Friday, March 30, 2012

Mckenna Sitting

Rapid Fire Questions

What are the goals of an online community?

To show that there are others out there who are walking in your shoes. It's also good to seek the opinions of those who have "been there" to see how it lines up with the opinion of someone who has not (ie medical professional)

What purpose does it serve for you personally?

I love meeting and talking to mommas in the CF community and places like Facebook and are great places to do that. I'm convinced that a successful CF life starts with the parents, so I try to get to them as soon as I can.

What are your greatest strengths?

I believe that God gave me the ability to step back and look at the ways that I contribute to outcomes that I may not like so much. Personal responsibility, in my opinion, is one of the greatest assets to a successful (CF) life. I would also say that my ability to stay calm would be a strength. I don't overreact. I don't waste energy on emotion, I put it towards action.

What are the resources you rely on the most?

I rely solely on the Lord my God for my strength, peace and attitude. Without Him, I would completely fail at this life.

How does your health and CF affect you economically?

Being hospitalized as much as I have has certainly limited my job pool. I've chosen to put my health above all else, while others may choose to put their career above their health. There are also the extra costs associated with meds and hospital stays that others may not have to endure.

And how does it affect other relationships in your life if at all?

I'm sure that other in my life worry about me slightly more than they worry about others, but if anything, having this disease has strengthened my relationships. It's taught me to value what's truly lasting and important. It's also shaped me into the man that my wife fell in love with.

If any of you ever have a question out there, any question, send it my way!!!

Thursday, March 29, 2012

Thankful Thursday: Quality Time & Green Grass

**Workout challenge - Do 30 minutes of your most enjoyable active activity today. That could be walking, running, skipping, jumping, lifting, etc. Enjoy!!

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for quality time. Last night after Mckenna went to bed, Ronnie and I sat up and had coffee and baked together. It was such a great way to spend a few hours together. I love my hubby and I love reconnecting!

I'm thankful for a growing baby. I looked at Mckenna this morning and was shocked by how big she looked. Crazy!! It goes so fast and I'm so thankful she's so healthy and happy. I think it's very possible she's going to be ornery, but I'll take happy and healthy AND ornery any day!

I'm thankful for a hard working husband. Ronnie works every day to be healthy. I'm so thankful he works so hard to take care of himself. I don't think I'd be able to do 3-4 treatments a day and workout day in and day out, but I'm appreciative that he does that for us :)

Ronnie's List:

I'm so thankful that Grandma and Uncle Grant were able to spend some "quality" time together this past weekend. I only qualify quality because Mckenna screamed her head off almost the entire time that we were away, but, it was still time spent together :) Of course they were also able to enjoy her when we were around and she was much more of the sweet little angel that we have come to know.

I'm thankful for green grass. I grew up with typical Arizona landscape which included a lot of rock and no grass. Until moving into our home, I had never taken care of a yard, much less a grass filled yard. It's taken me two years to get it down, but I finally managed to keep our grass lush and green through the winter. Now that summer is approaching, I hope my research pays off during the warmer months.

I’m thankful for birthdays and anniversaries. My step-dad Mark celebrated his 62nd birthday yesterday while my brother-in-law and his wife celebrated their 2nd wedding anniversary. They all play a very important and special role in my life and I was so happy for each of them to reach their particular milestones. Here's to 63 and 3!!

So, what are you thankful for today?

Wednesday, March 28, 2012

The PFT Game

Lauren over at I Have CF...So What?! posted a great blog today about PFTs - what they are and how she did. We often hear that we can't recover lung function once it's gone. Oh yeah? Don't tell that to Lauren.

Here's an excerpt from her blog and I would highly encourage you to head on over there to read the rest...

It's been a while since my last blog, mostly due to the fact that I saved all of my homework over spring break for AFTER spring break, leaving me a nice week of relaxation, followed by a week of hectic homework and studying. Now that I have some free time I can finally write my blog about how incredible my PFT's were 2 weeks ago. 
First of all I'm gonna take a second to explain exactly what PFTs are because lots of my friends and family are familiar with them, but I've never really explained them in depth. The machine (which is now portable and is just hooked up to a laptop), involves a tube, a mouthpiece, and a device to measure the volume inhaled and exhaled in the lungs. I am given a pair of nose-clips to ensure I don't breathe out of my nose at all. Usually the PFT tech will ask me if I prefer being coached to which I always reply YES. For some reason, I like to have a cheerleader when doing my test. The testing starts with "easy breathing" for which little blips show up on the computer screen. I am then enthusiastically told to take a "BIG BREATH IN" and quickly blow as forcefully and quickly as I can. And then the PFT tech usually says something like "push push push push all the way out come onnnn, litttle mooooore" until I'm red in the face and I watch a little dial on the screen go all the way around like a speedometer. I then take a minute to catch my breath for another round. During the next round, the computer measures how I'm doing in comparison to the last one, so a little ticker will increase up to 100 and then turn green, meaning I beat my last result. This is very exciting to see and makes doing PFTs feel like a game, as I get more and more pleased with my results.

Click here to read what exactly PFTs measure and how Lauren "blew the box off" of her latest test!

Great job cyster!!!

Tuesday, March 27, 2012

3 Major Needs in the CF Community

**Workout challenge - 30 minute walk

I was asked this question the other day and I thought it would be appropriate to share my answer over here as well...

What are 3 major needs as a whole you see within the CF community?

Exposure to the good stories. We're constantly assaulted by so many stories about death, sadness, transplants at an early age, etc that I think it's time someone focuses on only exposing the positive things that those is our community are doing every day. 

To me, there's a big difference between being "real" and being "realistic". Yes, everything that happens in someone else's life in the community is in fact real, but is it realistic for you? Well that depends on the person. A lot of stories we here about others make it seem as if they had no control and CF was going to do whatever it wanted. Again, may have been the case for them, but I assure you that has never been the case for me and many, many others in this community. Many of us have more control over this thing than even we give ourselves credit for. Each and everyone of us can make the choice to make daily decisions to put ourselves in the best position to succeed. Generally, those of us who do well with that strategy have MANY more good days than bad. We're athletes, doctors, lawyers, stay-at-home moms, dads, husbands, college students and teachers.

There are PLENTY of good things out there in this community that never get talked about - I'm doing my best to change that. 

Insurance. Insurance or matters of insurance continue to be a big need in any medical community that needs it. Some of the issues are because of the system, some are because of a lack of education and some are simply others putting their own agenda ahead of the need for insurance.

I'll be the first to say that I've been blessed to have great insurance my entire life. But, it must also be pointed out that my mom didn't run out and get the job that she enjoyed the most when I was diagnosed with CF, she ran out and got the job with the best insurance. Is it "fair" that she would have to place insurance needs before career goals? No, but that's the way it was, so she played the hand she was dealt.

Before Mandi and I got married, she applied to every job under the sun that had good insurance. Sure, there were plenty of jobs she would have rather done, but those jobs wouldn't have come with the benefits that we needed. 

This CF life is all about choices. Unfortunately, there are times when what we want to do for ourselves, isn't what's best for what we need to do for our families.

Parenting skills. It saddens me to see some of the decisions that these parents make with their children. Successful parenting often results in a successful CF life, but unfortunately, the inverse of that is also true. Now, there are certainly exceptions to that rule, but as I said above, it's all about being in the best position to succeed. Sadly, I've seen plenty of parents in this community hold their children back way more than CF ever would.

We're often a direct reflection of our parents. The way they walk, the way they talk, the way they act, and yes, even the way they think. If you as a parent are embarrassed of this disease and think it should be a secret only for a select few, than most likely your child will see it as a scarlet letter as well. Can you imagine that? Walking around with this big secret as a kid that isn't going away anytime soon. That would be terrible. Yet, I still see it happening to this day. 

Parents yell at their children for not doing treatments as they sit on the couch drinking a beer. They tell their kids to stop complain, yet piss and moan about their day at work. Be what you want to see. Model the good behavior that you hope to get from your kids. Think health and taking care of yourself is important for your kids? Then make sure that's it's just as important for you as well!! Want your kid to embrace this disease and do what they have to do to succeed? Then smile everyday and make it clear to them that you'll be there every step of the way, and make any sacrifice that you need to in order for them to kick some CF booty!

It must be noted that having good parenting skills is not exclusive to the CF community, however, the stakes may be a little bit higher.

So what do you think? Agree or disagree? What would you add to the list?

Monday, March 26, 2012

Separation Anxiety At Its (Not So) Finest

Two of our dear friends go married on Saturday (Congrats Bryan and Shay). We decided to leave Mckenna at home and Grandma (Ronnie's mom) was nice enough to drive up from Tucson to babysit for the day, spend the night, and then head back down to Tucson Sunday. Ronnie's brother, Grant, also came along, in case reinforcements were needed...and boy were reinforcements needed!

I was a bridesmaid, so I took off for the wedding venue to get ready with all the girls around 9AM. Ronnie spent the morning with Mckenna and then headed out for the wedding around 3:30PM. When Ronnie left...the wheels totally came off the wagon. Mckenna began to cry. They said she pretty much just cried and looked around for us...ALL DAY LONG. She stopped crying to drink minimal amounts of milk, take two 30-minute naps, and for a few minutes at a time when they could distract her just enough. But as soon as she'd look at them, and realize it wasn't one of us, she'd lose it again. Finally around bedtime, after crying through her bath (she never cried during bath time...bath time is her favorite) we told Grandma (after receiving a text saying she won't stop crying) to just give her as much of the bottle as she'll take, swaddle her, lay her down, turn off the monitor and watch TV. Luckily she was looking forward to bedtime just as much as Grandma and Grant were. As soon as she was swaddled she relaxed, and she went down no problem.

Poor Grandma and Grant. A crying baby, let alone a crying baby for HOURS ON END, can really start to wear on you. Apparently someone (cough cough Mckenna) needs a little dose of reality and we need to get out of the house more. I now just can't decided who our next victim will be that we'll leave her with. Ah..what to do? What to do?