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First blog: Hello

My first Blog: A little About Me

I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me.

The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF.

Let me start off with some basic info and statements.

I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); and sometimes I will blog about past experiences ( like the time I shoved a styrofoam cup up my nose... don't ask).

I will constantly call myself a CFer ( a person with CF), even though it is not PC...Technically, I should write a person with CF, however I don't think  CFer has a bad connotation, I wear my CF proudly like a badge... and it's shorter and I'm lazy. Take your pick.

Big Outcomes/ Big Decisions ...

It seems everything in my life is "pending" right now.
1. I've applied to Grad School, but don't know if I did for the right program
2. I finally, at the age of 26, I got my DNA mapped, but don't find out for a few weeks which mutations I have...


If I have the G551D mutation, there is a new drug called Kalydeco, which specifically targets a faulty gene and its protein product, CFTR.


If I don't get into grad school, then I have to figure out what to do (career wise) and what my next steps are; however, I'm just as anxious about my DNA mapping!

What do I do to keep my mind off it?

Keep busy. work, work, work. work and design websites... and read. That has been what I do in my free time for the last month. Which is why I have decided to finally start a blog.

 







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Updates Galore!

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...
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Craft Show and Work.

Craft Show This Saturday is the Craft Show! Mom and I will be selling our stuff there! It's at Liberty Village in Princeton from 11am-2pm! Please come and see all the booths! There will be 20 booths, kid's bouncy houses, games, prizes, raffles, etc. Proceeds from raffles, etc help give the residents of Liberty Village Christmas gifts and a Chirstmas Celebration! I'm excited to do this craft show, I remember going to them when I was younger! I loved it! Mom would take me along and I really enjoyed spending the day with her and looking at all the crafts! Mom is selling lots of hats, some purses, pouches, a couple blankets, teddy bears, etc. I will be doing my usual picture frames, notecards, etc. I will also be selling Michelle's My Bubble Products! To see some products: A Few of Mom's products -> Click Here!     Michelle's My Bubble products -> Click Here!      My mom said she is going to set aside a portion of her profits to ...
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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...
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