Cheriz: My life with Cystic Fibrosis

It is June already.... Wow, has time been flying by! May was Cystic Fibrosis Month and I spent a lot of the month preparing for the Princeton Cystic Fibrosis Walk (June 10th). If you want to join us or donate, just click here !  I also attended the Bloomington Great Strides Walk in May! Andrew (my husband) was the guest speaker  (watch video at link ) at the walk. I'm so proud of him, he has really stepped up in the last year and has been getting a lot more involved with the CF Foundation! In the last month I have gotten even more involved as well. I decided to join the CF Foundation Champions committee. We discuss ways to improve daily care and improvements that will help the CF population today. I was also invited to apply for a position on the 2017-2019 (2 year term)  CF Foundation's National CF Adult Advisory Council . The council is made up of 12 individuals that are selected across the United States that are leaders in the CF community. The AAC is responsi...

Last night was the CF Foundation Peoria Chapter's Volunteer Appreciation Dinner & Awards Night. The Peoria Chapter hosts this every year to say a BIG Thank you to all the volunteers & give out 3-4 awards to individuals/Teams.   Last year I attended as a guest/ award recipient. My parents and Andrew went with me to celebrate. I was very honored to receive my award last year "Outstanding Great Strides Partner for 2015." This year I was excited that Andrew was asked to be the evening's MC. He did a fabulous job! I'm so proud of him. I was the tech person for the evening & ran all the speakers slideshows & video content. The evening went very smoothly and the night was a huge success! Peoria Chapter only has one staff member, Kellie. Many Chapters have different staff members for different events. Kellie oversees Peoria, Princeton, Bloomington, Champaign, Tuscola Great Strides Walks, the Peoria Suzana Lee Golf Outing, the Peoria Gala, and helps o...

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...

It's a bit of a rainy Wednesday, so I don't know what is better than catching up on blogging & social media, while drinking hot apple cider.  I have a lot to get done around the house today. Yesterday, I fell asleep around 10am (without trying to) and didn't wake up til 4pm. Whew. Glad I didn't have any appointments. I really needed the sleep though, since starting Orkambi my nights are a little tougher. Overall, I haven't reacted too bad to Orkambi. Coughing more (which keeps me awake at night), my chest feels tight and I get out of breath quickly. But no fevers or anything. My energy and appetite have been good too. I started Orkambi 10 days ago and I knew there would be an adjustment period. I was excited to go for a walk last night. I walked a mile with Andrew, very leisurely. It took me a while and I needed to stop 3 times to just catch my breath, BUT I have heard of people getting so sick they are stuck in bed while they adjust. So, I will take my brea...

Fundraisers & More : Yesterday was a great day! Andrew and I attended the Suzanna Lee Memorial Silver Cup Challenge, Golf Outing for the Cystic Fibrosis Foundation. It is one of the Peoria CFF Chapter's yearly events and this year was the Golf Outing's 15th year! Everyone arrives around 11am for the grilled outdoor lunch before Tee time starts at noon. The Golfers are out for 4 hours golfing, some of the holes have competitions at them (like longest putt). During the golfing volunteers help set up the banquet dinner hall. There are over 100 silent auctions, chocolate fountain, hors d'oeuvres, followed by the dinner served between 5:30-6:30pm. Andrew loved golfing and I enjoyed helping set up the silent auctions. I was the speaker this year and was very honored to the speaking about my life with Cystic Fibrosis. The Golf Outing was started 15 years ago in memory of Suzanna Lee (a girl who went to my CF Clinic and was from Peoria). Her parents host it every year and...

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...

Clinic  Numbers, my mask, and updates: First of all, since my last post A LOT has happened. My last post was about the Peoria Chapter Cystic Fibrosis Foundation Annual Meeting & Awards Night. Make sure to scroll down & read that post . Not only did I receive an award,but was honored to be the guest speaker, BUT I also learned some facts (that I had never heard of before) about the CF Foundation! Secondly, Last week I had the privilege to speak at a local High School assembly about my life with CF and thank the students for their fundraising efforts. The Illinois Valley Central High School raised over $17,000 in 45 minutes for the CFF! Alyssa Paldo from WMBD News covered the event. If you want to check out the video she posted on Facebook (hear about the students did it and even see me on the news, go HERE). Way to go Grey ghosts!  Okay, now to catch you up about my clinic and tell you about the mask I wore! I drove from my place an hour to my parent's pl...

Tonight's Annual Peoria Chapter Dinner: Every year the Peoria Cystic Fibrosis Foundation hosts an Annual Dinner/Meeting. The latest and greatest news about the CF Foundation, research, and patient care is discussed. CF center reps, Pharmaceutical companies, CF Foundation Leaders, and Volunteers all come together for the same reason: to share and learn more about CF (ultimately to CURE it)! Tonight I was beyond excited and honored to be not only invited (only 1 CF person per indoor event is allowed, due to cross infection rules), but I was also asked to be the guest speaker tonight. If you would like to hear my speech, then head over to the  YouTube Video  of it   HERE .  I was very touched to receive the "Great Strides Partner of the Year" - Which typically goes to a Great Strides team, Corporate Sponsor; someone who pushes to make Great Strides grow and succeed every year. Which is what I try to do, but mostly I just loved being there. Connecting with others a...

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 ...

Linking Blogs Around the World: Last week I was contacted by my friend Kymberly at  Peas in a Pod Creations  to participate in the Blog Around the World Posts.   Pic: Me, Kym (the Bride), and here sister, Stephanie!   While Kymberly doesn't have Cystic Fibosis, her blog is an outlet for her beautiful quilts and other sewn, knitted, or quilted projects. Kym and I not only were best friends in high school, but we were next door neighbors. (like she said in her blog post) We lived exactly 18.7 feet from each other and some summers we spent literally the whole day 9am-9pm together hanging out! So of course I was thrilled for her to invite me to do this posting challenge.This is a great way for bloggers, like myself, to share our favorite blogger pages that we visit. Here are the ?s that came along with the post. What am I working on? How does my work differ from others in the same genre? Why do I create/Write? How does my writting process work? Hopefully, if you a...

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...