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Showing posts from February, 2014

Tis the Season!

What Season? Great Strides Season!!!! The Cystic Fibrosis Walks have started for the year! Each year I choose which events I will attend way in advance, so if any family or friends want to join me they are more than welcome!  This year I'm doing:  C hampaign- May 3rd Naperville, May 17th PRINCETON- that's right we are having one!!! June 28th Peoria Heights- October 4th I'm doing multiple cities, because I have friends and family in these areas. So please consider doing a walk if it is near you! Contact me with any questions! Also read below to really understand why I love these walks!!!! Why walk at a Great Strides Walk? 1.) It will make me smile... Okay, seriously: 1.) Shows people we are fighting for CF and helps raise awareness! Lots of people still don't know what Cystic Fibrosis is! 2.) the money raised goes towards research for a cure! In fact: New research is being done and approved everyday! Just this week the Cystic Fibrosis Foundation poste

Spoons: Walk in My Shoes!

A Way To Explain It a Little Bit Better:    A few nights ago a friend sent me a link to an article and told me to see what I thought, she thought I might be able to relate. And, she was right. It didn't fit perfectly, considering the theory is based off of someone with Lupus, but I still rings true for me. Let me explain a bit further. Also, feel free to read the original article that describes what it is actually like living with a disease, disability, etc in a way that makes it relate-able :  Article About Spoon Theory! In the article she discusses how she explains to her friends what it is like to live with Lupus using spoons. Her friend is curious to really understand what it feels like. So she hands her friend a bunch of spoons and tells her to go through the actions of her day, but to keep in mind she only has a certain amount of spoons before her energy is gone and needs to make good decisions on how to spend her spoons. And remember you never know when you may need that

Tu-be or Not Tu-be?

   Good News: Maybe No Tube : If you are debating on whether to get a stomach tube and you read this post (or for that matter my past posts on my Stomach Tube) do not be discouraged from getting it! My past posts about my stomach tube & feedings are all  posted here!  Let me start by saying I had my tube put in the summer before 7th grade in 1997. I did have quite a few issues at first, and of and on over the years. However, I will NEVER regret my decision. That's right my decision. Mom and Dad had my doctor tell me all about it and leave it up to me. I wanted to grow and gain weight, I wanted to have energy. I loved dancing but at 4'7 and 40 pounds in 7th I had trouble keeping up with energy. Then I had the tube put in and started getting an extra 1,000 calories at night! Within the following year I weighed 90 lbs and gained a couple inches! I even had the energy to try-out for the pom squad! I made the squad my 8th grade year and shockingly never got run down! Dance cla

2nd Anniversary of Blogging (see how I've changed)!

  2nd Anniversary of Blogging! First of all, 2 years wow. Time flies. I remember when I first started blogging in 2012! I had moved back to my hometown after graduating from the University of Illinois and was deciding what to do next. Here's the first page of my blog entries  Beginning 4 Blogs ! As you will see when I first started I didn't write as much, probably because I wasn't sure what exactly to say. I may not always have the most "on edge" topics to discuss, but I am always comfortable sharing my voice online now. It's interesting how much my life has changed since the beginning and exactly the amount Cystic Fibrosis influenced the path I took. So I'm going to take this time to explain the last two year journey of my life and how CF has impacted it! 2 years ago... Starting with first Blog ever: I was living in Princeton, my hometown, after receiving my bachelors degree and was trying to figure out what job was best for me. I was a before schoo

Managing Work and Life

  Work and Life: A Sweet Balance:        I'm sooo excited to say I finally am back on the schedule at work. After all my hospitalizations in October and Gastrointestinal issues in November and December, I finally starting getting everything back to "normal- non-sick life." I started to feel better around Christmas and was all set that I was going to go back the first week of January, but my lung function was still down and I had to go on another round of antibiotics ( luckily, oral and NOT IVs this time). I finally finished my antibiotics and my lung function is back in the mid 50s. I'm still not happy with where it is at, considering I was at 64% in October, but I'm going to keep working at it. However, I'm done with meds, feeling quite a lot better, and I'm so excited to go back to work. I feel very fortunate. Fortunate that :        1.) During the last 2 months while dealing with GI issues that I didn't have to worry about working, getting lung

We Need Lungs and We Need Them Now!

Fighting For Lungs:   I know many of you are following my blogs about my best friend Laura. If you haven't read my past blogs about Laura's struggle you can read them here:  First Blog: The Reality- Beginning of Laura's Fight  and  2nd Blog: The Big Fight- Trying to get a Transplant Before it's Too Late . These two past blogs will catch you up on the situation and help you to understand the hardships Cystic Fibrosis patients go through. Especially the transplant journey, which is full of procedures, exams, doctor's appointments. And that is pre and post transplant (tx). Transplants take time, dedication, and lots of hard work! Which I know Laura can do!   ( Picture: Laura doing her nebs yesterday!) However, transplant evaluation is a long process. You can't be considered until you reach a low enough lung function, but then like in Laura's case a couple of bad lung infections over just a few months dropped her lung function to 18% and she continually dec

My Pin Challenge for January! (Pin #2)

  January Pinterest Challenge:  Remember that I said each month ( Read About My Pinterest Challange HERE) I would try a Pin from one of my Pinterest Boards! Well, I'd like to share the Snowman Ornament Pin and the frosted Wine Glass Pin!! I made these for a couple friends this year for Christmas. I have a couple friends that I trade ornaments with and I'm already planning mine for next year! And I gave wine glasses to a couple friends as well. Both worked out really cute! They were simple pin to do! I changed a couple things, just to make it cheaper and for my own personal taste. Here are the Pins I tried out: FROSTED WINE GLASSES I took some pictures to help show how I re-created the look of both. First I will show the steps for the wine glass.. First of all, buy a wine glass (Dollar Store has them for $1 or buy bulk at Wal-mart, etc). You will need rubber bands ($1-dollar store) and frost spray ($7 at Hobby Lobby or Micheals). Secondly, put rubber bands a