It seems that my Complex Regional Pain Syndrome (CRPS) is trying to flare in a bizarre sort of way right now. I’ve written about it before but CRPS is sort of a medical anomaly anyway and it is new to me as well as I just developed it at the end of last year and I’m just learning how it is going to manifest.
My first flare came on suddenly, with horrific, uncontrollable pain in my left foot and leg. My husband had to rush me to the emergency room and it was a few weeks before I could walk properly again. I couldn’t hold weight on it and I couldn’t bear for anything to touch it or even for air to blow on it. It was the stuff of nightmares.
A month or so later, I had another flare that landed me in the ER. Thankfully, it did not last as many days but it was pretty damn unpleasant too.
In addition to the symptoms in my foot, I also have systemic symptoms, including insanely dry mouth and eyes, abnormal taste buds (odd I know, but nothing tastes right when I flare), headaches, and stabbing pains that come and go in my other joints. My vision also intermittently becomes blurry.
It can bring on all kinds of strange symptoms.
And over the weekend it has started flaring again in a strange way:
I suddenly developed this odd bruise with no injury and all the CRPS pain in my left foot plus the odd taste buds and the headaches and the allergies. Good times.
However, my response to this flare is different.
My overall feelings about my illnesses (CRPS, RA, and Celiac Disease, as well as early onset osteoporosis from the medications) in general have been different lately — even though the illnesses aren’t better. And I haven’t been sure exactly how to explain it.
And then tonight a friend posted this on Instagram:
Chantal has an incredibly complex medical history and was so ill that she was filmed for “My Last Days” last year before she was given a stem cell transplant that has given her a new lease on life. As such, though she is still quite ill, she is ALIVE, and that has given her an incredible new perspective.
In the same way, I think I came to some new realizations awhile back that really changed my perspective on things. I realized that I will have RA and CRPS for the rest of my life. Of course I will always keep seeking the BEST treatments and take every possible medical option that might help me. However, beyond that, I just have to really LIVE with this. And it can’t be my whole life.
So. . . . what does that look like?
Well, it depends.
Sometimes it just means working on my articles at home and making a good, inexpensive, whole foods meal for my family at night and spending time with my husband and daughter and service dog.
It may not seem like much but on the RA/CRPS/multiple broken bones in my feet some days that is what I can do and it brings me joy to be able to do it.
I’ve also also been making plans and taking trips with my people.
I am incredibly blessed that everyone close to me understands that we have to pick our assistive devices by the day and we just roll with it. The only way to live with these conditions is just to make plans and GO, even if it requires a week of rest, even if it brings a flare, because you’ve got to just keep living. I’m just so grateful for my people and my service dog, Henry, and my smartchair. Let’s go!
Every day I have to do whatever I CAN.
So, like Chantal, I’m sick, but I’m okay too. I’m still kicking.
And I’ve also just celebrated my 2nd soberversary, so there’s this:
Even with these conditions I’d rather be without, it’s a big beautiful life, y’all, and I have so many good things and so much love — and so much left to get into. ;)
Sometimes it is all a matter of perspective, even in the most difficult of conditions.
