Friday, March 8, 2013
Thursday, March 7, 2013
I'm thankful for a disciplined and hardworking hubby. Ronnie's PFTs took a bit of a dip since getting out of the hole. He was feeling not great after getting out - between a cold that wouldn't quit and a stomach bug. But he is now on fire and going to have his PFTs back up at his next appointment. I know my hubby and his ability to kick booty, so I know they'll be as high as they were..or at least close ;-)I'm thankful for friends. Mckenna and I have a mommy-daughter friend duo that we have play dates with. Mommy, Angie, and I are cut from the same cloth, but different enough that we bring different things to the table and really enjoy each other. The daughter, Harlow, is Mckenna's best buddy. She LOVES Harlow. If you tell her she's going to see Harlow she does nothing but say "Harlow" over and over and over again. When they see each other, they hug and kiss endlessly. It is adorable! I am so blessed to have a friend I love, who's daughter Mckenna loves!
I'm thankful for a good eater. Mckenna is a really good little eater. She has little phases where she wants more of one thing and less of another at times, but it's rare for her to put up a stink about eating. She LOVES veggies and fruits, so beyond that, I don't care what she eats. Ha! That's not exactly true, but I know if I can get her to love fruits and veggies, she'll be getting plenty of nutrients. Right now she's on a peanut butter on bread, broccoli, and egg kick. Frozen peas are her favorite snack. The thing I love best about her is that when she doesn't want something, she at least puts it in her mouth. Sure it makes it kind of messy from time to time, but I love that she will at least TRY it. She will put it in her mouth, chew for a second, and then say, "no" and hand it to me. Better to try than to not try at all :)
I'm thankful for the good news about Grammy! Mandi's mom's mom had a bit of a cancer scare over the past month and was patiently waiting results of a biopsy of her lymph nodes. So happy to report that the biopsy was clean. Our prayers were certainly answered.
I'm thankful for time with Mckenna. I said to Mandi the other day that I'm starting to enjoy my time with Mckenna more and more. That's not to say that I didn't enjoy our time together in the past, just for me, it's different now. She's at that stage where you can see her brain working a bit. She challenges herself once in a while just to see if she can do a certain something. She communicates better. I just know when I wake up in the morning, I can't wait for our daddy date :)
I'm thankful for a superwoman spouse. I don't know how Mandi does it. She's the best wife in the world. The most perfect mommy. A loyal friend. An exercise enthusiast. A great cook. And just an all-around cool chick. I don't know how she keeps up with it all, but I'm sure glad that she does!
So, what are you thankful for today?
Labels: Thankful Thursday
Wednesday, March 6, 2013
Near the end of January, I was invited to Washington DC to speak about the need in the CF community for more treatment options, especially, treatment options that take less time. Here's what I said:
Good afternoon ladies and gentlemen. I want to first and foremost thank you for allowing me to be a part of this important process.
My name is Ronnie Sharpe. I’m a 32 year old CF patient. I’ve come here today to tell you about my life and what you can do to improve it. I’m a University of Arizona Alum. I’m a native of Arizona. I’m a brother. I’m a Christ follower. I’m a son. I’m a friend. I’m a sports fanatic. I’m an exercise enthusiast. I’m a business owner. I’m a cystic fibrosis patient. Most importantly, I’m a husband and a father.
I want to stress just how fortunate I feel to be able to wear all of these titles. I have an incredible life and I am blessed to be exactly where I am today, as the future didn’t always look so bright for me when I was born with cystic fibrosis in the early 80’s.
Cystic Fibrosis, the disease, and how it affects the body, hasn’t changed over the years. It’s still the same genetic mutations, affecting the way our cells operate within our body. What HAS changed however is the medications and the treatment options available to us over the years. I am here today, thanks to people like you helping to usher in new therapies to this community. It is these medications and medical advances that allow me to be here today, decades older than the expiration date given to my mom when I was born. It is these options that have allowed me to say “I do” to my wife and watch my daughter be born last year.
With that said however, we still don’t have enough OPTIONS, and current medications aren’t enough. We are certainly leaps and bounds ahead of where we have been, but as a community we NEED more. What works for some may not work for others, that’s why OPTIONS are so important. It’s so important that we can try a variety of medications to see what our body responds to; so we have the opportunity to put ourselves in the best position to succeed and take care of ourselves as best we can.
As the OPTIONS available to us have grown, our life expectancy has increased, our health has improved and our quality of life HAS gotten better.
And, if you ask me, quality of life is one of the biggest improvements we can ask for. Added years are important, but if you cannot live and live well than I feel there is little point in increasing life expectancy, which brings me to the something else you can bless me with today; MORE TIME.
I know many, if not all of you, cannot understand the treatment burden that CF puts on my life, but all of you can understand time, because we all value it and it’s worth just as much to you as it is to me.
Like all of you, I have a lot of things I want and need to do during a day. I need to succeed at my job. I need to do work around the house. I want to spend time singing Hokey Pokey to my daughter. I want to watch TV on the couch with my wife.
But there is one aspect of my days that I have to fit all of that around, that many of you will never understand: my daily care routine for my Cystic Fibrosis. My treatment routine, currently, dictates my days, my schedule, and my routine and in many ways, my life. I actually ran a stopwatch to give you an idea of what I’m talking about.
On Monday, I spent 3 hours 12 minutes and 56 seconds doing cystic fibrosis related treatments and exercise. That is an average day for me. To give you an idea, that is over 22 hours a week, over 96 hours a month and over 1,150 hours per year. I spend 48 full days a year doing CF related treatments and exercise!!
Any treatment that I can take that isn’t a huge burden on my time really excites me. Any potential treatment option that I can take that can potentially “give me time back” excites me even more.
So today, I am asking you for those two things: More options and more time. A positive recommendation for Bronchitol will do both.
Monday, March 4, 2013
Mckenna has dropped to one nap, which has been a little hairy. 2 naps is too many, 1 naps leaves a bit too much time before bedtime, leading to a little miss crankypants. She hasn't adjusted quite yet, so what was 2, 1-hour naps, has become just 1, 1-hour nap...which doesn't give her or us much daytime rest. Well yesterday she decided to sleep for 2 hours during her nap. When she woke up, she was a hype, overly happy little lady. She was goofy, smiley and cheerful all afternoon, with no meltdowns! It made for a delightful afternoon for all of us. For those of you who don't know me personally, I'm a goofball. Whenever I have a willing participant to join my goofy ways, I LOVE it. So since Mckenna was giggly, hyper, and looking to be silly, I was happy to join right in...in fact, I instigated it.
Here are a couple videos to recap the day. What a blessing Mckenna is in our lives, and boy is she fun!