Cheriz: My life with Cystic Fibrosis

"I have CF..." just say it! So I have read some questions about relationships on a couple of the CF online communities and I've noticed lots of CFers have different attitudes when it comes to dating and when/how to tell a guy you have CF. Ha, it’s never easy... some respond with questions and some says "it’s cool". lol. You never know. But the sooner you tell them, the sooner they can accept it and learn how to deal with it, and you will be able a healthy relationship. I am by no means an expert on relationships. However, here is my opinion and advice to fellow CFers, so they do not make the same mistakes I did. I dated a couple guys in college, but I didn't stand up for myself (when it came to meds) and would always agree to go out (late at night) or travel to visit friends for a weekend. I wouldn't pack my therapies and I wouldn't take my pills in front of them. Basically, my health always suffered. I dated a few guys I had known since High ...

I had my CF appointment today! As you all know my goal was 105 lbs. (up from 101) and I wanted lung function to go up 3% (up to 60%). My actual outcomes were 107 lbs and 58%. I gained 6 lbs. and 1 percent lung function over the last two months... Dr. B could see the disappointment in my face and replied "Its in the right direction, this is good. Very good". AND he is right. Its hard to gain lung function, but sooo easy to lose it. If I gained even 1% per every 2 months.. I could get 6% in a year and be at my (first set) goal of 70% in 2 yrs.  (chart of progress of weight and lung function Click here! ) Dr. B is a huge advocate for running and exercise...his practice even has the word EXERCISE in the title...LOL. So he was quite happy I took his advice on jogging/walking. He asked me how I liked it and I realized that I really do enjoy it. I feel like I can breathe better the days I jog, etc. At first it was hard...but seriously advice to the CFers or anyone rea...

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...

The fun way to get my exercise   :-) Sarah and I hiked at Starved Rock State Park today! I usually have to work or play practice, errands, or something. But I had nothing planned for this afternoon/evening! I asked Sarah if she wanted to go hiking at Starved Rock. We both are always prepared and packed bags with water, sunblock, and snacks. My bag also contained some bandaids (I'm lil accident prone) and of course my meds and inhaler (which I rarely ever use, even when I'm indeed needing it). We started by first heading into the trails towards Pontiac Canyon, then we walked over to the River Trail and enjoyed the veiw of the River. Once we  were almost to horsehoe bend we had to turn around (where it looks like I made a mistake with the higlighter). Which wasn't a mistake, we started to hear thunder and decided to head back towards the lodge. We had to back track probably .25 miles. But we took the hiking trails past 4 more canyon/spots...

Packing it on and figuring it out. I used the same pronoun to represent two different objects. It seems wrong to do that, but it leaves some mystery... did it work? are you curious? As you might have guessed the first "it" refers to my weight. Yep, I'm gaining weight. 105 lbs. yay! I'm sooo excited to show/tell Dr. B next week! Although, I do think its all in my legs. Now that I have been walking/jogging every night, I have noticed my legs have gotten quite a bit thicker (this is a good thing). I'm don't think my legs fall in the "chicken legs" category anymore. Now!                                                              ...

Yipes, uh oh... My Groshong Mediport has been bothering me lately. I figured, eh. But it's supposed to be flushed with saline every month...and It's probably been 10 months. My port is in my chest. My doctor was a genius and while other people have there's up higher on there chest/shoulder area. Mine is tucked away and hidden. People don't even know I have it. I can hook up IV's run them under my shirts and into my purse, where I have a portable pump! Nobody notices! Ports don't usually have long life spans before they cause problems..and I have had mine since 1997. Which might mean changing it out.  I feel like a disgrace to the CF Community and pathetic by saying this (considering how many surgeries I have already had) but: I DON'T WANT TO GO THROUGH SURGERY, expecially one where they take out and re-insert a catheter in my jugular.  I hope it just flushes and feels better. I wish I could flush it myself, I change my own feeding tube whe...

The Final Stretch I have my "Clinic" (quarterly CF Doctor's visit) in 9 days!!! I found my Doctor last year and this April was my first complete year with him! [check out my charts of health on my "Clinics" page to see the upward trend in health starting!]  He really wants me to do well and his positive attitude towards CF has really  inspired me to try really hard to do the best I can! I've always strived for what I wanted (theatre, career goals, etc), but when it came to my health (I did what was needed)... This meant doing the "majority" of my meds, but putting lots of needed stuff on hold. Examples: I would get home from play practice, not make my stomach feeding or not do my night nebs, because I was too tired. AND  Weekend trips, whether with a youth group or friends, I wouldn't pack my meds. This continued through my college years. That has all changed now. I refuse to let other things get in they way. When...

Happy Fathers' Day to ALL the Fathers out there! I wanted to post a list to why I'm sooo thankful for my dad (its faster, bit more fun, and I gotta get ready for my Dad's Cookout still)!!! Top 15 (10 isn't enough..lol) reasons Dad should get more than a day of celebration: 15. He loves meeting people, making friends, and is quite social. 14. When something goes wrong, he is the person that can say the right thing to make me smile :-) 13. Is always honest. 12. Few yrs ago, he gave me HIS car, (so i could get back and forth to work/play practices) He rode his bike to work and back (he enjoys it too tho) 11. Best Sense of Humor! 10. He never complains, ever! 9. Growing up my Dad worked 6am-3pm at one job and 4:30-10pm at another. 8. Dad still managed to go to 99.9% of my performances 7. He is the least judgemental person ever, he talks to & helps everyone! 6. He is a pro at making doctors, insurance companies, & hospitals do ...

Little bit of Chaos, no big deal, that's normal. Today, I took my last dose of 50,000 Units of Vitamin D. This means today I needed to get my Vitamin D levels checked. I go to pull out the order for the lab test from my Med drawer in the kitchen and there's no order... [Time 10:30am]What? I keep every new order, script, and meds all there... Receipts, insurance info, Clinic papers I keep in my file box. There is no way I lost it. That's when it occurred to me that the nurse sent the Vit. D order and never sent me the lab order. [Time 10:40am] Shoot, I need to get to Mobile Meals. I rush to Mobile Meals ( different portion of the hospital), use the phone at disptach to call registration desk. copy the fax number down, while driving to the first person's home to give them their meal, I call Dr. B's office. I tell them I need the order sent to Perry today. (Note: I had no way of getting hold of my old doctor between Fridays at 4pm and Mondays at 9am... ) [Time...

I have been thinking about visiting U of I again, which led to me thinking about Grad Schools. I have posted some pics of campus at U of I. The last few weeks I have been looking into all the different grad schools I could attend. I found two in Illinois that I like and a couple in other states. Just trying to figure out which is right for me is tough. The picture to the right, is of my friend Sarah and I. We are at Atgeld Hall at U of I. Fav. building #1. It is made of sandstone and most of it has been blackened over the years duue to pollution. Isn't that nice.. Plus this building has serious history, bell towers, a gargoyle ( anyone watch that show growing up?)...                                                  ...

Laura and Lara Today, was a pretty normal day. Work, Meds, Jog, Blog. Instead of jogging, we walked 2.5 miles. (which I recorded in my spreadsheet and I will be doing data analysis later using all the variables I can come up with...) But here is the more EXCITING part of my day: I was asked a week ago to be a guestblogger for  Lara's Blog . She is climbing  Mt. Kilimanjaro to raise awareness & funds for CF in memory of her best friend Emma! I hope everyone goes to her blog and wishes her good luck! She posted my introduction and guestblog today!!! So check it out  Right HERE! Lara, Thank you for your hard work and dedication to helping find a cure for CF! AND then there is Laura ( a different Laura), she is my best friend. Laura has CF too (we met when we were really young)!!! I know she has been going through a tough time. But she is the one who got me invovled in CF awareness! My first CF fundriaser was in 2008 at a CF Walk that Laura to...

A couple awesome and beautiful cylces: Who doesn't love the four seasons. The Cycle of Life, its a beautiful thing. And of course my favorite the Rock Cycle. Of course since I took 2 years worth of college geology classes I'm always in awe of the rock cycle. Both of these cycle are simply amazing and continue life. And now some nasty ones: Cycle #1: Everyone loves weekends and in some ways I agree... I don't work on weekends and I usually have something planned that’s fun. I deliver mobile meals to the ederly (who are ADORABLE) & teach sunday school to Pre-K kids (who are ADORBLE). With lots of adobrable things on the weekends, what's not to love. Plus I'll take a quick road trip to visit someone, hang out with friends, and have people come visit me. But with weekends comes a huge dose of laziness for me. I tend to skip more meds, get hooked up to my night feeding later, resulting in less calories and less energy the next day, resulting in more lazines...

Doctors Appointment .. It's so soon...my Clinic ( or Doc appt, Since Dr. B hates the term "clinic", ever since he quit the clinic and started a Private Practice)...  He wanted me to gain weight & improve on lung function...easy...ha ha. He broke it down into do all nebs, the VEST (which is what I tend to skip), and start jogging or biking etc... I have been doing very good with my morning med routine, but night routines..I skip a few, not gonna lie. However, that is why I have been blogging more and on FB more... I can type and read a computer screen while doing my nebs and vest.. Why do I skip my vest? Its hilarious, it makes no sense to skip it. You see incase you don't know what I'm talking  bout....           (This black vest inflates and shakes me) Yep, it shakes me. So I know lots of CFers who sing while doing their vest, it makes our voices sound high pitched and weird... (...

"I have CF." It's not that simple, when it comes to sharing you have CF. Growing up in a town of around 7,000, where we had tons of benefits for me when I was younger, it was no suprise that EVERYONE knew I had Cystic Fibrosis.  I guess I never really thought about it either. I never felt "not normal" or "weird" about my CF (even with all my hospitalizations and surgeries). In 2006 that all changed. I moved to Champaign, for college. I didn't know many people there and nobody had a clue I had CF. When I would cough, I would get some sympathetic "oh she's sick" looks, or some would actually comment on my "needing to quit smoking." Then the Swine Flu became a huge epidemic and I actually had a professor cringe away from me in disgust and say "you shouldn't go out if you are sick; you could have swine flu" I replied "Don't worry,  I don't have Swine Flu". She continued in a rude manner, ...