Cheriz: My life with Cystic Fibrosis

Lately, I have been posting A LOT about CF. Yes, this is a blog about my life with Cystic Fibrosis. and yes, CF affects almost every aspect of my life. BUT... It is not my whole life. So I wanted to take some time to talk to you about the non-CF stuff that has been going on. We have a lot of exciting news to share with everyone. First of all, we have been very busy lately updating our house a bit. We bought our bungalow in June of last year (2016). It had a lot of the rooms that needed a bit of TLC. The original wood, doors, windows, floors made it all worth it.  We tackled the living room & dining room first. Yes, we still have a few things to add & do in those rooms, but overall I'm very happy with how they turned out: BEFORE: AFTER: We are currently updating our bedroom and the bathroom this week! Pictures coming soon! I promise! Next, we will be turning our 3rd bedroom (from it's current laundry room state) back into a bedroom. Then we will upda...

Are you a mom, wife, husband, dad, brother, employee, volunteer? What do you do every single day? What does your life look like? I have a wonderful live that I want to keep enjoying for many more years to come. But, keeping up with everything I do can be difficult. Some CF patients do more than me (they might be on oxygen, on a Transplant list, take more medications), each case is different. I think that is the hardest part for the public to understand. I think people see me working as a Real Estate Broker, doing volunteer work, going to church, grocery shopping and forget how much of my CF is "behind the scenes." This post may seem dramatic, but I want everyone to FULLY understand what it is like to have Cystic Fibrosis and WHY we need to cure it!! Here are the things I do to remain healthy:  I keep my weight up (eat a ton of calories a day around 4,000 a day. Since Orkambi I don't have to force myself to eat, because I'm always hungry. I take around 15...

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 hear a lot of people say "I wish you could get a lung transplant" or "Can you get a lung transplant."   Which is fine and I completely understand. It does sound great.. new lungs right?!?!?! But I heard A LOT of those remarks over the last few months when I was struggling in the 30s for lung function. I wanted to explain. No, I don't want a lung transplant (tx), well not until I have to look at them. And no, I cannot receive one yet, which is a GOOD thing! A double lung transplant is way of extending our life when we are running out of time, it is not a CURE. When someone is waiting for a transplant, they are holding their breath, just hoping to get a pair of lungs. To even be considered you normally have to be below or around 30%. So by that point daily life is fairly limited and difficult, but if you get too ill or drop too low, it you may not be eligible anymore. So I don't wish to ever get that low in lung function, I do not wish to struggle for brea...

One big promise I have struggled with in past, present, and probably future is to EXERCISE! I know a lot of people struggle with the same problem, regardless is they have CF. We are too good at making excuses for ourselves. I don't have time, I don't feel good, I will start next week. I was on the right track in 2012. I was doing musicals, where I was singing or dancing every night. AND I was coming home to walk or jog almost 5x a week! I started slow and added more distance as I could. I would walk 2x a week with a friend. This is where I focused on distance & length, not speed. Then on the opposite nights, I would jog as much as I could, walk catch breath, and repeat. I had more muscle, was eating more, gaining weight, and my lung function was the highest it had ever been! 60 - 64% <--- WOW! I was single, didn't have a TV (on purpose) and kept myself accountable through my blog & friend (w CF) Laura. Since then a lot has changed. Living with another pers...

5 years ago I decided to start blogging about my life. I wanted to take a more active role in the CF community, share my story with others, hear others' stories, and fundraise more effectively. I believe I have accomplished all this and more! I can't wait to see what more the future has in store. There were many topics I could have blogged about today, but I decided for a such a big occasion that I should talk about one of the biggest decisions I ever made. Getting my stomach tube!!! Also it (apparently FB says) is "Feeding Tube appreciation week" Let me take you back to when I was in 6th grade. (time travel music insert here). I weighed 45 lbs around 4'8 ft tall and ran out of energy so often, I'd stay in during recess or breaks to eat extra food and drink ensure. I struggled keeping up with my friends on Halloween, didn't have enough energy to even play sports. I struggled a lot, but I kept on pushing. Thanks largely to my family, friends, and ca...

We spend 5 wonderful days on vacation in Florida and come home to SNOW! It barely snowed all winter and today it decided to play a little catch up I guess. Well, we enjoyed our few days in the sun! The weather was perfect! (picture: you can see Andrew out swimming in distance)  I love taking trips & vacations, but having CF always makes it a little difficult. We make sure to pack all my meds in my carry on. I have a small portable nebulizer machine that fits in small spaces. We always call ahead to get permission to carry my vest on at no additional charge. We put all of clothes and my Wabi sterilizer in the big bag, which we check. We just make sure the Wabi is safely packed. They always pull my bags to look at them & check them, we make sure to have a letter from CF clinic too! As a kid I had feeding tube connectors & feeding to bring on trips. Which adds up weight wise. So flying was tougher. We typically always traveled by car when I was growing up. We even di...