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.
(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 resultof 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.
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.
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.
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.
(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.
Fundraiser for #PGFD firefighter Jesse McCullough of Station 30, Landover Hills. The Pier Oyster Bar and Grill in Edgewater packed with his family, coworkers and more. Md. @GovLarryHogan, a cancer survivor, is also here to show support. pic.twitter.com/LdFVc07vy6
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.
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.
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.
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!
The best sanitary supply bags are hidden in plain sight…
Cute.Jazzy.Snazzy… with a little bit of flair or not—depends on what floats your boat and makes your heart sing.Because your uterus isn’t singing during your period. It’s weeping blood.
In this bonus episode of Planet Noun, Liz and her sister, Lea, pick up with their discussion about stuffing the perfect Pad Bag. That’s just another name for a to-go sanitary/feminine supply bag.
In a nutshell, here’s what you need:
A cute bag.Animal print is recommended, but whatever design or color makes your heart sing.
A pack of pads in a size that suits your needs.
A pack of tampons that suit your needs. For example, I’ve been trying organic tampons by L.
A ‘backup to the backup’, is needed.Back in the day, Le-Le and I used Depends, which are diapers for incontinent adults. There are other brands available as well.A really good friend of mine recommends Always Discreet.
Wet wipes, towels, soap, and “smell good.”
A portable shower (kidding…but if you can swing this, we ain’t mat atcha!)
Shoot, you might as well pack a doggone overnight bag.
From there, we also talk about praying the ‘Broids away, and whether we think that works…to how social media can be harnessed to findconnection with others grappling with uterine fibroids.
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.
“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.
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.
Bathroom rushes to beat the leaks.
Passing clots the size of a quarter or silver dollar…and bigger—multiple times daily.
The exhaustion and toying with iron deficiency anemia.
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.
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.