Friday, January 10, 2014

Updates, Updates, Updates, Get Your Updates Here!

 Updates and Evaluating

    I realize I have a lot of different topics that  I have been discussing lately and should probably let you know how each are going. So much has happened, let's see... I got sick a lot, 2 trips into the hospital in October, a month of Gastrointestinal Issues in November, Colonoscopy in December, My CFer Bestie Laura was admitted with low lung function/was put on 24-7 oxygen and starting fighting for a Transplant in December. I also have decided to focus on getting my lung function back, but since it has been slow paced and I have been doing more crafting and cooking lately! Well let's begin the updating:

1. School: I had to withdraw from last semester (my first semester of Grad School) and I'm currently hoping to start a new program in the summer! And my tuition appeal is still being processed, I emailed them yesterday to make sure they didn't forget :-) (Read About Why I had to withdraw from school HERE)

2.Gastrointestinal Issues: These have pretty much cleared up in the last couple weeks. I really think the probiotics are helping! I've been taking Probiotic pills and drinking yummy smoothies that have Kefir (probiotic yogurt type drink) in them.  And the Colonoscopy said my intestines look good, I just had an infection, yay! I deal with CF, Arthritis, seizure issues, and Mild CP coordination problems, I don't want permanent extra tummy troubles too! No, thanks! However, since October despite my stomach issues I have been keeping my weight stabling between 105 and 109 lbs.This is being done without using my stomach tube. Which I want out. So YAY!!!!!!!!!
      Side Note CFers: I'm grateful for my G-tube. I'd never take back putting it in. I  believe it really saved my life.I went from 40 lbs to 90 lbs in 7th grade. I was never able to keep the weight up with my working, going to school full time, dancing, theatre, etc. However, my life is a little more chill now.
       I will go to school (but mostly online), I work, but not as rigorous of a job, and I still dance but not in a troop or show choir. I will go back to theatre, its in my blood. But, mostly directing, choreographing, and producing. And I'll break down and audition/act in 1 at least every other year. Once I get my lung function up more and as long as it stays up there then I can perform! I honestly feel like my stomach issues are going to be something of the past soon (except the occasional blockage..) and I'm hoping now after having my Gtube since 1997 ( 15 YEARS!!!!!!!) I can get it out this spring! Because I have had lots of leaking issues with it in the last 3 years and its time to be able to do floor dance moves without thinking "Oh, no, how do I do that with my G-Tube" (lets say goodbye to this mess ----->)

3. Laura: Is still fighting at below 18% lung function, is on oxygen and is in-and-out of the hospital constantly for many issues. She is still fighting for a lung transplant and is going to another clinic on Jan. 27th for a meeting about Transplants (abbreviation- TX). I'm so excited to hear about the TX appointment and hope she gets new lungs fast! She is currently in the hospital, so think positive thoughts for her! (Read all about Laura's FIGHT HERE!) She is such a strong girl, and CFers are born fighters! Wish the 27th  would just get here! Fingers crossed for a TX really soon!

4. My Fight: As you know (if you read my previous posts) I have been struggling with infections and lower lung function. I've been on antibiotics a lot. IVs in the hospital and at home. And then on oral antibiotics at home too, like now. I'm currently taking Cipro. But good news, I'm actually feeling a lot better! My lungs are not as icky feeling, I can breathe better and I'm not coughing  "more than the usual CF amount!" So hopefully, things are looking up! I texted my boss yesterday and we are both very excited to have me working more again! I don't know if I should go back to being a closer. Because my night meds wouldn't get done til 1am the next day, but if I don't close the store, everything should work fine! Also, I was the healthiest in 2012 during the summer (which is when I was in the show "Hairspray". I did my meds backstage! Everyone was really comfortable with it and made me feel comfortable doing them, which is quite a challenge when you don't know anyone. Kudos to you "Hairspray Cast." I was jogging at home in mornings, dancing in a show at night, and just really giving my lungs a good  workout. My job wasn't taxing either, I was a nanny for two amazing girls! I was compliant to my meds and getting lots of exercise and it paid off. So time to re-start that trend. I have been compliant with all 9 nebulizers a day and Chest Therapy EVERYDAY since NOVEMBER 21st!!!!!!! That is a big deal for me! I've been stretching more and even was walking on the treadmill this week ( not a lot, but I did it). And now jogging starting Monday (I'm away this weekend visiting my mom- YAY!).  Let's get these Lungs a-workin-folks!!!!!!!!! Check out the workout they got on stage! (I'm front left in the picture face looks skeletal, cuz all you see is my giant open mouth singing "BALTIMORE...")

5. Clinical Trials: Yep, still in them. They are going well. Had a little trouble with the diary that I have to submit my answers with every night. But I got it fixed and this trial is really keeping me compliant! It got off to a rocky start, but everything is going smoothly now! YAY! (Read about my clinical trial mess HERE!)

6. Crafting and Cooking: I discussed this a lot a couple posts ago. But all I can say is I love it. I will post some pictures of things I have done next week (my camera was left at mom's with all my pictures on it, so I will be getting that back this weekend!!!!). I've made Christmas Gifts, and done some projects around the home too! Also, even though my boyfriend, Andrew (note: He went to Culinary School before getting working on his Bachelors in Education.), is a WAY better cook than I am. I still have been enjoying make some dishes for us for dinner. I've come up with some high calorie drinks and tips on weight gaining too (To see all my RECIPE posts click HERE!). I'm still finding ways to make meals higher calorie and have been tweaking some recipes from pinterest. I hope to add more recipes (with CFers modifications listed to make higher calories for those of us who need it!). I will continue my pin-challenge too. By making one pin from pinterest a reality and posting about it each month. I love it. It makes me feel like there is a point to pinning now. Everything I pin has become now a dream, but a possibility.

      Which is kind of how we have to live our life. Not just dreaming, but achieving. Especially with CF. We work at it, we work really hard at it. But it pays off. Yeah, sometimes it brings me down, thinking how hard it is for me to do simple things like grocery shop (carrying groceries gives me coughing fits). But I have to remember to (as Andrew would say) "calm down, everything is fine. Take a deep breath and move on." And he is right. I may not really care for the Burbs, or for the fact I had to withdraw from Grad School, or that I spend a couple hours a day doing breathing treatments. But really if you look at the big picture, those are small in comparison.
      I have a nice apartment, a car that I bought in 2012, my Bachelors, will re-start my Masters, fnish my Real Estate Exams, have an Amazing boyfriend who means the world to me, a supporting family I couldn't be any more greatful for! I'm pretty sure any one of my Aunts, Uncles, Cousins, Mom, Dad, or Sister would give me their lungs if they could and I'd do the same for them... Well not my lungs.. cuz mine suck. But my liver, kidneys, etc. And I'm happy with my life overall, don't get hung up on the small things. Take a breath and re-evaluate!

And now Andrew and I are headed on our car trip to my hometown and PLEASE know we will be singing to the Frozen Soundtrack. I'm an alto, so naturally I will sing the guy parts and make Andrew sing the girls parts... Just kidding. 
Or am I?


  1. FRIG! GTUBE FOR 15 YEARS! I had a G/J tube for about 2 years when I was in high school. It was a very depressing times. Gtube and BIPAP do not mix..

  2. I didn't mind at ll when I was younger, but it leaks more now that it has been in for so long. Dancing and my stomach don't mix too well sometimes, but otherwise I haven't had too many issues. But still ready to get it out :-)