Monday, March 29, 2010

Ah...To Fundraise....

Joshland Note: It's that time of year again...time for a big fund-raising push for cystic fibrosis non-profits (or "insert charity name here") asking you to donate your time and or money to assist a noble cause. I find it very difficult to fundraise without sounding like I feel sorry for myself or for anyone else. I'm an "optimistic realist." I refuse to say "Oh poor me, give me money because my life sucks." You know what? That's a bunch of B.S. and I'll have none of it. I wouldn't be who I am without every moment of my life...good and bad. So I decided a while ago that my "job" would be to show you a few reasons why people with CF are amazing and why you should donate some - be it a dollar or a million - of your hard earned money to myself and my friends so that we can live longer and happier lives:

It constantly blows my mind how many different genetic mutations there are that cause the physical differences we have in the CF community. The highs and lows of this disease are thrust to the forefront every single day of our lives. Some CFers have the ability to run marathons, drive race cars, compete in bodybuilding contests or cage fighting, sing soulful songs, and destroy the opposition in Ironman triathlons. They are a great example of what it means to thrive against adversity. I love reading these stories and meeting these people that give cystic fibrosis a big punch in the face! It pumps me up!!

But what about my kindred spirits who are fighting in the hospital or waiting on the transplant list? They are just as remarkable! You see them with IV lines sticking out from their bodies. Some are patiently waiting for various organs to come. They have oxygen tubes and dialysis machines attached to them as a "long term temporary" solution until that telephone rings. Their bodies betray them. Do they get sad? Sometimes...and RIGHTLY SO! Do they feel sorry for themselves? HELL NO!!! They don't because they have the hope and the forward thinking that motivates them to show the world that obstacles can be overcome! While they wait to start the next chapter in their lives, these CFers write blogs, organize fundraisers, and sometimes sacrifice themselves to shield others against the sorrows of life. My sister Angela, even in her last few months, comforted the sick children who were in the hospital while she was and supported parents who were struggling to find answers. Families who were at the beginning of a life filled with all sorts of ailments: heart defects, cystic fibrosis, muscular dystrophy, or just facing a routine tonsillectomy. Her love knew no bounds and I'm convinced that's one of the reasons she was here on earth. To show the world that greatness can be achieved by simple gestures of compassion.

But the "average" CFer - what the hell does that mean anyways? - lives their life like the "Average Joe" or "Plain Jane." They have jobs to go to, bills to pay, chores to do, exercise to trudge through (and some times bitch about), doctors to see, and hospitalizations to deal with. They ask the questions and make the choices that anyone else does, but there's always the "extras" attached to them. Things like: Can I work AND stay healthy? Should I or will I believe in the power of love and have faith that another person will choose to walk through my journey with me? Should I have children, adopt children,or just get a pet? Or should I choose to concentrate on strengthening the bonds with family and friends I already cherish? These day to day choices don't always make a huge splash in the real world, but there are enough of us around to make sure that the world will never dry from our constant cannonballs into the pool of life.


Whether we feel like a million bucks or are battling for breath, we are a wonderful community that deserves to live. If you are interested helping us fight CF, go to the CF-related links section on the top of my blog. They'll have plenty of opportunities for you to give. I wouldn't have them on my page if I didn't believe in their message. Here are a few in particular that have big events coming up:

I've already written about Cystic Life. Check that out here:

Cystic Life Blog Post

The Breathe 4 Tomorrow Foundation - An designated 501(c)(3) non profit organization founded by Sarah Morris that provides assistance to CF families nationwide who are dealing with the financial struggles - paying bills, repairing vehicles, medication purchases - that can overwhelm those who are already fighting the monster that is cystic fibrosis.

The Rock CF Foundation - An designated 501(c)(3) non profit organization promoting cystic fibrosis across the world via music and positivity. Check out my bud, Rock CF Founder Emily Schaller, here for more info:

The Blooming Rose Foundation - Another designated 501(c)(3) non profit organzation that provides assistance to new diagnosed families and veteran CFers. You can contact the founder of the BRF, Kat East (CF Momma extraordinaire), via their website.

The Cystic Fibrosis Foundation - The CFF is a designated 501(c)(3) non profit organization that funds research toward finding a cure for CF. CFF's annual Great Strides CF Walk is happening across the country over the course of the next few months. Go to the link below to find a walk in your area that you can participate in or donate to. If you know the name of a walker you can find their team by typing in their name on the Great Strides search engine.

Each of these non-profits are worthy of your hard earned money. They all provide valuable support and services to different areas of the CF Community and I appreciate them all. Contact me if you have any questions about them.

Here's an excerpt from my Great Strides letter last year that goes for the other non-profits as well. I mean EVERY DAMN WORD OF IT:

"I understand that times are tough right now. I will not feel bad if you are not able to give. Your time, love, and friendship are far more valuable to me than money. This is not about me anyways. It is about the kids I see at clinic appointments and the parents I talk to who are struggling to understand why their babies have to live with this disease. I want to raise money so that these little ones won't hurt like I do everyday and Angela did for 16 years. They deserve to live without the mental and physical trials that come with Cystic Fibrosis. I watched it consume Angela. She was a tough and brave soul who never gave up. I raise awareness for her and I am trying to make her proud."

To all the CFers and families of CFers that read this:

I love you all and you have my undying respect. Keep living the dream.

Peaceful, Cure-finding, and Quality of Life Things,


Wednesday, March 24, 2010

5 Minute Summary

I'm still working on my new stories. My goal is to have one up next week. While you are waiting, I have a quick thing to post...

"It's hard for me to listen to others when all I can hear is the sound of my own voice. I have to remember that the moment I think I know everything is the moment I don't know anything at all. Often patience, silence, and a reasonable amount of humility have brought me more understanding than I could have ever imagined. Part of why I am this way is because I have cystic fibrosis. It's made me a better man."

I wrote this in five minutes and it's probably one of my favorite things I've ever written. A short, sweet, and to the point combination of some of my favorite quotations. These are the principle ways I learn about life. I just wanted to share them with you.

Listen to each other, learn from one another, be respectful.

Peaceful Things,


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,


What'd You Think?

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Peaceful Things ~ Josh
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