Friends and Family

What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind.  Friends and family have been on my heart and mind for a while.  The sicker that I get the more I think about them and what they may be feeling.  Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge  my CF or even remember.  It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading

A bunch of jumbled thoughts

I hope I can write this and let it make sense because it is all jumbled in my head….  It feels like a game of ping pong with my thoughts in my head.  Hmmmm let me divide it into topics….hahahaha  Continue reading

3rd times a charm hopefully

/shannonigansToday I had my third set of intercostal blocks in my back for the rib pain.  As you know, I have a broken rib that is taking forever to heal due to the fact that I can’t take a break from breathing, coughing or sneezing to give it time to heal.  The pain is better than when it first began back in February, 5 and a half months ago so for that I’m glad but there is still a little bit to go to be pain free.  Yes, I hope to be pain free.  Yes, I’m asking for a lot. Yes, I’m stubborn. hahaha.  I have a follow up appointment with the pain clinic August 10th to talk about this set injections hoping to be done with the pain clinic.   Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

Transplant Evaluation week is coming

We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation.  With that comes a lot of emotions as you can imagine.  I am excited, nervous, anxious and ready to breathe.  Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum.   Continue reading

Doctor appointments GALORE!

Just wanted to fill you in on some of the important doctor appointment dates that I have been waiting on.  Of course they are not soon enough for my liking but I shall deal with it.

Before I even get into these appointments, YES taking care of me IS a full time job that doesn’t pay well, however my reward is my family. Continue reading