Five Stages & The Written Pledge

Lupus: Hi.  You’re sick… for the rest of your life.

Response #1

You think I’m sick now, just watch me overwork myself and do too much to prove to you that I’m not sick!

Response #2

You stole the “rest of my life!!!”

Response #3

How much longer is the “rest of my life??”

Response #4

My life is over.

Response #5

Being sick has taught me how to live.


They say there are five distinct stages of accepting an illness: denial, anger, fear, grief and of course, acceptance. For me, it’s always in flux.  There are times when I experience all five of these stages in one day, sometimes in the span of one hour. Even after nine years, my road to acceptance is ongoing, it’s long, and it takes me backwards as much as it does forward.  I am, however, in a place where I am finally ready to do some things to increase my quality of life in the moment vs. worrying about what it will be like in the future.

In my last post, I started talking about one of the things I am doing right now to increase my quality of life.  In my upcoming posts, I will be sharing more about why I think dance class, art class, writing and learning to cook with/for people will help me live better now and, hopefully, help me deal better with future flare-ups. Let me make myself clear – this ain’t no self-help preach fest.  This isn’t a “how to accept lupus” in four simple steps.  It’s just one person trying to make goals and make herself accountable after so many years of doing NOTHING.  Your presence, dear reader, will keep me honest and committed.  Of course, as my long time readers and keepers should expect, general ridiculousness shall ensue, some of which I hope to capture on video and post here.  Yes, I actually just said that…

Oh, crap.

Tame (your) Fires

There are 5 million people livin’ the Lupie Life on this crazy, spinning globe.  They’re napping and limping and pill-popping all over the place, sprinkled across the map like inflamed, red push-pins.

Inflamed:  Latin for “set on fire.”

We’re on fire, baby.

There’s a choice here.  You get to choose your fire.  We can’t stamp it out.  This lupus thing is for life, kids, let’s just make that clear.  You can let it destroy you or let it warm you.

I’m approaching Year 9 of livin’ like a dangerous, fiery ball of denial.  It’s been a thrill ride of emotional rollercoasters, death drops and occasional nausea and if it weren’t for my Keepers, I wouldn’t have been able to keep myself strapped in.  Things have come to their tipping point.  It’s time to make a different choice.

As I approach my 9th year, I’m going to reflect on the 9 big lessons I’ve learned since my Lupie birth.  Let’s call it the “Big 9” for now.  Coming soon…