Skip to main content

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.

 







Popular posts from this blog

Beginning of the Year Troubles

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren

No Holiday Blues, just Tummy Troubles!

Stomach Issues, Gee, Wonder Why: Let me start by stating that, I take a lot of pills. Its not a big deal and all of them are very important. I take vitamins, oral antibiotics, some oral steriods, pills for acid reflux, pills for arthritis, and then enzymes every time I eat.  But lots of people don't realize how crucial those pills are to me (well, to us CFers) I take 5-6 enzymes with meals and 3-4 with snacks (so 30 enzymes, and 10 other random pills a day). I have been good about taking them. I hate that Cystic Fibrosis affects my digestive system so much. If I can't digest anything, I won't have the nutrients I need to keep healthy, or be able to digest the food to keep weight on. Over the years, the enzymes have gotten better and help us absorb more. I've been on Pancreas, Creon, and now have been on Zenpep for the last couples years. I love my Zenpep ( read the RX list for Zenpep here ) However, the enzymes weren't effective enough when I was little t