Last week, I had fully recuperated from my short trip to Florida – at least I thought I had. By Tuesday I wasn’t feeling very well. It was terrible timing.
My husband and I were driving seven hours to pick up, and help pack up our daughter at college, which also required staying overnight, and heading back home the next day. My husband likes to do all the driving, but I was concerned about food on the road, access to bathrooms, and generally feeling lousy. My pain was up, and my mood was down.
Tuesday wasn’t too bad. I ate less than usual, took a bit of a nap in the car, and was able to rest. I didn’t do any of the packing or organizing, instead opting to do my job of “staying with the car” at all times. That I could handle.
However, things were much worse by Wednesday. The pain was requiring Percocet (I always carry an emergency stash with me), and I was definitely not myself. I was down to my three preferred foods during flare-ups: Soup, baked potatoes, and dry cereal. (Weird, I know). I was thinking about calling my doctor because I felt so awful.
I got home okay and went to bed. Overnight, I needed more pain and nausea meds. By Thursday I was not feeling any better. So, I decided to call my doctor, and went about my day as best I could.
My doctor wasn’t around that day (a big bummer for me, since he gets me so well), but his colleague was. He called back around 6 p.m. on Thursday night. We reviewed everything, and then he told me that in his opinion, Stelara is not working for me (something I already kind of knew), and that I needed “to make a new plan.”
I explained to him there was no new plan. There is nothing else I can really go to, other than possibly Entyvio (vedolizumab), which my doctor had been avoiding because it takes so long to work. At this juncture, as my husband has pointed out, why does it matter how long it takes? Nothing else has worked either.
By the second and third days taking prednsione, I started feeling better. I’m mostly okay now, other than the occasional pain that is manageable, and eating well (maybe too well from Mother’s Day weekend!).
So, again I start to forget the pain and discomfort, and think about fitting in a walk on a sunny day. But it will start all over again, I know. And it feels like there’s nothing I can do to stop it.
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