Cheriz: My life with Cystic Fibrosis

  How Do I Gain Weight- not with Whoppers! Hope everyone had a great Thanksgiving and Black Friday! Andrew and I had a lot of Thanksgivings to go to and it was chaotic, and Dad's Birthday is Monday! (To the Right is a Picture Mom took this  weekend) Okay, now to the blog topic: I don't eat out a lot and I don't like to eat fast food alot, with all my GI issues it can be difficult to gain weight. I know lots of CFers struggle with this. I have trouble with diary, meat, greasy food, carbonated drinks, spicy food. My mouth loves all these foods, but my intestines say otherwise. I'm hoping after my colonoscopy on Dec 13th I will be able to figure out some of the problems and tolerate more. I need to take in lots of calories, but I have learned some tricks along the way. Here is my Weight Gain Story: Besides eating Buffalo Wild Wings and scarfing down wings and their nachos LOL, there are lots of different things I can do to try and gain weight! I also, focus o...

Craft Show & Some Bdubs!  Yesterday, was my mom's craft show. She has such cute crocheted products (Hats, Scarves, Earwarmers, Beards, Toys, Purses, etc) that I was soo excited to see how she would do selling her stuff. It was in Naperville, IL. Andrew and I met mom and dad there. It was a great day. Andrew wore one of the crocheted beards mom was selling and walked around in it. AND a couple people came by and said " Oh, this is where the beards are, I saw somebody wearing one earlier" (people love them, they sell quick too for $5).  He's such a good sport! (Here is what mom's cubicle/booth looked like.) The stacking bins really help organize stuff by size! Overall, it was a great show and so much fun! (Below is a close up of mom's Hat Bins!) Love her hats!!!    However, my stomach hurt really bad for a chunk of the morning (thanks to Colon issues: read my last post about my Colon issues here! ) We spent the day helping mom a...

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...

Updates: Laura, School, Medical Issues: My Lil Updates: Medical Issues: The GI issues that have been keeping me from work, etc are getting better! ( Read about my GI issues here.  ) I'm  going to see a GI doc tomorrow to figure out what all is going on. I know most people hate going to the doctor, but I'm always happy to go. I like to know what's going on and catch problems before they become bigger issues! So Wednesday I see the GI specialist and Thursday I go back to Dr. B's for the Evaluation for the Clinical Trial. The first meeting didn't go to well, so hoping this Thursday is better and I can start the trial! ( read here about the clinical trial mess)  So glad this will all be sorted out this week! School:  I'm officially Medically Withdrawing from the semester. I missed 4 weeks total in classes due to hospitalizations and IVs. The school has told me I'll be on the 3 year plan (going part time)...However, I'm not okay with that, because 3 ye...

Laura- Fight of Her Life: See Laura's Link on the top right hand side of my blog! or go here! Laura, is another CFer, like me! We met when we were really little. Before docs knew we couldn't be around each other. In fact, there was a group of us. We'd hang out all the time, go to CF camp together in the summer, etc. Some of my CF friends would even stay at my house over the summer and I stay over at theirs. Our little CF group consisted of (or at least my besties) were: Casey, Andrea, Kevin, Danny, and Laura! Sadly, I lost Casey at 10(both of us were age 10), Andrea passed away at 16, I was 11, Kevin was 18 (so was I), and Danny passed away when we were 24. I'm not posting this to depress anyone, but to tell you this is a horrible disease. Yes, It has given me many positives and in some ways I'm thankful for everything it has taught me. Also, I feel like I needed to post this, because most people that know me, see me as - Cheriz...The bubbly, fun-loving, positiv...

Embarrassed to Dance: Yes, I know, I have been in numerous shows, taken dance classes before, etc. Why on earth would I hesitate now? Well, I moved from my small hometown to the burbs. Here is how I started dancing: When I was 3 years old I was diagnosed with Cerebral palsy, which affected my right side. Yep CF and CP!  I walked completely on the outside of my foot, held my right arm/hand up tight in what I call now (my T-Rex pose). And I talked out of the right side of my mouth. So immediately my mother being the AWESOME mom she is, she got me enrolled in dance to help correct it and build muscle. She put me in swimming classes to at age of 6...but realized I hate the water. Cold water makes me tighten my muscles and I can't hold my breath long anyway. So I hated the water. Still do to some extent. I can doggie paddie/attempt like swim and I can back float, but I tend to not get in the water. But dancing stuck with me! I love it. I loved performing, I loved Tutus, I l...

A Clinical Trial Mess: Monday, I had an appointment for a clinical trial evaluation. Let me start out by saying, I always get  amazing care at my doctors...HOWEVER, this evaluation was done by a third party brought in to handle the research. The research nurse was a flibberty jibbet. She was nice, but kept just re-organizing her supplies, like she didn't know what to do. She seemed nervous. She mentioned she usually had another nurse with her. She took my weight, height, urine test, pre-med spirometry test (PFT-pulmonary function test) Next she decided to draw the blood, while waiting for the pft results to print. She got out the supplies and the sterile paper that she places it all on. She dropped te paper on the floor and proceeded to place the packaged needles and supplies on it.... So in my head I tell myself "Okay...( inhale control exhale my germfreak...) it's okay, it won't kill me..it only touches the bottom of my arm, not the actual place that she is dra...

58 flights... That's how many flights of stairs people climbed this morning in Chicago in honor of those with Cystic Fibrosis! The event raised over $120,000 today and I'm so proud of my boyfriend, Andrew, who also climbed the 58 flights and did it in 17 minutes and 43 seconds ! (Pre-Climb: GATORADE! and excuse my bad hair...I woke up late ... was half asleep still... ) We gathered in a building, where they had music, snacks, etc before the race. After climbers reach the top there is an after party. We didn't stay long after the walk though, I had a lot to do today and Andrew had to work. My friend, Colleen and her husband particpated too! So it was nice seeing them again. (Since we have only "met"twice in person. (We became friends via online through our blogs, etc.). I wanted to participate this year, but with my going in the hospital and being on IVs all last month, I didn't want to push it. However, next year I plan on climbing! Each time...

Princeton Walk: It's official, My hometown will be hosting it's first GreatStrides walk ( Walk for Cystic Fibrosis)!!! I've done 6 walks: 3 in Peoria, IL, 2 in Champaign, IL, and 1 in Hollowayville, IL in the past couple years. However on   JUNE 28, 2014!!!!!!!!! I'm so excited to have Princeton have a Walk! My hometown has always been supportive and helped encourage me. My teachers understood when I missed classes, my friends understood when I did my nebulizers while hanging out,, and my family has always been there for me! What everyone needs to know about the walk: THIS IS A TRIAL WALK. If we have a good enough turn out at the Walk, it will become a permanent walk site! Which I would love very VERY MUCH!! Please help me make this a reality! Since this is the FIRST WALK! Before it can become a Walk Site with its own online registration and fundraising pages, we have show them we can bring enough people to the walk! The Foundation Said:  For this...