Fear and Other F-Bombs

I dropped the “F Bomb” at my dance class tonight.  Eyebrows went up in surprise as I bobbed up and down, taking terrified, tentative steps across the studio floor. My reflection wavered before me as I teetered on the edge of complete meltdown.  A surge of tears threatened to surface – horrified, I held it in, forcing a small, tight smile upon my lips.  All class, I struggled.  I couldn’t do it.  Every instinct was telling me to leave, to stop, to admit defeat, and in that moment, I couldn’t for the life of me, comprehend why I would ever put myself through feeling this shitty on purpose. Tonight was awful.  It was so hard to keep going, to keep trying despite how embarrassed I was.  I know that’s the point.  I know that’s why I’m doing it.  It’s about not being controlled by fear.

Speaking of “f words,” I have been discovering a new freedom.  My art class has allowed me to discover a deeper enjoyment of drawing, that it is meditative and calming.  I was drawing till 4 a.m. the other night and I didn’t even notice.   In those hours, I was drawing, nothing else.  I wasn’t reflecting or worrying or feeling anything other than the pencil in my hand.  It’s a great change from feeling inundated by my thoughts and emotions.

On the cooking front, two of my keepers came over last week and we cooked dinner together.  It was impromptu and instigated by my keepers, so I’m not sure if it really counts towards my cooking project.  I am hoping to get started on my cooking project plan/schedule in the next couple weeks.  Not quite ready to update you on the writing project, but I promise it’s still part of the plan!

Despite tonight’s difficulties, this week has a lightness to it.  I feel better. There’s more room to breathe.  When I was a little girl, I asked my dad what happened to a friend of his who had recently died.  “He forgot to breathe,” my dad replied. Makes sense, I had thought, feeling completely satisfied with his explanation.  I, of course, figured out later that he was trying to make light of the situation by making a joke, but these days, his words have more truth than he intended.  I think I forget to breathe all the time; physically, emotionally and spiritually (which, according to dad, is probably why I’ve almost died a few times). Yes, I know, it’s a convenient metaphor with all it’s zen, meditative blah blah blah connotations, but it helps me put things into perspective.  There is a feeling of  “inbetween” to my life right now, of a never ending sense of transition, of trying to get beyond this point to something else, but this is it.  I’m there.  I’m here. I need to get that through my head.  It all goes back to making things simple, that when you think about it, living your life starts with remembering to breathe.

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.

Wide Open Spaces

Last week, I poured a shot of Bailey’s into and through the swirl of steam wafting above my expensive, “restaurant gourmet” cup of Earl Grey Tea.  My favourite. The first drop of alcohol I’ve had in one and a half, maybe, two years.

That weekend, I took a birthday shot with a friend.  The next day, a drink with her birthday dinner.

Three drinks.  One week.   All delicious.  All moments of decadence; a sip, a taste of normalcy each time.  And it felt good.  It just did.  I lived a little.  I opened up a little space, a peep hole through all the angst I feel over the fight raging in all the places I can’t see – My body: All that blood, the disease, the chemical warriors who could turn on you at any second, who help you, then almost kill you, then bring you back again.

Don’t worry, I’m not going to drink all the time now, nor do I condone alcohol as a “picker-upper.”  At the moment, I have a window of time where I feel having a drink – one drink – is safer than it has been in this last ’bout of prescription medication warfare.  I’ve been off the Big M for a month and a half because of this white blood cell nonsense and it’s been over a year since my hospitalization… and God, more than that, I wanted to be someone who doesn’t have to think twice about having a drink, she just has one, because she’s 29 freaking years old and she’s with her friends and for God’s sake, it’s only one.

There’s too much to be afraid of.  So, I opened up some space… and filled it with a Bellini.

I realize I never told you about my experience at the “Lupus Day Clinic” back in June.  Probably, because it was actually a difficult experience for me to be immersed in Lupus for three days, up to my neck with info sheets and tips so you don’t look like “that,” or feel like “that,” or (don’t panic, now) get “that,” too.  It made me feel “temporary.”  That feeling good is always temporary.  And that’s okay, I knew that, but three days of reminders is a little excessive.  There were good things about it, too, of course.  I will tell you, but not right now.

Right now, I will share something with you that my ‘cross border, sister keeper and fellow auto-immune warrior shared with me recently.  She sent me this video link that speaks about one woman’s experience with a microbiotic diet, but I wanted to share it more because her story is a reminder that going through illness can gift us clarity and renewed purpose if we open a space wide enough to receive it.


Stupid Hot


The Lupus soldier braves the murk, the mug of humid hot.  Condensing, trickling,  … hat-less.  Stupid.  Good move, loser.  The sun beats against my back.  I sigh as I slump down into the driver’s seat of my car.  Today’s desert is a freaking parking lot, for God’s sake.  

I had to repeat my blood tests today.  Dr. H. thinks my white blood cells are being killed off by my lack of Evil P, not an excess of Big M.  Sigh.  I’m not sure how less prednisone would decrease my whities, considering it’s immunosuppressing powers are at a minimum with me being on 2.5 mg. every second day.  The rheumatology clinic blood lab was closed today because of under-staffing, so I crossed the threshold into the main hospital: 


My mood changes as soon as my sandals hit the floor.  Everything grates on me: A woman chatting in her hospital gown, hospital lanyards bouncing against chests, patterned scrubs, hanging signs.  God, I hate hospital gowns.  I enter the blood lab and I take a number like I’m waiting for lunch meat at the deli counter.  An unfamiliar feeling of dread wafts over me.  I’m fidgety, the lab tech asks me if I’m okay.  Of course, I’m okay!  I’ve done this a million times, lady, I’m freaking OKAY.


Okay, so I’m not totally okay.  There has been a “flashback flood” in the last few days with my “anniversary” coming up. And I’m nervous because I’m going to be around lots of people (and their germs) for the double wedding this week with my whities being so low, the forecast says it’s going to be killer hot, and the schedule is jam-packed.  The timing is stupid… and so am I, for being up this late.