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

CF Clinic Day

The first bit of news is that my dad is here to visit for a week…yay!!!  He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them.  Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha

Today was a good clinic day.  First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick.  I have been having good days and bad days as per my normal so I was curious how my appointment would go today.   Continue reading

CF Clinic day

I managed to get myself up and out the door for 2 doctor appointments.  I had a very hard day yesterday, emotionally and physically.  I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc.  Physical symptoms are non productive cough which sucks.  I can’t sleep for more than an hour at a time it seems.  I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. 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