Wednesday, June 23, 2010

The Honest Truth

Joshland Note: When I created this post I was only going to write about my final thoughts regarding my recent health issues, but then I thought it might be an interesting experience for my readers if I narrated it as well. I AM STILL VERY POSITIVE! THAT WILL NEVER GO AWAY! BUT...there are times in life when I need to be a little frustrated. Even though I got my IV PICC line pulled today (YAHOO!), it doesn't change one thing about how I feel or one damn word of this post! Push play on the the video and read along with me if you'd like. THIS IS NOT A VIDEO FOR LITTLE ONES TO WATCH...PARENTAL DISCRETION IS ADVISED:

I've been on antibiotics of all shapes and sizes for my entire life and I have to say this: The last month and a half has been the hardest antibiotic stint I've ever been through. I'm physically, mentally, and emotionally drained. Scrapes, bruises, coughing, and bleeding have been far too common place, particularly these last three weeks. It hurts to move, it aches to sit, and my stomach reached it's antibiotic tolerance level weeks ago. Mal-absorption, missing intestines, and highly concentrated drugs DO NOT play well together. I'm just broken. Sitting up in bed night after night thinking about how much my health has changed in such a short amount of time is baffling. New and unwanted experiences are happening more often than I'd like and while I'm taking it all in stride, I'm not going to lie: I hate it.

I'm not saying that my health is heading downhill at a break neck pace, I'm just saying I'm not the young man that I used to be. I find myself caught in memories of a decade ago when three therapies a day was overkill and the only time I'd EVER wear a mask on a plane was if it was Halloween.

I've been crying...a lot. For myself, for Angie - man, I have no idea how she did it for all those years, and for all the CFers - especially the little kids - who only know this as their DAILY ROUTINE. I'm hurting in places you aren't even supposed to hurt and I've only been on IVs for 3 weeks, so I can't even imagine how they must feel every single day. Suffering is NOT and SHOULD NOT BE a part of anyone's life. Peaceful things to Conner, Skye, and all my other kindred spirits. If I could take it all away, I would .

I'm at my wits end and I'm trying really hard to be brave. For my family, my friends, for Angie, ...and for me. I don't want to be sick anymore. I dislike it with every fiber of my being. The good news is that the bleeding has healed, my fevers are gone, and my body will bounce back. I hope that the extra time I've spent "drugged up" will benefit me and make things better for a long time to come. And yet...I wonder...

But then I think about all the amazing things happening in the CF Community. CFers I know are getting their new lungs after months and months of disappointments and people are happy, healthy, and living their lives in spite of CF. It's the reality of the CF world and it's amazing and frightening all at the same time.

There...I've had my moment to be upset. Sometimes I need to vent my emotions, otherwise I'll explode. I think negativity in small doses is healthy. Whether you are "healthy CFer" but hit a big bump in the road and are frightened, or you are "in-patient" more than you are "out-patient" and are overwhelmed with your life...It's okay to feel that way. Your feelings are YOUR feelings. Never let anyone tell you it's wrong to feel the way you feel. When you're ready to move on, it's important for you to look at the positives in your life, otherwise this disease WILL consume you. We all have our own journey through life. This one is mine and I'm glad this particular part will be over very soon.

Now it's time to make the transition from black and white into color. Time to enjoy the summer, to be outside, to exercise, and to get back into the positive swing of things. Thanks for listening and letting me be honest.

Peaceful Things,



  1. Yesterday we cried a little together... This beautiful post made me cry a little more. I am so GLAD that we get to cry together sometimes. I am even more glad that we get to laugh even more often. I am so glad you have come into my life :-) You are AMAZING!

  2. I am crying with you Josh. Stay strong! I talk about you daily, you have been a HUGE help in my life in such a short time. I am SO glad to have met you, sincerely.
    I will be keeping you in my thoughts even more Mr. Joshland! You rock, keep rocking, and maybe even rock a little harder!!
    Thank you for mentioning Skye as well! I'm sure if she could understand she would LOVE that!

    Peaceful thoughts, like you always tell me :)

  3. Hang in there Josh... I have no idea what you are going through. But I do know... you are an amazing person and I am so honored to know you! Crying is good sometimes...But keep smiling too! :) Just hang in there!

  4. Ok, first of all I just cried. A lot. Thank you for this. Also, you say parental advisory, but I am showing my son. He is 9 and he needs to know there are others going through what is his "normal" but not "normal" for anyone else he knows. And that part you said about sharing your emotions etc, that is perfect, he needs to hear it, and he will listen to you, another CFer over his dear old mom :) THANK YOU!

  5. Dear Josh,
    Your honesty is very powerful in it's simplicity. I now feel that I know you at a new, deeper level. Cystic Fibrosis totally sucks. You didn't do anything to deserve it, yet you must live with it's effects. Your video shows that even a person with an EXTREMELY good attitude is still a human being with limits to their patience. Your being candid, helps the understanding of thousands of other CF sufferers, to know that it is OK to get pissed at this disease.
    Good Luck and keep up the good work.
    Uncle Bruce

  6. I love you, my sweet son. Always.


  7. *Wipes tears* Very touching post Josh...We are honored that you let us listen and are all in this together. We are here for you always! Peaceful things to you too my friend.

    Cyster Jess :)

  8. I found you today by way of Unknown Cystic. This was powerful and honest. Thanks for making yourself vulnerable, fibro!


  9. Hey Josh,
    You almost made me cry-almost-but I have a heart of stone so I didn't. Anyways, thank you for being so open and honest, I know it wasn't easy. But, this post somewhat helped me. A lot of times you read blogs that are all "flowery" and everything is always good-which is great, but it is not showing the whole picture of an illness. Right now I am on a learning curve with my transplant, and I am trying to always be positive, but some days are just really hard. Your post just made me feel like it is okay to have "moments" and other people do.
    All I can say is keep being brave, you have touched so many lives and have made great strides for CF.
    I hope better days are in you (near) future.

  10. I've been thinking about this post and I can't believe I didn't comment yet. We love you and for every day of outrageously upbeat attitude, you can have a day or so of the opposite. You earned it, kid. I know its easier said than done, but try to keep CF in your lungs and out of your head. We get so trained as we get "older" with CF, thinking "this is it! my whole life is downhill! this is the beginning of THE END," when really its just one crappy day, week, month- and it will get better. You will get better. With love, Cystic Gal

  11. Thanks for posting this. Everything you said was just perfect.

  12. Josh,

    As always you move me.

    You make me laugh, think and well up understanding (as best I can as a mom) the rigorous journey you are on.

    You keep writing...I'll keep reading.


  13. Thank you for sharing your life, the good and the bad.
    My 3 yr old grandson was diagnosed with this disease, that comes straight from satan himself, when he was 2 weeks old.
    I so appreciate every CFer/CFer family member who is willing to be straight up honest. It teaches me more and more about this horrific disease.
    Fighting for a cure and praying for you and all CFers.
    Betty Ann from NJ

  14. Josh, I have been behind in my e-mail, and thus your posts. Again, I have been touched by your honesty and strength. I really had no idea how difficult this month has been for you. I am sorry I have been so out of it. Sending love, prayers and positive energy your way right now.
    Love always,
    Uncle Brian


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