Sunday, May 16, 2010

Making The Best of A Bad Situation


Hemoptysis ~ the coughing up of blood from the respiratory tract.

I saw it hundreds of times from my sister's bedside before I dashed away to get a Kleenex box while she cried from fear and from pain. I've heard of it thousands of times from CF friends, paramedics, doctors, and on televisions shows. It was a word. Until this weekend...

I felt just fine when it happened, but sometimes that can be deceiving. A lot of things could have caused this: allergies, exposure to second hand smoke for a few hours a month ago, stress, and just plain ol' cystic fibrosis. Any one of these can trigger issues, but add them together and......KABLAMO! I'll spare you the gory details because what you are imagining is probably just as bad as anything I could ever write on here. I will tell you it happened three times over the course of a day and was a pretty good indicator that something was wrong. You know what's funny about it? I wasn't scared. I was more upset over ruining a perfectly good pair of cheap jeans and having to put off taking the dogs for a much needed walk than I was over coughing up A LOT of blood. Things like that don't really scare me. I'm not trying to sound tough, but I guess I'm desensitized to all this garbage. I don't know if that's a good thing or a bad thing.

Getting sick is inevitable thing when you have this disease. It's how long one can make it between hospital stays that's the goal for most CFers. I figured I was due to go in for a "tune up" sometime soon, but I wish I could have had some warning. All of the other times I have ever gone into the hospital, they were predictable and I literally packed a bag before my wife and I headed to see the doctor...hoping for oral antibiotics, but preparing for a short stay in "The Joint." Not this time. I figured the doctor would have me pop some extra vitamin K and I would be on my way to a fun weekend that ended with the Cystic Fibrosis Great Strides Walk. No such luck, says the doctor. I was in for observation until further notice.

I missed everything this weekend. I cried a little bit. I swore and I snapped at people. I was so out of character because I just hated to see hear the sound of worried voices from my friends and family. I hated to leave them without answers because I truly didn't have any. I hated the way cystic fibrosis threw my whole life up in the air for no good reason other than because it could. Most of all, I hated the look on my wife's face. So brave, but so anxious as well. It's the same look I have right now. So I had my moment to be pissed. I had to allow myself that luxury. I'm human after all.

Once I got it out of my system, I was fine. I took advantage of the situation. I watched some Twins games (we don't have cable), caught up on some movies, wrote some stories, and just relaxed while the medicine did its job.

This bump in the road also gave me the gift of time. Time to send a "Moganko Message" to my little CF buddies out there who need to smile. I hope you'll take the time to watch this episode, share it with friends, share it on your blogs, and share it with your children. It's by far my favorite thing I've created with my little orange buddy. It shows that I'm NOT invincible. I DO go in the hospital just like they do and that I get through the tough things in life with three things: Love, humor, and honesty.

Cystic Fibrosis...I hate what you do, so I won't let you win. Even if you take me down piece by piece. Kiss my ass...I'm taking you down with me.

Thank you to my friends and family for the well wishes. I'm on the mend and I love you for the love you give me. Now feel free to laugh away at this video.




Peaceful and Positive Things,

Josh

23 comments:

  1. I LOVED IT!! Matthew watched it with me, and even he was laughing! -- When Moganko hit the door, I almost fell out of the chair laughing so hard! Definitely a great one :) Way to go Josh!

    Hope you're back to "normal" soon!

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  2. Josh, I wish I had known about you before I had my tranplant, and your blog, it would have been nice to read when i felt a little down in the dumps. Ever think about a Children's Book for CF.... You shoud consider this. If you haven't already!

    Alison

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  3. Awesome!!! Perfect for Moganko Mondays! Last day!! Get some rest!

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  4. Oy my gosh, Josh... get better! I love your video but don't know what happens behind the scences... and why you're in there. We'll be thinking of you here! Stay positive, try. Does this happen to most CFers? Something not to look forward to, I guess... Thanks for sharing!

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  5. keep up the fight! are you on a transplant list?

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  6. Josh - This is exactly why I write to you to tell you that you inspire me. You don't seem to allow yourself to become a victim. You don't give yourself enough credit for that. I have a close family member who suffers from another disease and they have surrendered to it and almost thrive on being a victim to it. I have a close friend who has everything one could dream for and still finds a million things to complain about. I hear Mom's during the morning school drop off complain about their schedules, their husbands, the school, the teachers, their cars, their jeans, and their homes. The world is full of victims. You have your right to be mad and sad about CF but I love that you still keep your spirit positive. That is really a gift, Josh. From far away and without actually knowing you, you inspire me, your mom inspires me, and your wife inspires me. CF is dumb...but maybe it has given you a gift of perspective that many of us may not ever have. Thanks for sharing your gift! Now get well and get home! :-)
    Marisa

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  7. Thanks everyone! :-) All of your comments mean the world to me!

    Jason - I am not on the transplant list. I hope that won't happen for a long time. If it does, I'll deal with it. Right now, I'm just on the mend and will be A-ok in no time, :-)

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  8. I really really enjoyed your blog entry and video! I'll be showing it to Kendall asap! Love your positive attitude :)

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  9. I was wondering about you, Captain Cool. We walked in DSM this weekend and I thought of you, Kat, Sarah and of course, Cman. I seriously cannot wait for the day that the big announcement comes...CURE FREAKIN'FOUND. I'm going to run through the streets screaming bloody murder. In the meantime, I'll have to reign it in and cheer for all that are still fighting. And I hope that you will take advantage of this "down time" (ha, as if!) to get your cape drycleaned. Superheros have to look good, you know!

    xo
    k.

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  10. Your positive attitude inspires me so much!! I'm glad you are out of the hospital and I loved the video..so cute! I know kids out there watching are helped a great deal by Moganko. He sure did brighten my morning!!

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  11. ps. you should totally write a kids book! Great Idea Alison!

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  12. Josh,
    I was sent your blog by another cf mom. I remember seeing you on the breath video. I have to say your personal video's are funny and great. I have 2 1/2 year old daughter with CF and she is doing well at this time. Praying that she won't have to be in the hospital. Glad I have your blog.

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  13. I hope u feel better soon and want to know if I can borrow the sentence..."Cystic Fibrosis...I hate what you do, so I won't let you win. Even if you take me down piece by piece. Kiss my ass...I'm taking you down with me.?...I love it and will credit u with it???

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  14. Jennifer - That's just fine. :-) I'd love if you gave me some credit and used the quote. That's cool to me!

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  15. Awesome Awesome Awesome!!!! Best videos ever! Great way to indeed make the best of a not so great situation. Keep on inspiring :)

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  16. I know exactly how you feel. I am at home recovering from my 21 hospital stay. I was taken in by an ambulance and when I arrived they discovered I had a collapsed airway. It was a lot of firsts for me, the first time to ride in an ambulance, first time to stay in the hospital longer than 14 days, first time to have a collapsed airway, first time to EVER rely on O2 and most of all first time to be really sick. I told my doctors I feel like up until that point I didn't truly even know what having CF felt like. I am at home now still on O2. I am slowly coming off of 2 liters. I have complete confidence I will bounce back...this time. The problem is I know there will be a next time. Maybe not this year, or next year, maybe not five years from now, but eventually a next time will arrive, and it could even be worse. So I know EXACTLY how you are feeling right now. All we can do is prepare ourselves like soldiers going into s battle, so the next time we will be that much stronger and that much wiser.

    Hope you get to feeling like Josh again soon. Nothing feels better than feeling like yourself again. =)

    Summer

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  17. Loved your video, we are friends of the jones, and have been watching all the clips you have sent. Get well soon, thank you so much for all your doing to be an inspiration,,, Michele

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  18. ERRRR, you get admitted and we head out...We should be out of here on the 20th. Loved the video, so did Skye. Youre the best!! Get better ASAP.
    CF IS DUMB.

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  19. Josh, I hope you're feeling better. Thank you for the very kind comments on my blog. You are such an inspiration.

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  20. Oh my gosh, I loved your movie!!! I am officially showing that to all my friends when they go in the hospital. I was in for three weeks, after seeing this I wish I had made better use of my time. I just got a small video camera, so it gives me good ideas for next time!

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