Cheriz: My life with Cystic Fibrosis

Weekend with Dan! This weekend was my friend Spencer's Wedding. Which is in the town next to where my friend Dan lives. So I drove there Friday and stayed with Dan this weekend! I had a lot of fun! I always do when I'm hanging out with Dan! Even though we were pretty busy and had lots of fun, I still made time for my meds and even got a jog in! The street he lives on has a ton of historic homes and I loved looking at them, and even ended taking some pictures! The wedding was really fun too! Spencer and Kayla came out into the reception hall singing to each other, pretty darn cute! It was nice seeing everyone! Dan and I got to swing dance quite a bit too! I had a great weekend last weekend and I know next weekend will be just as eventful! Next weekend is my first 5K, then I'm driving to Peoria to attend a Bags Tournament that Dream Factory is hosting, I'll help out there, then head to Champaign-Urbana! My friend Alex is musical director for Rent! So I'm goin...

This Weekend: I will be gone tomorrow morning through Sunday, so I won't be able to blog and will have to find something equally entertaining to keep me occupied during my meds. Today, I had a busy day; I ran errands, babysat this morning, judged theatre and interior design at the 4H fair this afternoon. I came home started packing and went back later to judge the fashion revue/show. Of course, I come home to continue packing, but I want to pack all my clothes. I keep thinking, "oooh I might want this" or "oh, that's really cute!" Apparently, the fashion show, got my mind in fashion mode! (packing and unpacking, packing and unpacking...) Okay, I took out a lot of the clothes I didn't need. And I got everything into 2 bags. For a 2 night/3 day trip that sounds sad. But with Med stuff, I'm proud of my packing capabilities (Yay, for Girl Scouts). bag on left: clothes (pjs, reg outfits, jogging outfits, cute outfit for going out), hair/toli...

I'm not a Mummy anymore! A couple posts ago I discussed how once in a while my joint gets so stiff I feel like a mummy (like I had been wrapped up so tight I can't move). Last night, the spots on my legs reached there worst point (in the last 4 days). However, I saw Dark Knight Rises and then had people over at my house, so I basically sat around most of the time (which is good). The spots started to go away around midnight and by 4am (when I woke up briefly) they were gone. I decided to get a bit of jogging in, incase they came back. I did a mile, then slept again. I, off and on, napped and did website work all day. I slept so much today that now I'm awake at 11:30pm. However, after I blog this I'm going to try and sleep, so I can get back to my regular routine. I'm so glad that I can move again. My CF-related Arthritis makes CF hard to fight. When I can't move, I'm more prone to skipping meds, not getting up to eat, not jogging, and most nights fail ...

HAIRSPRAY! The show went great, sold out every performance, the audience loved it, and I LOVED IT EVEN MORE! its late, but I wanted to write this now. This may be corny, BUT here it is: Despite my stomach tube problem and liver issue, I kept my health at top level. This is because nobody acted weird when I did my meds. It didn't bother any cast member and some even reminded me to do them! Thank you for helping me continue my upward trend in health and lung function! It is crucial at this point in my life to really keep on top of it and gain as much function as possible now! I'm at 58% and I my goal is to reach 70%, I want to kick Cystic Fibrosis's Booty! So I never have to make the decision of whether to have a transplant or not! SO: Cast of Hairspray: In general, thank you for letting me share about everything. By telling people I have CF and doing my meds while at the theatre, I can my health up! Usually, I crash and burn for a few weeks after shows and have to p...

Blog or not to Blog? That is usually my question. I can think of multiple topics about CF or things that happened to me that I could write about. Figuring out which one works best is the hard part. So tonight I decided to bite the bullet and discuss something that has been a big topic on the CF Facebook group and my friend Laura, specifically asked about. People have been asking about our stomachs. I know this is something I still personally struggle with a lot. I have a bikini that only gets worn at my parent's pool infront of my mom, dad, sister. But it is dumb to be scared ofwhat people will think of my G-Tube. I need that G-Tube to keep my weight up. It keeps me healthy, why am I ashamed of it? My surgical scars are not that bad, thanks to best Surgeon EVER (Dr. Vagunta)!!! <3 Vagunta! So here it is: a pic of my scars and another pic of me hooked up! Don't mind the red marks, thats where the bandaids and tape irritate my skin. Also, my mediport scar is hard ...

Good and Bad. I love doing Hairspray and because of the Casts openess and acceptance of me doing neb treatments in front of them, I 've been staying way healthier than I usually do during plays. So no clue why this happens to me once in a while, but I kinda noticed how my legs were sore all day yesterday. Then as the night progressed I was even more sore. I kept thinking, oh its just from all the dancing. So between, being sore and finding out my good friend, Laura (with CF) is back in the hospital, I wasn't as cheery as normal. BUT, the Cast of Hairspray always knows how to put a smile on my face and I still had a FANTASTIC time last night. Sore from dancing, I wish. Nope. I woke up this morning barely able to move. I feel like a Mummy when this happens to me!! I also tend to get a fever and pink spots and swelling in my legs (as it gets worse). This happens to me once in a while. I will be so sore that moving makes me cringe or cry. When I was ...

The other night's (technically morning) 2am jog. I got home from a Cast Party last Saturday night pretty late, but still had lots of energy. I decided to jog. In Feb. my Doc. told me I should start jogging or cycling. I've always been envious of those who could run. I always wanted to be a runner. When I was younger it was hard to know my limits. Now, if I'm jogging I know if I can push more or need to stop. I  started just walking a mile, then 2, then 2.5, then 3. I walked 4 nights a week from Feb-beginning of April. Then in April I would speed walk and put bits of jogging in here and there. In May, I started running a mile a couple nights a week and walking the other nights. In June, I started to jog/ walk 2 miles four times a week. And finally last week I started walking/ jogging the full 3.1 miles (5K). at 2am on Sunday I jogged (& walked for a few seconds, when tired) a 33 minute and 12 second 5K . I still think my route may be off a bit. But that is o...

A random list of things I've heard said about me (in my life): 1. Plenty of people have thought I smoked in the past and few thought I was anorexic (because of how thin I got). 2. Been accused of having Swine flu at College 3. Been labeled as a genetic disease whenever taking a genetic/Bio class  None, of these bother me. Everyone jumps to conclusions. They are all funny stories now! Here are the stories: 1. (At U of I)  Smoking Story:  A guy that I liked at U of I kept joking  around making little digs about my smoking, and I always thought he was kidding. Then a few weeks later when people started thinking we were dating, he mentioned to me how he could never date a girl that smoked. Oh he wasn't joking, he thought I smoked. And I remember thinking, "how bout a girl with a lung disease?" Needless to say, we never dated. Anorexia Story:   I'd eat dinner on fridays before I headed out the door to meet a ton of friends at an extra ...

Updates on my progress with being open about CF and jogging! For anyone new to my blog: WELCOME! if you want to know more about me click here for my website!  Otherwise, feel free to browse through my blog entries, I'm trying to write about multiple topics including: insurance, relationships, sharing about CF, etc (they are sorted on the left side side by topics). However, lately, just keeping on top of doing everything has taken a lot of my time. Currently, I'm in Hairspray! Last night instead of blogging, I updated websites and made this FB cover for the cast: Update on me being open about CF: On the days I babysit from 5am to 5pm, I don't have time to do all my meds before having to leave for the carpool (for play practice). So I decided to bring them with me last night. I did my main (15-20 minutes each) nebulizers in the girls dressing room. Nobody really seemed to mind. Then some people started going to the green room to hang out and I got bor...

Wow, what a night, what a cast! Today was interesting! We walked in the parade and advertised for Hairspray! My uncles brought the music/sound system and we jammed out to "You Can't Stop the Beat!" I enjoy parades, expecially performing in them. I have been a mermaid, a game show contestant, and a 70's Disco Dancer (in the Riverfest Parade) and a Christmas Mouse, elf, etc (in the Princeton Christmas Parade). I love parades! However, the rest of my day wasn't so LOVELY! Lately, I have been talking about my stomach tube, but it just has been bothering me a lot (like hurting). And tonight during our rehearsal warm-ups, It felt weird all of the sound and I realized it was leaking a lot. Uh Oh! I run back and realize the balloon of it had collapsed. This happens once in a blue moon, like 3 times to me (that I'm aware of). Usually they slowly deflate. Nope. Tonight my button (stomach tube type name) collapsed! It is held in by a balloon inside my stomach. The...

So the last week has been crazy. Between babysitting,websites uploads, hmwk for real estate exam, my online politics course (pre-req for Grad School), play rehearsals 5 nights a week, and trying to train for a 5K... I've been pretty busy. I have been failing a little at keeping up with my meds. I haven't been doing all 4 in the morning and have been doing 2 instead of 3 in the evenings. I think its crazy that people say "Wow, how do you do it all". I don't. simply one area of my life tends to get left behind a bit. Yes, sadly that is therapies this time. I'm refusing to skip my entire morning meds or evening meds when I'm rushed though, since that's when I tend to continue skipping. Sunday, Wednesday, Friday and today i will have done them ALL! YAY!  But Tuesday and Thursday I skipped 3 each day.  I'm not perfect, nobody is, but I am honest. I can tell the difference in my breathing. Plus, the air around my place was really hard to breathe in...

Organization: it is a great thing! I'm doing another CF Walk in October! It's on the 6th at 9am. Why am I posting this now? In the past I wasn't organized. I would end up asking a couple friends to walk it with me. I didn't fundraise much, but I want that to change! I've had people tell me they would have walked if they knew about it. I'm blogging now, being more active on CF communities online, and there is no reason why I shouldn't invite others to do the walk. Everyone knows I have CF, why did I never invite more people?? No clue. So here I am inviting everyone to come and walk with my team! Here is the link the Facebook Event: Cheriz's CF walk FB event Also a link directly to my GreatStrides Walk page is on the upper lefthand side of the blog! I want to start to be more active in fundraising walks (along with 5ks). I'm planning on doing 2-3 CF walks a yr, and the ALS/PLS Walk every year! If you want to cheer me on at my first 5k i...

I got my passport today! I get to travel with my two uncles to New York, to Niagara Falls, and into Canada in August! I'm so excited! I can't wait! I had the opportunity to go to Las Vegas last fall and up to Minnesota (Mall of America) in December! It had been years since I had traveled. I use to thinking traveling would be really tough. Its not as tough as I thought. I carry my machines in a carry-on case (so I don't lose them and they do not get broken). Pills, feeding bags, needless syringes, medical tape, and all other non liquid medical stuff goes in the carry on. Oh, and snacks of course! (YUM) All liquid medication (breathing treatment meds, and feeding cans)all go in the big suitcase. I pack 4 cans of feeding per night (they add up quickly).  Tip:  I p ack ensure or high calories snacks for during the day (I tend to burn more calories on vaction than at home) And as I use my feeding and medication up I have more room in suitcsae for so...

Introducing my GuestBlogger, Sean! So tonight, I'm posting an interveiw with my friend Sean, who has  Primary Lateral Sclerosis (PLS). We met through volunteer work with a Non-profit (Dream Factory-granting dreams to children with disabilities and medication problems) that is based out of Peoria. He's pretty awesome and has a great attitude; hence I want to share with you about Sean!         (picture is at the walk to defeat ALS/PLS) 1. Hi, Sean! Why don't you tell us a little about yourself.  Hello, I'm Sean Damon and I have PLS "Primary Lateral Sclerosis" I am a 42 year old father to 2 Wonderful boys 9 & 18 and current going through a divorce after 18 years. I am recently Medically Retired Federal Law Enforcement Officer from the US Department of Justice and before that, I was a Professional Recording Artist and still love to play and write when I can. 2. How did you find out you had PLS?  It took over 4.5 yea...