All posts by Planet Noun

The Trait and I–filling in the blanks

There’s lots to learn about Sickle Cell Disease and Sickle Cell Trait. Click the image to listen to Planet Noun’s interview on SoundCloud featuring Elle Cole, writer and founder of CleverlyChanging.com

Mom is the one who first told me about sickle cell disease and the sickle cell trait. I can’t tell you what prompted the discussion. Maybe it was hearing about a childhood acquaintance who had the disease, was in crisis and in the hospital. Maybe something else prompted her to open up that discussion.

I have the trait, and so do you, is the essence of what she said.

Concern had to be etched on my face or laced in my words or questions, because I remember Mom reassuring me I could not “grow” or develop the disease. People with sickle cell are born with it and both parents must have the trait to pass it along to their children, and there’s a one -in-four chance that can happen. Mom told me she and Daddy didn’t have to worry about having a child with sickle cell disease, because he is trait-free.

This trait conversation was one of “the talks” I’d have to bring up when dating or considering marriage, Mom warned me. Wish I could recall how old I was when she told me all of this. I don’t, but it’s something I’ve kept with me all these years.

Couldn’t say if I discussed this with every single guy I’ve dated, but I do know with the more serious ones, it’s definitely come up in conversation. It wasn’t one of those big deal “we need to talk” convos. It just came up either naturally, or in a casual “oh, by the way,” kind of manner.

Making Connections

One thing Mom and other medical professionals have told me—there’s nothing to worry about with the sickle cell trait. Seems that’s pretty much been the case throughout the years. However, I’ve recently learned is that even though I can expect to have good health (bastard fibroids aside), folks with sickle cell trait are at risk for a health complication called exertional sickling that can happen during or after strenuous exercise or exercise that’s carried out in extreme environmental conditions. For example, exercise on very hot days could trigger exertional sickling. Dehydration can also play a role.

As a result of my interview with Cleverly Changing, I’m starting to learn about some of the effects the trait can carry with it, and she pointed me to some resources for more information.   In retrospect, I’m also realizing maybe I’ve had experiences that coincide with some other symptoms a trait carrier can have during workouts.

Maybe this explains why, when I was in high school, I felt loopy and dizzy when we had to run a mile—I’d never done that before, and hated how I felt afterwards. I’d run sprint races like the 50 and 100-yard-dash during elementary school field days, and never felt like I would pass out. But that first high school mile not only temporarily took my wind, which is natural, but the added dizziness let me know something might be awry. What it was, I didn’t know at the time.

I can still walk, I thought. Maybe it’s not that bad. I’m just out of shape.

I wasn’t “in shape,” nor did I workout every day. But I wasn’t inactive. I walked plenty in those days of catching the city bus. Sometimes I ran for the bus, sometimes I walked from my street of residence to another main highway to bypass one of the bus lines and slash my trip from two buses to one. Then there was the walk from the bus stop to the school. Even with that walking, being out of shape for a mile run was still a definite possibility.

Looking back, perhaps it was my paltry water intake that made me dizzy after that mile. Back in those days, I preferred drinking lots of milk, because it did a body good, and colored drinks and sodas because they were tasty and cool. Water, I drank a little bit before and right after exercise. When I was in elementary school, I loaded up after spending recess running around the school yard. At home, I used it to boil for hot teas and cocoa, and to dissolve Kool-Aid, Tang or Country Time Lemonade for a cool beverage on hot days.

Marathons

I’ve never run one. Once upon a time, it was on my list of things to conquer—but it’s slid from the back burner, off the stove into the trashcan. I’m not saying I won’t ever, ever run one… but resting in my mind’s closet has always been that high school experience—sort of warning me of what could be a latent reality.

When I worked in the Rosslyn neighborhood of Arlington, Va., I got the chance to observe folks who had just finished running the Marine Corps Marathon. Throngs of runners collected there to recover, rest and reunite their loved ones in that area, which also doubled as a celebration and festival area. Once I left work and saw some of the runners after the race. Most looked like they were about die or wanted to. My instinct told me maybe running marathons wasn’t for me after all.

It was my gut speaking.

Then, several years later, I learned about the possibility of exertion sickling for athletes with sickle cell trait.

The University of South Florida Health, in informational material on sickle cell trait for coaches, defines exertional sickling as “a potentially life-threatening condition resulting from the sickling of red blood cells during intense exercise.  Sickling results in muscular ischemia and collapse, whereby the athlete may experience intense muscular pain, rhabdomyolysis, and other serious metabolic problems. Signs and symptoms of an exertional sickling event include intense pain, fatigue, feeling like you cannot continue exercising, muscle cramping and inability to catch your breath.  Exertional sickling is a medical emergency and requires immediate treatment.”

Of course, I realize there’s no guarantee this will happen to me during intense workouts. I’m not athletic like that. But, then again,  I can’t guarantee it won’t. So I just take it easy, and set my own pace—which I’ve always done and is recommended for anyone during exercise— and have settled with the idea that an onslaught of extreme athletic anything may not be part of my life.

And that’s O.damn.K.

At the same time, I’m not ruling out reaching in the trashcan to recycle my discarded marathon dreams—maybe in abbreviated 5K form.

Please follow and like Planet Noun:

Episode 11: Sickle cell awareness and responding Cleverly to life’s Changes—featuring Cleverly Changing’s Elle Cole

Elle Cole, founder of CleverlyChanging.com

(The DMV)–September is Sickle Cell Awareness Month, and our guest for Episode 11 has a compelling story about how she learned of this disease. 

Elle Cole is a writer and founder of Cleverly Changing, a lifestyle blog that focuses on “Empowering the Total Person.” 

Elle and her husband have two daughters—twins. One of them has sickle cell disease, so the ups and downs of this genetic disorder are well known to Elle and her family.  

As an advocate, Elle hones in on sharing educational information the disease, the trait, how it’s inherited, and about symptoms and treatments. Her blog contains a trove of information about sickle cell that can be accessed 24/7, 365.  

In addition to spreading information about the disease, this awareness month can also be a way for folks to “see” each other. 

There could be someone familiar to you who has been suffering in plain sight, in silence. Maybe someone you know has a relative, friend, neighbor or someone else in their orbit who battles this disease.

Maybe more people with the disease will meet at conferences, social or fundraising events and end up extending a current support network. 

And if you don’t have the disease, maybe you can help be a support, listening ear, or advocate by connecting with already-established organizations to find how you can help their cause.

Maybe you know someone with the trait. The trait is NOT sickle cell disease, but if two people with the trait reproduce, there’s a 25 percent chance their child will be born with sickle cell disease. And if one parent has the trait, it’s possible to inherit that from said parent.  For example, I inherited the trait from my mom. 

There may not be any serious health ramifications for trait-carrying folks. However, it would behoove them to learn all they can about it and how there’s a higher chance of adverse effects during or after strenuous workouts.  That doesn’t mean throw physical exercise out the window.  Not even. It just means recognizing  some possible symptoms can crop up—that could be a result  of carrying the trait.  

I can only speak for myself but, the past few weeks have been the start of increased awareness about this disorder which, I am certain, is one goal of Sickle Cell Awareness Month.

See the following links for more information.

Cleverly Changing

The Air Force produced a video specifically for recruits who have sickle cell trait.  According to this video, folks with the trait are allowed to serve, but the awareness video gives them tips on staying safe during and after workouts. I also learned they have to wear a special arm band during their training so their superiors are aware and can be on heightened lookout for symptoms of exertion. 

Elle also passed along or told me about most of the following individuals and organizations. This information here is about a podcaster who focuses on awareness for those with sickle cell trait. His name—Farron Dozier of  “What’s the Count” (WDC):

On the Cleverly Changing blog, this video has more awareness information about the trait.

For those in the Baltimore, Md. area, The Ruby Ball is an annual sickle cell awareness and fundraising gala. It’s scheduled for Oct. 13.

The Ruby Ball on Instagram

During Episode 11, Elle mentioned a fitness challenge for moms, the Cleverly Fit Moms challenge.  She released the daily fitness goal on her website and social media.  If you need some workout encouragement, you can start the challenge at your convenience.  

Because about 1 in 13 African Americans carries the sickle cell trait, there is an initiative to bolster awareness about the trait and disease at HBCUs or Historically Black Colleges and Universities.  Learn more about the Sickle Cell HBCU College Tour, including how to request a visit to your school.

St. Judes Hospital’s sickle cell program includes information on clinical trials, educational materials, information about navigating school challenges, and videos that help teenagers with sickle cell ease into their adult medical care. 

Howard University Center for Sickle Cell Disease 

Howard University sickle cell symposium-World Sickle Cell Awareness Day 2018

The National Institutes of Health’s National Heart, Lung and Blood Institute sickle cell information page

Sickle Cell Disease Association of America

 

Please follow and like Planet Noun:

#Saturday Spark 9/8/2018–Gratefulness

Truth: I’m talking to myself half the time I post something inspirational on social media or repost a quote from another profile. There are LOTS of things I want to change about my life, but I see no use in complaining and allowing those things to cloud the beautiful experiences in life.

Stuff I cried and groused about last year now seem like timely and merciful blessings.

There is much value in shifting my perspective into one of gratefulness. That spirit helps me look at the posibilities, whatever they may be, in a positive and affirming way… in a manner that really makes many more things seem possible.

 

View this post on Instagram

 

Attitude depicts your altitude….therefore I choose Gratefulness. #Breelism #quotestoliveby #grateful

A post shared by StaciaDWrightOfficial (@staciadwright) on

Please follow and like Planet Noun:

Cancer’s wiggety-wackness, gratefulness…and prayer (yes, this post will make sense)

Maryland Gov. Larry Hogan, PGFD firefighter Jesse McCullough, his wife and one of his daughters at a Sunday afternoon fundraiser to help defray costs of McCullough’s cancer treatment. Gov. Hogan heard about the event and stopped by to offer emotional support. Hogan also fought cancer for about a year and a half. His diagnosis came just several months after his inauguration in 2015.

(At the Water’s Edge, Maryland) — Grateful. I’m deeply grateful that folks allow me into their time and spaces to ask questions and be nosey in both good and extremely difficult times.

Some folks I cover for work really resonate my heart strings. From Brandi Garrett at The Maddy Wagon whose daughter, Madison, is a childhood cancer survivor…to Roya Giordano and family who lost their teen son/brother Mathias to bone cancer. 

Earlier today for work, I got to cover a fundraiser for a firefighter who is battling colon cancer. It has spread…He says the chemo seems to be holding it at bay right now, but he told me it isn’t curable so he’s essentially buying more time to be able to spend with his wife and watch his daughters grow some more…He’s looking into clinical trials in the D.C. area and in Boston, but isn’t eligible for any of those until all other treatment options are exhausted.

So….Since my blog is a personal project, and because it’s no secret I want everyone to be happy and healed, I have requests:

  • If you are a praying person, pray.
  • If you only put positive thoughts & speech into the universe, do that.
  • If you do none of the above, just hope for the best so Prince George’s County firefighter Jesse McCullough gets better. 
  • If you know a phalanx of prayer warrior grannies or aunties who always smell of peppermints and/or wear white gloves to their houses of worship even in the summer heat…ask.them.to.pray.  Not just any grannies or aunties. The ones who call everyone either “sweetie,” “dear heart,” or “baby”…(pronounced BEHHH-buh) or some other variation.  That encompasses a wide variety of grannies/aunties of different backgrounds with only the sweetest levels of sweetness.

Big G upstairs be listening to them, for real. 

 #McCulloughStrong

Please follow and like Planet Noun:

Aretha

Yes, it was imminent.

Yes, it was coming down the pike, as it is for us all.

But there’s still a hefty morsel of numbness that nestles itself in my soul for a little bit once I hear someone’s life exit is final.

Been kind of blah all day.

Been trying to put words to my feelings.  Trying. Still not there yet.

Why will I miss Queen Aretha?

She was the only artist who could make me raise a hand, and say a heartfelt Hallelujah for ALL the life reasons Click To Tweet

Because she was who she was.  She earned first name only status with an exclamation point (ARETHA!) AND ascended to royalty  (Queen of Soul).

Because she played a role in the Civil Rights Movement and helped others. Much-much respect!

Last but not least, I’ll miss her for accompanying us through the human experience.  She was the only artist who could make me raise a hand,  and say a heartfelt “Hallelujah” for ALL the life reasons: From “Precious Lord” and “Mary Don’t You Weep,” to “Bridge over Troubled Water”…

And from “Daydreaming” to “Son of a Preacher Man,” and “Dr. Feelgood,” which could be the reason some of y’all exist today.

There was only one Aretha.

Missed, she will be.

Please follow and like Planet Noun:

Episode 10: She ain’t no one trick pony: Behold, Stacia who doeth many things Wright

Our guest for Episode 10 is one of those people who does many things well! Her name’s Stacia D. Wright, an event and media strategist and owner of B. Reel Media Management, LLC. As I’ve said in previous episodes, small business owners fascinate me because of the risks they take and lessons they’re open enough to learn in order to keep progressing along the entrepreneurial pathway.

@StaciaDWright has a thing or three to say about knowing your worth, the value of your time and what you bring to any table. If you want to start your own business, her reminder: Working for others has invaluable lessons as well. Click To Tweet

Through her business experiences, Stacia has a thing or three to say about knowing your worth, the value of your time and what you bring to any table. If you want to start your own business, her reminder: Working for others has invaluable lessons as well.

In addition to running B. Reel Media Management, Stacia is a wife and mommy. She’s even made a video to help teach her daughter Ginneh how to potty, and was surprised when the tune traveled around the globe to other parents having a doozy of a time teaching their young-uns how to independently use the toilet. Stacia also appeared on a local television station, and the video was featured on the websites of other media outlets as well.

Fox5DC
Today
Daily Mail

Connect with Stacia on social media:

Facebook: @StaciaDWrightofficial / @TheDriveSDW

Twitter: @TheDriveSDW

Instagram: @StaciaDWright

Episode Receipts/Mentions:

The Stacia D. Wright Show on Brite Radio Son Screen Film Festival

Please follow and like Planet Noun:

Hair: Puff Cuff and snazzy updos sans headaches

Once upon a time, I used to create hair buns using elastic bands, but I have decided to ditch them for most of my styling needs. They’ll still be used to section my hair or hold the ends of my hair in place for certain styles…but for these updos? Nah, son. I’m done.

Much love for The Puff Cuff! It’s becoming my go-to styling tool for updos!

At first, I was doubtful. But since I learned about this product from someone I deem trustworthy, even though we’re not well acquainted, I was more inclined to take a chance on this styling tool.

So I opted for the family pack. It includes four versions of the Puff Cuff. The four sizes are the Original, Junior, Mini and Micro.

This style was created using one Junior and one Mini. I also use Eco Styler gel with coconut oil and a detangling brush. Once styled, I spritzed a lightweight shea sunflower finishing sheen onto my hair.

Learn how to achieve this updo right here:

This styling tool has won my heart because I can wear a cute updo without using elastic bands, and the Cuff doesn’t generate headaches!

@ThePuffCuff has won my heart because I can wear a cute updo without using elastic bands, and the Cuff doesn’t generate headaches! Click To Tweet
Please follow and like Planet Noun:

Bastards never come in human form…trust me

Dedicated to anyone who’s ever held a grudge against their uterus.

Fibroids ain’t nothin’ but a bunch of dirty bastards.

This ailment, this uterine scourge, these uterine fibroids have had me exhausted, tired, fed up and have pushed me over the brink to tears more than once.

Bastards.

Some women are blessed (?) to have only one fibroid. Blessed, I say. But that’s the perspective of a woman who grows them like womb weeds and has multiple surgeries under her belt (literally) and a surgeon’s designer scar to prove it.

At times, I’ve internally scoffed at women who tote around one bastard. Internally. It would be too insensitive to let that half laugh escape my lips.

Uterine fibroids are actually—BASTARDS. No daddy to know, no sperm involved. But somehow, they rise from the walls of countless uteri worldwide and can figuratively turn a woman’s baby incubator into ashes. Click To Tweet

“Once upon a time, I had 25 fibroids removed from my uterus in one surgery alone,” I find a way to slide in that factoid during fibroid-related conversations. Not as a bragging right. No-never. Brag for what? These monsters are for the birds. Actually, they’re so bad, I don’t even want actual nasty pigeons to deal with them.

“Wow” is usually the reaction I get to that factoid—or something in that neighborhood. No one could figure out where all the bastards all hid. But my hacksawn uterus knows. It’s hiding and growing a crapload more.

Bastards.

But then my internal scoffs turn into “Oh damn”s when the uni-broid women share tales of pain…They ask me how much pain I grapple with or what’s my go-to pill to ease the pangs…or how many hot water bottles or lavender-smelling microwaveable beady heat pillows I use for comfort.

Truth is…my bastards aren’t horribly painful most of the time. There’s pressure and some discomfort, but for me, it’s the bleeding that’s the beast.

Bastards.

Flow gushes.

Bastards.

Bathroom rushes to beat the leaks.

Bastards!

Passing clots the size of a quarter or silver dollar…and bigger—multiple times daily.

Bastards!

The exhaustion and toying with iron deficiency anemia.

Bastards!

Surgeries for relief.
Knowing the blobs will return with time.
Being told the only way out is a hysterectomy.

Bastards! Bastards! Bastards!

The heaving sobs and tears.
Bastards soak what they soak best…and tears stain my face, my pillow.
Whatever normal life I wanted…the Bastards wove their way in and tainted it with overstuffed pad bags, baby and other types of wipes, extra changes of underwear and a towels—just in case things get too messy for disposable wipes.

The literal bastards.

See, an old meaning of the word bastard—is a person born of two folks not married to each other. It’s, like, 1,000 years past old school meaning, and I reject the whole illegitimate child idea. ALL children are legitimate. They’re here, alive, breathing=legitimate. Daddy known or unknown=legitimate.

Uterine fibroids, on the other hand are actually—BASTARDS. There is no daddy to know, no sperm involved anywhere in the creation process. But somehow, they rise from the walls of countless uteri worldwide and can figuratively turn a woman’s baby incubator into ashes.

Bastards. All of them.

But women and uteri containing people…of all stripes, colors, and with all ailments—Still. We. Rise. Rolling with all sorts of punches.

Even from no-class, disrespectful bastards.

This post has been updated to include an audio version of this blog post.

Please follow and like Planet Noun:

Episode 9: Uterine Fibroids—Disrespectful & monstrous body bastards

Meet my sister Lea. She tried to keep her mouth clean during this episode. So did I. She’s a hoot and a half…and my guest for this episode of Planet Noun….where it’s all about people, places, things, ideas.

So this time…. It’s a thing… well—depending on how bad you’ve got it, it’s a whole bunch of things….

It’s also about a place that all people encounter during life’s dawning days. The human uterus.

So it’s the last day of Uterine Fibroid Awareness Month… And Lea and I know about these benign tumors very well… They’ve been our fairly constant companion—for some YEARS now.

We want to be free of the monsters—that’s what she calls hers. But we’ve learned to live with them… Mostly in the shadows…mostly quiet about them. But we’re tired… Let me speak for myself…. I’m tired… woe’ out….and want freedom from the secret.

Hello there….My name is Liz… the host of Planet Noun…
And I have uterine fibroids that beat me up on occasion.

According to a National Institutes of Health fact sheet on Uterine Fibroids…
Most American women will get them sometime during life. They say one study showed by age 50…. 70 percent of white women and 80 percent of African-American women were graced with these bastards.

I saw one place that upped it to 90 percent for African American women…

My sister and I are NOT 50, and we have them. So we’re part of that number.

The fact sheet continues:
“In many cases, fibroids are believed not to cause symptoms, and in such cases women may be unaware they have them.”

We wish ours were docile. But nah, we’re all symptomatic all up in this joint.

This is a fragment of our story:

We’re also not alone in wanting freedom from these things.

From The National Uterine Fibroids Foundation to The White Dress Project
to the Fibroid Foundation… and also the doctors who are coming up with innovative, less invasive treatments…. There’s company on this journey.

Guest: Lea (with no ‘h’) Anderson—My lovely sister!

Hosted by: Liz Anderson

Links either referenced in this episode or for more information :

Fibroid fact sheet from the National Institutes of Health

The disturbing reason some African American patients may be undertreated for pain

Examining the Relationship Between Symptomatic Burden and Self-reported Productivity Losses Among Patients With Uterine Fibroids in the United States

A common problem few women want to talk about: Fibroids cause more than just pain

Related blog post:

 

Please follow and like Planet Noun:

Episode 8: Sixahwe Naturals–hand-making the future with vegan body products

Small business owners are fascinating because of their courage… or what I perceive as courage. Who knows, maybe some are faint of heart. 

But I doubt that. 

Why? 

Because when anyone ventures and goes against the grain of employee-dom (did I just make up a word?) there’s a risk of failure. Yes, there’s a risk with being an employee, but in my mind, it seems the uncertainty is greater for business owners. If you get fired from your job you can blame your wack boss…your fellow employees who are trying to do you in (whether that’s perceived, real or downright wrong). But absent environmental disasters, floods or other things out of your control, who you ‘gon’ blame if your business flops?  Seems that  losing a company of any size would be a hit to the spirit…so hard you’d need to duct tape and air pump your poor spirit daily just to get out of bed in the morning. 

That’s why small biz owners fascinate me. They’re willing to confront that risk every-durn-day. 

Like Ayanna Alexander of Sixahwe Naturals.  She makes products to keep the skin away from the throes of crust-ashiness.

Learn about the origin of the company name, why they decided to go into business, and an important lesson she learned about how to avoid getting pissed-off at your passion.

During this episode, there were a couple of references that you may or may not be familiar with. Ayanna mentioned two schools during our talk. One was an HBCU called Oakwood University,and a private high school based in Takoma Park called Takoma Academy.

Thanks for listening to Planet Noun!  The next episode drops in a couple of weeks!  

For more Planet Noun, follow on Twitter, Instagram and Facebook.

Guest: Ayanna Alexander, founder of Sixahwe Naturals—handmade soaps, lotions, body butter and more!

Hosted by: Liz Anderson

Please follow and like Planet Noun: