It’s Sunday afternoon. I’m trying to get myself organized for the week ahead, so I sit down to make a list of things I have to remember to get done this week:
• Call the internist my rheumatologist recommended again to see if she’ll accept me as a new patient even though she doesn’t normally take my insurance.
• Find a lab close by and go get my bloodwork done. Remind them to fax the results to my rheumatologist.
• Call the mail-order pharmacy again to renew my enbrel prescription and arrange delivery since they never called me back last week.
• Call in a renewal for my plaquenil prescription, then go pick it up.
• Call the acupunturist to schedule an appointment for this coming Saturday to help battle the fatigue I’ve been feeling
• buy more calcium/vitamin D supplements
• buy more gauze pads for my shots regimen
Reading over the list, I suddenly get a prickly feeling along my spine and feel like this can’t possibly be right. How did this become my life? Then I remind myself that before I go to bed tonight, I’ll swallow another five pills and give myself a shot. Even though my RA is relatively well-managed at the moment, it’s impossible to escape the fact that my life is different than it was three years ago. I am living in the new normal.
Most of the time, this doesn’t bother me, but occasionally, something will trigger memories of my old normal, or the business of being sick will reach an overwhelming crescendo, and I will feel overcome with a sense of loss. In some ways, I feel like I don’t have the right to feel this kind of remorse given that I have gotten so much back. I know how much worse it would still be if I hadn’t responded to the meds I’m on.
But sometimes, it’s hard not to want to my old body back- the one that didn’t tire so damn easily or feel like rusted out metal if I sat in one position for too long. The one that didn’t require a regimen of pills and injections to keep it out of unbelievably debilitating pain and joints frozen with swelling and stiffness. The one that was strong, lithe and could endure all kinds of stress without breaking down.
More than that, I want the innocent mind that went with it. The one that wasn’t constantly calculating risk. The one that didn’t know to be worried about things like disability insurance, pre-existing conditions or how to afford long-term health care.
I also want my old to-do lists back. The ones that only had mundane, everyday tasks like grocery shopping, laundry and bills on them. I know my life wasn’t free of complications or sadness before I had RA, but looking back it seems like it was so much simpler. Dating sure as hell was.
Fortunately, I am in a place now where these moments of mourning come less and less frequently. When they do come, they tend to take me surprise, like one night a few months ago when I went to get my shot out- I suddenly burst into tears and felt completely bereft. Even sitting down and writing this article was enough to bring back some sharp memories of what it was like right after I was diagnosed. I let myself have a good cry, feel really sorry for myself, and then I did the only thing you can do- get on with life, even if it is in the new normal.