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

CF clinic check up

I spent the day at the hospital with 2 different appointments.  First up was my CF clinic check up from my 21 day course of IVs.  My main complaint today was the continued pain in my right side.  My appointment was at 9:30am and I was finished at 12pm.  A lot of people complain about waiting at doctors offices.  I, on the other hand, am used to it.  It is par for the course when you have CF (or any other chronic illness).  I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn.  My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor.  I am now a professional “waiter” by this stage in my life. Continue reading

21 days down…

IV antibiotic update:  Last Thursday (the 1st) I had my regular labs drawn.  I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2.  That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys.  We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9!  It is better to stop it before it gets to bad.  I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range.  I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading

Progression…may as well be a curse word

(Kind of a ramble…sorry)  It is day 11 of IV antibiotics.  I felt horrible over Thanksgiving and the weekend.  My husband was sick last Monday and Tuesday as well.  We were no fun last week, that’s for sure.  We had Thanksgiving lunch in our PJs and watched Netflix and football.  My husband is back to his healthy self, thank goodness.  When my husband came up sick, we thought it best to cancel my sisters trip here for the holiday.  We didn’t need to subject my sister, nieces and nephew to all the germs in our house.  We sure missed having them here for the few days.  The worst part is hearing that my oldest niece was crying and upset because she couldn’t come see aunt Shannon.  That broke my heart.  Of course, I am now thinking of when we can get a visit arranged ASAP.  She said she wants to come here for her birthday.  I agreed that was a great idea!  Spring break in Tennessee!!  Whoo hoo!!! Continue reading

Hawaii – Mom’s happy place

We recently got back from Hawaii (Honolulu, Oahu).  The purpose for the trip was to spread my mom’s ashes in her favorite place on earth.  She wanted to be in Hawaii forever and ever.  We chose to spread her ashes in front of Duke’s restaurant on Waikiki beach, mom’s favorite restaurant.  It was a very special time but also surreal and will forever be a memory in my heart. 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