What does being sick look like

Once again I have fallen off the radar in some aspects as I do when I get sick.  It is hard for me not to fall off the radar when I’ sick.  I try not to because I know that it worries some.  With that said, I figured I would try to paint a picture of what being sick looks like for me.

First of all, being sick drains me of all energy.  The infection that takes up camp in my lungs is a constant battle.  It is never eradicated, it is just a matter of how active it is and if it is causing me problems.  If we treated me with antibiotics every time I cultured something I would never be off of IVs.  We only treat when I am showing symptoms of an active infection such as increased cough, increased sputum production, change in sputum color (darker/brighter=more infection), sleeping more, get worn out easier, short of breath, wheezing, chest tightness, etc.   Continue reading


First of all before I get into this post.  I just have to say, it is so nice to have a working laptop again.  My laptop quit working a few weeks back.  I turned it on and it had on screen.  I held off as long as I could but being stuck in the office at the desk is not the way I like to spend my days and evenings.  It was tax free weekend this past weekend so I bit the bullet and got a new laptop.  Of course the one I chose was sold out and I had to wait for it to be sent to me.  Well today it got here and I am tying this on my new laptop!!!  Freedom!!!!

Now back to the point of this post…. Continue reading

CF Awareness Month: Support System

A support system can make or break someone, that is no different and probably more true in people with CF.  Everyone needs support in their life.  CFers need a lot of love and support as well.  Having CF is physically and mentally draining at times therefore we need people around us whenever we need it.  I personally hate needing and asking for help.  I want to do everything on my own.  I’m stubborn like that.  It is a real hit to the self esteem when you can‘t do things you used to do or that you want to do and need help.  There are some people that can’t handle loving someone that has CF, for whatever reason and that is another knock to the ol self esteem.  Continue reading

Chapter 5 – Marriage

“Playing the Cards Life has Dealt”

The guy who I was dating throughout junior high and high school proposed to me the summer before my senior year and we set a date for the wedding after I graduated from high school.  January of my senior year I had the opportunity to go to Hawaii through the Dream Factory.  The Dream Factory is a wonderful organization that gives kids who are sick with incurable diseases their wish like the “Make a Wish Foundation” does.  My wish was to go back to Hawaii.  I have family that lives in Hawaii and it is my favorite place in the world.  I haven’t been anywhere outside of the US but still it is my favorite place to go/be.  The only weird thing was my fiancé went with me, not so much of a kid thing to do.  In July of 1998 we got married in a big catholic ceremony.  We moved to Pittsburg, KS two days after getting married.  My husband was going to start college at Pittsburg State University and wanted to walk on the football team.

While I was living in Pittsburg I hung out with my aunt a lot since she lived there.  She invited me to a women’s bible study.  I was very interested because I had a lot of questions that I wanted answered.  One of my questions was, did God give me this disease and why?  I began to find comfort in knowing that God did not “give” me CF as some kind of punishment and that I won’t know why I have CF until I have a chance to ask him when I get to heaven.  I am sure that I will see all the people that I affected and encouraged because of CF so I decided to stop wasting my time worrying about that.  I know there is a reason I have CF I just cannot see the magnitude of why yet.  I have a major compassion for sick people, people who are in the hospital a lot, people who have no energy due to illness, and even the caretakers of the sick people.

Continue reading