Cheriz: My life with Cystic Fibrosis

Doing What I Can: People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that".... Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment ) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here ) & I'm keeping my Food Journal for him to look at. Here's how that is going: Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I...

Planning a Wedding: I discussed a few other issues with wedding planning & getting married that pertained to Cystic Fibrosis. A MAJOR one being insurance coverage. I still can't wrap my head around the fact some people can't get married solely because of medical coverage. I wrote about that topic & biggest concerns right here . Other issues are much smaller. Things like "can I fit my therapies & vest treatments in the day of the wedding" or "we need to plan to keep my enzymes at the head table, so I don't forget them" and then thinking about packing & traveling for the honeymoon with CF is a whole other can of worms. We are going on a small mini-moon. Andrew can't get off too much time from work, traveling is hard on me, and after we pay for our wedding we would rather save for a home, future kids, or other bigger things in our life. So there are many little details to think about with Cystic Fibrosis. This weekend we are doi...

Back to GI Office: As you know I went to the GI doctor's little over a week ago and had a horrible experience. It was just the worst doctor I have EVER had and considering my MANY medical problems that's saying something. If you didn't read about why I went to the GI or how that office visit went (check it out right HERE ). Mom went with me again, we had lunch and got to spend the day visiting. I always like to take someone with me, so I super happy she could come with me! Luckily, this doctor was AMAZING. Which Doc B said he would be. Let's call this new, nice, smart doctor (Doc K). I explained all the pain and bathroom issues, etc. Here is what he suggested for our plan of action. First, rule out food allergies & intolerance issues, and get a blood test for Celliacs (just to cover our bases). If diet and food changes don't help, then time for Upper & lower endoscopy with biopsy of tissue. So here is the game plan: Get the blood test for Celliacs ...

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...

In My Future Will I Struggle to Breathe: Doc always says feeling great is more important than numbers. However, he knows I tend to get hung up on them. I mean the numbers are measurements, well essentially of my life (quality & years). They hold more power than they should (in my mind). Those numbers determine whether we need supplemental oxygen at night or during the day. A lot of people with CF (who I still call CFers, even though it's not PC) need oxygen full time until they are considered (or denied) for a Double Lung Transplant. CFers: Sorry, but it's sooo much shorter than "people with CF" and I (personally) do identify mainly as a CFer. Its does affect almost every aspect of my life, but I don't let it solely define who I am, I promise. Picture Right:  Me at Doc's today, before Doc came in. I guess I've been a little freaked out lately. I have never NOT RESPONDED to IVs before. (Read about my 6 month struggle/ updated post HERE) . My ...

Time Flies: I've been blogging about all these separate things I have going on in my life. My lung function drop, the hospital stay, my stomach/ GI issues, the surgery, the Princeton IL CF walk, my fight with insurance for my Cayston medication/machine, and soooo much more. So here's a bit of a catch up for everyone! Let me start at the very beginning: read my CF history in this brief post here . Now let's skip ahead to the last 6 months. From September 2014 - Feb 2015 I lost 3 CF friends ( it was really tough). In September my best friend with CF (from childhood & on) passed away from CF. I wrote a post about her journey, love for life, and how she was (& is) my inspiration to fund raise (read about Laura's Journey here ). Then in October I got my G-tube taken out/ fistula fixed and removed. YAY YAY YAY! The abdominal surgery was my 15th surgery, so I recovered pretty quickly. I'm beyond thrilled to say after 15 YEARS with a G-tube and needing to u...

In Shock from the Doctor: Let me start by saying I LOVE DOCTORS. I'm not being sarcastic, I'm sincere. I have an amazing Cystic Fibrosis Doctor, I had a great GP growing up, Amazing CF Pediatrician,  great eye doctor, Cerebral Palsy Specialist, etc. Seriously, I've never had much complaint! I had a doctor in the past that was a lil apathetic about treating my CF,, he wasn't as aggressive as I wanted. He was a good doc, but not right fit for me. For example: That Doctor would tell me I was doing a great job, my lung function was good enough for my age, and keep it up. My CF Doc now (Doc B), tells me how great I'm doing, but also encourages me to jog and exercise. He emphasizes the extra stuff I can do to REALLY help me make the most impact! I love that and respect that. I feel he won't let me slide and get away with missing meds or slacking off, which is what I want! Aw, Me and Mom so happy to be at the GI and excited to solve this issue. Little did we know.....

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...