Showing posts with label Primary Ciliary Dyskinesia. Show all posts
Showing posts with label Primary Ciliary Dyskinesia. Show all posts


Win of the Week

It's Friday, Friday, gotta get down on Friday...!

(You know you've missed that song.)

Terrible songs aside, we've made it, my friends. It's the end of the week, and we can all let out a collective sigh of relief. Let's do it together, shall we? Ready? 1... 2... 3!

Yeah, that feels better.

And now it's time to party! Why? Because we've made it through another week. We've survived the ups and downs of life once more, and we could really use a moment to rest. 

That, my friends, is why we gather today to celebrate our Win of the Week!

In case you're unfamiliar with this post, it happens every week. We've all been through some highs and lows, but we really want to focus on the highs today, no matter how high or low they are. So we celebrate together, shamelessly sharing the highlight of our week, also known as our Win of the Week.

And because we're party animals, we don't just celebrate one win, we celebrate two! We distinguish between our "real" lives and our "digital" lives, because sometimes, we forget that they're separate and we need that reminder. So two it is!

Personally my real-life Win of the Week would have to be my workout on Tuesday. I'm in the middle of a running schedule I found that is perfectly suited for someone like me. The first week was all walking. The second week introduced a little jogging.

I was absolutely terrified of running. I haven't been able to run at all since early college or high school - my lungs haven't quite been up to it. However, I didn't let that fear stop me from trying...

And I nailed it!

I ran for a minute straight, followed by 3 minutes of walking. And then did it 4 more times! It felt incredible. And I know it seems like a very, very small step, but for me, the mental hurdle of running has been huge. It was an incredible release knowing I could do it. So I did it again on Thursday!

It was amazing.

Meanwhile, my virtual Win of the Week occurred yesterday. Recently, I've hit a wall in blogging. I get about the same number of pageviews/visits every day, regardless of what I post.

Yesterday, though, destroyed that rut. Obliterated it.

More than anything, I desired exposure for PCD, because the more people are aware of it, the more can be done for those of us with it. And it was huge! I had quadruple the pageviews of a typical day (which still isn't a lot - don't get me wrong). And I appreciated each and every hit I received - I imagined every single one of those as a person learning about PCD for the first time, and it felt incredible!

So there you have it! Those are my Wins of the Week!

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What about you? What has been the highlight of your week? Anything exciting going on with your blog/website? Feel free to shamelessly share a link or two in the comments section, along with your other Wins of the Week!


Our Story

We all have several narratives that define our lives. Some involve our parents, others involve our spouses. For me, one of the defining narratives of my life is my journey with a chronic illness.

However, this is not my story. This is our story, because I've never been alone in this tale.

This is the story of how God has wrecked and rebuilt the lives of my mom, my wife, and myself through PCD.

... ... ...

This story wouldn't be complete
without these two by my side.
The beginning of our journey with PCD was rough, as it is with most people. Thankfully, I received my diagnosis around age seven or eight, but that was not until my family and I had already experienced immense pain. My mom, Brenda Grow, had this to say about my life, pre-PCD: “At 6 months of age Adrian started throwing up his milk and arching his back. We took him to the doctor and ended up he had spinal meningitis… They proceeded to do x-rays then and realized all of his organs were reversed! What a tailspin! Literally!”

At such a young age, PCD was nearly impossible to diagnose. However, the telltale sign of situs inversus (total organ reversal) was present, as well as hydrocephalus (“water on the brain”), a disease that may be connected in some ways to PCD – research is unclear about it at this point. It was not until I was older, around kindergarten-aged that my mom started to notice other odd symptoms. “Many mornings, we would be standing together at the bus stop and Adrian would cough until he eventually threw up mucus. After throwing up this conglomerate of yellowish-brownish goo he felt much better… this was a great cause for concern.” As a child, I personally knew something was different. I felt like I had what other kids called asthma, but mine seemed a lot worse, and I had a lot more doctors and medicines than the rest of the asthmatic kids.

Our road to diagnosis was long and difficult. Through infant spinal meningitis and my morning cough-fests, something was not right. According to my mom, our family doctor agreed, and began by running allergy tests on me. Upon discovering my allergy to mold spores, my doctor referred us to a pediatric pulmonologist, who he said would then narrow down the problem to something more specific. This led to an original (and typical) misdiagnosis of asthma. However, we could not quite get things under control, like most asthmatics could. We continued testing, including sweat chloride tests for CF, but nothing was returning positive. Somehow, someway, my doctor stumbled upon my original diagnosis of immotile cilia syndrome, which we now know to be a misnomer for PCD. And though we now know this mystery illness’ name, it still is shrouded in confusion. My wife of 3 years, Kalyn Waller, gave us these insightful words: “The journey for diagnosis seems to still be going on. Although he got diagnosed as a kid, before I ever knew him, it seems like all of us, including the doctors, are still figuring out what’s really wrong with him and the effects it has on him and his life.”

Originally, finding a doctor was not difficult. The first referral our family physician gave us was golden. My pediatric pulmonologist was a determined woman, and she would not give up on me, regardless of how sick I got. She tried every trick in her book, including keeping me under her watch until the day I turned 19, a year later than typically permitted. However, since then, doctors have been a dime a dozen. Kalyn puts it well: “It’s difficult to find a doctor; it’s even more difficult to keep one. They only have so many ideas and so it seems in order to stay healthy you have to figure out when you’ve used up all of their ideas and move on to someone else.”

Since my diagnosis, I have “used up” several doctors and their ideas. When I turned 19, I was transferred to an adult pulmonologist. He seemed smart, but he did little to nothing to care for me – no antibiotic regimens, nothing. After half a year, I lost my insurance because I got married – the new health care laws had not taken effect yet. It was all downhill from there. I only saw him a few more times, when I was willing to shell out the $300+ for an appointment, where he would literally tell me: “I’m not sure, maybe you should go to Canada.” No joke.

At the time, I did not mind his unhelpfulness. I did not know that PCD required such active care, and in my teen years, my lungs worked pretty well – I was able to exercise vigorously and play sports as I wished. Someone told me around this time I should try applying for disability. I did and was denied, and thought nothing of it – I could still do anything I needed to.

It was not until a few years into college that I had hit my breaking point. I could no longer carry my backpack without having to sit and wheeze and cough for 5 minutes afterward. I could barely climb stairs, and I was no longer able to play sports with my friends – our main method of socialization. I was an 85 year old trapped in a 21 year old’s body.

Thankfully, my in-laws were introduced to a doctor in town who was new and practicing what he described as “concierge” medicine. For a monthly fee, he was available 24/7 to his patients. It sounded like it was worth a shot, so we called him up and set up and appointment. During this time, I finally decided to re-apply for disability – I figured I had a shot since I could barely walk.

After meeting with this new doctor, a family physician, he had a lot of great ideas that I had not heard before. He was able to consult with a pulmonologist to fill in the gaps in his knowledge, and he helped me to secure my first inhaled antibiotic treatment – nobody had EVER told me that it existed. He also told me I should be sleeping with oxygen – the difference was night and day after that! No more debilitating headaches after waking up!

Eventually, I was approved for disability insurance and was able to go through 3 weeks of IV antibiotics immediately following a month of TOBI. This really kicked the crap out of my infection, and set me on the course I am on today. After getting insurance, I stopped seeing my concierge doctor – he had exhausted his ideas for me. However, he encouraged me to seek out the pulmonologist he had previously consulted with to become my primary caretaker for my lungs.

Since then, I have seen my current pulmonologist three or 4 times. We have been on a quest to help me gain weight – I used to weigh 110 lbs (and at 5’8”, that is nothing!) and now I weigh 140 lbs. It has really helped my body to utilize oxygen better as I have gained more muscle over these recent months. I recently ran for the first time since early college/high school – that was quite a milestone for me, even if it was just for a minute. But as I am seeing, fighting PCD is all about baby steps. After all, taking baby steps over a lifetime can lead to a huge change.

Living with a chronic illness is not for everyone. It takes a toll on a patient’s life, as well as on the lives of those around him. When asked about the impact of PCD on her own life, my mom expressed feelings of overwhelming fear, especially of the unknown. “The impact of the diagnosis for me at first was overwhelming in that I wasn’t aware of the extent of danger this diagnosis was and didn’t know enough to be either scared or leery.”

Meanwhile, PCD has affected my wife personally as well. She says, “PCD takes up a lot of time. I have to take over doing things that he normally does when he is not feeling well. It makes it difficult for me to be tired or sick when he’s not feeling well.”

These are situations which doctors are often unprepared to address. It may be routine to address fears of a patient, but a patient’s family experiences many of the same fears, in addition to other feelings of helplessness and desperation. Personally, the biggest impact PCD ever had on my life was during my freshman year of college. I moved away for school and was living in the dorms. It was incredibly difficult to keep up my medical regimen during this time. Whenever I was awake, I was either at school, doing homework, eating, or hanging out with people. I did not want to be stuck doing the VEST while others were having fun, especially if others were around. It was embarrassing and difficult to have to explain to every single person who walked by my dorm room why I had so many machines and why I had to use them so often.

Now, more than ever, PCD seems to wreak havoc on my personal life. Many of my friends socialize by playing sports or going on adventures – many of which I am unable to participate in. I am an adventurer at heart. I love doing things – physical things. I always want to be doing something, but that has really changed these last few years. Now, I am too tired to move at some points in the day. Luckily, I have picked up other sedentary interests, such as blogging, reading, and playing video games. However, it really stinks that I cannot be outgoing and adventurous on a whim, like I truly want to.

On a more personal level, PCD has also affected the way we are choosing to start our family. We are planning on adopting and possibly becoming foster parents in the near future. However, my wife and I both are concerned that agencies might reject us outright because of my condition. I want nothing more than to care for children who need a home and someone to love them; it would be devastating to discover that PCD might take this dream from us.

The future for my life, especially concerning PCD, is both scary and exciting. My mom and wife echo these sentiments as well. My wife expresses a few desires: “I’d like to be able to more clearly understand what’s going on. I’d also like for more treatments to be available so he can stay healthy and live as normal of a life as possible.”

My mom’s concerns are very similar. “The biggest fear for my child of course, is his own life. My hope for Adrian is that he will live a normal life span. The reality of the PCD’s impact on him cannot be minimized; hence why I cannot say ‘healthy’ life span along with normal. . My hope is that he is able to get the treatment as needed and if at some point in time he may need a transplant, then my hope of course is that he is able to do that.”

Personally, I am not sure what to make of the future. My biggest fear is leaving my wife too soon. I know she knows what she signed up for when we got married, but it has all happened so much more quickly than either of us thought it would. It is terrifying to think there is a possibility that my life might be shortened, but I am optimistic; I think I will live a full, lovely life. But that does not mean the fear does not creep up from time to time.

Eventually, I would like to find more therapies and/or treatments to help manage my health. I would also like to find some sort of exercise regimen suited to my particular strengths and weaknesses, one supported by research to help maintain lung function and capacity. Ultimately, I hope that eventually, whenever I do get a lung transplant, I might be able to breathe again. But more importantly, I hope that I will live as long as possible, without complications, transplant or not. The future for us is intimidating, but not nearly as intimidating as what we have already overcome together.

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This story isn't exhaustive - there are several others who have joined us in this journey and who I wouldn't be here without.

Ultimately, it's important to realize that regardless of what narrative we're living, we're never living it alone.

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Questions: What narratives have defined your own life? Who has been by your side through your journey? How has it affected them?

Did you enjoy this post? If so, I'd appreciate you subscribing to Life Before the Bucket and sharing it with your friends. Thanks a million for reading!


Enjoying the Journey

Story time!

Last night we had a meeting with our graduating class to discuss our school and what it is doing well and how it could improve. As with any good meeting involving college students, we were bribed with food. More specifically, pizza. I gladly accepted the bribe and made my way to the meeting.

Now, in order to understand this story, you have to know that I have a chronic lung disease. I was having a particularly rough day. Walking slowly felt like sprinting to my lungs, so I took every chance I could to take a break, including riding the elevators at our school (which I do every day).

Well, earlier that day, I had taken a ride up our newer elevator to the library. It decided to start going up before the doors were closed, which was a little freaky, but it quickly realized its mistake and stopped. I was grateful, because I wasn't in the mood to be stuck on an elevator.

Cue the meeting for pizza a couple of hours later. I still was feeling miserable, but I was really hungry, so the pizza seemed like a fair trade off for my lungs to think they ran a marathon to get there. Per usual, I took the elevator (a different one, mind you). This elevator always smells... unique. Some kind of delightful concoction of dead possum, bad perfume, and body odor. Spending more than a minute on it most likely shortens your lifespan by years (my unofficial guess; experiments are pending). 

As usual, I parted ways with my wife as she climbed the stairs and I waited for the slowest elevator on earth. It eventually arrived, I stepped in, hit the button to go up, and was off to the...

And then, all of a sudden, everything stopped.

The elevator was silent. No movement. Thankfully, the light was still on inside of it, but it was definitely stuck.

Now, granted, odds would favor the fact that if anyone at our school was to get stuck in the elevator, it would be me. I'm a glutton for punishment, I suppose. But seriously?

Not cool, sketchy elevator. Not cool.

I promptly called my wife to address two concerns:

Concern One. She had to get me some pizza. I had no idea what the food situation was like, and college students can be like ravenous wolves around free pizza, so I had to ensure that my time in the elevator wouldn't be for naught. I realize my priorities may appear to have been a little confused here, but I assure you that it made sense at the time. In fact, it still makes sense.

Concern Two. "Oh, yeah. Hey, while you're stealing a box of pizza for me, could you let someone know that I'm stuck in the elevator. No biggie."

All I hear after that point is a huge ruckus in the background as my wonderful wife is trying to find someone who might actually be able to do something about my unfortunate plight. She eventually tells me that she's told someone, and then we say goodbye. And no, we didn't say "I love you," just in case the elevator was the death of me.

We're terrible married people.

At this point, my lungs were reminding me why I took the elevator in the first place. So I quickly sat down, because I had no clue how long I would be in that wretched box. And as I sat, I realized how weird it is to actually sit on an elevator. It's like the epitome of laziness. But there I was, just chillin', really craving some pizza while sitting on the ground of the elevator.

Like I told my wife, no biggie.

Some of my funnier classmates decided to pay the elevator a visit. One of our friends, in particular, decided to "coach" me through escaping. She failed miserably, but it made for a good laugh (though I realized that laughing may be detrimental at that point - there's no telling how bad inhaling the air from the elevator is for your health). 

And so, that's why you're reading a post that I'm writing from an elevator shaft!

Just kidding. 

I got out. But being stuck in there overnight seemed like a better story. Forgive me.

Moral of the story? Well, I'm sure there's one hidden in there about riding elevators and the importance of climbing stairs, but that's beside the point. I think, more than anything, what I took away from this adventure was this:

The destinations we seek are often not the point of it all. It's the journey itself that often teaches us the most. 

It's during the transition that we become who we are. And really, when aren't we in transition? Right now, we're about to move. We're also about to graduate. And we're about to find a new church home. And we're about to make new friends. And ultimately, we're about to start a new life.

And while it sounds like an awful place to be - really, who enjoys the road trip more than the destination? - we are making the most of our moments "in between." And even as I prepare to sing in a choir program about heaven, I think this applies in the same way and ties into our mission/theme/goal here at Life Before the Bucket: "Living life to the fullest - every single day."

I most likely will remember nothing about the meeting we had last night. I might remember that it involved pizza, but that's about it. What I will remember is the trip there.

It's easy to skim over the transitions in our lives, hoping to get to the next big event or the next meeting or even just the next day. But it's often not the destinations that make the best memories - it's the trip there that builds character and allows us opportunities to grow and become the people we want to be.

Today, choose to be present, regardless of whether or not you've arrived where you want to be. Enjoy the journey, even if it takes longer than you'd like. And make the most out of the unexpected. You'll never know what great memories you could be creating if you never give life a chance to make them.

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Questions: What transitions are you in the middle of right now? How do you handle the "in between" times? What are some of your favorite road trip memories?

Did you enjoy this post? If so, I'd appreciate you subscribing to Life Before the Bucket and sharing it with your friends. Thanks a million for reading!

image credits - moiseg, arinas74 -


I've Got a Confession

Alright, fellow Bucketeers. I've got a confession to make.

But it isn't happening here!

Caleb Wilde, over at Confessions of a Funeral Director, has so kindly allowed me to use his web space carry out my ultimate plan to takeover the internet to share a post with him and his crowd.

Rumor has it that there will also be a ridiculous picture of me (and my beard) posted as well.

So come on over and read what I've written, leave your thoughts in the form of a comment, and share it with your friends!

Click the image to check out my guest post!


Re: And Finally... Thing #3

This is my final (and my favorite) repost from 2011. Share it with all of your friends and family - we need to raise awareness about PCD! And while you're at it, find a way to follow Life Before the Bucket! Happy New Year!

Picture this:
You wake up in the morning. You cough a few times, and a little phlegm comes up. You hardly notice and swallow it, willing yourself to find the energy to move out of bed. You crawl out, walk out of the bedroom, and quickly find something to drink - you know it'll be painful otherwise. 

Unfortunately, you don't reach the kitchen in time. The coughing begins again, only this time, you can't suppress it. It won't stop. And you're not even coughing anything up! Next thing you know, you're desperately swallowing air, trying to keep from throwing up the contents of your stomach. You fumble through the cabinets for a cup as you're still trying to control your body. You quickly run it under the sink - oops, the water was on warm (no time to worry about that now) - and take a swig of the lukewarm water.

Your chest depresses, your shoulders relax, and your breathing slows a little. You might still cough, but for whatever reason, it's controlled now. And now you're out of breath from walking to the kitchen.

You lean on the counter for support. You huff and you puff, but there's very little respite besides waiting and hoping your heart rate and breathing slows. A few minutes later, you've caught your breath enough to make some coffee. At least this part of the day isn't so bad...

Sounds rough, right? 

It is.

That's life as usual with my lungs. And that's only the first 10 minutes of the day.

So without further ado, I introduce Thing #3 to you...

Thing #3 is... Primary Ciliary Dyskinesia.

Ugh. My misplaced heart sinks a little just typing it.

I know, I know. You're scratching your head again. Hopefully, you've already read about Thing #1and Thing #2. If not, you really should. They much more upbeat and fun. If you've already read about them, though, you should have figured out that all of this is too wacky for anyone to make up. I do, indeed, have three diseases that any spelling bee champion would be proud to spell: situs inversus, hydrocephalus, and primary ciliary dyskinesia.

Now if we want to get technical, doctor's actually describe the combination of Thing #1 and Thing #3 as Kartagener Syndrome (which is a lot easier to say and spell). Statistics say that approximately 10,000 people in the United States are living with this diagnosis. However, not nearly that many people have actually been diagnosed. The backwards heart and organs is pretty obvious. The lung disease? Not so much.

Primary Ciliary Dyskinesia (PCD) is, quite frankly, a pain in the butt. The overly simplistic way that some doctorsmay describe it is that it is similar to Cystic Fibrosis (which a lot of people have heard of). However, that's just not true. PCD is not CF. However, because PCD is so stinking rare, it's treated like CF, because that's alldoctors know how to do.

The best way I know how to explain PCD is as follows. Basically, you have little finger-like entities all over your body called "cilia." These little fingers work to keep things flowing. Unfortunately, my cilia are dysfunctional, sluggish, and just don't work right (for whatever reason). As you can imagine, this is a problem.

Because these fingers in my lungs don't work, my lungs collect mucus. Lots and lots of mucus. Buckets worth, I'm sure (though I've never coughed up that much). And as this mucus collects, infections occur. And then my lungs get sick, get damaged, and I can't breathe. Throw a little asthma in there, and breathing becomes really fun. 

Treatment is, in a word, stupid. I'm grateful for the great doctors I have, and they take great care of me, but much just isn't know about how to treat this disease. It's so rare that research on it is difficult, and therefore, treatment is usually just a hit and miss sort of thing. Here's a taste of what I endure enjoy every day for my lungs:

First of allthere's this little toy. This bad boy is called a nebulizer. You might have seen one (or even used one) before, because they're often used in hospitals and emergency rooms to administer breathing treatments.

Basically, what happens is I put a little vial of liquid into the canister you see here, and the machine turns it into a vapor that I can inhale. I am able to get more medicine into my body this way, as opposed to using inhalers (though I do have a few of those).

Here, you can see boxes of two out of the three nebulizer medications that I take on a daily basis. In fact, I have to take all three medicines twice a day, minimum. Three to four times on a bad day. And let me tell you, that time adds up quick.On average, I spend an hour a day doing breathing treatments

The breathing treatments actually help a little, mostly because they're designed to aid my asthma (which people actually know how to treat). The medicines pictures here are combined into the nebulizer and really help my breathing for an hour or two after I take them.

The other medication I use is actually used for people with CF, but it seems to help my PCD, too. It thins out the mucus in my lungs, making it easier to cough up. However, that's the hard part: actually getting the mucus out of my lungs. It requires a little work, because it doesn't just magically appear, turning itself over to be disposed of (though that would be awfully nice!).

Instead, I get the pleasure of being beaten to a bloody pulp twice a day for twenty minutes (and more on a bad day). The instigator? This thing you see pictured to the left.

I like to call him Thor.

Affectionately so, of course.

Thor is a good friend of mine. He's been in my life for over 10 years, though he recently got an upgrade. Basically, what Thor does is he pumps air through the tubes you see in the picture into a vest (which is on top of the machine). The vest is strapped onto my body like a life-jacket. The air pumps in, it beats me senseless for twenty minutes, and I hope it helps.

My wife has all sorts of amusing descriptions for Thor. However, I think Thor probably deserves an entire post of his own, so I'll let him rest... for now.

This is a lot to digest, I know. Just stick with me a few more minutes.

To be frank, I hate Thing #3. It sucks. Or doesn't suck, I guess, because if it sucked, it would mean I could breathe...

Thing #3 wouldn't be such a problem if it could be aggressively treated. However, this is the Catch 22 of my marriage. When we were wed, we lost our health insurance. And ever since then, I haven't been able to get it because it's either too expensive or it won't cover my diseases.

Now trust me when I say I wouldn't trade my marriage for anything. However, not having healthinsurance is a pain in the rear. I can't see specialists, I can't afford treatments or certain diagnostic tools (such as CT scans), and therefore, Thing #3 only gets worse.

I know, I know. I need to get off my bum and get a job. That's what most people think when they hear about people without health insurance. That's the problem, though. My lungs are in such bad shape that I can't work full-time. I'm barely hanging in with my internship, and that's a job where I sit all day and only move when absolutely necessary. And even then, I hack my lungs up a few times a day.

There's really not much I can do about it right now, honestly. I'm currently applying for disability at the ripe old age of 21 (I was already denied once when I was 19) and praying for the best, but I know that the government isn't supposed to be my savior.

However, my mother-in-law, in her infinite wisdom, thought of something I should have come up with more than a few years ago. She has set up a health fund in my name.

Now let me say this, first and foremost. I am NOT a charity case. I hate the thought of ever being paraded around like someone who is helpless and can't forge their own way in life. However, I also know that there's pride in me about this that doesn't need to be there.  

That is why I'm telling you about this.

My mother-in-law has set up a Facebook page where she keeps everyone posted on how I'm doing and stuff going on with Thing #3, and I'd love it if you would check it out. Just search on Facebook for "Adrian Waller Health Fund." Or click here to request to be part of the group.

I'd love it if you'd join, just to keep updated on how I'm doing. And if you feel able to help financially, I wouldn't argue with you. We have a bank account setup called "Adrian Waller, Medical Expenses Fund," and I use the money to help pay for appointments with doctors and medicines (which add up a lot faster than you think). If you're interested in helping out, but have questions, you can send me an e-mail at (, and I'd be glad to answer any questions you have.

Basically, though, I'd just love it if you prayed for me. Life is hard. Very, very hard. It's hard not to be able to do things that normal people do. It's hard to not be able to walk without wheezing. It's frustrating to me that my condition keeps me from doing things I love: sports, singing, and sometimes even writing. But I know that God is taking care of me. He wouldn't have allowed me this far only to let me shrivel up and die. So I'll keep fighting, because I know I'm alive for a reason, even if living is hard most days.

Thanks SO much for caring enough to read. Please, please, please share this with your friends. It would mean the WORLD to me.


I'm Still Alive

I don't know what it is, but I love scrolling through Pinterest these days. Of course, as a guy, it's illegal for me to actually get an account, so I haven't gone that far... yet.

I'm in shock, people.

I disappeared off of the face of the blogging world for a week, without warning, and there was no missing person's report filed on me. Shame, shame, shame...

I could've been abducted by aliens.

Or kidnapped by Big Foot.

Or even worse...

But I wasn't!

No, in fact, my absence was a good thing. It means a number of things. And since it is officially October, and thus, the first time it has ever been PCD Awareness Month, I wanted to let you in on what's going on.

(Not sure what PCD is? Check out this post.)

Basically, I'm working on getting better. And because getting better takes time, I had to give up the time in the morning when I typically compose blog posts. It's for a greater cause, though.

Yeah, this is the part where you freak out a little
if you've never seen one of these.
Right now, as I type, I have a tube in my arm. I know, I know. A little freaky when you think about it. It's called a PICC line, and it basically serves as a semi-permanent IV, so that I don't have to get stuck with a needle 42 times in 14 days.

Through this tube, I'm given medicine three times a day. It's a pretty strong antibiotic, to fight off the infection that has built in my lungs, known as pseudomonas. Pseudo is pretty typical for PCD patients to get, but most people aren't susceptible to it, so you don't have to worry about getting sick from reading my blog or anything.

Unfortunately, the hospital in the city that I live in won't let me do the medicine myself. I've done it several times in the past, and it's really not a big deal. Unfortunately, that isn't the case this time. Instead, I get the pleasure of visiting the hospital three times a day: at 6 AM, 2 PM, and 10 PM.

Every day. No breaks. Not even for the weekends.

Basically, I end up spending about 3-4 hours a day in the hospital as a result. It leaves very little time for sleeping, let alone blogging.

So, in due time, I will be back in full blogging force. But next time I disappear, I'll be concerned if there's no concern about my absence. Just kidding!

Have a wonderful week. Make the best of it.



I'm sort of famous as of yesterday. Maybe I'll share why soon...

It's Friiiiiiiiiiiday!

I would sing that for you, but then I'd lose a lot of friends.

Friday means a lot to me:

First of all, it means a 3 hour day at my internship. And after getting used to 9 hour shifts, 3 hours feels like just enough time to get there, sit down, and leave.

Secondly, it means that the weekend is here and we get to see our families. Call me a homebody, but I love our fams.

But most importantly, it means I get to participate in... Five Minute Friday!

Here are the rules, via The Gypsy Mama, if you aren't familiar:

Rule I...Write for 5 minutes flat with no editing. None. Scary? Well... tough!

Rule II... Link back to The Gypsy Mama so others can participate!

Rule III... Leave some comment-love for the person who linked up before you on TGM's site!

Today's prompt...


Ready... Set... Write!

I wonder about a lot of things in this world.

Why, for instance, we park in driveways and drive in parkways.

I also wonder what it would be like to live on the moon. Would I finally not be the only person who isn't underweight? And would there be such a thing as obesity?  

Really, though, I wonder about one thing in particular: why God hasn't healed me from my sickness.

Now, I'm not talking about some sort of metaphorical, spiritual sickness here. I have that, too, to be sure. In all seriousness, though, I wonder why God hasn't healed me from my lung disease.

Does he not care? Does he not feel my pain? Does he not understand?

Or was Jesus an asthmatic? Maybe he had Kartagener's! Or maybe I'm just kooky for thinking such a thing.

Someone recently asked me a very odd question: "Why do you think God hasn't healed you?" I wanted to answer by saying that I'm not God and I in no way want to speak on his behalf - I'm not nearly that cool. Instead, though, I gave it a little thought and came up with this:

Sure, I wonder why God hasn't healed me. I wonder if he ever will. But frankly, he doesn't need to. I pray that he'll heal me so I can work for him better. But truly, my God is bigger than that. He can use me in spite of me. He is SO big that he can use me with diseased lungs. He doesn't need my lungs to be well for me to serve him. He's that big.

And in light of that, I don't wonder as much anymore. Instead, I'm left in awe of how wondrous He is.


What are some things that you wonder about? Do you find yourself pondering the same things on a daily basis? What sort of conclusions have you reached on those things? I'd love to hear from you about this (or anything else!). Just leave me a comment or send me an e-mail!


Introducing... R2-D2

This year, I've been in about five hail storms. Before this year? Zero. Ridiculous!

Sound the alarms, people. This post is going to call for a major Nerd Alert.

If the title didn't give that away, then I might've underestimated your nerd innocence.

You see, I want to introduce you to a friend today. I realize I've done this before, but I've made a new friend since then! Much cooler than the Google Next Button. Also much cooler than Thing #1, Thing #2, or Thing #3.

This friend actually does me some good. I like having him around, frankly. He even stays by my side at night!

My new best friend is none other than R2-D2.


And Finally... Thing #3

Picture this:
You wake up in the morning. You cough a few times, and a little phlegm comes up. You hardly notice and swallow it, willing yourself to find the energy to move out of bed. You crawl out, walk out of the bedroom, and quickly find something to drink - you know it'll be painful otherwise. 

Unfortunately, you don't reach the kitchen in time. The coughing begins again, only this time, you can't suppress it. It won't stop. And you're not even coughing anything up! Next thing you know, you're desperately swallowing air, trying to keep from throwing up the contents of your stomach. You fumble through the cabinets for a cup as you're still trying to control your body. You quickly run it under the sink - oops, the water was on warm (no time to worry about that now) - and take a swig of the lukewarm water.

Your chest depresses, your shoulders relax, and your breathing slows a little. You might still cough, but for whatever reason, it's controlled now. And now you're out of breath from walking to the kitchen.

You lean on the counter for support. You huff and you puff, but there's very little respite besides waiting and hoping your heart rate and breathing slows. A few minutes later, you've caught your breath enough to make some coffee. At least this part of the day isn't so bad...

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