Cheriz: My life with Cystic Fibrosis

Worried and Lazy Too: Probably, Lazy isn't the word I should use. But, I've noticed lately I've slowed at posting on my blog and haven't been posting as much via twitter . Oops. Sorry. I guess I didn't notice, but instead of announcing all my news on my blog, I've just been posting in on my blog's (CF Awareness) Facebook pag e instead. So I apologize for not keeping you all up-to-date. Once a week blog posts, that's not normal for me. I used to post a few times a week, so I need to keep more on top of it. I promise, I will try. Let me tell ya about the few things that did occur this week and my big worry/scare! As you may have read in previous posts I did the screening for a new clinical trial with Doc on Wednesday. It's pretty neat and I hope I make the criteria with all my numbers. Only 144 participants nationwide are doing this one and it's relatively new, so very few (I think only double digits) have done it in the past. However, Wed

My Lungs Getting a Workout: Since it's been over a week since my last post, let me give you a quick update before I get to the main topic of this morning's post. Okay, so my diet is working. I'm still sad I forever have to say goodbye to sooo many amazing foods. BUT, I'm sooo happy. I'm having barely any (almost zero) issues anymore. Whew. Dear Pancreas why did you have to go and fail on me? But I guess it's really good that it's working. I'm getting out and learning the real estate market in the area and prepping for my state exam, which I'm taking on Andrew's day off next week :-) As you may have read on my Facebook or twitter page ... had some car issues so I didn't make it to the Doc's on Wed. We gotta take Andrew's car in and get some $400 thing fixed, because it's unsafe to drive. Waiting for his next day off to do that. So in the meantime he's been using my car, which is a little problematic for this week. LOL. But

Lots going on medically: This week has been a big week! For example, did you know: this weekend is "National Walk Weekend" and there are over 150 Cystic Fibrosis (Great Strides) events (walks) taking place across the country just during this weekend! How awesome! Make sure not miss out on Princeton's Walk today as part of my team (Team CF2) here !  But wait there's more exciting news!... The FDA advisory board recommended approval of Orkambi (a drug that targets an underlying defect for mutations DDF508). It was named Orkambi just recently, it is a combo drug of Lumacafter & ivacaftor. Side note: Ivacaftor is also know as Kalydeco (which was another drug that targets the faulty gene & its protein product, CFTR. This was for people with the mutation G551D ). Kalydeco & Orkambi are two drugs to actually target the defect, which means we are heading in the right direction. Side note: this is not a cure, actually the 2 drugs haven shown to help les

Dear Mom: Thank you for always encouraging me and telling me I can achieve my goals. Thank you for taking care of me, pretty much 24/7 and making sure I was healthy. You're the reason today that I graduated college, can dance, sing, and perform, the reason I'm a healthy weight, and was able to get rid of that leg brace. You're the reason I succeeded & honestly, the reason I'm alive. You are so strong. But yet, you are the most caring & kind person. Thank you for being someone I can tell anything to and always being there for me. I can't imagine how hard it was not bringing me home until I was 5 months old. I can't imagine flushing my mediport, stomach tube, watching me go through medical procedure after procedure.. But you know what? Thanks to your playing Nintendo 24 hours a day w me while in the hospital, doing funny dances or singing songs to keep me entertained during painful procedures, I still smiled and never noticed the nega

Amazing Opportunities : Andrew's Birthday was May 6th, he finished the semester yesterday (the 7th), so what would be a better way to celebrate everything... than meet Lewis Black!!! Pic right: Okay, we celebrated his birthday on the 6th too! I made him a blue raspberry cake with green colored frosting ( his favorite slushie flavor & color). Then I made him a card & some minion gift bags to put his presents in!   But, still on the 7th the celebration just continued... How did we get the opportunity to see Lewis Black? Well, CFF chapters have competitions   & other ideas for boosting their great strides walks. One of them was to register the most Team members for a Great Strides walk for the Peoria, CFF Chapter. AND my fabulous Team  CF 2  did it!!! We registered 24 people in that time period. Now we have 45 walkers for the Princeton Cystic Fibrosis Walk so far!!!! I'm hoping to register at least 25-50 more in the next month! So really if you walk with great

Medical Update: If you don't know I've been having a lot more GI problems. I've always had issues with my intestines. Ha, that's an understatement. I've had almost 25% of my intestines removed over the years. It started at birth! (Read about my medical history HERE ). Picture Right: I'm a few weeks old here, you can see the scarring on my stomach from the surgeries I had. But I've really noticed more issues since 2013. By issues I mean : stomach pain, cramping, not wanting to eat all the time ( I know, crazy huh), and the ever so fun diarrhea. I use the word "issues" cause it's easier and let's face it, prettier... I was hospitalized for the bathroom issues in late fall 2013. But we think the IV antibiotics destroyed all the "good" bacteria in my gut, hence the inflamed colon (which is pretty annoyingly painful) & the diarrhea. But the bathroom problems are getting worse.. and I actually sometimes wonder if I could even

Happy May Day! I love May Day/ For many reasons. The first reason is kinda bittersweet. May Day always reminds me of my Grammer (Grandma). I spent a lot of time with her as a kid. My mom was a Stay-at-home mom. So Mom, Grandma, & Me (& my sister when she came along) would go to shopping a lot. We'd go on walks, get nachos in the WalMart Grille, etc. She was a huge part of my childhood! The reason I remember her on May Day the most is because every single year my sister & I would make these cone shaped baskets out of paper. We loved drawing on them, adding sparkles, and other fun goodies inside. We would sneak up and leave them, ring the bell, and run back to mom's car. We always thought we were sooo clever never getting caught. By the time we got home Grammer would have left a message on our machine " Oh my goodness, someone left me these beautiful baskets, how could I not have caught them. I was ready this year waiting right by the door" Then we usually