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Showing posts from June, 2014

CF WALK RESULTS!

Cystic Fibrosis Walk on June 28th: Princeton Great Strides CF Walk  June 28th  8:45 am - 11:30 am Zearing Park , Princeton IL  OVER 120 people RAISED $13,400 that day for CF research!  Next year's Tentative date: June 27th (2015) *More info and pictures can be found on our Facebook page :  "like" our page here! The day went so well, I couldn't believe it. No major problems, everything was smooth sailing. We got everything set up and as people started to show up, we had raffles, face painting, and music for them to enjoy (along with granola bars / gatorade/ water for a light snack). I'm glad we made check-in/Registration an hour long. It took every minute of that to get all 120 people signed in and donations gathered. My sister, Mom, and Best friend did the registration table for me! I think they did a great job and I have told my sister she has complete control over registration next year- because she was amazing!!!! Kudos to my volunteers an

Amazing, Terrific,Yet Disbelieving News!

The NEWS! I had another appointment today at 9:30. I came back last night on the train to go to it. I've been really looking forward to this day for a while. I've had a lot of setbacks with surgeries and procedures in the past. So I was really nervous that my Surgen. Doc C. would push the stomach tube removal surgery back a few weeks. My plan was to get it out first week of July. I've had the stomach tube in since 1997 ( Read all about my Stomach Journey Here) . Needless to say, I was super excited to talk to the surgeon about getting it out. I know some patients in the past just had them taken out and their holes closed up quickly on their own. However, this thought freaked me out whenever it entered my mind. I've had my g-tube in for 15 years, so sewing it shut will be my only option right? Wrong... Cuz guess what happened today??? My surgeon took out my G-tube... Here is me right afterwards in the car. Don't worry I didn't post a picture of the actual

Flip Flops, Family, and Sunshine

Picnic Time: This saturday was my family picnic at City County Park! It was sooo much fun. We had over 30 people show up, which was amazing! It had been years since we did a family picnic. We used to do multiple park days a summer, but that was before Grammer (my grandma) passed away in 2010. It's crazy, we went this long. Usually she was the one who'd bring it up and then we'd plan and it was always a good time. Well, since she passed away I just think nobody thought about it. We do still do weekly family lunches, but hadn't done any family park days. Here is a picture of a few of us from one of the picnics from about 10 years ago.. Grammer is in the middle, and yes I'm wearing a 4th of July swim suit and bandana... But just focus on the adorable lil cousin, that I'm holding :-) She's 14 now... wow, time has flown by... I love how close my whole family is. I could show up to any cousin, aunt or uncles and walk in without knocking, at any time ( night

Last CLINICAL Trial Appt & Health Update!

Clinical Trial and My Clinic: So much to tell about today's doctor visit. I had my last clinical trial today! I started this trial in November and since then it has really helped me remain consistant with my medications. As a Pyschology major (and favorite class was my research statistics course)... Soooo yes, I'm a major nerd that loves experiments and crunching numbers to prove points...Therefore, I can't mess with data. So if Doc wants to keep me consistant with meds then enroll me in a trial. I refuse to mess up data for the well being of other CFers. So doing this trial really helped me keep on tops of all my medications. And guess what!! Even though this one ended today, I'm starting another trial in two weeks! It's with a new drug/antitbody that is suppossed to help keep the Psuedomonas Aeruginosa under control. I don't want to say much, but I hope I get the exprimental drug opposed to placebo. I really want to see if it makes a difference, I'm e

Moving Day is Right Around the Corner

Moving, Again. YEP!  I know, I just moved to the Chicago burbs last summer, however, I'm moving again. Andrew and I will both be moving to the Dekalb/Sycamore Area. I just got called the other day that the apartment I applied for/ was on a waiting list for.... IS officially ours :-) I can't wait to sign for it! It's 2 bedroom and 2 bath, with a lakeveiw from the patio and a gym included. Having a gym will really help me. I want to work on adding some muscles to my tiny arms and work on my lung function. When I was diligent with jogging/ working out, I really did have a better health. So I need to get back into the habbit again. I know, everyone thinks that about themsevles usually... We always say "Oh, my resolution will be to work out more..." But having Cystic Fibrosis, really does make it extra important. And for so many reasons. The biggest reason is obviously lung function. I currently have 55% and I need to work my lungs to bring it up!  And help clea