Cheriz: My life with Cystic Fibrosis

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

I turned 34 in April this year! I love celebrating my birthday each year and seeing more wrinkles and gray hair appear. I LOVE that I am building this beautiful life with my family. I just wish my body could keep up... Being born with cystic fibrosis meant some challenges throughout my life. I never knew when CF would throw me a curve ball. I missed a lot of holidays in the hospital growing up and sometimes my body tells me to stop. The last few months have been more rough for my CF-related Arthritis. And today isn't any different, despite it being Father's Day! Dad & Andrew I had wonderful plans to go home to see my Dad today, then come back home in time to make some dinner for my family when Andrew gets off work around 5 or 6pm tonight. I had a lot of great plans to celebrate my husband and Dad for Father's Day- They deserve it. But, I woke up with frozen/stiff joints and spots all over. I can barely move, let alone walk or drive today. So all those plans went out the...

Hey everyone! So I am boldly going where I have not gone before…into the realm of blogging. Now to start off I will say that I am not a writer, so over the course of the next, well rest of my life, bear with me as I share my perspective on our life. To start off I am going to let you all know a little bit about myself, as if my lovely wife hasn't shared that information in the past! I am married to the lovely Cheriz, I am a graduate from the culinary arts program from Joliet Junior College, I love to cook, bake, be outdoors, movies, baseball (Go White Sox!), and I love my job! Recently I transitioned from working at Hy-Vee as the Assistant Meat Manager, a job which I really did enjoy but did not allow me to spend the kind of time I wanted with Cheriz. Also looking into the future and the discussion of fostering kids, it was not the right fit for me and our family. The transition lead me to becoming the General Manager of Culver's, which if you do not know, is a casual dinning r...

I will be posting about the CF Walk, once we have all the photos, etc! I promise it will be soon. However, I would like to talk to you about our job/insurance situation I will be calling my health insurance tomorrow to go over all of the issues, so I don't write this for sympathy or advice. I just feel I need to share exactly what Andrew & I have to consider on a daily basis and how much CF affects every aspect of our life. You all know (I'm sure) that my husband is at a new job now. It has been bit of a crazy life for the last 2 years. He worked at Culvers in the past & had moved up to the position of General Manager (2 years ago) when we lived near Chicago. He LOVED that job and would of been happy there forever, but since each Culvers are individual franchises, the owners don't have to provide benefits. Andrew's employer didn't offer benefits to spouses. That obviously would not work for us, since (we knew sometime in the near-ish future we would be...

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...

Too be honest, sharing about Cystic Fibrosis can be tough in the first place. I always try to be open about my CF though. I think it makes things easier in the long run. No weird looks when coughing, or comments about being contagious. I don't want sympathy, just for people to be aware. Plus, the more people know about CF, the more awareness for the CF Cause.  How to tell people??? Well I don't say "Hi, I'm Cheriz and I have CF".... That sounds so drone-like and weird. I usually try to tie it into conversation. By saying something about my volunteering for the CF Foundation and follow that up with "because I have CF." I also tell people to feel free to tell others if they wonder why I cough, etc. The weird part is now that I'm getting older and my CF is becoming increasingly more difficult. While most of my family members and friends could rattle off every surgery, my current lung function, weight, and secondary problems, in a second. I feel mo...

Mental Health and CF: On July 25th I did a 5K called Whitney's Run and I even shaved off 2 minutes from the 5k I did on July 2nd. I' was a little sore for a few days, but it was well worth it. It was for a great cause. All the proceeds went to a local Center that provides programs & help for suicide prevention programs. I thought this would be the perfect time to open op about how CF has impacted my emotional and mental health. You may not know this BUT mental health is one of the biggest issues CF patients deal with on a daily basis. In fact, the Cystic Fibrosis Foundation has really been focusing on these issues in the past 2 years. If you go to a CF care center (affiliated with the CF Foundation, which most are...) you take an assessment test to see how you deal with all the emotions CF throws at you. I was assessed in May (when I switched to my new CF center). As I knew the results would reveal, I did  scored high. I knew I would. I answered truthfully to all the...

Secondary Medical Problems: Well, it's been a while since I blogged. Something EXCITING though is we moved into our new home just under a month ago. By moved in... I mean Andrew and I started living there without our furniture. We finally got our furniture and our INTERNET a few days ago.  We had to do some work in it first, before we moved everything over.  I also had 3 Real Estate closings in the last month, plus other medical problems. t has been a busy time (with no internet), so sorry about the gap.  :-) Update: Basically I'm just waiting for everything. I'm waiting for my eye surgery on September 14th. I'm waiting for insurance to pre-authorize, approve, and move forward with the Orkambi.  I'll wait until after my surgery to start Orkambi, since the side effects can be pretty horrible. But I will discuss my going on Orkambi once I have the "thumbs up" from insurance. I'm excited to get my eye fixed finally and I'm very excited to see i...

"You are so lucky you are so skinny" "Must be nice to eat anything you want" "Wish I could keep my weight down like you" "You're so tiny and childlike" "You could be in high school still" "Wow you're thirty, you look 16" or hearing these replies: When I say I need to gain weight , "huh, Give you some of mine" Always hearing I'm "cute or adorable," never hearing I'm "beautiful or sexy". All these things can really hurt my feelings. But let me explain further where this post is coming from. Today a friend shared on Facebook about how some posts are body shaming & lots of people don't realize it.  I hear lots of people say things like " I'm not afraid to eat a hamburger. A man likes some curves." Or I hear remarks how all people who are size 0-2 are unrealistic and anorexic, etc. I understand a lot of times people may mean to help boost...

Wow, Mind Blowing! Wow, I looked at my Blog and my Blog's Facebook Awareness Page and couldn't believe my eyes! My blog has over 130,000 views on it and the Facebook page is close to 500 likes! I just can't believe this many people are following my story & the CF Community's Mission to Cure CF! It's great to see so many people want to learn and get involved. I've met people on twitter and social media platforms I have never met in real life (and who I may add have no personal connection to CF, but still donate & even attend Great Strides Walks where they live). It's unbelievable the love and support people can give! I'm just so happy and never could of imagined this when I wrote my first blog post... And in honor of that let's take a happy trip down memory lane, seeing big events that have been recorded in the blog, including some of my best posts! Also, it's interesting to see how much CF has affected my life just in these past...

Putting my sneakers on: Sorry, I haven't posted in a couple weeks! I have been pretty busy with work, which is GREAT! It's nice to see my client list build and to actually get a paycheck! YAY! The first paycheck I received was from my 1st closing! YAY! ( check HERE to see the picture) Since the last post, I've been really focusing on life. Yep, life. Just living. It can be hard work sometimes. I work, keep the house clean, maintain health, and even try to work out! But it's hard. These new kicks I got help motivate me though. Rock' em CF sends out new kicks to CFers that want to work out/jog/ and get in shape! I just filled out a form, had my doctor sign it, sent it off, and BAM- my new kicks arrived! Thanks Emily! Fragile, but Strong... Which is perfect timing, because I want to get stronger. Working out will help me gain muscle and improve my lung function. Win-win! This really helps strengthen my health, which is super important! As I get older, it get...

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...

Follow up: First of all, look Andrew & I are making banana bread. It's either to celebrate the good news of the purple machine arrival or console me for not getting it.... We'll see. And yes, for those of you who know Andrew went to culinary school. This WAS a joint effort. haha, I cracked the eggs & put the banana in..... and we used our awesome Christmas present (Love our KitchenAid). If you aren't quite sure what I'm talking about... a pretty purple machine? It's been the topic of conversation on my Facebook page called " Cheriz: Living with Cystic Fibrosis "  (consider "lliking it" to keep updated on everything) and I've also talked about it a little bit on my blog over the last 9-10 months. See, It's about getting a new Cayston Machine.  Cayston is one of the nebulized antibiotics we (CFers) can take to keep infections & the bacteria in our lungs at bay. For example: 80% of CF patients have psuedomonas aeruginosa in ...

Juggling the Medical Stuff: I'm glad my life has been busy, since being busy keeps me focused. Plus, I love it , which most of you probably already know. I just prefer to be busy with more of the non-medical stuff  rather than medical crap. I feel like I'm a pro at Juggling life and medical problems.  For example: I'm getting married this August and I am planning the Great Strides Walk in Princeton (June 27th). I LOVE planning events, I'm super organized person (to a fault sometimes).  I wanted to make sure to plan the  wedding in Jan/Feb, so I could focus on the walk in April/May. Both events mean a lot to me and I wanted to make sure to plan each the best that I coud. And I'm pretty excited that I'm turning 30 in about 1.5 months!!!! How exciting is that???  For a long time I thought I'd never get the chance tobe 30 years old, or marry, or grow!  But I am, thank you to new research!  My lung function is around 52% which is okay, but it is at the ...