Cheriz: My life with Cystic Fibrosis

I had a moment like this at work tonight! While I was at work tonight, one of the cook's asked me if there are different ways CF affects people, etc. I told that it depends on how many and which mutations a CFer has. He hesitated, and said "well, a buddy of mine had CF and passed away a few years ago." I asked him it is was a guy named Josh, who was from around here.  He responded "Nah, it was from when I lived in the Quad Cities." I swear my heart stopped, I couldn't be. No way, could it be my Danny? My surfer dude? (to read about Danny click HERE to go to Blog about Danny  .) I then asked if it was Danny Liedtke? IT WAS! He was buddies with Danny.  [Background:  Danny and I weren't allowed to be around each other after they found out about the CF bugs that spread from CFer to CFer, and I lost touch with him. In college I decided to search online for him, I had hoped to see how he was, maybe be friends via internet/texting. But when I ...

Speaking up about my CF: Why Now? Well, why not? First of all, I grew up in a small town and everyone already knows I have CF (for the most part). So I never thought about awareness and advocacy much.  It hit me while away at college that nobody knew I had CF.  So instead of going home to do meds, I would just kept hanging out with friends. I was so sick during those years and that is one of the main reasons my lung function dropped to the 30%s.  So I started to share that I had CF with some people, close friends, etc. They eventually convinced me to do some Stand-Up Comedy about it to raise awareness. So I auditioned and made a show for the Big Ten Network. I announced I had Cystic Fibrosis on T.V. Click here for youtube of Clippings from that TV show :  Click here for youtube version of my TV debut doing Stand-Up!   (bare with me, its my first time doing CF Stand Up. I start about 10 minutes into the clip) My CF ddin't seem to bother anyone. ...

In my last blog I discussed Transplants! I really hope everyone saw the stories/videos I shared about two CFer's Tranplants! I wanted to discuss something more serious, since lately I hadn't talked about anything CF too much.     Then I received this in the mail: Nothing new, just insurance not wanting to pay for a Med! I have been on Tobi since I was a teenage! It is highly effective with CFers who have Psuedomonas Aeruginosa (the only CF bug I have). And my doctor, and many other doctors believe it in rotation with Cayston (the newest nebulizer) can greatly help our lung function. I have been on Cayston and Tobi alternating months now, for at least 2 years. We (my doctors and I )both believe these two nebulizer treatments together are really contributing to my improved lung function (over 20% increase)! I'm up to 61% and now, because there isn't enough research supporting the two together, they won't allow it. I love the part (where I highlighted) t...

=  I realized today that I have never discussed lung transplants and how that is what motivated my goals two years ago! 2 years ago in Jan. 2010 my lung function had been dropping steadily and was around 38%. I never EVER thought I would have to get a lung transplant and I never EVER wanted/want one. I always believed my behavior and work made up 70% of how well I did, my doctor & treatment was another 15% and the last 15% is luck. Luck, you don't catch the bugs that drop your lung function (basically).Luck, that I don't get sick.  I avoid being around other CFers, because my body has built up immunities to certain drugs and allergies to others and I don't want to take the risk of getting sick. I work very hard to not get sick and as far as my luck goes with CF, it's not the best, considering all the surgeries and other medical problems I have along with my CF. The idea of a lung transplant scares me! I think that is absolutely wonderful ...

Craft Show This Saturday is the Craft Show! Mom and I will be selling our stuff there! It's at Liberty Village in Princeton from 11am-2pm! Please come and see all the booths! There will be 20 booths, kid's bouncy houses, games, prizes, raffles, etc. Proceeds from raffles, etc help give the residents of Liberty Village Christmas gifts and a Chirstmas Celebration! I'm excited to do this craft show, I remember going to them when I was younger! I loved it! Mom would take me along and I really enjoyed spending the day with her and looking at all the crafts! Mom is selling lots of hats, some purses, pouches, a couple blankets, teddy bears, etc. I will be doing my usual picture frames, notecards, etc. I will also be selling Michelle's My Bubble Products! To see some products: A Few of Mom's products -> Click Here!     Michelle's My Bubble products -> Click Here!      My mom said she is going to set aside a portion of her profits to ...

The Breath of Life Gala: They are honoring Sara and Marie!!!! My nurses from Clinic! I had these two amazing women as my main nurses for over 21 years! I shared my feelings/story for the MC to read at the Gala. I'm very happy and honored to be able to tell everyone how amazing they are and how much they mean to me and the other CFers! After the Gala (next weekend) I will tell you what I wrote and more details. As many of you know, these two ladies did sooo much work over the years! Even while I was away at U of I, I would call them if I was sick and they would ask me questions over the phone, help me figure everything out, get ahold of the doctor, gets my prescriptions filled and sent, and check up on me! If I left a voicemail, within a few minutes they would call back. They were always willing to help and always WANTED to help! At Clinic, I was always excited to see them and tell them everything that has happened! I always wanted to gain weight and see the...

CF: Good and Bad: The Trade-off. I noticed tonight while shoe shopping that it is really hard for me to shoe shop. My feet are a size four, which ladies sizes start at a 5. Shopping in the kids section means there are no heels and all the flats have tons of glitter and bows, not to mention tennis shoes are themed with cartoon characters like Dora the Explorer. So, I tape up heels on the backs, take them to the shoe repair shop and pay to have them made smaller if possible. I also stuff toes with kleenex and try to find heels with straps that buckles around the ankle to make sure they stay on. My right foot is smaller than my left due to my Cerebral Palsy. I'm very fortunate my CP doesn't affect me too much. My right hand is somewhat "clumsy." For exaple, I can't tie knots very well. And  lately, my right eye has been starting to wonder off to the right.. But overall, not too many problems. My CF obviously effects me a million ways medically and time wise I do...

Thank you to everyone! I had a very busy weekend, I worked a wedding rehearsal dinner and a wedding; Also our GreatStrides Fundraising Team went to the CF walk on Saturday morning! Thank you to everyone who came and walked, fundraised, and donated to help our team reach our goal! Our Goal was $1,000 and we raised over that amount! We were soooo thrilled to reach our goal. (the final amount and our Team Photo will be posted later) [the pic to the right is me and my cousin Haley, she is 10yrs old and made us matching necklaces!] It was a great walk along the riverfront and afterwards we went up to the top of the observatory tower! What gorgeous veiws! I've decided to do two CF walks a year, the main one (Peoria) which is in October, and the Champaign Walk in April. The one in Champaign I won't fundraise as much and will just have a few friends from the area join me. However, I want to keep focusing on the Peoria Walk. Each year I hope to have more p...

Class and Crafts Sorry, I disappeared for a bit. I had lots of exams and papers due last week for my classes. I also wanted to focus on getting back on track. I discussed how I had been getting off track with my meds and everything in my last few posts. I have been doing better. I'm still not doing all my meds everyday, but it really is quite difficult to even fit in the ones that I can do. I need to start jogging now too though. I didn't add it back into my schedule at first, for fear of adding too much. So besides class, what have I been up to? well, when I do my meds and treatments, I have found some fun things to keep me occupied. I have been painting and organizing my scrapbooking stuff. I do some crafting too, like making picture frames, etc. My mom has been crafting a lot too lately. Well, technically she has been sewing and crocheting. We both sells some of our products at a local store called Annie's  Little Pots! We also are doing a craft show in a coupl...