Sunday, September 21, 2014

My Future & Family Wknd

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 About What Happened w/ Grad School Here!) and I ended up in the hospital a LOT. I had to withdraw and I kinda have come to realize over the last year that I can't keep up with doing school full time. Its too much anymore for me to get through a whole Grad 2 year progarm it would take me probably 5 years part time. I don't want to dedicate that much more time to school (for a degree I'm gonna use only part time). Especially when I have always wanted my real estate license (and for it to be my main focus). I've been designing houses on graph paper and going to open houses for fun since I was 8 years old. I started taking real estate classes 2 years ago, but I got sick and had to withdraw. 2013 was a really rocky year medically. However, I'm finishing up real estates classes this December and I'm doing great. I'm completely recovered from my cold and I'm doing amazing in my classes! I can't wait to get licensed and start working. As an independent Contractor (Real Estate Broker) I can work from my home and not have to compromise my health for a job or school anymore! And I can't wait! I can still do work with non-profits and help them with PR and Media! I love planning the events and helping to update the groups' online publicity. However, its not going to be my career. Real Estate will be.

So only going to classes and being bored that last couple months put me into a funk. Just a pure boredom, what am I going to do today, ugh guess I'll watch a movie kinda funk. And I love movies, but seriously I needed to go somewhere or do something. So Andrew told me to go visit my family!

So this weekend...
I got to Princeton Friday around lunch time and I spent the day with mom. We ate up town (even got balckberry pie from favorite pie place). Then we did some main street window shopping. We worked on a "artsy project" with photography I'm doing for someone. I can't say more they prolly will read my blog in the next day or so. Then Friday Night I got to go out with my girls. A couple of my girlfriends had to work, but a handful of us went out to eat and caught up! I have 6 of my really good friends that still live in my hometown, and it was AMAZING just gabbing away all night.


Saturday I drove from Princeton to a Orchard between my hometown and where my
sister lives. She lives an hour further away. So we met at the Orchard. We ate a lot of samples, apple picked, got some cider donuts, and carmel apples. I love Tanners Orchard, we went there a lot as a kid. I mean a lot. More than the average family from Princeton (Tanners is 40 mins away). We stopped at it on our way home from Peoria (where I went for CF doc and every time I was in the hospital as a kid). So Tanners is very nostalgic to me.

I thought it would be colder out, so my long sleeves and skinny jeans really made me uncomfortably hot in the fields picking apples and I prefer picking blueberries. But it was a great trip, love it every time!

  Pic on right: Me picking apples, boy was it sunny and hot out! 

We spent the whole day saturday just chatting on her couch and we watched a movie later that evening. We went to her church (She teaches at that private school) on Sunday and then ate a delcious local cafe for brunch, before I headed back to Princeton. I got to hangout with my parents and my friend Sarah once I was back in my hometown! Sarah came over for a little on Sunday because she had to work that night we all went out. So I was glad we could still hangout. Then mom made homemade mostaccioli for dinner before I had to get on the road again for the final 1.5 hour drive home!!! I ate sooo much that I'm sure it will help with my weight gaining. I'm down to 101 from 108 lbs from my stomach tube hole leaking. If I fall below triple digits I will cry. I haven't been below them in a year and never want to go back there!

So here I am at home currently. and whew after all that driving I'm a lil tuckered out. But, here are a couple of exciting things before I call it a night.


First, it was cool be able to bring my vest with and use it somewhere other than home! Remember I got a new smaller edition that can travel in a duffel with rolly wheels :-) Check out the post showing the difference in the two vest models. Read "Shake, Shake, Shake" here!

Pic left: Check it- me doing my vest at my parent's house!!!

and secondly, I have a PRE-SURGICAL appointment made for this Friday 10:30 to see my surgeon to schedule a time to fix my stomach tube hole! YAY! So ready for this. Not about the surgery itself, but for the "being fixed and it dones with" part. Can't wait! I'll keep you all posted!

Oh and my friend Amanda gets married this coming up Saturday! The Wedding is in the Wisconsin Dells, so Andrew and I are making a mini-vacation out of it. Our first wknd trip together (other than visiting  friends, etc)!!! Can't wait! And Amanda and Jake's Wedding is going to be a blast and beautiful!    and yes I will be rolling my vest along with me :-)

Monday, September 15, 2014

Blog Around the World

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 are a frequent reader on my blog you'll learn something new about me through this post! If you are new, then welcome, and I hope you can learn a little about me, feel free to browse around.

Now my blog isn't primarly a crafting blog, I don't blog about products I make, but more of what my daily life is like and how my cystic fibrosis affects me. So I'll re-adjust these ?s to fit me and my blog better.

so 1.) What am I working on? 
 Currently, I'm finishing up my broker's licensing courses for my real estate license. I'm currently making new art work for the new apartment (see Pic on right). If you read my last couple blog posts (below) you know I'm healing (from my stomach tube taken out) and getting over a cold/infection. But in a bigger picture, I guess you could say I'm always working on fundraising and raising awareness about Cystic Fibrosis. By clicking the links/pages above on my blog, you can learn about me & my cf, and the CF events I attend, and the CF2 team (which consists of everyone I know that wants to raise money for CF with me at events). I've also starting thinking about Next Year's Princeton Cystic Fibrosis Walk. Click here to read about the Walk I created & organized last year! I've been attending Cf walks around IL for the last few years, but last year I decided to start my own walk for CF in my hometown. I'm proud to announce my small hometown of 7,600 people raised over $13,400 for the CF foundation. So I'm already brainstorming on what to do for next year! I'm also starting to work out more, because I want to do the CF Climb (climb over 59 flights) for CF in November. My boyfriend, Andrew did it last year. But this year, my friend Ryan and I want to join him. But I need to get my booty in shape! So that's my life. Classes, health, work out, fundraise, blogging, oh and I'm helping my mom with craft shows! :-) I've been going with her to most of them. I made her some business cards. I love it! I can't crochet like mom or quilt like Kym, but I do minimal crafting like ornaments, wall art, and some recipes, etc. Checking out some of these Pin-Challenge posts here: yummy snacks & ornaments!

2.) How does my work differ from others in the same genre?
Well, people in the same genre would probably be other CFers. We all differ medically, since there are thousands of mutations and any two of those mutations together creates a diagnosis of CF. We may have similarities such as having CF, blogging, or wanting to raise money. But the way we live our lives differs. I try to make sure to make the most of my fundraising and live a positive life. I try to use my talents and connections to help the CF community. I always like to look at my life half full and try to share the ins and outs of my life to others. I hope this helps others with or without CF to see what it is like to walk in my shoes. Hoping people with CF can see how I cope and learn from that, and for people without CF can understand what our disease controls in our lives.

3.) Why do I blog?
I started blogging in Feb 2012. I had graduated from U of I and moved back to my hometown. I found out shortly after moving home a CF friend (from childhood) was going to need to be listed for transplant in the next year or so (depending on how her health was doing). I got very involved in CF events in 2012 and started my first TEAM! I did Stand Up Comedy about my Cystic Fibrosis and realized I could share about my CF! Some of my family and friends convinced me it would be interesting to read about. I don't know, to me it's just my life, but hopefully to my readers it is interesting. I blog for awareness and to give peer support to other CFers. To really understand why I blog then read this post: Importance of online peer support among CFers!, And if anyone has any opinions or suggestions for my blog let me know!

4.) How does my process work?
I try to blog at least once a week. I like to keep everyone updated. I always post after big events (Clinical Trials, Clinics, Surgeries, when sick or issues arise) or anytime I feel I have anything worth while to share. I just write it as I would speak it to a friend. I re-read my blog a couple times to make sure it makes sense and I try to add links or pictures. And Tah-Dah my blog posts!

Alright, time to tell you about my weekend!  I won two free tickets to the 8th Annual Chicago FestivAle: A Celebration of Beer. Pic: Andrew and I at the event!  I won these tickets in June, in a competition to see who could sign the most people up for a CF Great Strides Walk. Finally, the FestivAle was Friday! I don't really drink a lot. I have a drink at a wedding or on New Years, but that's pretty much it. I figure I have enough medical problems and was born with a bad liver...why push my luck? So I only tried a few at the FestivAle. But, it was still really fun! There was live music and I loved the band they had playing. And there were over 60 different types of beer and tons of food from catering companies! Pic left: One of the brewingcompanes had a pour spout built into a robot structure, so
it was pretty cool too!  I stuffed my face with all the food and tasted a few of the sample of beer that Andrew tried. I loved the semi-sweet Cider and the Banana Ale the most!  There were a ton of silent auctions and raffle prizes. Andrew and I practically went gah-gah over a couple of the dinner/theatre date night packages. We will have to remember those for next year to bid on!

Even though I was just starting to get over my cold and I was still healing (my stomach tube hole), I had to go to the event. I had been waiting for months! And even though I didn't really drink, I still loved it! And Andrew and I are planning on going next year too!

To check out all the CF Events the foundation holds go to www.cff.org

And for this week, I'm still resting up and gotta give the surgeon a call to see why I'm not healing. Doc wants me to schedule a surgery to get it sewn shut, so I'll keep you posted! Also, this weekend I'll be going to visit my sister for the weekend! I can't wait!


Oh and lastly, I'd like to nominate my next three bloggers. Feel free to continue to link others (and/or share your story with us).  Here are 3 nominees:

1.)  Lara: Walking for Air. She blogs about her adventures that raise money for CF (inspired by a friend). I first met Lara when she asked me to GuestBlog on her Blog in 2012. Please take the time to see what she has accomplished (including climbing Mt. Kilimanjaro) and she has traveled, and why she raises money for CF!

2.)  Colleen: Live*Laugh*Love*Breathe*. Colleen has CF too and she blogs about her journey with CF too. We actually met online through blogging and became friends over time. (Just shows the power of blogging). She's taken Kalydeco, been active in CF Fundraising, and just had a little baby girl! Stop by and see about the amazing life events that she has been through in the last few years!

3.) Peggy: Handmade by Peggy K: Crochet & Sewing: Peggy makes all types of creations with crocheting and sewing. She attends lots of craft shows and sells product on Etsy. This is her website/blog (which has been newly updated) where she discusses her work and why she loves it! She is so talented, you'll want to see all her scarves, toys, hats and purses!






Wednesday, September 10, 2014

Sick Update

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 if I'm getting the real drug". But I gotta remember that we get sick and 6 months is a long trial and things happen. They take all that into account. So phew. I love this trial. In fact, even though I'm sick, I'm already starting to feel better. I only have been doing Tobi nebulizers and oral cipro antibiotic pills for 3 days now. I've been sick for 5 and usually it lasts a lot longer and I end up needing IV infusions to battle. So hoping this is a quick turn around!

My immune system may suck and I catch everything, but at least right now my body is fighting this without IVs. Cipro is pretty heavy duty stuff though and inhaling Tobi for the first time in almost 2 months is really making a difference.

ONLY downside is the Cipro. I'm very allergic to 3 of the main antibiotics that they use to fight psudeo (psudeomonas aeruginosa) infections in CFers. Keflex, Levaquin, Bactrum. Yep so pretty much every big antibiotic they use to fight I can't take. So I take Cipro which is related to Levaquin, but I can tolerate it. I've had some minor problems in the past. 1 time I had a small rash for a few days. This time I'm getting headaches. And the headaches suck!!!!

But I can stick it out for a while until my lungs are better. I can tell the Cipro is working, I just gotta deal with the headaches until I'm better. 23 more days (hopefully once I'm better we can discuss stopping the med early). I'm not ready to call Cipro quits and have to find a new way to treat the infections, because honestly I'm limited with what the docs have left that they can do without those antibiotics. And who wants to exhaust all their options (I'm only 29).

So I apologize ahead of time to everyone I'm not very responsive to, my lack of communication, and everything else. I'm trying to get better, keep up with my meds, my homework/classes, and deal with some headaches. But I'm doing it without the hospital and that's the main thing.

Pic: Is from last time I was in the hospital in 2013 (November). Andrew's always right there for me, love him!

So a big thank you to Andrew! Who not only works full time, goes to school full time, but has been doing all the errands for me and taking care of me. In the last 2 years we have been together, he has dealt with so much. Actually (click here to see what he's gone through), I posted a year in reveiw with pictures and it shows the best and worst that we went through last year! He nevers gets upset, he just always wants to help me. He is simply amazing and I'm so lucky!

So I'll keep y'all posted on how I'm doing and keep those fingers crossed my allergic reactions don't get worse and I continue to improve!