The Storm

Greetings, Friends!

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 Awareness Wolf

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.)

“THE STORM”
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?

#LupusAwareness

Waiting Game and Writing

Hello, friends,

Since my last check-in, I had the blood work I mentioned.  I expected my iron to be low and possibly my B-12.  But I never expected what happened instead…  My “sed rate” (short for erythrocyte sedimentation rate, also known as ESR) came back high.  It’s supposed to be between 0 and 20, and mine was 125.  (Zoinks!)

bariumSoooo… needless to say, my doctor ordered a bunch of extra tests, more blood work, a CAT scan (hence the nasty barium you see here!), an x-ray, and other stuff.  The x-ray already came back fine.  The second sed rate test came back elevated again.  And I don’t yet know the ANA and Rheumatoid Factor test results, nor the CAT scan results.  As far as I know, I have to go back again next week for yet another sed rate test.  I don’t know what he’ll order next depending on the other results.  But until I know something, I’m still plugging away trying to make it through the day without puking or needing a nap!  I’ll keep you posted as I learn anything.

In other news… Since I’ve been too exhausted to spend much time at the computer writing anything new, I’ve been taking some of my printed manuscripts to bed and trying to commit to editing at least a few pages each night.  I believe I’ve made it through all the obvious typos, misspellings, bad or missing punctuation, etc.  (Printing it out really makes quite a difference in catching these little blunders as far as not seeing the same thing as my eyes have passed over on the computer screen so many times before.)

I’ve let a few people (including a few of you) read some of these manuscripts before, and many of you had some remarkable suggestions.  But there was one manuscript – The Prison – which I’ve only let a couple of people even see.  It was the first one I wrote, and I wrote it before I learned and became obsessed with “The Rules.”  You may remember my frustrations when my exact-word orientation from my Autism got in the way of “just writing” once I learned there were so many dos and don’ts.  I got so hung up on The Rules, that I wasn’t able to “just write” anymore, and as I’ve been re-reading, I wince as I see how much I held back.

Don’t get me wrong, I (now) think The Rules are a good thing (for the most part), though my Autistic brain still wishes they were called “The Suggestions” instead.  What I realized was that my first manuscript had so much more “feeling” behind it and felt less “mechanical” than the others.  When I asked myself why, I came to a conclusion:  I used a lot more similes and strong descriptions in The Prison than I used in my other works.   The sad thing is, I know exactly why I did this as well…  I got so stuck on “Show Don’t Tell” (of The Rules), that I was afraid I was “telling” too much, so I deleted almost all instances of these types of phrases and sentences in my subsequent work.

Unfortunately, I think a lot of my problem was due to an article I read that instructed me:  “In order to show and not tell, you have to write as if you’re describing what’s happening to a blind person.”  So, I did just that.  And in doing so, I added a lot of stage direction (a LOT of stage direction!) as well as clumsy description that sounded as if I were telling the story of cyborgs rather than people!

For example:  After learning The Rules and allowing myself to become obsessed with adhering to them — or else!–, I wrote:

Neil’s face turned scarlet as he jumped to his feet.  His chair fell to the floor, and he narrowed his eyes.  “What did you do?” 

Rivers grabbed her arm as hot soup splattered on her.  Tears formed in her eyes.  “I’m sorry.”

He grabbed her shoulders tightly and put his face close to hers, then without saying a word, he released her and spun on his heel.

*~*~*~*~*

Ugh!  Isn’t that just awful?  It feels so cold and mechanical.  I’m embarrassed to think I actually allowed people to read my work like that!

Now, I’ve changed a lot of sterile scenes like that to be something more like this:

Neil jumped to his feet.  His face was flaming, and he appeared to be six inches taller than he already was. His eyes penetrated Rivers’ as he glared at her with repugnance.  “What did you do?” 

Rivers’ voice caught in her throat, and she began to tremble. “I’m sorry,” she said under her breath.  Tears streamed like twin rivulets down her cheeks as she tried to ignore the hot soup that splattered on her arm.

He huffed and grabbed her shoulders, digging his fingers into her flesh.  He pulled her so close, she could feel his hot breath on her face. 

She attempted to explain, but her voice caught in her throat like a lump of clay suffocating her.  Before she could speak, he grimaced and released her as if she had the plague.

*~*~*~*~*

Isn’t that much better?  The sad thing is, that’s roughly how I wrote in the first place, (though I admit I had a bad habit of changing points of view as well as making the scenes too short and choppy…  Those are some of The Rules that are actually a good idea to follow.)  So, as I’ve been able, I’ve been slowly making the changes to a lot of these old works and trying to get them in their best possible shape once and for all.

 Anyway, that’s what I’ve up to lately, friends.  What about YOU?

The Raven

While I was dealing with all the health issues I had this year, I was so exhausted at times that it was all I could do to make it to work.  Even reading was too much for me to handle.  Needless to say, I haven’t been as productive as I’d have liked, at least until the past couple of weeks.  However, to try to keep my writing mojo going, and at least stay in the mindset of writing, editing, reading, creating, etc., I redecorated my writing desk area with a writerly theme in mind.  (Actually, I overhauled my entire living room / dining room with the writerly theme, but I’ll save the rest to show you another time.)

desk

As I’ve shared before, my décor is a late 1950s / early 1960s motif, so I tried to keep that going while adding literary touches.  You’ll note the books on the top shelf include an old school dictionary, thesaurus, and volume library.  (Of course, they also include the “Chicago Manual of Style,” Stephen King’s “On Writing,” and Chuck Sambuchino’s “Guide to Literary Agents.” Though those aren’t vintage, they are good to have around.)

books

My mouse pad as well as my little statuette features The Raven from my favorite guy, Edgar Allan Poe.

nevermore

IMG_0433

My printer is just the best investment ever!  I’ve definitely made use of printing my manuscripts in a different font than I type in then editing the hard copy.  It makes a huge difference seeing your work on paper as opposed to digitally.   This model is reasonably priced on Amazon (more reasonable than I’d have ever imagined), and the laser cartridges are under $30 which is less than I used to pay for ink in my old inkjet!  Better yet, a single cartridge prints around ten reams of paper with no quality problems whatsoever.

laser printer

I found these cool plastic envelopes at The Container Store to hold the manuscripts I print while I’m editing them.  (They’re great for carrying them back and forth to work to peruse during my lunch hour.)

editing envelopes

And finally, my awesome sister Michelle got me a subscription to Writer’s Digest as well as Poets & Writers.  Both are very cool (though I favor WD by far), and they both have lots of useful information that make them worth keeping after I read them.  (Those actually go in another one of those cool plastic envelopes once I’m done with them.)

Writers Digest, Poets & Writers

Anyway, thanks for visiting me at my house today.  As I’m starting to get my energy back, I hope my creativity will start flowing again and I can think of more interesting things to blog about.

So tell me, what do you have in your writing nook, and what keeps you inspired?

The other day, I walked out of work and saw this:

Now what do you think’s going on here?

ups trucks

My imagination went wild, but before I tell you what I thought, I’d like to hear from you.  Go ahead and use your imagination for this writing prompt to give me the best story possible about what was happening.