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

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...
18 comments
Read more

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...
10 comments
Read more

My Clinical Trial Mess

A Clinical Trial Mess: Monday, I had an appointment for a clinical trial evaluation. Let me start out by saying, I always get  amazing care at my doctors...HOWEVER, this evaluation was done by a third party brought in to handle the research. The research nurse was a flibberty jibbet. She was nice, but kept just re-organizing her supplies, like she didn't know what to do. She seemed nervous. She mentioned she usually had another nurse with her. She took my weight, height, urine test, pre-med spirometry test (PFT-pulmonary function test) Next she decided to draw the blood, while waiting for the pft results to print. She got out the supplies and the sterile paper that she places it all on. She dropped te paper on the floor and proceeded to place the packaged needles and supplies on it.... So in my head I tell myself "Okay...( inhale control exhale my germfreak...) it's okay, it won't kill me..it only touches the bottom of my arm, not the actual place that she is dra...
6 comments
Read more