Cheriz: My life with Cystic Fibrosis

How did I breathe at U of I: At U of I, I had a couple of really bad semesters, where I didn't do what I should.  In 2009 I had high 60s for lung function, by April of 2010 I was in the 30s.  I would hang out with friends instead of do my meds, I'd skip meals to not have to take pills in front of people.  Between my skipping meals and not doing meds, I got pretty sick. I was on and off IV meds for 3 months.  (also note: I will doing Stand Up Comedy again this Friday, which I haven't done since those months at U of I ---> yay!) I came home (lived in my hometown) that May and got back on track. I went back to U of I for my final semester there that fall and kept on track! My roomie Stacy helped me a lot. When I think about those months where I was really underweight, low lung function, and on IVs, I know I don't want to be there again. Not that it is completely in our control, there are ways our lung function can drop that isn't related to our doi...

Bummer, Man: So, I just got a treadmill (thanks to some awesome family I have) and I really, REALLY want to get started on my jogging. However, dun dun dun... Guess what is back. My CF- related Arthritis/ or whatever it is. I don't think this is CF Arthritis anymore... Dr. B wants me to gets some tests done and see a Rheumatologist, to see if it is Arthritis related. I have no clue though. Here is a link to an article about CF-Related Arthitis : HERE The past few days I have been sore, but yesterday, I woke up and I felt stiff and it hurt to move a lot. By the time I got off work I could barely move. I got rides to AppleBees (to turn in paperwork for my 2nd job) and by dinner time it was fading in and out how much it hurt. I hung out with some friends last night and it wasn't too bad. However, when I woke up I had the hives/spots on my legs and arms, and it hurt to move. At work, I was scheduled as a Host, but ended up serving too, because we were short staffed and go...

 Researching: I have been talking with a friend a lot about my trouble gaining weight (it doesn't help my feeding pump isn't working). I'll get my rental/replacement soon, so no worries there.  But I've been looking up lots of information on the internet about gaining weight, and CF/weight gaining issues. Which I have always had ( I've had a stomach tube since I was 14). I've gotten some great tips. I think one big problem is that I'm always on the go, and only home long enough to do my meds in the morning, afternoon, and at night. I forget to eat a lot. Sometimes at work I will order something, but then will be in such a rush at night, I forget dinner. For example: Today, I was running behind while doing my meds, because I had errands to run (banks, bills, store, etc), so I skipped breakfast and ate a 75 calorie breakfast bar. At lunch I ate a bowl of soup, which the cook (at work) informed me was a "wise" choise...hahaha. I work ...

Lucky, very lucky! I have been very lucky in the last week or so. The surgery I have to have ins't as invasive as it used to be, I have been gaining weight. My CF Challenge (read about it HERE ) that I blogged about yesterday has gone into effect, which means I'm doing all my meds for the next 3 weeks! Maybe by the time the three weeks is up, our team will raise another $100, so I have to keep going. I know, I could just keep going, but I'll prolly skip my afternoon ones, or at least my feeding once I can. I even got to jog one day last week, since it was warmer. Then this weekend I had a CF related Arthritis flare up (When my joints freeze up and I get hive/spots- picture of what they look like->). It only lasted like 24 hours ish!!!! I was soooo happy! Last time this summer during "Hairspray" It was off and on for at least a weekish, which of course, my friends there helped me out a lot. (read about my last bad flare up- and all the details about my CFRD...

CF CHALLENGE! I have signed up for 3 Greatstrides Walks this year!! I usually bring a couple friends to two of the walks. But, one is very local this year! There is a walk only 15 mins away (next closest is an hour), so this is very exciting! I'm really trying to keep on top of doing all my meds. These past few days I have missed some, but overall still doing well. HOWEVER, I wanted to add some motivation I couldn't resist! Fundraising for the CF Foundation, for researching for a cure, etc. SO, I proposed this challenge: For every $100 my team or I raise for my walks (any of them) I will do a full weeks worth of meds! (this includes at least 2 cans of feeding a night and all 10 nebulizers everyday!) (and if we had coporate or large sponsors/donations those count too) Last year my team raised $1,200 at one walk and $75 at my smaller one. If we only raised that much this year I would have to do all my meds for roughly 3 months! We started fundraising and regi...

I'm not a number, I'm a person! Don't get me wrong, numbers are VERY important to me. The numbers ofmeals I eat, the number of Calories I take in, The number of lbs. I weigh and most importantly that single number that points out my % of lung function. So I live by numbers, but it doesn't mean I like to be treated like a statistic! I had a certain Surgeon for many years when I was younger. Let's call him Dr. Powelson (close to his real name...but not quite it). Well, Dr. Powelson, oh he was good at what he did, but had no bedside manner at all. I remember when I had to get my stomach tube (like long connector tube) taken out and my first bard button put in. He literally just yanked it out and jabbed the other one in. No warning, nothing. He was never very nice about anything and I remember him complaining a lot about how he didn't like to "work on us CFers." Well, about 1 year and a half ago I went to see him because I had a hernia (which I hav...

Cysters and Fibros: Before I get into a discussion about Cysters and Fibros and our online CF community, let's fist pump at the fact I have done 10 nebulizer treatments and my stomach feeding every day since New Years. I EVEN jogged today, it was at 5am, but it counts! The last couple nights I have been thinking about the Online Community CFers (ppl w/Cystic Fibrosis) have built. The terms Cyster ("sister" with CF) and Fi-BRO ("bro" w/CF) is what have we have started to call each other in online groups. It makes sense when I think about how much we share with each other online. I'm in 5 CF sites/ groups. I have gotten to know quite a few people this way, and have become good friends with some too! It may seem weird that people can get to know each other so well online, but you have to remember CFers are discouraged to be around other CFers, since we can spread the "CF bugs" from one to the other. Therefore, I , like many, go online to share m...

New Years: I have never taken New Year's Resolutions seriously, I actually never even make them. This year I decided to see if I could keep up with one. I decided a few days before New Years that my goal would be to do 5 nebulizers (out of 9 a day) and jog. However, the first two days of the year I had enough time (or made enough time in my schedule) to be able to do all 10 nebulizer treatments! So I'm going to keep doing all of them and see how long I can go. My Vest Machine is broken, so I can't do my vest. But I'm pretty active, I do theatre, dance, and even my waitressing can give my lungs a work out. So until I get the insurance to okay the new machine It should be fine. I'm not sure how often I will jog, since it is still freezing out, but I enjoy jogging, so once I can I will be out jogging. Doing all my meds takes quite a bit of time, I do 4 in the morning, 3 in the afternoon and 3 at night. (I'm doing ten right now, since I'm on Cayston th...