Wednesday, January 12, 2011

Getting Things Out Of My Chest

Things are progressing...cystic fibrosis is, after all, a "progressive genetic illness".

You'll read this as a negative, but I don't think of it that way. It sucks, that's for damn sure, but it's just another day in the the life of a person with a chronic illness. We make the adjustments when we need to and stay the course when we feel our best.


Give you an example, you say? Well, okie dokie:

I used to bounce back quickly when I got sick like a new pair of suspenders that a bully would stretch and snap on my back in kindergarten. Nowadays those old ratty suspenders have a lot of give in them. The reality of the situation is I've been constantly sick since I finished my 5K in September. That's when my body said:

"ENOUGH, scrawny man! Run a 5K despite my constant warnings, will you? Well @$#% you very little, sir. I was going to let this slide, but since you had to go and celebrate on your little blog with your stupid little video...well...you just sealed your doom. Not only am I going to destroy that twig of a bad leg, but I'm going to breakdown your immune system. You won't know what hit your stupid ass. Just wait. Juuuuuuuuuuuuust wait."

Joshland Note: I need to be clear and state that I did not get sick BECAUSE I ran a 5K. Being active in any way is something I'm very supportive of. But in hindsight, maybe I pushed it a little too hard and made things a little harder on my body than I should've. So I apologize to you, "Body". Maybe my pride and ego got in the way. I'm honest enough to admit that. If you decide to be active - and I'm talking to everyone who reads this, but especially my CF friends - make sure you talk with your doctor and understand that "slow and steady wins the race". I thought I was at a good pace, but I think I could've made it easier on myself and still achieved my goal. Work smarter not harder, boys and girls. Anyways, back to the story...

From that moment on, these past few months have been a whole new experience for me, suspenders be damned!

I've been sick before for long periods of time with a virus or infection that won't go away. However, in my lifetime with cystic fibrosis, I cannot recall a time when I was sick 3 three different viruses back to back to back. I'd work my ass off to get better, just on the cusp of 100%, only to fall victim to some other brand new virus that's impervious to the drugs I'm on and starts feasting on my already weakened body. I was mentally and physically drained. Pad on the month of December...particularly when Angie's anniversary was looming...and I was emotionally spent as well.

How did I get sick in the first place? It coulda been the ham-n-egger at the "Gas & Gulp" coughing on me, or maybe it was spending a short time on a large college campus with grungy, 3 day stank, snot on the sleeve college students everywhere I turned. Or maybe I was just walking along and this virus lofted into my mouth and nostrils. Whatever the case, it happens. I'm fine with it. The problem was that it kept happening. Fighting through one illness is hard enough, but when it keeps happening it destroys you. I lost energy. I lost weight. I lost everything I built up running that 5K.

The final straw came at my clinic visit last week...

In order to fully understand the rest of this post, we must go back even further in the Joshland Time Machine. Back to New Year's Eve...

I'd just gotten over being sick for the second time. I had the bad hacking cough. It was so bad that I slept in my living room recliner for 3 days so I could sit up straight and not keep my wife awake. Double doses of oral antibiotics streamed through my body and other regions...(ahem). It was neat, but I didn't need a repeat. (Hey I'm a poet! :-)

Just as I got better, my wife came home with a cold that had been going around her office. I put a self-imposed quarantine on any and all physical signs of affection. No kissing, and very minimal hugging or touching. I'm talking like an awkward "see-an-acquaintance-from-long-ago-that-totally-remembers-your-name-but-you-don't-remember-theirs-and- you-won't-until-20-minutes-later-on-your-way-home" hug. That was very hard to handle for me. I want to take care of my wife and hold her when she is sick. Lord knows she takes care of me constantly...sick or not. Plus, I'm a touchy-feely kinda guy. It had been nearly a week since I kissed my wife which was an eternity, but I couldn't risk getting sick.

Guess what? It didn't matter. I got sick anyways. Grrrrrrrrrr.

To make matters worse, this cold came on the night before my clinic appointment. Of all the times to get sick! I had felt phenomenal for the past week! I was able to sleep through the night and I could lay down without sounding like a a cat hacking up a hairball. Now it would all be wiped away. I went bed hoping it was just a bump in the road...

When I woke up early the next morning after a ruckus 4 hours of sleep I felt atrocious. My nose was stuffed up and my chest was rattling like a bingo ball cage, but I managed to muster the energy to get out of bed and start a therapy. It was ugly. During the entire hour I was hooked up I never stopped coughing up that putrid mucus. By the end I felt little relief despite all the work I did. The hands of the clock were inching closer to clinic departure time and my stress level began inching up as well. Was I going to get admitted? Were my PFT's going to be really bad? It was enough of a distraction to cause the following events:
  • I spilled a 20 oz bottle of orange pop all over our hardwood floor. The dogs were pleased. I was not.
  • I almost zipped my chin up in my coat. Do you know how hard that is to do? I've heard of the "assisted accidental zip up", but to do it to yourself is just ridiculous.
  • I was half way to clinic when I realized I forgot my wallet. D'oh!
  • I when got home to grab my wallet I decided to let my dogs out one more time just in case they'd be alone for a long time because I got admitted. Even though I watched them both come in the house, my frazzled brain still made me backtrack around the block and go back inside the house to make sure they were okay and not outside in sub zero temperatures. Call me a overzealous doggy owner.
By the time I picked up Carly from her work we only had 15 minutes to get to the clinic that was 25 minutes away. She dropped me off at the entrance and I hobbled toward the front desk. Amazingly, I was right on time! It didn't matter though because there was a scheduling snafu that said I wasn't supposed to be seen until the next morning. How it happened I don't know, but I'd be damned if I was going home. I couldn't handle waiting another day to find out what was going on. My doctor completely understood and stayed late just to see me, but I had to head over the the PFT lab before we could start the appointment.

I didn't say a word once we got there. I just took my vitals and my weight, then sat down and stared directly at the bastard PFT computer.

First try: Lowest FEV1/FVC ever.

Second try: Up a measly percentage point on both, but still ugly.

Third try: Blew so hard I almost passed out. Still really bad numbers.

I started to sob. Head in my hands, face covered in sweat and tears. All I kept thinking was "If only my clinic appointment had been 4 days earlier! Damn! I've been working so hard the past few months. How was I the same person that ran a 5K in September? How did this happen?"

Well...I tell how this happened:

This happened because this is life with cystic fibrosis. It's the unpredictability that we live with every day. You're feeling like a million bucks one minute, then in physical shambles the next. It's a reality that I've seen first hand my whole life and now, in my thirties (man, how lucky was I to have over two decades worth of semi-healthy lungs), I'm starting to live this part of the disease. I can't describe to you how truly frustrating and emotional that PFT test was.

After I composed myself, Carly and I headed into the doctor's office to discuss our plan of action. I had a bag packed and was ready to go into the hospital if I had to...that is to say, if my doctor thought it was the best option. She didn't though. She knew I was in the right frame of mind to fight off this infection. She also saw in my test results that the antibiotics I had been on for the past month were doing their job, but I just had a horrible rash of bad luck with all of these colds. So she gave me a week. One week to show marked improvement or I was headed to the hospital. This seemed reasonable, so I set my sights on working hard to show this virus who was boss.

For one week straight I did 4 treatments a day an hour per treatment. I spent so much damn time in that machine, I think I may have bruised a rib. I continued my oral antibiotics and stayed close to the restroom. I rested when I could, I even took impromptu naps which happened more because I was sick and exhausted than it did because I thought they might help me feel better. I never stopped eating even if I wasn't hungry. It was ridiculous. My life was all consumed with my health...something that I fear dealing with in my future. My life does not revolve around CF and neither does my blog, but unfortunately it has been the focus for the last few months. I was ready for things to get back to normal.

A week later I'm sitting in the same PFT lab staring down that bastard machine again.

Try one: up 5%

Try two: up 10%

Try three: up 12%

12% increase in a week! I wasn't back to my main level, but I think 12% is a marked improvement. My doc agreed. She asked me how I did it and when I told her what I did she was amazed. She's seen it happen before, but it has never ceased to amaze her. We are a stubborn and feisty group and it does us well. Now, my support system looks toward the future, continued improvements, decisions, big and small. It all comes with the territory.

Lung-wise, I'm not where I want to be yet. There are far too many moments when I'm breathing rapidly when I'm just sitting on the couch. Moments when I have a coughing attack while I'm going 70 mph on the highway. Moments when, out of nowhere, I can't catch my breath. That last one happened recently when we were out with some very close friends. I felt better having that coughing attack in front of people who understood it, but it was still frustrating. I was just sitting there doing nothing and I started hacking away. That doesn't happen when I'm in peak condition. It just shows me that I've got a ways to go, but I know if I keep working hard I'll get back to my baseline numbers and maybe even better than that. Who knows?

Why did I write this post? I dunno. Something struck me the past few days and I felt the need to share this story. Not because I want you to feel bad for me for how sick I've been. Not because I improved my PFTs. I shared it because I think my friends and family need to read this and know what I'm going through. That's been the best part of having this blog.

I'm here to tell you that cystic fibrosis is a "generally" a manageable disease. If you get on the right meds, are diligent about your treatments, and are in tune with the physical manifestations of your body (i.e. when you might be getting sick, what kind of infection this might be, if it's just a "call the doctor" feeling or a "make an appointment/book a room at the hospital because things are off kilter" feeling), then you can handle this disease for the most part. That being said, this is a progressive disease that is different for every person who lives with it. In my case, things change and I adapt with them. My health has been a volatile and fickle thing lately, but I refuse to give up and let it take me down. There will be times when CF will kick my ass, but I guarantee it won't be because I quit doing my stuff. It will be because life with CF is full of constant challenges, obstacles, and adaptation. There is no other way to say it.

To my CF friends: CF isn't easy for anyone. Attitude is everything. While I don't think that super positivity is going to fix things, also I don't think that a "%@$# the world and %@$# CF" attitude is any good either. There has to be a balance. There has to be some optimism combined with realism. Just work hard and do your best. Sometimes you'll get your ass kicked, sometimes you'll kick some CF ass and punch it right in the face. Some of the most inspiring people I know with CF are the ones who can be realistic and optimistic regardless of where they are in their CF journey.

Thanks for reading my rant. That felt good to get off my chest...or out of my lungs, as it were. I'm feeling better every day and thanks to my huge support system I see nothing but good stuff in the future.

Peaceful, Honest, Frustrating, and Healing Things,

Josh

18 comments:

  1. sending healing hugs and happy thoughts!

    you kick butt no matter what your PTFs are!

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  2. I love that you wrote this post. I know we talked about how difficult this past few weeks has been for you, but I know how helpful it often is to get it out in writing. Whether your sharing something tremendously optomistic, or sharing challenging and difficult times...I always appreciate your blog, because you are real! Lots of love...

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  3. So proud of you Josh. Seeing Spencer go through dedicating his whole day upon his CF and feeling better..... it is not easy to dedicate that day, a week, a month to focusing on your health just to get those numbers up and to get back to feeling better. I think it's amazing how far you've come within that week :) It proves to show if you stick your mind to it, it's possible. Granted it's not easy, but it's do-able. You give us inspiration, whether you mean to or not - and I am thinking about you every single day.
    Get to feeling better and keep doing your thing :)
    Lots of Love
    -Nikki

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  4. Josh, for one, what a great post. Two, I love your honesty and hard work. I'm so proud of your hard work and your improvement on your PFT's. I hope you continue to get better my friend. We've all been there sobbing, angry, and frustrated with our PFT's and well, CF. Thanks for sharing!

    Jess :)

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  5. I really appreciate you being honest with all of us, Josh. Thank you so much for sharing.

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  6. That's the part I REALLY hate about CF ... the part that you can't really control some of it. The part where you feel like you do everything possible, and it still gets you.. or in my case, my child.

    The psychologist at our clinic described it like this: It's constantly snowing, and you shovel the driveway to clear a path. But, sometimes it snows really hard, and it doesn't let up, so you shovel the driveway some more. It doesn't mean you just stop, it's just harder to get a clear driveway.

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  7. Your honesty is so amazing and appreciated. I love that you are willing to "bare all" knowing that someone will be helped. You are awesome.

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  8. Such a great blog! I'm a fellow CFer, almost 29yrs old..it's so helpful to read and know that I'm not alone in battling this disease. It definitely helps my motivation in fighting the infections when I read about others like you who was able to increase your PFTs by 12% after a week if hard intense treatments! Thank you so much for sharing!!

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  9. Awesome post. Thanks for sharing your story. I am still learning the ropes every day of this disease... pushing harder to made my 2 year old stronger through all the ups and downs of Cf. Thanks for being some inspiration...<3

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  10. I love you, Josh, and your beautiful wife, Carly.
    Mom
    xoxox

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  11. you sound like an above average human to me Joshi!
    and I have to admit I don't like the FUCF/FTW attitude either

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  12. Keep it up Josh! Keep up the fight to stay happy and healthy! I have wrote this before, but you are an inspiration! We are always thinking good positive thoughts for you!

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  13. Love this post, Josh. And so very proud of you. Big hugs from your southern neighbor :)

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  14. Great job on getting those numbers up. Hope you can push through this drought and on to bigger and better things. I'll be thinking of you and I'm in your corner cheering you on!

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  15. Josh, thanks for sharing your heart and soul in this blog. As someone who loves you dearly, it was hard to read--and important to know. Great work this past week. You inspire me so much. Sending love, prayers and positive energy to you and Carly. You're the best! Uncle Brian

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  16. You have an award on my blog, my friend! I hope things start looking up for you.

    http://overanxioushorseowner.blogspot.com/2011/01/update-and-award.html

    ReplyDelete

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