Saturday, May 25, 2013

Joshland Unfiltered Podcast: Episode 6 - Living With B. Cepacia


The newest episode of the Joshland Unfiltered Podcast is up and ready for your hearing aparatuses. Or is it aparatusi? Anyways...

In this episode we chat with Diana and Lauren about living with CF and the "big-bad-bug" that is burkholderia cepacia. They make no bones about the fact that b. cepacia is a serious respiratory bacteria that comes with many life-altering consequences, but they aren't going to let it stop them from living their lives and achieving their goals.


In non-CF babble...err...content, we talk about stupid things people say to CFers, dogs dancing to dubstep and Barry Manilow? Yes, Barry Manilow. 

This was an interesting episode for me since I know very little about b. cepacia. In fact, the only thing I was told about it is that it's a terrible bug that know one wants to get because it can do major damage to your health and limit your options for care and transplant during the end stages of cystic fibrosis.

In other words, it's a nameless, faceless monster that has everyone freaking out about who they're around and what they touch...which is completely understandable because I, for one, don't want to get it and I certainly am frustrated for Lauren, Diana and anyone else who cultures it.

At the same time, B. Cepacia has a lot of different strains and affects every person who has it differently. You can't predict how it will grow or change, you can't predict what your health will be like in one year or ten years, so I think Diana and Lauren are great examples of two people who are making the most with their lives despite the tough hand they've been dealt. 


I took more from their very happy go lucky attitudes on and off air than I did from the b. cepacia talk. Don't get me wrong, I learned a lot from them about B.C., but I found their joyful presence to be so uplifting.

There was no hesitation in their voices and there was no sound of constant fear in their voices. These two women were honest with their thoughts, the reality of their futures and the happiness they live in today. As with all of our guests, I feel more inspired for having known them and sharing our conversation with all of you. Together we're educating the masses and we're showing the world that people with CF are just normal people who like videos of dancing dogs and are HUGE Barry Manilow fans. 

We are more than CF. 


JUP on iTunes:

https://itunes.apple.com/us/podcast/joshland-unfiltered/id567358131

Podcast Player on the JUP Fanpage:

https://www.facebook.com/JoshlandPodcast/app_282096688512542

For a more technical explanation of B. Cepacia check out the CFF website:

http://www.cff.org/LivingWithCF/StayingHealthy/Germs/Bcepacia/

Check out Diana and her husband George's care care products that benefit the CF Foundation:

http://www.65rosescarcare.com/

And check out Lauren's blog:

http://ihavecfsowhat.blogspot.com/


Peaceful Things and Stay Positive,

Josh and Tim



Saturday, May 4, 2013

Turning Red-Faced: Explaining My CF Cough


I didn't have a constant and noticeable cough until I was in my mid-twenties, but now—healthy or sick—it's a daily occurrence.

In my younger days, I'd try to suppress my cough in public so I wouldn't look stupid in front of other people. As an adult, I just stopped caring because I decided breathing comes before personal aesthetic concern.

Sometimes my CF cough is like a natural disaster, easily predictable because the slow build up is there for all to see. When it hits, it wreaks havoc on any occasion—wedding ceremonies, holiday dinners quite movie theaters and quite restaurants— then disappears as quickly as it came.

My friends who know me best will look at me with mild concern, cocking their head like a dog who heard a funny noise until I give them the high sign that everything's cool. My family will outright ignore me unless I give them a reason to worry or the cough becomes more prolonged than usual. For the most part, they just let the chaos ensue without a flinch because they know I hate the attention.

But then, there are the people that stare. The strangers who glare but make no attempt to help. Sometimes they'll make a half-hearted gesture of concern, but I can see them trying to recall the Good Samaritan Law in their head, weighing the risks and benefits of helping this pitiful guy out. I don't blame them...I'm certain I've done the same thing in my lifetime, but it doesn't make it okay.

That's when I just let it fly... over exaggerating my situation, pretending to play the most violent game of charades known to man, smiling with sinister delight because I'm so tired of being stared at for something I can't control. I have no guilt over this because sometimes freaking people out who gawk like I'm a sideshow attraction is the only way to have control of an uncontrollable necessity.

People liken having CF and coughing to drowning, but I've never felt that way. If I had to describe it to a normal person, I compare it to something more relatable...like choking. You know the feeling...the gag sensation and that involuntary panic you have when something goes "down the wrong pipe". You scamper around the table searching for a a glass of water to help you dislodge the offender or hope that— if you do collapse despite your best efforts—someone with graciously perform the heimlich maneuver on your prone carcass before you completely pass out of oxygen deprivation. Suddenly, the food moves through your esophagus, your face goes back to human form and you sit there embarrassed that it happened...regardless if you're by yourself or in a crowded restaurant. The CF cough is just like that, except instead of food...it's mucus. At least for me, that's how it goes.

Until recently, I never realized how I looked when I cough. Perhaps I just forgot because I'm rarely in front of a mirror on those occasions, but I hadn't seen what I looked like when it happens in years. My face turns fire truck red, which is fitting because my entire face feels like it's engulfed in flames. My eyes turn bloodshot and my body trembles, convulses and contorts in an effort to clear this wretched, infected fluid from my lungs. I hated how I looked, I hated how it felt and I hated knowing that it will happen again...that happens all the time.

While I hate it, I understand it's purpose. As Dr. Abosaida from Blanks Children's Hospital so bluntly and eloquently put it during his presentation at CF Education Day:

"You cough, you live. You don't cough, you die."

I laughed my ass off while many of the parents in attendance listened in mild shock. I laughed because it was so simple, but so very, very true.

So I apologize ahead of time if I ruin our outing, our dinner or our matinee. I hope that my phlegm-purging hasn't hindered your theater experience or put a damper on your evening out. You'll have to forgive me...I'm trying to breathe...trying to live...and it looks @#$% ridiculous and frightening. You're welcome.

Peaceful Things,

Josh

Wednesday, May 1, 2013

Squeezing Wisdom From a Ripe Avocado

An elderly woman frantically started waving her arms in front of my face while I was picking out avocados at the grocery store. I couldn't hear her because —being the youngster than I am—I was being anti-social and listening to a podcast while I was shopping. I quickly pulled out my earbuds, gently grabbed her arm and said:

"WHAT'S WRONG?! ARE YOU OKAY?!"

As the entire produce section stared at me, I realized I still had half an earbud in, so I was yelling loud enough to wake the dead. I'm an idiot.

"I'm sorry to bother you. I see you're shopping for avocados and I was wondering if you know how to tell if one is ready to eat?" she replied.

"Well, I'm not a avocado eater, but I can sure help you pick one out. I do it all the time because I buy them for my wife. She loves them." I confidently stated.

"Oooooh, you go to the grocery store and know what your wife likes too?! He's a keeper." she proclaimed to anyone within earshot.

"Well, I do my best. She's my sunshine and I adore her. You know, I'm happily married to my wife...at least until she finds somebody better." I sarcastically quipped, telling this woman how that's our running joke and our ability to poke fun at each other is one of the best things about our marriage. 

All of the sudden, this woman started crying.

"It's so nice to hear that from a man. That you love her and would do anything for her. That you don't take your marriage for granted. It's rare nowadays. People get divorced at the first sign of trouble, but marriage is hard work and it's nice to see that you appreciate that."

As I blushed with humility, she went on to tell me that her husband died two decades ago and she's been so lonesome for him every day since then. That she sits alone at dinner and talks to the chair he used to sit in at their table. That her grandson died of Chronic Obstructive Pulmonary Disorder a few years ago and she wished he'd had the chance to meet a girl like I have. That she has conversations with anything and anyone that will listen because she loves people and she's afraid to be alone. 

I took a deep breath and shared a summary of my life with CF. How—even though I've had and continue to have a lot of darkness in my life— I've been blessed with so much in 34 years, more than most people have had in their lifetime. I told her that I didn't understand COPD, but I could understand not being able to breathe. That I know how precious life is and I cherish every day with my wife. I promise that I'll never take our time together for granted.  I gave the woman a hug and a kiss, then I took our picture together to share our moment with you.

I get scared that I'll die young. That my wife will be a widow and that if we ever choose to have children, they will someday be without their father. I know they'll be okay without me because life goes on and people have lived through worse. Perhaps someday Carly may get remarried to a "normal" guy without all the extras. That things would be simpler for her than they are right now. And that's what I'd want for her...but that's forecasting a future that no one can predict. We don't know how much time we have and it's unfair to the present to try and predict the future.

So I'll spend each day of the rest of my life loving her. The sparkle in her eyes. The way she has a slight dimple in one cheek that only appears when I really make her smile. The way she asks me how to wear her hair when we go to my speaking events, not because she has to, but because she wants to look her best for me even though I think she's gorgeous no matter what she wears.

Joshland note: Honestly, she could be on her third day without showering, wearing sweatpants and a dirty old t-shirt and I'd still try to put the moves on her.

I adore how we lovingly tease each other and she does so with a playfully evil giggle. How she always pushes me to be a better person while making sure I protect my health and my heart. How she loves me for me, she doesn't care about my CF bullshit and is my link to my real life. She reminds me that life is more than just CF and that I need to separate my role in the CF Community from my role as a regular man who has a whole other universe to tend to and love on.

She will love me forever because that's what she promised to do, just like this woman promised her husband years ago. That's an amazing gift to have.

Life provides little reminders of what's important at the most unexpected places...even at the grocery store squeezing avocados.

Carolyn, you're a beautiful angel. Thank you for loving me when I unknowingly needed it. Thank you, Carly for being my angel and the boss of me. I've never been happier.

Peaceful Things,

Josh

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Peaceful Things ~ Josh
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