Cheriz: My life with Cystic Fibrosis

Pre-Op Appt:  I had my consultation with Doc C. (my surgeon). Yep, Doc B ( my CF Doc) and I were right. I need surgery. Oh, boy! (sarcastic voice) But, it could be worse. I could still need a G-tube. Let's catch ya up if you are new or don't know the details.  Here is the 3 link journey through my life with a stomach tube! First: Why I got it and I how I feel about it:  "Tu-be or not Tu-be" Secondly , The day I got it out:  "Amazing, Terrifying,& Disbelieving News" Lastly , my problems once it is out:  "Healing & Fighting" which led to this surgery & post... You may be a frequent reader and have read them, but just in case the links will fill you in! Okay, so what's the problem? Why do I have to have the surgery. Well, #1 I've lost lots of weight since it came out.  I'm a 100.0 lbs (almost below triple digits). I worked soo hard in college to get into the 100s, I think I will cry if I drop to the 90s. I'm bu...

Laura and I : (let this download a lil, video at bottom) This is the hardest Blog I have ever written. I woke up this morning and I found out my beautiful best friend Laura passed away last night. I started crying so hard I gave myself an asthma attack. I couldn't and still can't comprehend this. She was struggling a lot over the last year and especially last 6 months. But in the last few weeks since moving back home to Illinois she seemed to be getting some of her steam back. She kept fighting pneumonia and lung infections that wouldn't go away, but she was starting to be able to eat more and even doing more walking. She even climbed a flight of stairs. I really believed that Laura would battle through for a few more months until she could be listed for a Transplant. I never knew whether she'd get one, but I think I always believed she would. I couldn't bare the thought she wouldn't be able to get one. Transplants are so difficult. You have to meet the cr...

Missin My Family: I've been living in my current apt for almost 2 months. I love the area, the festivals, the small hometown feel. I've always been a small town girl. I like visitng bigger & busier places; but I can't deal with traffic everyday. Living in Chicago Area was difficult. My docs office was only 9 miles away, but took 40 minutes to get there. Back in my hometown I could go 9 miles in 9-12 minutes. CRAZY. I just couldn't handle it. So the move here was very welcomed. BUT, I don't know anyone around here. I'm still not able to work due to my stomach tube hole not being healed. It stills leaks and I have problems with it a lot. Which is okay, I've dealt with medical problems before. However, I can't work and I'm in a new town. Which means a lot of me sitting at home bored. I'm taking real estate classes two days a week, but that's not enough. Why and I doing classes? Well, I went to Graduate School in the fall of 2013 ( Read ...

Linking Blogs Around the World: Last week I was contacted by my friend Kymberly at  Peas in a Pod Creations  to participate in the Blog Around the World Posts.   Pic: Me, Kym (the Bride), and here sister, Stephanie!   While Kymberly doesn't have Cystic Fibosis, her blog is an outlet for her beautiful quilts and other sewn, knitted, or quilted projects. Kym and I not only were best friends in high school, but we were next door neighbors. (like she said in her blog post) We lived exactly 18.7 feet from each other and some summers we spent literally the whole day 9am-9pm together hanging out! So of course I was thrilled for her to invite me to do this posting challenge.This is a great way for bloggers, like myself, to share our favorite blogger pages that we visit. Here are the ?s that came along with the post. What am I working on? How does my work differ from others in the same genre? Why do I create/Write? How does my writting process work? Hopefully, if you a...

Just a Lil Update: If you haven't read my last blog, you may want to do that so you know what I'm talking about ( read it here!) .  As you know I had a lot going on last week with the clinical trial, picnic, and then getting sick. Monday I called Doc and got some oral antibiotics prescribed. I'm now on (month's worth of) Cipro and doing a two week round of inhaled (neb) Tobi. As you know I've always done Tobi my whole life on and off every other month switching it out for Cayston. Since doing this clinical trial a month and half ago I've been off antiobitic nebs to test the effectiveness of the new drug. Now, it just so happens I had been doing great since off the nebs. Even on Thursday of last week I had a high lung function that hasn't dropped at all soince been taking off the nebs. But unfortunately, I caught something over the weekend and got sick. Of course the first thing that comes to my mind is "Oh no, I hope this doesn't hurt the trial...

Clinical Trial & Uh-Ohs: A lot happened this weekend. Thursday was my clinical trial and yay!!!!! my lung function was still same. It's 55% by Docs standards, but by the trial standard it would be considered 60 still. So don't freak out and think my lung function has dropped since I wrote the Blog Post  Welcome to the 60s (read it here) . So that's good news. In 2010, I was struggling in the high 30s and low 40s. Then in 2011 I switched to Doc B, also I was done with school. I had more time to focus on meds and exercise. My extra effort and my proactive doc brought my lungs up to 58  in 2011. And Thursday I was happy to see it at the same place. No decrease in 3 years!!!!! However, I've gotten into the mid 60s before. But that was only after hospitalizations and IV treatments. Well, in the last year I have been enrolling in a couple clinical trials. Most trials are 6 months long. I'm  currently in one now. Its a 3rd phase trial and the 2nd phase trials show...