Wednesday, March 25, 2015

LOTS, LOTS, LOTS to Tell!

Doing What I Can:

People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that"....

Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here) & I'm keeping my Food Journal for him to look at. Here's how that is going:

Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I'm supposed to play with my diet to see if certain food make the stomach pain and bathroom issues better or worse.  Also, today I got my Celiacs blood test done!

Picture to right: Haha, after the lovely blood test I had to run out to the DMV to get my licensed renewed. Which was actually a lot faster than I thought and my picture on my license isn't awful. SCORE!

My following Doctors orders and keeping compliant with my meds can make a difference in my health. But, I also like to make a difference in helping further research to help other people's lives too!

So another way I try to make a difference is Clinical Trials. I'm beginning my next one (Inhaled Mannitol) on April 8th. I got set back, since I got so sick Nov-Feb (losing 15% lung function). I've did 3 clinical trials as a child and this Mannitol trial will be my third clinical trial in the last 2 years too. To read about the past clinical trials and why I participate click here.

Another big way I can make a difference in the research is to help funding for it. I started a Great Strides Team in 2011 and it has grown over the years. It actually got to the point where I thought a Great Strides Walk should take place in my hometown of Princeton, IL. And in 2014 we decided to do just that. With over 120 people and 35 sponsors we raised over $13,300 in 2014 at the Princeton Walk. So the CF Foundation added our walk to the list of national walk sites for Great Strides in 2015!

So this year it's going to be even bigger and better! Read all the details HERE!

We have been doing smaller fundraisers to supplement the walk.


For example: My 30th birthday party is a bowling fundraiser. If 30 people come then we will raise at least $120 for our TEAM CF2 for the walk! I knew I wanted to celebrate turning 30 years old. Honestly when I was a teenager there were times when I didn't think I'd live to be 30 yrs old! So I had to  celebrate and what better way to celebrate then to have a fundraiser for my Team & CF! If you can't attend my party and still want to donate: click here!

I never thought about smaller events to supplement the CF Walk until this year! The walk will have at least 3-4 teams walking at the Princeton Walk! Another team has jump started their fundraising too! They have raised around $1,700 already and hosted their own supplemental event tonight! They were "guest servers" at a local restaurant and all the tips went to their Team "Breathe Easy" led by Tom!

I had a great time and it was great to see sooo many people at the event! Tom did an amazing job!  Delicious food and donating towards our walk- what could be better?

Obviously I had to bring my zenpep enzymes (which I take whenever I eat, they digest my food) and of course I wore a mask ( except when eating - which the other CFers were in another room). I knew there would be a couple CFers at the event and with it being an indoor event, I always wear a mask. I wanna be protected from the superbugs, but I still wanted to go and support Tom's Team! Win/Win! 

IN THE NEWS:
AND.... I sent a press release to the BCR (Princeton Local Paper) awhile back and Goldie Curry from the BCR wrote a great article about my life with Cystic Fibrosis and our Walk!!! Make sure to check it out here!!! It seriously is AMAZING, Thanks Goldie!!!!

The NewsTribune (Another big local paper) contacted me to write a story about me & the walk as well! So that should be coming out in a few weeks! Looking forward to reading it, Thanks to Jennifer!

Want to join the Princeton Walk? Register here: http://peoria.cff.org/Princeton

The Princeton Walk takes a lot of support from the local community, family, and friends. But, I also have friends out of state that are stepping up to take my Great Strides Team (CF2) to a national level.  Our Team (Team CF2) is walking in 4 Illinois Walks, 1 in Albuquerque, New Mexico, Nashville, Tennessee, and then hopefully even Portland, Maine! If you live near one of the these sites and want to join my team, just contact me. AND if you want to be the leader of our team at a new site in a new location, I can help you do that too!

We walk and fundraise to help provide longer and better futures for all with CF!!!

Example:  tonight I just found out my dear friend Jen(who I called "Tubes" as a child) is starting to reject her lungs. She has had two double lung transplants, so I hope her body stops fighting & rejecting the lungs and her new meds she starts tomorrow will help her keep her new puffy, pink lungs!

 It's so hard seeing friends fight soooo hard!  Laura (age 33, my best friend) being denied lungs and losing her battle to CF, Alyssa (age 26) and Cloey (age 12) both rejected their new lungs and passed away recently too. All three of these beautiful, young, smart ladies lost their lives way too early to CF.

I hope Jen doesn't have to fight and struggle. I hope she responds really well to the meds! 
 Please keep Jen (tubes) in your thoughts & prayers

  Me & Tubes in the Peds Hallway at Hospital (Art Gallery)
-yes together, it was pre-discovery of the superbugs. 
I looked up to Tubes growing up and she is just as inspiring today!
Keeping Fighting Jen and I hope you respond well to the meds! 
Love, Cheriz

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