Tuesday, March 16, 2010

I'm NOT Always Positive

Joshland Note: I've been working on quite a few stories, but they aren't quite coming together how I'd like, which is why I haven't posted anything in a while. They will be posted when they are ready. I promise!

Early last week I read a few different blog posts about positivity and how it pertains to the CF Community. Each were well written and brought up fine points about the realities of life with cystic fibrosis. Please check out my friends Piper and Lauren's blogs about the subject.

Whether you want it or not, here is my thought process on the whole thing...

Since I was a very little kid, I've been an optimistic realist. I've looked for the good in everything, but prepared for the worst. I've tried not to push my ideals on other people - whether we are talking about religion, politics, or any other "taboo" topic. What happened this past week is a perfect example of how I attempt to live my life. One day at a time. Accepting the negative, but focusing on the positive. There are positives even in the worst of times. If you can't find them, then life will destroy your soul. Angie taught me that with the graceful way she lived her life.

You see, there are people dying every day from this cystic fibrosis. That's a fact. I've seen it first hand with my sister and several of my friends. I was in the room. I watched them die from the same thing that will eventually take my life (unless I get hit by a bus, in which case I hope I kick the bucket instantaneously because that would be a bitch to rehab from.) It's something I don't deny and I think about everyday when I wake up. I crawl out of my bed and walk into my living room where my wife is curled up on the couch with a cup o' joe watching This Old House on the television. There are also two little pooches who anxiously wag their tails in anticipation of attacking me with nuzzles and kisses. If I could put any moment on eternal repeat, that would be the one. Within this joyful moment there is sadness because I know someday I won't wake up again. But I press on...

To make matters worse, CF doesn't take a holiday. I was on vacation this past week down in Fort Myers, FL for Twins Spring Training. That meant minimal computer time, getting some sun-soaked vitamin D, going for long walks, and watching outdoor baseball with some great friends. Everything was on the up and up until three days into the trip when I started having a severe aching and nagging pain in my stomach. I've had it before. It was an intestinal blockage due to dehydration, mucus, change of diet and climate - any number of things. How can I explain this pain to those without cystic fibrosis? How's this (you may need a partner):

1. Take the handle of a screwdriver and push it into your stomach slowly until it starts to feel uncomfortable.

2. Push it in a little more and angle the screwdriver toward your sternum.

3. Stop pushing for 15 seconds.

4. Resume pushing, but push even harder than you were before. While continuing the screwdriver torture, take a spatula and push that as hard as you can into the lower part of your stomach in the opposite direction.

5. Hold your breath for 30 seconds at a time.

6. Rinse. Lather. Repeat ad nauseum.

WEEEEE!!! It's a pain party!

Long story short, I didn't enjoy the vacation as much as I wanted to. I missed our boating excursion because I didn't want to be away from the bathroom. For the rest of my vacation I was drinking medicine to help move things along, which gave me enough gas to fly back to Minnesota on my own power and kept me pretty docile the majority of the week. Neat huh?

Now....while I was frustrated A LOT of the time...I did have a lot of fun on my vacation:

- I walked almost 8 miles in gorgeous sun and a sky filled with vultures that could sense I was not well. Screw you, stupid buzzards!

- We played NERTZ with 7 people. I've never playfully called my friends and wife so many derogatory names in my entire life. Click on the link and play tonight if you can!!

- I watched Minnesota Twins baseball outdoors before the majority of other people got to this year. We looked pretty good. Perkins had a rough inning or two, but he'll snap out of it.

- During my "day in" I watched cable. (We don't have cable at home as a lifestyle choice, so it was fun for me. The things people will do for money or to get on TV astound me. I.E. "Silent Library" and "Pros vs Joes.")

- We ate seafood until we burst (or till my belly blocked up) at Red's Fresh Seafood House & Tavern. If you are ever in the Fort Myers/Cape Coral area, this is a must do! Everything we ate was awesome! Totally worth the pain. Yes, I got blocked up again, but I was on vacation dammit! I can do what I want to!! You aren't the boss of me, my wife is! :-)

- My wife loves me and helps me take care of myself. Not because she has to. Because she WANTS to. She helped me refocus my energy and gave me a new life to live for. I'm thankful she was on this trip and lucky that she chose to be my partner.

- Last, but certainly not least, I spent time with some great friends. They know why I had to do therapies, stayed home to rest, stopped to grab some meds from the pharmacy, and was a little distant this week. They'd ask me how I was feeling, but sometimes they didn't ask at all because my closest friends know if its something bad I will tell them. They didn't make it a big deal because I didn't make it a big deal. They were ALWAYS there if I needed them. No questions asked. Thanks guys. You filled my vacation with positive stuff and that was something I could focus my energy on. You're awesome.

You may assume I'm just a positive person because I'm a doing okay health-wise right now. I can't deny that, but I am pretty sure I would be the same way if I was really sick. I've always cracked jokes and been pretty up beat even when I've been down. It's my nature to be silly and self-deprecating with my humor. It's how I've survived CF. The bottom line is this: Life is short. Do your best with what you've got. Angie did. She cracked jokes on her worst days. I owe it to myself to do the same. Because we all have a disease. It's called aging. Eventually, it gets us all. Either we wait to die or can't wait to live. The choice is up to each of us.

Peaceful and Honest Things,



  1. I'm glad we could be a part of the week- it's great to have friends that are family and I think that's part of the deal of "not making it a big deal" and just being around. And I relate in only the smallest of ways because I wasn't completely myself this trip either and it's great to be around people who understand that's ok sometimes- whether it's cause we're not feeling the best or we're pregnant :)
    And, my highlights of the week are pretty similar to yours. Love you, Josh!

  2. You ARE positive, always, Josh. You inspire your own mother not to be a whiner!
    I love you, and I so love your wife, and especially, I love how the two of you live your life together.

    Positively. xoxox

  3. Josh! So constantly amazed by your outlook on this crazy disease called CF, as well as life. You always manage to bring a smile to my face....and tell me when I am being an idiot. I don't know many people like that, and I am glad to call you my friend. I would say sorry about the difficulty on the trip, but, I know you wouldn't accept my condolences. :) I love your last comment! So true, so true!


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