Yesterday was not my finest hour. After several days of really cold weather and the pain and stiffness that comes with that, we had a strange weather day that started off oddly warm for January but with constant rain and then progressively got colder. I can’t win, big shifts in temperature seems to have an adverse impact on my migraines and damp and rainy weather is as bad for my joints as brutally cold weather. I really need to live in the desert.
I was in pretty good spirits though because it was my infusion day. Infusions of Remicade generally make me feel significantly better for a short period of time. I also made a quick stop at WW and had a really good weigh-in, losing 3 pounds and since I’m back on steroids (foreshadowing to explain my emotional swings) that’s a pretty big deal.
Here’s where it all went down hill. I do my normal Starbucks run before hitting the Rheumatologist office and get my Chai Latte and then arrive for my appointment about 15 minutes early. I check in and hand the office Lady my new insurance card. Office Lady is usually very pleasant and nice with me, she must have been having a bad day because today she was pretty short and abrupt or maybe I was the 20th person this month to make this mistake, I don’t know.
Apparently, I was supposed to give them my new insurance information well in advance of my infusion appointment. This actually makes sense thinking it through now but honestly, I hadn’t thought of it and nobody said anything to me. Even when I talked to the infusion nurses last month who do the insurance billing and informed them my insurance was changing. They never said “make sure you call us with your new info as soon as you get it” at least I don’t think they did.
Office lady said things to me like this:
- You signed the infusion agreement so you knew our policy
- We didn’t just make this up, it’s always been the case
- She (meaning the infusion nurse) has a lot of patients today and she’s by herself so I’ll have to see if she has time to make phone calls for you today and make this work but it’s going to be a while and might not happen today even if you wait
- You do understand that when a policy changes everything starts over again don’t you?
I asked if I could just make another appointment for next week and then call to verify that everything was authorized and she said they would call me, the nurse didn’t have time to do that right then. I felt so demoralized and upset.
I left the office and went back out into the rain to sit in my car and just break down and cry. I’m not a big crier usually, maybe over movies about dogs or sick kids but not over conflict or confrontations. After spending the rest of the day in bed with my nose buried in a book this is what I’ve determined upset me
First, I was highly disappointed because I was counting on that infusions for some relief. The constant discomfort that may be better on some days then others is still always humming there in the background and I greatly value any hope of relief.
Second, I am riddled with self-doubt because some of my medication is making me stupid. In my past life I would not have taken being talked to the way she talked to me and I would have argued her points. I’ve been going to that practice for over 2 years and I’ve never been updated or reminded of their policies and I had in fact had conversations with their staff just recently about my insurance changes with no instruction on how to proceed with their office (I think) but truthfully, they might have told me. One or more of my medications seems to be impacting my memory and processing skills.
I frequently can’t remember the simplest of things. I will read a book or watch a TV show and within a couple days forget the whole thing and not even remember reading or watching it. Simple things like following a recipe is sometimes a struggle for me because my mind wanders. I don’t think they did tell me because insurance stuff is stuff I write down since I have so much of it swirling around me but I doubt myself all the time now.
Finally, I can’t take steroids at all. Even a small dose. I was in so much pain the past week I had started 5mg of prednisone again which is what my doctor instructed me to do when I would have a flare but I’m certain that is the cause of my emotional response.
Now here I am still waiting to find out when I get my infusion. I won’t be able to schedule anything until next week because their office is closed today and they obviously didn’t call me yesterday afternoon. I’m so over my whole world revolvoing around this stupid disease.