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

Another Throwback Thursday Poem

As of today, we’re officially out of National Poetry Month.  Thank goodness!  I wasn’t sure I could keep it up much longer.  However, as much as I’ve complained, you may find it hard to believe that I’m actually sharing yet another poem with you, today.  But for today’s throwback, I’m not featuring a poem that I wrote.  Instead it is about me. As I’ve shared before, my grandparents raised me from the time I was born.  Grandma’s older sister, Aunt Susie, who lived near us, loved writing poetry and songs. In fact just about any time anyone in the family was born, she wrote a poem to welcome them. So this is the poem she wrote for me a couple of months after I was born. (I’m a little aggravated because I have the handwritten version somewhere, and I can’t seem to find it. But at least I found a retyped copy while I was looking.)

A Poem for Rachel
By: Susie Huey

Wake up, Little Rachel
And give us a smile;
You’re such a little darling,
You nearly drive us wild!

Grandma’s waiting,
And Granddaddy, too;
Here’s Uncle Paul
And Aunt Susie-Q!

Your Mama misses you,
And Daddy’s in a whirl;
They can hardly wait
To see their little girl.

Now you are laughing,
Happy as can be;
You know you are loved,
And that’s your security.

You don’t suck your thumb,
Grandma might scold;
No blanket either –
Except when it’s cold!

P.S. Because April’s theme got me so used to writing in verse, the following is by me:

The poem above can be sung as a chant;
It was written for me by my wonderful aunt.

Rachel and Aunt Susie (2)

(That’s Aunt Susie and me the Christmas just after I turned one… Uncle Paul’s sleeping behind us on the couch.)

Rachel and Aunt Susie (1)

(From Left to Right, that’s Aunt Susie, me, and my grandma.  Luckily we all got the red dress memo that day.)

Awareness of My Autism

If you’ve read my About page, you know that I’m Autistic. I have Asperger’s Syndrome, and even though the American Psychiatric Association Powers That Be, in their infinite wisdom, actually decided to lump the diagnosis in with Autism Spectrum Disorder recently, I refuse to conform.  I still say I have Asperger’s, and I don’t care what they call it.

Asperger’s Syndrome is the only form of Autism that is genetic. (Thank you, one or both of my birth parents!) As such, both of my children have also been diagnosed, (though they don’t like to make it public, so please don’t tell on me for blabbing).

I waited until the last day of April to publicize this particular post, because I feel that it’s important that people don’t just think about this neurobiological condition for thirty days a year during Autism Awareness Month in April. Unfortunately, if Autism doesn’t directly affect you or someone you know, you may not have a clue just how it works. As such, I’d like to share just a few quick facts about Autism that many people don’t know before I get to my last poem of the month:

1. Just because Autistic people may not seem like they are aware of your feelings doesn’t mean that we don’t get hurt feelings. In fact, our feelings may be hurt more easily, all though you may never know it because we’re unable to voice it.

2. It’s a fact that people with Autism are more susceptible to digestive problems as well as food allergies. So, while you might think we’re just being picky, it could very well be that our bodies know we’re actually going to have an adverse reaction to the food.

3. We are slaves to our brains. While you can simply refocus or turn off your thoughts, we likely cannot. Even the act of falling asleep at night is often difficult for us because our brains don’t shut down.  Ever.

4. We are slaves to routines. So, even when something that should be fun (like a vacation or Christmas morning) occurs, it is likely a great source of stress to us because it’s different than what we’re used to.

5. We are hyper-sensitive. While you may not even notice the tag in your shirt, we are tactile sensitive, and the same tag can feel like needles poking us (though actually poking us with a needle may not bother us at all). While you may only notice the taste of food, we notice the texture, and that may be the reason we don’t like something.  And while you may feel that people are talking at a reasonable level, to us, it may sound like screaming.

So, although I could go on and on (and on and on) about living with this special brain, I will spare you. I just wanted to let you who are unaware have a little glimpse of the goings-on inside the Autistic brain. And now, on to my last poem of Poetry Appreciation Month…

autism

“Autism Awareness”
By: Rachel Carrera

April was the month
For Autism Awareness;
Those of us who are diagnosed
Know its unfairness.

It’s like our brains are separated
With some kind of schism,
Those of us who have to
Deal with Autism.

I thought my diagnosis
Would be my bane
Until I learned how to live
With my special brain.

So instead of something in my head
That’s unable to connect,
My Asperger’s Syndrome is now
Something that I accept.

But assigning one month for Autism
Awareness is just wrong;
People should be aware
Of it all the yearlong.

 

Elegy of a Hero

As we end National Poetry Month, I noticed that in last week’s Throwback Thursday, I shared an old poem I wrote for my Grandma nearly twenty years ago.  But sadly, I never wrote one for my Granddaddy when he was alive.  As you know, my grandparents raised me from the time I was born, so he was the only dad I ever knew.  So today, I’ll honor him with a verse…

Requiem for My Granddaddy
By: Rachel Carrera

If a girl had a grandfather
That couldn’t be beat,
It had to be
My Granddaddy Pete.

When he was young, he
Ran like a crackerjack;
So, when he started high school,
He took up track.

He ran very fast;
Swifter than any other;
The only one to catch him
Was my lovely grandmother.

Later, he enlisted;
He joined the Air Force;
He wanted to fly,
So, it was a logical course.

He looked so handsome
In his uniform of blue,
As he fought for our freedom
In World War Two.

As he served his country,
Mere survival was a wager;
But he stuck it out
And retired as a Major.

After he retired
From being a protector,
He started a job
As a citrus inspector.

He would bring home oranges
And grapefruits sometimes,
And occasionally, he would
Bring bags of lemons and limes.

And when I was born,
He took good care of me;
He would tell me stories
As I sat on his knee.

He sent me to private school
To get a good education,
And he steered me away
When I succumbed to temptation.

The story of my Granddaddy
Wouldn’t be complete
If I didn’t mention his stocks
That he invested in on Wall Street.

But then he got sick,
And he broke our routine;
He passed away when
I was only seventeen.

I miss my Granddaddy;
I sure loved him so;
I wish I’d have told him more often
So I was sure he would know.

Pete Alone 06 - 001

Pete Alone 06 - 033

Pete & His Grandchildren 05 - 013

 

The Thing About Limericks

Well, friends, we’re closing in on the end of National Poetry Month, and frankly, I’m at a loss. I think I generally average about one poem a year, and even then, those are ones that come to me and not ones I set out to write on purpose. This writing poetry on demand is hard!  I honestly don’t know if I can think of one more poem’s subject matter. So, for lack of anything better, today’s verse is about limericks and how they are structured.

limerick writing

A Limerick About Limericks
By: Rachel Carrera

Writing a limerick’s not hard,
Even if you’re caught off guard;
The fourth line and the third
Use the same sounding word;
You don’t even have to be a bard.

Writing a limerick is easy;
The notion should not make you queasy;
The fifth, second, and first
Lines rhyme so they are versed,
But sometimes their subjects are sleazy.

The Last Throwback Thursday in National Poetry Month

As the title suggests, today is the last Throwback Thursday of National Poetry Month. This is a good thing, because I am afraid I’ve run out of old poems.  I find this particularly frustrating because any poetry (or even short stories) that I wrote by hand or typed when I was a teenager or in college have been long gone, and I regret not keeping them. And the bit of poetry or stories that I wrote on a computer before 2001, I also regretfully failed to save when I changed computers over the years.  GRRR!

Anyway, as for today’s TBT poem, it’s something I wrote (and then cross-stitched) for my Grandma Toby for Mother’s Day in 1994.  I’ve told you before that my grandparents raised me, so she was really my mom and deserved a sweet poem dedicated to her. (Luckily, she saved the cross-stitch version, because, yes, I threw away the notebook where I originally wrote it.)

Rachel's TOBY Poem

(I know. I should’ve cut the strings in back because they show through.)

“Grandma”
By: Rachel Carrera
May 8, 1994

Grandma is a word to me
More precious than gold;
Though some say she’s aging,
I don’t think of her as old.

She is so very
Special to me;
The kind of woman
I hope to be.

She opened her heart
And her home to a little girl,
She gave me an education
And prepared me for the world.

She gives me
Unconditional love and care;
When I need a friend,
She is always there.

She encourages me
To do the best I can,
And accepts me
Just the way I am.

The most important gift,
With me she has shared,
Is the story of God
And how much He cared.

I tell her things
I can trust to no other;
To me she is more
Than just a grandmother.

When I need to cry,
She has a shoulder to lend;
She’s my grandma, my hero,
My very best friend.