Monday, January 13, 2014

Prednisone: Clawing my way back to 5mg

I originally had this post titled "Turkey Day Disaster, a.k.a the Lupus Party Fowl". But, instead, I decided to focus on the task at hand, which is to taper off the prednisone I had to increase due to said disaster. The goal: to return to my former lupus glory of taking 5 mg of prednisone one day, 0 mg the next. Oh, how far off those maintenance doses seem some days!

I wish I could say that over Thanksgiving, I did something really wild, crazy and fun to put myself back in a mini-flare. I wish I could say I ran a Turkey Day marathon, pulled a couple of all-nighters, partied like a rock star, went shopping from sun up to sun down on Black Friday, or even worked my fingers to the bone selling Pillbags. But alas, none of those are true. Party, I did not. Shop, I did not. Run 26.2, I decidedly did not.

What I DID do was travel. And miss a nap. And get a poor night's sleep. And that was about it. That's all it took to send me back to mini-flare land.

But I learned once again what doesn't jive with my chronic illness: relatively quick turnaround road trips that begin with a stressful send off, involve missed or less than sufficient naps, and include holiday festivities that sidetrack me from sitting in front of the fire sipping tea in my pajamas in order to recoup. I wish it weren't so. But it is.

The good news (no, make that GREAT news) is that I learned from my mistakes, and was able to put my wisdom to good use just a few weeks later. We had a road trip planned for the week after Christmas - a fun filled fabulous few days of visiting some of our favorite family in the Mid West. But we canceled it. Because it would, no doubt, have involved a wee bit of stressful travel, a missed nap or two during travel days, plus, plus. plus.

It was sad to cancel our trip. I got mad. I got sad. I cried. But amongst the tears, I promised myself that I would never have to cancel another trip because I wasn't properly prepared for a previous one.

So there. Emotional growth occurring right before your eyes. Who knew that was on the agenda today?

(Note: It really helped to make the decision to cancel our mid-west trip because our hosts were as understanding as could be when we said we couldn't make it. They wished me well, and hoped I was back on top soon. I can tell you this - canceling that trip will no doubt propel me to the top that much faster.)

So what went wrong the weekend of Thanksgiving?  Just the typical foibles that go along with trying to keep a chronic illness in check while heading into the holiday season:

Travel: I find traveling with lupus isn't impossible, it's just that my body tends to need a little more TLC than normal. So I try and prepare for a trip in advance and with as little stress as possible. Otherwise, I'll knock myself back before we even pull out of the driveway!  For this trip, I packed early, baked cookies the weekend before, wrapped gifts days in advance, and was more than ready for the day of travel. But when it came to the other stuff I was trying to cram in before we left, I hadn't done so well. I needed at least another day and 1/2 to get all of my work done. But when I couldn't find the time, I just crammed it into to the days I had. My parents were visiting at the time, and my dad, who'd come along for the ride on one of my mini-errand marathons one morning, said, "Do you ever have a chance to just sit and relax?" Oh, if only I'd really heard what my dad was really saying!

Nap: I'd planned for my nap on the day we were traveling, but not quite well enough. I'd accounted for an extra hour of holiday traffic, but not two, or even three. We missed my nap time by an entire afternoon - and although I tried to get some shut eye in the car, it's not the same.  My anticipated 2-4pm nap time ended up to be a restless 45 minutes from 5:45-6:30 once we arrived at our destination - which is highly unsatisfactory. And my naps in subsequent days weren't fabulous enough to make up for the sleep deficiency. I think if I'd been in solitary confinement for three straight naps in a row, I might have done okay. But with a houseful of folks, it was tricky.

Overnight:  The sleeping arrangements should have worked, but they didn't. The girls were to share a bed (which never works well the first night...or really the second) in a bedroom upstairs, and Johnny and I were to bunk up downstairs in the study on an air mattress. It usually works, but that first night, the girls didn't settle in until way too late, and then Bernie woke up in the middle of the night. I should have been able to get back on track, but again - when I'm desperately trying to make up for missed sleep, the conditions have to just be perfect.

Previous disease activity: Most importantly, I was still coming off of a flare from September. By the weekend before Thanksgiving, I had proudly tapered from 10mg a day all the way down to 5 mg/2.5mg every other day. Major progress by any lupite's standards, and I was so very close to the goal of 5/0mg every other day. But I had to be on my best behavior. And that didn't happen.

By the second day of the trip (Thursday), I was overcome with fatigue, had joint pain and swelling, and felt oh-so-crummy. I took naps every few hours, feeling fabulous for an hour or two afterwards, then crashing hard. The weekend continued  -  with everyone pitching in to make sure I could try and recover, but as often the case, I just couldn't get over the hump. The fatigue continued, the joint pain and swelling increased, and I had to increase my medication, per doctor's orders. To everyone else, it probably seemed as if this mini-flare was manageable. But Johnny and I could tell this flare had some bite to it, and I'd undone all the progress I'd made over the last two months. Ugh.

But - onward and upward. I've already started another round of tapering (successfully, I might add), and in the coming weeks, I'll tell you about my doctor's appointment upon my return home, the encouraging words of Johnny's grandmother that came at just the right time, and coincidences that always seem to happen with new medications and me. Stay tuned!


2 comments:

Anonymous said...

Dear Sara,

Thanks so much for sharing so openly and honestly about your journey with lupus. I've been checking in on your blog every now and then for several years now. Your blog has helped me to be more realistic about my health's needs. When I was first diagnosed, I had no less than three doctors telling me to take naps. But I just wouldn't. I had too much to do! Then I read your book, and you did what the doctors could not do. You gave me someone I could relate to. And you got me to make naps a regular part of my day! That was several years ago, and boy what a difference it has made. Lifestyle changes can make such a difference. Things aren't perfect, but they're much more stable and manageable now.

So here is a big "THANK YOU!" Thanks for your blog and for being real. I really appreciate it!

Blessings,
Denise

Sara Gorman said...

Well...i just hope your nap was as good as mine was today! :) And thanks so much for your nice comments. YOU'RE the one disciplined enough to take the nap every day, so know that you're making all that happen - one nap at a time.

And if only EVERY doctor recommended napping. I just heard a doctor recently recommend napping to an audience of 300...and I got chills. it can be so life-changing.. Many thanks - you made my week!