Friday, October 4, 2013

Progress, progress, and more progress: How far I've come in this lupus flare

First things first: the joint pain, swelling, and fatigue that I've been experiencing over the past couple of weeks (wait...who am I kidding? It's been the past couple of months) continue to get better.
I'm still in slow-down mode...doing only what I have to do, and not much of what I want to do...but it's working. With each morning, I wake up with less joint pain than the morning before, and my fatigue level has slowly returned to a manageable level that only requires one nap a day. So happy my efforts are paying off.

Whenever I get to this point in a flare (where it's clearly on its way out, assuming my body continues to react favorably to the increased medication and my low-key lifestyle), I get a little impatient. I'm ready to be back on top, to be 100%, but I'm quite not there yet. In the good old days (prior to this flare), I didn't give lupus much thought throughout the day. Without symptoms present, it's easy to not to think about it. But when I awake to joint pain, swelling, or both, lupus is unfortunately, the first thought of my day.

So when I enter this "almost-post-flare-impatient" mode, it's time to look at my progress. I need to take note of how far I've come. I find it's imperative to do this - to keep from getting discouraged as the symptoms take forever to subside completely, but also to remind myself of the steps I've proactively taken to get better. I promise you - a double dose of prednisone and some increased plaquenil aren't solely responsible for my decreased disease activity. It's because I worked at it, and concentrated on letting go, and giving in, and asking for help.

So how far have I come? Here are the benchmarks that help me remember just how much better I'm feeling:

Just a few weeks ago, I couldn't reach back to put my hair in a ponytail first thing in the morning. Now, I can whip up three ponies in a row without even thinking about it. I'd do Darwin's, too - but he's been wearing it down. (See? Another sign of progress - having a sense of humor!)

Two weeks ago, I was struggling to make it through my 15 min run without stopping...twice. I kept getting winded, and I simply needed to stop for 20-30 seconds. Now, I'm able to run the full 15 minutes straight...just like the old days.

At the beginning of the school year (first two weeks of September), I didn't have the energy to walk Deirdre home from school (about 15 minutes.) Now, Bernie and I can walk there, pick up Deirdre, and walk back without even thinking about it. In fact, just last week, Johnny was planning to pick up Dee from school, but got stuck in traffic. He had the car seats in his car, so Bee and I had no choice but to take to the sidewalk. With about 12 minutes to spare, I ran most of the way there, pushing Bee's stroller, and made it just in time, feeling great the whole way. Two weeks ago, there's no way I would have been able to pull that off. Hurray for progress!!!

Last month, I was taking consistent morning siestas, simply because I was running out of gas by about 10:30am. Now, by mid-morning, I'm just hitting my stride, with plenty of energy to spare.

Last example: back on September 14th, I spoke at the LFA DMV "Take Charge and Make a Change" Advocacy Seminar in Annapolis. I felt great the day of the event, but I enlisted Johnny (or actually, he volunteered) to drive me to and from the event because I couldn't spare the energy. It would have been physically impossible to have driven myself, spoken, visited with attendees, sold bags, and driven home. I just couldn't have done it.

Tomorrow, I'm speaking at another Advocacy Seminar, this time in Richmond. Johnny is driving again, but not because I can't do it. I could make it there and back no problem - I'm feeling that great. But why push it? It will be nap time by the time the event finishes up, and although I could manage...I would be pushing my limits, and could catapult myself right back to where I was a few weeks ago. And that simply isn't allowed...at least not in my book...literally and figuratively! (Again, that sense of humor!)

1 comment:

Anonymous said...

Hello Sara, I am suffering from symptoms that appear to be lupus but the diagnosis is very elusive due to blood tests. I did get a possible conformation on my skin biopsy. One treatment i did that was a miracle dealing with the fatigue and exhaustion was Testosterone therapy. Wow what a difference. It helps with low HGB and platelets too. With 90% of people being women with Lupus, there may be a real link to imbalanced testosterone. Really gave me my life back and yes i have to still take the steroids and watch my stress. Just FYI.