Cheriz: My life with Cystic Fibrosis

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...

Since My Birthday: Well, good news since the last post (when I was admitted at my last appointment, unfortunately on my 31st Birthday)! My port has been working since we used the de-clogging medicine. Whew! I was honestly wigging out about the idea of replacing it.  I posted a video describing more on my CF Facebook Page, Here ! So luckily since that worked we haven't had too many speed bumps. I hope I'm gaining weight. I know my breathing is a bit better. Not coughing all the time anymore. Only coughing with increased movement or activity. I had a bit of an asthma attack trying to shower & wash my hair. But, to be fair that it is a bit of struggle when you can't get your chest wet at all. I end up doing the hokey pokey in and out of the shower with arms, legs, etc. I wash my hair typically in the sink.So it takes time and some movement, etc. However, I'm more upset that I left my blow dryer at home, I have been frustrated that I can't dry my hair flat/strai...

Doctor Appointment: Yesterday was my 2nd follow up since I had gotten sick at Christmas. Read my 1st and 2nd post about that to catch up! As I said Doc really didn't want to put me on IVs (my numbers didn't improve after them in 2015 anyway AND I always have secondary problems from them). There are also no oral antibiotics options for me (I'm allergic to all of them). Which means when I get sick its super hard to get better. BUT, as you read in my last post, I did get a little better! We just added prednisone for a week and an extra set of nebs. I also talked about how I'm using my fitbit to challenge me to workout more, count calories (to gain weight), and keep me accountable in general. Well, great news! It is working. Since Christmas I have gone from 103 to 107 lbs AND climbed from the 36% in lung function up to 56% (highest I have been since 2014) yesterday. Doc honestly thinks I can get back to 60%. His office just got some new equipment and he is going to sta...

Hit a Snag: Well, unfortunately we cancelled my doc's appointment for today. So I do not have an update on my lung function for you. I know, sounds crazy to cancel right? Actually, it was the smart thing to do. Considering our plan was for me to take prednisone for 6-7 days and do a Collistin Nebulizer treatment 3 x a day didn't work out too well. I got the prednisone filled right away, I had the pharmacy and Doc office receive and set up my new nebulizer on Monday/ Tuesday. However, the insurance needed a prior authorization and  they have a standard 15 days to decide if I get the new nebulizer. Since I'm already taking Cayston this month (another antibiotic nebulizer) they will prolly (yes, I always say & type prolly) deny it and we will have to fight it, etc. This is why it's hard to get lung function back after being sick. It can take so long to get the meds and treatments that we have twice as much work once we do, and sometimes its already permanently dama...

The Big Topic: (let download for video below) Lots of people in the CF community talk about being compliant with their meds. It's really important, trust me I've seen the difference. I know some CFers keep track of the number of days in a row they stay compliant, but I don't keep track exactly. Why? It upsets me too much when I miss one and have to start over. I'm very competitive (which is funny, considering I've never been in sports). But more than competitive, I'm really tough on myself.  So instead of counting days, I just do all the meds I can actually do. So since my hospitalization in January I can say I've done all the meds I could do. Why can't I do all my meds. Lots of reasons. If I'm visiting someone, one spills & I forget to bring extra. If the insurance or pharmacy hold up my refill an extra day or two (causing me to lose 1 or 2 days worth of that med). So as long as I physically have the medication I do the med. That's...

Doc appointment:   This is gonna be a quick blog post. I just got home from the Doc's and I'm super tired. So here's the update. Mid January I went into the hospital and was on IVs for 2 weeks (my pft was 48%). After the hospital/ IVs it only went up to 52%. So doc added some nebulizer antibiotics. Today I had another check-up and my lung function tests were low. Like lower 40s. So Doc had me take a couple puffs of my albuteral inhaler and retry the pulmonary tests, they went slightly up (around 49%). So pretty much the hospital & IVs didn't do anything,  and neither did the Colliston nebullizer. So what now? Well, Doc wants me to continue the Colliston & Tobi, but add a 3rd albuteral & vest per day. So that means 5 nebs, half hour vest in morning, 1 neb & half hour vest mid day, and 4 nebs & half hour vest at night.   Picture right: My night meds tonight! Also, I'm going to be going back on prednisone (20 mgs a day) for another. Meanwhille...

Shaking: I'm happy to announce I've started shaking again! That's right, my big ol' clunky vest that broke down a while ago is going away. I got my new vest delivered! I love it. It is quite a bit smaller and I can actually pick it up and move it! Check out the difference in size on the right side! The old one on the right and new one on the left! It came with a rolling duffel bag it can be kept in or travel with it. YAY! That's the best news. Since I live a couple hours away from my parents, I do tend to visit them at least once a month and I stay for at least a few days. When I had my old vest, it was obviously too big for me to take with me. So I'd go those days just using an acapella (which really isn't very effective for me). It may work for some, but I have found only manual CPT and the Vest work. My mom or sister will pound me if I ask (feel like I need it). But now I can just bring my vest with and be totally independent! I love being able to c...

  COMPLIANCE: This is a huge topic in the CF community. Lots of people (including myself) keep track of how long they have been 100% compliant (days without skipping a single pill, treatment or vest). Its such a difficult topic. Lots of studies have been done showing low numbers for compliance. I just read one the other day that a fellow CFers posted on Facebook and it got me thinking about how difficult compiance is for me. And I bet there are other CFers are there with just as difficult situations too. I'm going to give my two sense about the whole topic! A lot goes into doing meds, my daily routine, etc, so I'll fill you in. Compliance: is it important?  Why Keep Track? Um, yes. Of course it is. You are prescribed those meds and nebulizers for a reason. Try to find something to help keep you on track. I now for lots of people this is keeping record of how many days in a row they have been compliant. I know I keep track as motivation to get me to do all of my meds. ...

Craft Show & Some Bdubs!  Yesterday, was my mom's craft show. She has such cute crocheted products (Hats, Scarves, Earwarmers, Beards, Toys, Purses, etc) that I was soo excited to see how she would do selling her stuff. It was in Naperville, IL. Andrew and I met mom and dad there. It was a great day. Andrew wore one of the crocheted beards mom was selling and walked around in it. AND a couple people came by and said " Oh, this is where the beards are, I saw somebody wearing one earlier" (people love them, they sell quick too for $5).  He's such a good sport! (Here is what mom's cubicle/booth looked like.) The stacking bins really help organize stuff by size! Overall, it was a great show and so much fun! (Below is a close up of mom's Hat Bins!) Love her hats!!!    However, my stomach hurt really bad for a chunk of the morning (thanks to Colon issues: read my last post about my Colon issues here! ) We spent the day helping mom a...

On Track: I've done all my meds since last Saturday! Wow, a full week!!! Which means I have finished my 5th FULL week! I'm participating in a CF fundraising Walk and my I promised everyone that for each $100 raised I will do a full week of meds! So far we have raised $645 (online) so I have another full week of skipping NOTHING to go! I will count cash/checks when they are turned in (either before or at walk). I'm going to add that for every 5 new walkers registered I will do a full week as well! So join the walk and get four family or friends to join us too and I will do another full week! We currently have 20 members, so anyone who joins starting now will be counted! I know, I know, "you should do all your meds anyway..."   I try. But it is hard to stick to it. Late at night when I'm tired after play practice I want to just fall asleep. I don't want to stay up another hour to do meds. But knowing my family and friends have been actively getting p...

Mornings come to early. The things about mornings that drives me nuts, is it is the one single thing about CF I dislike the most. I don't mind CF most of the time. But in mornings....ugh. A night, when I'm doing therapies, I'm already getting ready for bed/in bed and I can read, do homework, etc. Not as big of a deal. But knowing when my alarm goes off at 5 or 5:30 am, just because I have an  hours worth of treatments to do, its gets old. Its not much a of a motivation to get up on time. Which is where I run into trouble. I will tell myself, "well If I didn't have to do therapies or have CF, I could of slept another hour, probably two (do to losing one during the treatmensts before beds). Then I roll over and will sleep through my morning meds. Ruh Roh, alarm goes off again. I jump out of bed. "CRAP!" I grab my therapy machine and end up only doing two of my 4 nebulizers most mornings (plus I skip my vest) and I'm doing them while blow drying ...

And All that Jaaaaaazzzzzz... It's getting close to my appointment with the Rheumatologist! Very excited to get this figured out and find the right meds! Also, right now I'm on anitbiotics ( not IV, just oral) and prednisone. My lungs have been pretty crappy lately, so hopefully this round of meds will boost them back up! My weight has been going up though, since my Boyfriend has been cooking me a lot of meals lately (ps. he is amazing cook)! Sure beats my grab a granola bar on the go meals. Also, good news! I got a new vest, foot pump, and tubes (not a new machine)... Bummer, but at least I got it fixed, so I can use it again! I got the purple vest (my favorite color)! And the cool thing is the new vests are washable! (Picture of: Me in my new purple vest, the old honking machine w/new parts, plus a picture I need to hang, a shoe rack I need to out together, and a black dress that is currently drying...haha sorry bout the mess! )The new machine would have been nice, its ...

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...

So much to do! I have been eating a lot more and I hope my weight is still climbing, but my usual 5 therapies a day (supposed to be 9) didn't happen in the last 48 hours. To be honest, I haven't done a single med since yesterday. Ugh and I can tell.  I could list a million reasons why, but bottom line I always find something else to do. Something that I can convince myself is more important, which is followed by my brain saying "its okay, I will get back on track tomorrow." I know it is normal to struggle some days (or for a few days in this case) to do them all. But it doesn't make it any better and it shouldn't become my excuse. Tomorrow I work 10:30am-2pm, I AM going to get up at 7:30 do all 4 nebulizers before work and I will do my 2 afternoon nebs between 2-3pm. I will be out of town from 3-11pm. Honestly, I probably won't don't my night meds, since I will be tired and have to work morning and evening shift friday. However, friday night I'...

Fitting CF into my life: Cystic Fibrosis won't be hard to fit into my schedule right now. As I just finished my job watching my babysitting kids for the year. I'm currently job hunting and taking classes on Mondays at the local community college (as a pre-req for Grad programs/and for fun). Mulan Jr, just ended today. We had two shows. Back-to-back performances are harder, since I had a busy day before the shows, I didn't get a chance to do my meds before the shows. Therefore, I end up bringing my therapy machine along.  Yep, sitting in the light booth and doing my meds, while watching people take their seats. [Note: I turned my therapy machine off when the house lights had to go out.] Its not that hard to fit them in. You just have to be willing to do them sometimes in unexpected places and be willing to have others find out about it. I had two people in the light booth with me, neither knew I had Cystic Fibrosis, but neither were bothered by the nebs. So bottom line...

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...

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... (...