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

Post- Surgery Appointment

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appoint...
10 comments
Read more

The Stork Came!

It finally happened!!! The Stork came to our house!! We had 3 kids placed with us (on August 4th) Friday afternoon. Luckily, Andrew was able to take off Friday-Monday (Aug 4th-7th) to be home as we all adjust the first few days. He then worked 8th-12th, but we needed him back home more until the kiddos started school. So took a full second week off, because it was really rough ! Big thanks to Culvers & Phil for allowing us time we needed. I love having kids in the house, but it's a lot of appointments for these kiddos at first. . For privacy reasons, I will never use their names or post pictures of them.  I have made fake names for these posts. When they called I was a little nervous to take 3 kids at once, especially since I have Cystic Fibrosis. We had agreed on only 2 originally. But, the lady explained the 3 of them really needed somewhere. Most foster parent's don't take sibling groups and it is really rare to find one that will take three, so our hearts wanted to ...
8 comments
Read more