If I didn’t have CF

What if I didn’t have CF?  That is one open-ended question.  This topic for this post has been on my mind for a while now.  I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.

The “what if I didn’t have CF” question/statement goes way back to childhood.  I think I am just going to start to list things and elaborate when needed. Continue reading

Welcome back Oscar…Oral ABX are stupid!

Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type. Continue reading

Long 6 weeks of IVs

I finished IV antibiotics last night.  It’s been a long 5.5 weeks of multiple antibiotics.  Doing IVs is second nature now after all these years.  I’m very organized so I always have things set up to make IVs easier to weave into my regular schedule.

Final dose!  IMG_4740 Continue reading

When will you be better?

People ask or want to know when I will be better.  That is a great question. I have not felt great for a good while now, 2-3 months maybe.  I was in the hospital for 9 days and you would think I would come out better.  Being released from the hospital doesn’t mean I’m fixed by any means it means hopefully we have things situated and are heading in the right direction to being better. Continue reading

My rock

I guess I am really in my feelings today so bear with me.  I came across a news article about Rory of “Joey + Rory” the country duo and her battle with cancer.  In that article I found another link and then finally the link to This Life I Live blog.  Tears rolled down my cheeks as I read what he wrote, “So we don’t have forever. We’ve got right now. And that’s enough.” I don’t have a clue why this is hitting me so hard today but it is doing a number on my tear ducts. Continue reading