I hope you’re all doing well! According to my most recent blood tests a couple of weeks ago, I’m still in an active flare that has been going on since “at least September” according to my rheumatologist. She’s had me on a couple of rounds of major steroids on top of the daily steroids I already take, and they seem to be helping somewhat. At least my sed rate number is getting lower and closer to “normal” (which means less inflammation).
Since May is Lupus Awareness Month, I wanted to share a quick bit of info as well as a poem I wrote which will explain what I’ve been up to behind the scenes (besides completely overhauling my blog — Please feel free to take a look around and tell me what you think of all the changes and new stuff.)…
Lupus is Latin for wolf. In the 18th century when lupus was just starting to be recognized as a disease, it was thought that it was caused by the bite of a wolf because of the distinctive rash characteristic of lupus. (Once full-blown, the butterfly-shaped rash heals from the inside out, leaving a bite-like mark.)
By: Rachel Carrera
Streaks of light stagger across ebony space,
Jagged lightning followed by the crash of thunder,
The roaring, rolling, rumbling sounds race;
In their wake, remnants of life split asunder.
The storm that rages often spins out of control,
It’s a fiery, ferocious, fierce beast,
A tsunami that crashes and crushes the shore
And demands to be free and unleashed.
All signs of life seem to be gone from within
As the cyclone swirls showing no mercy,
Causing an emotional collapse and tailspin,
The result of internal controversy.
This storm that I speak of is not in the sky
But within the confines of my person;
The disease that ravages me can’t justify
Why it causes my symptoms to worsen.
Whoever said once that life is unfair
Really did quite a disservice
To all who suffer this hellish nightmare;
I can’t think of one soul who deserves this.
Just getting through a day is so stressful
And feels like I’ve been fighting a war,
And looking in the mirror has now become dreadful;
I don’t recognize my own face anymore!
The pain with each step shoots fire through my limbs
As I place one foot in front of the other;
And the throbbing that causes my head to spin
Leaves little hope that I’ll ever recover.
But the pain is nothing compared to the dread
Of the horror that could be in my future,
Of organ failure causing my life to ebb,
And disfigurement from my abuser.
I throw up each day, though I never lose weight,
And my hair falls out by the handful;
I just want this storm to not be my cruel fate
And not extinguish my hope’s flickering candle.
This beast steals my sleep so I can’t even rest
While this battle continues inside;
My immune system is now in a state of protest,
Like an avalanche causing a landslide.
Even the slightest cold now kicks my tail
As germs stay with me like a cloud cover;
A sniffle, a cough causes a vicious gale
And I take weeks, sometimes months to recover.
I haven’t even mentioned the rash that I get
From where my disease gets its name;
It resembles a wolf’s bite, not letting me forget
To add something else to my shame.
But the thing that propels me through each passing day
Is knowing so many more have it worse,
And the lost prospect of their illnesses going away
Makes them feel like victims of a curse.
Their neuroblastoma, their Alzheimer’s, and
Their Amyotrophic Lateral Sclerosis,
Their aortic aneurysms, swollen lymph glands,
Their Huntington’s and cystic fibrosis,
Their cancers, their famine, their anguish and sorrow
Make my lupus feel suddenly diminished;
If they can dare dream of waking up tomorrow,
Then maybe my life’s not yet finished.
So I hold tight to my flickering hope’s candle in the wind
As I seek out a ray of bright sunshine;
And far in the distance and around the bend,
I can almost make out a dark coastline,
Where the waves come crashing as they roll on the beach
As they beat on the shore with their fury;
Suddenly, the horizon feels almost within reach,
So I force my broken body to hurry.
When I get to the dark shore, the sun starts to rise,
And the waves relax some of their mad thunder;
The faint glint of sunlight that now shines in my eyes
Gives me hope that I won’t be pulled under.
A slight brightness follows the gloomy eclipse
As the downpour now wanes to a drizzle;
No longer does life seem like an Apocalypse;
It renews hope that my symptoms might fizzle.
Despite my sore muscles and pain in my bones,
My frequent fevers and inflammation,
And the many medicines that mess up my hormones
Yet promise to be my salvation,
I am told by my doctor when this flare goes away
That I’ll soon have more good days than dreadful;
And blue skies will at that time replace all the grey,
And I can finally slay this cruel devil.
So I’ll take cover now as I wait out this monsoon,
Keep my vigil even if I collapse,
Keep my eye on the sunlight instead of the moon
And have faith that the squall will elapse.
So let’s talk: Did you know where lupus got its name? Did you notice I’ve been working behind the scenes to revamp my blog? What have you been doing?