We’ve all been there. The day you have something important — or even not-so-important — to do is the day you flare. Or the day you’re especially suffering from fatigue. Or the day the side effects of the meds really start kicking in. Or just the day you feel so overwhelmed with dealing with the disease that it’s hard to deal with anything else.
Sometimes we just get up and go anyway, with varying results depending on how well we can actually function. Other times we (once again) beg off with some excuse or other, then wind up feeling guilty on top of feeling bad.
But that’s mainly the physical effects of RA. What about the mental outlook?
I’ve been paid a major compliment. I’ve been asked to submit a guest blog. No details here to spoil the surprise, but I was very pleased. I mainly do this blog for myself but as a wonderful consequence I’ve made some great friends and occasionally something about which I’ve written has resonated with other people dealing with similar situations. The fact that someone else wants me to contribute toward their efforts on education about this disease is, indeed, flattering.
The topics they are suggesting are all positive. I get it. With all the negative, scary information out there, it is truly helpful to know that real people have overcome challenges and have victories (however large or small) over the disease. I was especially taken by Pollyanna Penguin’s “Life in the Day” post where she contrasted her life today with when she was first diagnosed. Her life is certainly not perfect, but through treatment and her own determination (and wicked sense of humor), she’s doing better.
My problem is that mentally, right now, I’m not in a good place to do something positive. As posted earlier, the Cimzia hasn’t been working. The Arava and Mobic are “supplemental” so they’re not supposed to carry the main load of combatting the disease, so for some time now I’ve been without mainline treatment and it’s catching up to me. It’s scary because I can sit here and tell myself that this is what my future is like — constant pain, chronic fatigue.
My doctor has switched me to Xeljanz but, due to a mix-up getting my recent cholesterol labs to my doctor, I haven’t yet started on the drug. Now that I’ve (hopefully) gotten the lab situation straightened out, we still have to go through the insurance approval process and then it will take a minimum of weeks and possibly months before the Xeljanz provides any improvement. In the meantime, I’m like the boy in the cartoon — it’s really hard to get excited about getting out of bed in the morning.
I intend to do the guest blog. In my case, it’s a mind-over-matter situation. (If you don’t mind, it doesn’t matter.) And I do have plenty of positive things to provide the fodder for the piece, I just need to remind myself of them.
Until then, I hope whatever gets you out of bed in the morning is a good thing.
Thanks for checking in.