Skip to main content

Catch Up!

I'm sorry it has been a MONTH since I blogged. I guess life got a little busy. I'm starting a clinical trial, but I can't tell you about that (signed a contract not to give details). But it is always exciting doing research. I am a BIG believer in doing what I can to try to further the Mission of finding a cure. On top of all my regular health stuff, Andrew and I have a lot of other things going on (good things). We were hoping to have it all established by now, so we can share our exciting news. Please be patient, I promise it is worth the wait. We have been attending 3 hours of classes a week and next week we have 6 hours of classes. It a lot to squeeze in when Andrew is working 80+ hours. He has been working more hours at Culvers. You may know my husband works full time at the new HyVee in our area as a manager, but he also works as a manager at the local Culvers.

To be honest, yes, we need the 2nd income. But he only has to work 10-15 hours extra.... not the 40 he is doing. But, he loves it. He really does love Culvers. Also, the extra money helps us with all the projects we have been doing at our house. (click here for more pictures/info). It's hard, but I grew up with my dad working two jobs for over a decade. So we just make sure we find a couple hours a week to watch a movie we have been wanting to see of make a nice meal together. I also stay up at night, so we can talk for 15 minutes while he is getting for bed.

Lately, I have been pretty busy too. I'm currently working with 2 clients to find a condos,  doing clinical research, keeping on top of my 4 hours of treatment a day, cleaning, cooking, grocery shopping, and even working on the house projects. We have a timeline and need to finish our home projects by the end of this month. Yipes! Plus, it is great strides season.

I'm nervous about the Princeton Walk. We haven't had any press or articles yet. I know the local paper is going to be printing one soon though. Although our overall numbers are down a bit. I'm hoping a lot of my family & friends just haven't registered and are coming (like they have the last 3 years). This is the Priceton CF Walk's 4th year! We'd love to raise over $15,000 and I'd love to have it steadily reach $20,000 a year eventually. We have raised $50,000 since 2014 so far!

Please consider sharing the facebook event (here), walk at the event, become a virtual walkers & raise money, or even donate to our event!  Sign up or donate here!



This event means a lot to me! My first year hosting it I remember that Laura was so proud! She was my motivation for hosting it. I wanted to do everything I could to make her happy, to encourage her to hold on longer,  and to help find a cure. While, Laura passed away a few months after the walk, she never was negative or felt bad for herself. She was positive right up to the end and focused on keeping me positive. While she was struggling at below 15% lung function, she was motivating me to keep jogging & work to keep my function in the 60s. She was the most selfless, loving, positive person I know. AND I made a promise to her to keep up with my effort and never stop fighting. So I will fight. Every SINGLE day. Not just for her, but for myself, and everyone else. I will live to see CF cured.

So thank you everyone who has helped us with the Princeton Walk!!! <3 It really does mean everything to me.



Comments

Popular posts from this blog

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...