A Most Unlikely Diagnosis

24Aug2016 Filed under: blah-blah-blog

If you’ve been around me in the past few years, you’ve probably noticed me wheezing.

If you’re really close to me, you’ve surely noticed that I’m not as active as I used to be. I don’t go for walks anymore. I’m now one of those annoying people who will drive around five minutes just to get a closer parking spot. Amusement parks are my worst nightmare, but sometimes I suck it up and do it for the kids anyway.

Even though I’ll spend most of my time on a bench because breathing is such a pain in the butt.

Heck, I struggle to breathe while carrying laundry from the bedroom to the kitchen. I huff and puff when making the bed. Forget vacuuming and mopping. If you come to my house, you’ll see…Maid Mama has clearly been slacking off for a long time now, and ain’t NObody been picking up the slack.

And elevators? Oh my word. The most embarrassing places on the planet. Locked up in a silent box with strangers while I sound like Darth Vader nursing a bad case of bronchitis. People either ask if I’m OK or they stare at me wide-eyed, clearly mortified at the thought of catching whatever I’ve got.

This has been going on FOR YEARS. Years. I first remember it alarming me when I was on a walk with my friend Lori C. I could still walk a whole mile without sitting down back then, but I sounded terrible. At her advice, I made an appointment with my GP, who diagnosed me with exercise-induced asthma.

I think it was a placebo effect that the inhaler seemed to help a little, for a little while. I kept refilling the prescription and thinking if I could just get in better shape, if I could just lose some weight, I’d feel better. That’s what the doctor said.

About two years ago, I finally went back to the GP and said, “Look…this isn’t working. What’s next?” And he’s like, well, you don’t sound like you have asthma after all. You should get a cardiac and pulmonolgist work-up.

So I did. Heart checked out fine. Got a major long lecture on how I would breathe easier if I just lost weight. Felt shamed into believing that I was a lazy sloth who was reaping what I’d sown.

Pulmonologist did a sleep study and said I have sleep apnea. I never followed through on getting a C-pap. I just hated the way it felt, like trying to exhale into a full-blowing hair dryer pressed into my mouth. Every night since has felt like a gamble, but I don’t know how I could sleep at all that way. I asked him why sleep apnea would make me so breathless during the day, when doing even the simplest tasks. He said it was obesity. Obesity does all of that. My body wasn’t designed to carry around all this extra weight. Like, duh. (OK, he didn’t say “duh”, but I think he might’ve if we’d known each other better.)

So, nevermind that I’ve been obese basically my entire life, except with one short stint of bulimia in high school, and up until a few years ago, could breathe just fine. But hey, being fat IS the root of all evil. So I believed that my huffin’-and-puffin’ was entirely my fault.

Well. I found out today that it’s not.

And I’m not going to lie–my eyes teared up when the doctor told me that I wasn’t to blame.

I have subglottic stenosis, possibly caused by the autoimmune problems I’ve had since 2003. A lot of times, they don’t know why people have it. It’s basically a narrowing of the trachea below the vocal cords that makes for noisy, difficult breathing. He ran a camera down my nose and I got to see the whole thing. Pretty interesting stuff.

He seemed surprised that I’ve had this for years without it being diagnosed. But he did say that it’s a relatively rare condition and after I have a CT scan next week to see how bad it is, I’ll probably be handed off to the specialists at Emory. From what I’ve read, it’s manageable through surgery and dilation. It can recur and require more extensive surgery, but hopefully it won’t get to that point.

Now…I know this is long. But bear with me. You have to hear what led me to go to the doctor now, to begin with. I had kinda resolved myself to just having to live with this until it landed me in the ER or something.

I would totally have not been at the ENT today if I hadn’t broken my own rules last week.

It’s my policy to stay out of the living room during the day. The computer is in the dining room, my two homeschooled kids do a lot of their work at the table, and I’m not into any daytime TV shows. So there’s really no reason to be in the living room. My recliner (AKA The Chair of Doom) must be avoided at all costs if I don’t want to nap the day away. I mean, if my butt settles down into those sweet, soft cushions, I’m OUT. It’s over. (Must be from all that obesity and apnea…)

But…one morning last week, I made breakfast and I just wanted to sit with my feet up and chill, maybe watch something on the DVR while the teenagers were still sleeping. I clicked through the guide and saw that The Doctors was on next.

Y’all, I never watch that show. Ever. No offense to those who do (like my Mom–she’s their biggest fan) but it’s just not my cup of tea.

But I felt this unmistakable urging to click on it. Which I immediately suppressed and kept scrolling to find something I liked better.

Now, I’m not one who is quick to say “God told me” to do something. If there’s anyone whose mouth I don’t want to put words into, it is His. But I couldn’t find anything to watch. And that still small voice was still nudging me: “Go watch The Doctors.”

So, because I’m far too often like this…

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….I said, “Oh, alRIGHT!” and clicked back over.

And this is what I saw! (Check it out!)

And I was like, “Oh my gosh…that is ME!”

And I joined a Facebook group for those with ISS, and the more I read, the more I felt like I was reading my own experiences. But I didn’t really participate in any discussions because those “it’s all in your head…it’s your own fault” conversations kept creeping into my thoughts and I didn’t want to say that I had something that I might not actually have.

But I knew that I had to find out.

I’m so glad that I did! I’ve been needing to schedule an elective surgery for a scar-related hernia and the doctor told me today that I cannot be intubated until this is fixed. He just said, “That would…not be good.”

If Zach hadn’t had his accident, I would’ve had that operation this month. And I’d have been intubated and who knows what tracheal damage that would’ve entailed.

Thank you, Lord.

Thank you for everything. For luring me to my Chair of Doom at 10:00 a.m., for pushing me to watch a show I never watch, for leading me to a kind and compassionate doctor. For letting me be alive and OK. For giving me answers.

For reminding me that You move in mysterious ways.

And for the soon-coming gift of breathing freely again!

OH. MY. Goodness! I. Cannot. WAIT!

See ya later, Darth Vader!

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A Cup Of Aggravation

23Aug2016 Filed under: blah-blah-blog
Cup O Aggravation

You’ll never convince me that fast food employees deserve $15 an hour. Why? Because interactions like the following are not even remotely rare in my town.

Wendy’s is offering their small Frosty for 50 cents at the moment. Money is squeaky-tight, it’s hot as Hades out, and Tuesday is the one day that all three of the younger kids are away at school. So today felt like a good day to grab a cheap frozen snack on the way home.

Ha.

When we pulled up to the drive-thru speaker, it was silent. I wasn’t sure if I should say “Hello?” or “Is anyone there?” because I’ve heard that if you’re pushy, they’ll spit in your food. So we waited.

In silent, hot, hungry anticipation, we waited.

Actually, I lie. The speaker was silent. My youngest was whining that this was “taaaaakinnggg toooooo lonnnnngg” and the other two were bickering over something that I can’t even remember.

“Are you ready to order?” The demanding voice smacked my eardrum. I could’ve understood her irritation had she already greeted me and I was just sitting there. But there had been no pleasantries exchanged at all.

“Yes, I’d like four small chocolate Frosties and two small vanilla Frosties.”

Silence. Another LONG silence.

“OK. So that’s….four small Frosties and three small fries.”

Fries?

“No, I only ordered Frosties. Six small Frosties. Four chocolate, two vanilla.”

“NO, you SAID…” and then her attitude-drenched voice tapered off. And then I turned to my kids and whispered, incredulous, “Does this person really think she is going to TELL me what I said?!”

They laughed. Because they know their Mama and what happens to them if they try to tell me what I said when I KNOW what I said.

Silence. Another LONG silence.

“OK, that’ll be $7.42. Drive around.”

“Um…aren’t Frosties 50 cents each?”

“YES. I will take off the coupon at the window!”

I’ve done this before and there wasn’t any mysterious coupon to be configured, but hey, whatever.

So, we finally crept up to the window. AND…no one was there.

She finally sauntered over. “I took off the coupon. Your total is $3.75.”

Now, mind you, I’d been sitting there since 1962 holding three ones, a quarter and a penny in anticipation of a $3.21 total. Tax is 7%, so the total for six items at .50/each plus tax should be $3.21.

And I told her this. And I’m going to pat myself on the back because I smiled AND used my nice customer-service voice instead of the sarcasm-coated utterances which usually flow freely when teenagers irritate me at home.

She didn’t smile back. “Oh, hold on…” and she vanished again.

Sigh.

Is it just me, or should getting some discounted ice cream not be QUITE this difficult?

The crickets were chirping again before two girls appeared at the window.

The (manager?) glared at me and spoke slowly, seeming quite certain that I was too dumb to count, much less drive a car.

“This total is right,” tapping the screen. “You ordered seven Frosties.”

“No…I ordered six.”

She snapped around, told the girl, “You got seven on here!” Then the manager fixed the order and stomped off.

Defeated, she told me, “OK. That’s $3.21.”

I quietly handed her the cash and kept my mouth shut even though I wanted to shout, “I know that! I’ve ALWAYS KNOWN THAT! All 476 years that I’ve been sitting at this @#$% window I’ve known that I owed you three dollars and twenty-one cents!”

Then. THEN…

She just stared at my quarter and penny in her palm. She kinda poked them around with her long fingernail, looking utterly bewildered.

She keyed in the amount and when she got the change out of the drawer, it’s like a light bulb momentarily flashed as she realized that I wanted one nickel back instead of four pennies.

At least, I hope she realized that was the reason behind The Great Mystical Combination of Coins.

She thrust the nickel and the receipt at me, saying nothing. The girl at the next window silently passed me our Frosties.

I kinda wondered if someone might’ve spit in them.

So, yeah. Minimum wage for minimum skills. Which if pay were really based on skills, this girl should be making about $1.51 an hour.

Maybe round that up to $1.55 so she doesn’t get confused.

 

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Get Yer Goat Soap Here!

12Aug2016 Filed under: blah-blah-blog

Seriously, y’all. If you haven’t tried it yet, you’re missing out!

I posted earlier this summer about my new affiliation with O My! Goat Milk Bath and Body products.

Because of Zach’s accident, it’s taken longer than I’d planned to get back to you with what I thought about the fragrances I’ve tried so far. With so many fantastic scents to choose from, here’s my take on the following, saving my favorite for last!

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Summer Melon smells exactly like you imagine it would: like a sweet wedge of honeydew or watermelon, but more clean/green than cloyingly sweet. Refreshing. Summery. Nice.

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Flip Flops (can you tell that I was in a seasonal mood?) got to go along with me to Florida last month. I thought it would be a great scent for vacation, and I was right. A little beachy, a little sun-screen-y, but with a surprising hit of what I think might be mint? I’m obviously not a beauty products expert when it comes to differentiating fragrances, but I liked it.

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Clean Linen was a must on my list, because that type of fragrance is one of my favorites when I’m shopping for candles. I just adore that fresh laundry scent wafting through the house. The guys didn’t think this one was “too girly”, either. Just a nice, clean fragrance.

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Luck of the Irish is described on the O My! site as a “spicy-sweet blend of French Verbena and lemon, a green Florentine and Myrose sandalwood.” I bought it because I thought it might remind me of Irish Spring (which I love to smell, but it’s irritating to our skin). It did! It was a really nice, more masculine fragrance and my husband loves it. Big bonus–no itching afterward!

And finally…my favorite, my signature O My! fragrance, the one that I will have to order now in lotion and any other form I can find it…

Lover’s Spell.

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It’s just divine. Sweet, warm, floral and fruity all at the same time. It definitely cast its spell on me. Must. Have. MORE!

So, there you have it: some feedback that might help guide your initial purchases. Just be sure to click on my affiliate banner on the right side of this screen. And come back to let me know what you think!

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The Road to Healing

8Aug2016 Filed under: blah-blah-blog
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In the days following Zach’s motorcycle accident last month, there was a lot of driving between Orlando (where my parents and kids were) and Melbourne (where Zach was hospitalized).

The stretch of road we took was so pretty and peaceful. Lots of wide fields and grazing cows, white picket fences and stunning sunsets.

Beauty is particularly poignant when we’re in pain, isn’t it? It’s like, “How can everything still be so lovely when I’m so broken?”

My parents made the trek every single day. They brought the kids, who spent most of their time begging for vending machine snacks and playing Monopoly in the lounge. They were a welcome diversion.

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Eli and Violet were allowed brief visits with Zach, and were quite somber after. Jonah was too young to visit the ICU, and he was NOT happy about it. He said he KNEW that Zach wanted to be with him, so we HAD to let him in. It sure was hard to keep telling the little guy no. He said things like, “I can’t feel Zach in my heart anymore” and then he wrote this note and asked us to read it to his big brother:

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Talk about heartbreaking….

That whole second day is something of a blur now. Zach remained sedated and on the ventilator, to allow his brain to rest. Every time they tried backing off on the sedation, he shook violently and became combative, so they had his wrists tethered to the bed with black, seat-belt type straps to prevent him from pulling out any tubes.

The neurosurgeon said that agitation was normal with a frontal lobe injury and could resolve in one day, or in two years.

Or, never.

Can you imagine how crazy it felt to hear that? There was no way to know what we were up against. There was no way to know if our Zach would ever return to us, even if his body survived.

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They said he could hear us speak, so to keep it positive, and we did. We took turns sitting beside him, talking gently but sparingly, with the board at the end of his bed reminding us that his brain needed as little stimulation as possible.

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(I have to admit that the Activity Level cracked me up. I mean, he was fully sedated and on a vent. What else was he going to do?)

So it was a whole day of just being with him, something that parents of 18-year-olds don’t get to experience often. But since he couldn’t do anything about it, I tried to make the best of it. I prayed over him, mostly silently. I couldn’t hold his hand because of the straps, but I could lay my hand on top of his to warm it up. Mostly I just placed my palm on his upper chest, the part that I knew was uninjured, so that he would know we were there. I wanted to stroke his hair, or kiss his cheek, but his face was so battered, I couldn’t bear the thought that my kiss or touch might cause him more pain.

Man, it was hard to want to love and comfort him and be able to do almost nothing.

Donnie and I took turns sitting with him; other times we sat together. We took brief naps in the lounge because we weren’t allowed to fall asleep in the ICU, and during one break, met this awesome three-legged therapy dog, Sunshine.

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I read a book they gave me about traumatic brain injury and had to stop because it was just too depressing.

We had the sweetest nurse, Alie. She encouraged us to leave the hospital to sleep and shower that night. My parents reserved a hotel a mile away, to make it convenient for us to take turns sleeping and staying with Zach. But when darkness came that second night, I froze at the thought of leaving him.

How could a mom just leave her injured child alone like that?

Alie assured us that nothing would change overnight, and if it did, she would call us immediately. But Zach was likely to remain unconscious all night and wouldn’t really know if we were there or not. She warned us that the next day could be tough if they decided to extubate and take him off the sedation. (Boy, was she right about that…) And that we would need some sleep to face it, since neither of us had slept the night before.

It all made sense, but my heart just wasn’t getting it.

Donnie told him bye, and went to get the car…or something…I don’t remember. I just know I was standing in the corner of in that darkened room, the streetlights glowing through the blinds, sobbing silently into my hands because the thought of leaving him alone in that sterile, cold room simply broke my heart.

I don’t remember how I finally peeled myself away, or how I held it together long enough to make it out to the car, where I sobbed again on that mile-long ride while Donnie told me it was all going to be OK.

He let me out at the front of the hotel and there I sat in this fancy lobby, feeling totally alone for the first time in days, and completely out of place with my red-rimmed eyes, messy ponytail and stained shirt.

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A businessman strode by on his phone and I swear he glared at me like I was a vagrant or something. Yeah, I looked that rough.

We showered. Donnie immediately fell asleep. I couldn’t sleep. I’d been so wound-up-wiped-out for so long that I couldn’t shut off my thoughts.

Not when they kept wandering back to that chilly, white room and my black-and-blue boy, and the bleakness of a future that held no guarantees for any of us.

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The Longest Night

7Aug2016 Filed under: blah-blah-blog

Exactly one month ago, at this hour, this was my view:

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I posted it on my social media and called it “The Longest Night” because it absolutely was.

Longer than a night of labor. Longer than all those nights with a screaming newborn at the breast. Longer than nights spent comforting a feverish child.

Sitting frozen beside my son in a trauma intensive care unit, the minutes stretched into hours. Mechanically-controlled breaths and heart monitors beat out a tune that reassured me and terrified me all at once.

Their rhythm said he was alive, but every pause whispered that there were no guarantees.

Everything they’d told me darted around in my mind like bees in a hive as I sat there, shivering.

Traumatic brain injury. Brain bleed. No prognosis except to wait. Fifty-fifty chance of survival. He’d have died on impact without the helmet.

Thank God for the helmet. But why was he on the motorcycle to begin with?

When I took that pic at 2:40 a.m., I was numb.

I’d already raged. The owner of that motorcycle was on the receiving end of all my fury and had he dared to step in front of me, I’d have beaten him senseless while screaming over twenty years of built-up anger in his face. I have never, ever felt such an overwhelming necessity to keep myself restrained, nor ever felt such a passionate desire to injure someone.

I’d already melted down. When I walked (that Sally Field mama-walk you remember from Steel Magnolias) down that long ICU corridor and stepped between those sliding glass doors, when I saw my son, still, with tubes everywhere…and that shock of crimson-soaked hair splayed against the starched white pillow…when I saw dark, dried blood splattered across his face, I clasped my hands across my mouth and moaned into a wide-eyed, horrified sob like I’d never known.

No, no, no. NO! Oh, God. No.

Why had he decided the week before to dye his hair blond? His naturally dark hair would’ve muted the quantity of blood instead of showcasing it like a stop light.

A mother should never have to see that much of her own child’s blood.

When Donnie had called me hours before and said Zach had been injured, I didn’t immediately fear the worst. I assumed it was minor. It had to be minor, right?

It had to be.

My parents, sisters and I hopped into cars and started the hour-long journey to get where Zach was. And there was a terrible traffic jam that delayed us an additional hour. Each time Donnie called to update me, it chopped away my optimism, and nausea swelled up in its place.

Zach had been seizing on the scene. He was unresponsive. His brothers and sister had seen him loaded into the ambulance.

I felt sick for them. I just needed to get to ALL my babies. And I have never felt so helpless, so stuck, so unable to make something necessary happen.

I dug in my purse for my stash of Zofran. Stress always hits my gut first. But I was still not crying. I was focused on a mission. I was so grateful for my sister driving me but so frustrated by the gridlock that blocked our progress there.

The traffic dragged out so long that we had to exit for a bathroom break. As my mom, sister and I crowded into a Burger King bathroom, Cherie asked me if I needed anything. And that one simple question snapped my focus on the mission. My face crumpled into tears.

“I just want a Coke to sip on because I feel so sick.”

And she handed me some paper towels to cry into. And then I stood outside hugging my dad in the humid Florida twilight, while we waited for the others to get my drink and some food to bring to the kids.

Blessedly, the traffic cleared. We got to the hospital. I hugged my husband and my other kids, hard. And I wanted to help all of them at once, but couldn’t.

There are a lot of hard things we face as moms, but feeling helpless has to be one of the hardest to deal with.

So, yeah. By 2:40 in the morning, I was numb.

Because you just don’t ever think you’ll see your child like this. You just don’t.

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We had a good outcome. I’m going to write more about it tomorrow.

But for tonight, I’m just remembering. Like the Israelites, who always made a monument to God at places where He moved on their behalf, this post one month later is my monument, my lasting testament to His goodness.

I have been listening to this song, and editing pictures and crying some more.

Because it was the longest night in my life, but God saw us through.

 

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