Skip to main content

May Day and today's accomplishments :-)

MAY 1st! :

First of all. MAY IS NATIONAL CYSTIC FIBROSIS AWARENESS MONTH!

May 1st was bittersweet, the start of the CF Awareness month, but also a day where I always miss my Grammer (Grandma). Every May Day I would sneak up to her door and leave a May Day Basket with flowers or crackers or something. She'd hang them in the kitchen by the back door and leave the little paper cone shaped baskets hanging up for months... She loved them, even though they were horribly crafted and tacky as all get out.

Other Memories I love with my Grammer:
- I told her I liked the Cherry flavored Larabar that I tried one day.. She knew I needed to gain weight; her and Grandpa showed up with Cherry Larabars in bulk. (seriously, tons!!)


-Beanie Bear Hunting (we would drive an hour away to get in line at 5am to get exclusive bears, she owned them all)

-Bingo. We played Bingo at our Family Get Togethers.

- And last but not least... most people for their 21st birthday get drunk. I told mom I just wanted Grammer and Bud over for dinner and to play board games. Playing those board games with them on my birthday was the best decision ever. It is a memory I will never forget.

When I think about my Grammer I think of these memories not of her in the hospital. That isn't how she would want me to remember her. I will remember her wearing her dresses, fun purses, pink colored toenails and QVC Jewelry. :-)


TODAY:

Today: I got a lot accomplished! I got all of my meds covered by my new insurance, got my bills paid, and grocery shopped. What's sad is it wore me out. Not having some of my nebulizers from my insurance being weird has really set me back. I'm gonna have to work twice as hard to get back up my lung function before clinic in two weeks. Once finals are over I can do that. I can focus and get healthy again :-)


Hanging up my Character Shoes... (for now):
Sadly, I had to admit today to myself that I couldn't perform in the Improv and dance show this weekend. I know I don't have the energy to do a good job in improv and the dancing will give me a coughing fit. I hate having to "hang up my hat... or character shoes in this case" But performing takes too much time and too much out of me right now. I've been in over 30 productions and, BELIEVE ME, I'd love to keep doing shows. But I need to take a year off at least to focus on jogging and meds, plus I have work and school.
 AND
 I want to be at my healthiest, so I can perform to the best of my ability. I once did a two hour show that was almost all dancing ( SchoolHouse Rock) and I did it without coughing or feeling like I was gonna pass out. Last week's show, just performing the finale number made my legs shake and my lungs hurt. 

But I will be watching everyone perform this weekend and I know next year or the year after I will be back to full on dancing and performing again!!





Comments

Popular posts from this blog

Leaving on an Airplane, don't know when I'll be..oh, wait I return on Sunday!

VACATION YAY! Tomorrow I head to my uncles' and stay there, then Thursday morning, EARLY in the morning, we are headed to the airport! We are flying into Buffalo, NY and spending Thursday at Niagara Falls! Friday and Saturday I have no clue what we are doing! I know there is a surprise for me. But I'm not sure what it is. All I know is I'm soo excited to go! Last Fall I went to Las Vegas with my friend Amanda! It was soo much fun and had been like decade..seriously 10+ years...since I had been on vacation (well more than wknd trips to see friends who live within a 10 hr drive, hee hee Kym!) When I get back from my trip this weekend, I will post about it too! I just have to pack a little more when I go places and make sure to do my meds. On top of the regular, clothes, etc that most people pack  I will also pack: therapy machine 5 nebulizer cups  28 vials of medicine for my nebulizers over 150 pills I will take during the wknd 16 cans of stomach...

Tech-savvy Thursday- new look!

New Look: Getting Tech-Savvy: Since, I'm getting more involved in blogging, I decided it was time to give my blog a makeover! eMake-overs are always fun, whether you getting a new hair style, or outfit at the mall. However, I've been researching a lot about blogs and social networking. And I thought it may be time to update my blog's look.      I think I like my new one (at the top) a lot better than the old one (pictured on right). What do you think? I wanted my blog to feel more personal and I wanted to make it more tech-savy. I kept the black/purple color scheme. But made the purple the main color instead (and made it a softer purple). I then started looking up how to make my own buttons, widgets, etc. It isn't too hard to find tutorials for anything these days, between google, pinterest, and forums, you can pretty much find instructions for anything. I used a simple code and photobucket to make my own buttons: I think my new Tw...

LOTS, LOTS, LOTS to Tell!

Doing What I Can: People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that".... Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment ) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here ) & I'm keeping my Food Journal for him to look at. Here's how that is going: Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I...