But here I am, trying to alleviate their fears before the phone line starts ringing. Consider my daughterly duty done for this month.
Here's what transpired in the past two weeks:
The day after Christmas, I came down with a cold. It was a real whopper - requiring plenty of tissues, cough drops, and the like. It lasted for a good three or four days - but finally by Wednesday evening, I was feeling pretty good. My Rudolph nose had subsided to a nice shade of pink, and I was able to return the kleenex box to its rightful spot in the bathroom, rather than keeping it by my side at all times. Then, on Thursday morning, I felt a little bit of joint pain setting in, but it wasn't alarming and I figured it was just the residual effects of the cold. I took my normal pills, including my standard 5mg of prednisone every other day. But by that evening, it was like I'd been in a lupus flare for weeks - every joint in my body was achy and arthritic, and the strength in my arms and hands was non-existent. I went to pick up Deirdre to help her into her chair at dinner, and I couldn't do it. It was awful! Immediately, I was taken back to those days of immobility and constant, agonizing pain...and I was concerned.
Per doctor's orders, I took another 5mg of prednisone that evening, and planned on taking 10mg the following morning, hoping that at least I would be able to function semi-normally. I secretly had hopes that the increased dosage of prednisone would nip the disease activity in the bud completely, but I was trying to concentrate on one day at a time. (Look at how I've progressed in my thinking from the early days!)
The following morning, again, I woke up with the joint pain, took my 10 mg, and waited for those magic little pills to do their thing. Eventually they did, but I could tell that the joint pain was still there. It's that feeling where your joints don't hurt, but there's a lurking stiffness that tells you, "Beware, lupus is the background, ready to strike as soon as this medication wears off!" So I knew I wasn't in the clear, but at least I was feeling better. By the evening, that stiffness was gone, and I felt like myself again. The next morning, I awoke without a joint pain in sight...and I've stayed that way for a week. I'm back to my old medication regimen (5mg every other day, plus plaquenil), and I haven't felt as much as a twinge. No extra fatigue, no swelling, no nothing!
But for a little over a day, I felt everything rushing back - just like the old days. The pain, the shock of not having use of my hands, the frustration of waiting until the medication kicks in. All of it came back...although there were a few missing parties.
Who wasn't present and accounted for? Anxiety, fear, or anger. I wasn't worried that the pain would go on forever. I wasn't thinking about the vacation I was going to have to postpone three weeks down the road. Nor was I mad or resentful that lupus had edged her way into my plans. I recognized that my body had been taxed a bit too much (too many late nights tidying up the post-holiday mess in the house coupled with my sneezing and wheezing), and it was crying out for help. The best thing to do was to respond accordingly. Here was my strategy:
1) I did not hesitate to make a change to my meds. I didn't wait for my pain to get any worse. As my doctor instructed me, I took action immediately. I didn't ignore the symptoms - crossing my fingers that the pain would go away, nor did I act like it wasn't that bad.
2) I did not overreact or freak myself out about the possibility of having to cancel plans in the coming days or weeks or months. While I do recommend preparing yourself for that fact when a flare does come on, in this situation, after just a few hours of pain, it would have been detrimental for me to fret about the longish-term consequences of a flare that hadn't yet arrived. I needed to focus on the present, and the present only - which leads me to #3.
3) I did assess why my body might be taxed, and what might be causing the added stress, rather than just brushing over or ignoring the facts. In the old days - I would have ignored the late nights, and told myself that a measly old cold shouldn't bring me down. But now I know better!
4) I did put myself to bed more than an hour earlier than normal, learning from the self-assessment I mentioned in #3. I applaud myself for this, as should you when you make such a move, because despite the fact that the second dose of medication had temporarily alleviated the pain, I avoided the trap of capitalizing on the prednisone high by doing end-of-the-day tasks, and instead, just hopped into bed at the earliest opportunity.
5) I did make a mental list of things that could be postponed on the next day's to-do list. I had a full day planned, and the more I could eliminate, the better chance I had of allowing myself to rest up, in order to let the meds work and my body recoup. The first to go - thank you notes (primarily because there was no way I was going to be able to write a single word), and the next - the load of laundry I had in the dryer. I also planned on postponing the pot replanting I'd been trying to get to all week. It all just had to wait - and to think that just the day before, those things had seemed so pressing. But perspective is everything - thank goodness, after 10 years of lupus, I finally found some!