Cheriz: My life with Cystic Fibrosis

I'm determined more than ever now! I had CF Clinic on Tuesday. If you didn't get to see our vlog that Andrew & I made afterwards, check it out on YouTube here ! So yes, we are pretty happy about the step up in lung function and my stable weight. It doesn't mean I can slack on meds or stop trying so hard. There is no break with Cystic Fibrosis. But a good clinic gives us hope. Andrew & I hang onto every good clinic we can. Especially since lately my health has been a yo-yo, always going up & down. I'm hoping to break that cycle and continue upward. I want to work my hardest during my nebulizer treatments. Believe it or not, even though I do them all, I get os used to them that sometimes I forget to breath them in. I put them in my mouth and start chewing the mouthpiece and breathe through my nose. I don't even realize I'm doing it. It's a horrible habit. I'm also excited it is warm out again! That means I can start walking (and trying to...

One big promise I have struggled with in past, present, and probably future is to EXERCISE! I know a lot of people struggle with the same problem, regardless is they have CF. We are too good at making excuses for ourselves. I don't have time, I don't feel good, I will start next week. I was on the right track in 2012. I was doing musicals, where I was singing or dancing every night. AND I was coming home to walk or jog almost 5x a week! I started slow and added more distance as I could. I would walk 2x a week with a friend. This is where I focused on distance & length, not speed. Then on the opposite nights, I would jog as much as I could, walk catch breath, and repeat. I had more muscle, was eating more, gaining weight, and my lung function was the highest it had ever been! 60 - 64% <--- WOW! I was single, didn't have a TV (on purpose) and kept myself accountable through my blog & friend (w CF) Laura. Since then a lot has changed. Living with another pers...

Every New Year's I post a yearly review of everything that took place. It is surprising to see how much has happened and how much of a roller coaster ride life can be. I'm ending this year with not-so-great doctor's visit with my lung function back in the 30s, but I truly believe in 2017 it will all get better. My lung function, health, and life in general. I am doing a lot of outpatient tests right now to see what it is going on in my lungs ( I had some stuff show up on my last CT scan). So in January I have another appointment to get a plan together. Whether it be an admission or home IVs, or something else. One day at a time, but for now let's look back on this year! Here is 2016: January & February Fighting Insurance for Colistin because my lung function was low, which is why I had to cancel my eye surgery. March I was the guest speaker at the Annual CF Meeting & honored to receive an award "2015 Great Strides Partner of the ...

Happy Halloween! Halloween always reminds me the fall season is ending soon and that winter is on it's way. Bringing with it the dreaded seasonal sickness... All seasons have pros and cons.  Fall season has leaves changing, trips to the Orchard, and our favorite pumpkin carving... Andrew & I started dating Halloween weekend in 2012 and every year we carve pumpkins together! This year we did Judy Jetson & Bowser! What do you think? While I love that  the winter season hosts many amazing family-filled holidays, it is also the hardest time of year for me.  Cold weather kills my lungs. I have my VogMask and tons of scarves my mother has crocheted (perk to having a crochet-crazy mama). But walking outside is still difficult. Yes, I have a treadmill. I have used it (once in a while). It's just not as fun as walking somewhere outside. So I have to push myself to stay on top of my exercise. Exercise is crucial to my health and lung function. I saw the difference w...

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...

Getting my Health Back: I was at my healthiest in 2012. I was walking every day and jogging some parts of that. I was in a musical where we had dance rehearsal at least 2x a week. And I did a 5K where I pushed the hardest I could, finishing in 42 minutes. Well, I did another 5k last Saturday (on my mom’s birthday) and power walked the entire thing finishing in 53 minutes.  ( Picture to right: Ada & I at the 5K) I knew I couldn’t jog, since my hips now like to pop out of place and it is too hard on my joints. My arthritis has gotten a lot worse in the last four years. While I know I will never will get back to level of health I had in 2012 (due to normal progression of my disease), I think looking at how I achieved that level, will help me to reach the best health I can today. I had a steady hourly job that allowed me to schedule out my day. Routine is what has always worked best for me, which is why I struggled in college and with jobs where hours changed a lot. In...

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh...

My Big Doc Appointment: Okay, there is a lot to tell. So let's start with my working out & calorie counting. I know that sounds weird, but I forget to eat sometimes and like low calorie food. I don't care for greasy foods, sweets, or eating out. I'd rather have pickles, grapefruit, baked fish, and veggies at home.. Hence my problem. Low cal foods. So I count my calories. I have an app on my phone that helps me keep track and it subtracts what I have eaten from my goal. I set a goal at 3,000 a day. While I don't always make it to my goal, it sure beats the typical 800 calorie days I used to typically have... I also have been walking (with some jogging bits here and there) every single day my legs permit me. So since the 22nd I have done this for all except 2 days (where my legs were too sore). Those were my resting days. The last 3 days I have done a whole mile and I keep shaving time off. Today's mile was 15 minutes!!! Picture: As soon as we got home from...

 Who Doesn't LOVE the Summer: Summer is very much welcomed in our house! Andrew has more time off in the summer. I'm excited he graduates from college this December! Since the Fall of 2013 he has worked full-time while going to school full-time (35-45 hours at work & 12-15 credits per semester). This fall will be a little easier, he only has 2 classes & his Capstone Paper/project. However, he has been working on that this summer so he's ahead of the game. I've been enjoying spending more time with him this summer. Last night we walked down to the lake and had a picnic dinner. Had to find a shady spot so I didn't get sunburnt, I burn fairly fast from daily antibiotics & fair skin. We got to use one of our wedding shower presents. My mom got us a lawn blanket that zips up, along with the shadowbox, and other items. We love to going to the band concerts & activities in the park. So the lawn blanket will get lots of use. We packed it all up in a pic...

My Much Needed Health Rehab: As you know, I've had a lot of health issues in the last year. Liver being elevated, pancreas not working as well, which resulted with me now being on a permanent low-fat, therefore, low-cal diet. So of course, I'm losing weight. But also, I'm struggling breathing wise more. My lung function has been fluctuating between 48-60 since 2012. However, I've have really struggled since last year to keep it at mid 50s. I didn't respond to IV antibiotics in Jan-March this year. I'm now currently at low 50s. Which would be okay, if I couldn't tell the difference it has made on my body. Because of my lower lung function and energy, I haven't been able to do simple things like carry laundry or groceries.  As I've talked about in a previous blog here , I'm wanting to get back to my 60% lung function, 110 lb self, the girl that had energy to work part time, do theatre at night, and still come home to jog 1 mile before bed. I w...

My Lungs Getting a Workout: Since it's been over a week since my last post, let me give you a quick update before I get to the main topic of this morning's post. Okay, so my diet is working. I'm still sad I forever have to say goodbye to sooo many amazing foods. BUT, I'm sooo happy. I'm having barely any (almost zero) issues anymore. Whew. Dear Pancreas why did you have to go and fail on me? But I guess it's really good that it's working. I'm getting out and learning the real estate market in the area and prepping for my state exam, which I'm taking on Andrew's day off next week :-) As you may have read on my Facebook or twitter page ... had some car issues so I didn't make it to the Doc's on Wed. We gotta take Andrew's car in and get some $400 thing fixed, because it's unsafe to drive. Waiting for his next day off to do that. So in the meantime he's been using my car, which is a little problematic for this week. LOL. But...

One day at a Time:  So I can finally say I'm not sick anymore (yay!!), I've been feeling better each day. So I was super happy I got to keep this weekend's plans (even though it was a simpler weekend than last one). I was very bummed I had to cancel my 30th Birthday party & Easter Plans, but that's part of CF. You never know when you will get sick. (if you have no clue what I'm talking about read this past post ) I'm pretty sure I've spent every single holiday in the hospital at some point. Easter (twice), my Birthday, Christmas, Halloween, Valentines Day... Hmmmm. Maybe I've never been in the hospital during Thanksgiving. But it's just part of having CF, you can't help when you get sick.  I'm sooo glad I started feeling better this week! Because yesterday was the Dekalb Great Strides Walk! This is one of the 6 walks my team does throughout the year. Why do more than 1? Because not all my family & friends live near one location,...

It Gives Ya Hope: Hope, what? I'm never not full of HOPE right?  No, I always have hope, even when I don't think I do, Sometimes all you need is a reboot, being around family or friends, or just certain conversations. I came home (to my hometown/ parent's house) this weekend. Yes, I call Princeton, home still. But in my defense, I also call my current apartment my home too... I was excited to come visit! My sister, dad, mom, and I don't all get together as much as we would like to. Sadly, Andrew didn't get to come with me, he had to work all weekend. He's saving his time off for 1: our wedding (this August) and 2: any future medical mishaps I have (where he has to take off work) AND you never know with me. So he was bummed to not be able to visit, but Mom, Dad and I skyped with him last night. hahaha. It was hilarious. Mom sitting in front of the computer in her armchair and me and dad stooped over to get our heads into the camera view. Haha. Ada was ev...

Long Day at Clinic: I had my regular Clinic appointment and I went through screening for another clinical trial! I've done two other trials in the last year and a half. Feel free to  Read about them HERE!  I really enjoy doing them! So I'm going to Dr. B's (Chicago's Cystic Fibrosis Institute's) Research Seminar on Sunday. Not only is it 3 hours of lecture about al the old and new trials, but outcomes and implications for us for the future! I love that he is honest, he tells the negative with the positive. Plus, its an amazing restuarant with a beautiful buffet. Shrimp cocktail, omeletes made to order, and even an amazing 3 tier chocolate fountain. I'll probably be a little tired for it, considering I'll be getting home late the night before from a Hockey Game! I was a little nervous about today too, because my lungs have been low the last couple visits. But I was excited to do the screening for the new trial (Inhaled Mannitol vs placebo). My appointment...

Don't Forget To Fight: I'm not the toughest person, but I'd say my Cystic Fibrosis has done a great job of toughing me up. I mean that in a good way. I have endured a lot of needles, surgeries, pain, doctors, and more. But because of these experiences (some I'd call traumatizing) have made me realize that I can face anything. I'm not afraid to work hard for what I want and I know how to deal with anything life might throw at me. Well right now, life is pretty good. I haven't been on IVs at all this year, only in the hospital for 1 night (for my stomach tube surgery) AND (other than post surgery weight loss) my weight has been stable and slightly increasing ( very slowly). Overall, it has been a pretty stable year. Granted I couldn't work a lot of the year do to my stomach hole leaking issues, then the surgery, plus I've had some weeks where my intestines were acting up (tiny blockages, etc). Still this is a big improvement from 2013 (Here's a rev...