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CF Fundraising

Since 2012 we have raised 


$76,006. 50 for the 

CF Foundation!!!






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Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...

Starved Rock State Park

The fun way to get my exercise   :-) Sarah and I hiked at Starved Rock State Park today! I usually have to work or play practice, errands, or something. But I had nothing planned for this afternoon/evening! I asked Sarah if she wanted to go hiking at Starved Rock. We both are always prepared and packed bags with water, sunblock, and snacks. My bag also contained some bandaids (I'm lil accident prone) and of course my meds and inhaler (which I rarely ever use, even when I'm indeed needing it). We started by first heading into the trails towards Pontiac Canyon, then we walked over to the River Trail and enjoyed the veiw of the River. Once we  were almost to horsehoe bend we had to turn around (where it looks like I made a mistake with the higlighter). Which wasn't a mistake, we started to hear thunder and decided to head back towards the lodge. We had to back track probably .25 miles. But we took the hiking trails past 4 more canyon/spots...

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...