
One of the things that can be hard to handle is the mystery of it all. Why is my RA suddenly worse? Did one of my medications (or a combination of them) stop working? Is it some outside force? What could have caused this change and why now?
I’ll likely never have the answers. But I will never stop telling myself stories—the kinds of stories that get me through each day and keep me pursuing a life of happiness and fulfillment.
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