Trip to KC

This is probably going to be ALL over the place so bear with me and enjoy the ride…haha  Let me pick up after my last clinic appointment…

We headed to Kansas City the last weekend of July/first weekend of August for my husbands 20 year high school reunion.  It stated off as a super short trip.  Flying in on Friday afternoon and flying home Sunday morning.  I decided to change my return flight so I could stay in KC to help my mom after her most recent hospital stay and to squeeze in helping my dad get situated in their new house.  I also set up as many lunch/dinner dates and “swing by” visits that I could with friends.  Since we aren’t back in KC that often we try to squeeze everything in that we can.  I never want to sound like I’m royalty or sound snooty by saying that “there is one of me/us and lots of you,” meaning we wish we could see everyone but that’s a lot of people!  Therefore I/we try to set up a central place for lunch, dinner or drinks and say this is where I/we will be if you are wanting to see us/me.  I have a hard time saying it that way because I don’t want anyone to take it as though I think I think I am better than someone and that everyone else’s time doesn’t matter because it does.   Continue reading

Losing or winning the battle

When someone with a disease passes away many people use the phrase “<name> lost their battle with <disease>.”  That statement can be taken as if the persons disease won and took them.  I know when people use that statement they don’t mean that the person was weak and let the disease win.  They mean that they died and the cause was that persons disease.  Some people take it as an insult.  I personally don’t because I understand people’s intention behind it.  Also everyone grieves differently.  As a person with a disease I know that I fight everyday to keep living.  I don’t necessarily feel that it is a “battle” but the life I was given even though it is much harder than some.  Some days are much harder than others and some days are much better than others.  Life with CF is all I know.  I was diagnosed at 5 months old so I don’t know any different. Continue reading

Saying goodbye is hard

I was enjoying a BBQ with friends yesterday afternoon when I randomly checked Facebook. I scrolled through and saw posts saying “breathe easy Jennie.” I had to go back and check who it was posted for because surely it couldn’t be one of my best CF friends.  I immediately got up and walked away from our group of friends.  I don’t even know how to process the news of her passing. I quickly messaged mutual friends to find out what happened. We have been friends for about 15 years!! Her passing was unexpected, therefore it is a complete shock. We had plans for her to come here next month to visit when another one of my best CF friends (one of our mutual friends) would be here.  We were ready for a fun time with lots of laughing. Now myself and my other friend will be making plans to lay our great friend to rest instead. 

Jennie and I had many conversations about this day in our morbid way that we did. I am not ready for this day to be real. I am sad to the core.  Jennie was a wife, mother and a Meme (grandma).  Her family will be lost without her.  My heart hurts for them as they embark on this journey of saying goodbye and until we see you again.

Continue reading

Florida trip and CF awareness month

It has been a busy few weeks.  Heck, it’s been a busy few months. 

I was on IVs, then in the hospital for kidney failure then a few weeks of recovery and energy storing for my trip to Florida this past weekend.  My sister and I went to Miramar Beach in Destin, FL this weekend.  We arrived Friday morning and left Monday evening.  We packed in a lot of time on the beach laying in the sand, enjoying the water and soaking up the sun.  We also visited some of the “famous” places there like McGuire’s and AJ’s.  We even got tattoos!  My sister’s says “With Every Breath” and mine says “Every Breath Counts.”  They are on our ribs under the bra line.  To seal the weekend we went for a helicopter tour to see some sharks and dolphins.  It was beyond beautiful!  I could have stayed up there all day. Continue reading

Home sweet home!

I got paroled today!  My creatinine was 1.82 this morning!!  After receiving the great news that my creatinine was down my sister walked into my hospital room.  Mind you, she lives in Kansas City and I’m in Knoxville, TN…11 hours apart!  I was speechless and that doesn’t happen often.  I was so surprised.  That made my day even better.  My doc came in and asked if I was ready to go home and of course I said yes.  I wasn’t going to argue with him.  Although I was ok with staying if it meant a sister sleep over in the hospital.  We haven’t done that in years.  I got my walking papers and was home by noon.  Continue reading

Progress with a headache on the side

Today started off with a doozy of a headache that is still hanging around.  Since I can’t take ibuprofen at the moment I have to settle for Tylenol which as usual didn’t help.  Next up…Tramadol!  Strike 2!  Waiting to see what they want to try now.  I don’t like taking narcotic pain meds at all and only do as a last resort but this headache has hung on for dear life!  Anything and everything makes it worse too.  A knock on the door is amplified.  The light hurts.  Chipper people are extra annoying…hahaha.  I have spent the day trying to sleep in my dark room with no TV.  I even have the brightness turned down on my phone and laptop.  This headache can get to steppin!  We are going on 12 hours with this one.  Ouch!   Continue reading

Stubborn kidneys

Another day in the books…  I am still nauseous and my eyes feel like they can’t focus at times.  I have pretty much no appetite and nothing sounds good at all but I keep snacking to keep my calories somewhat up.  My calorie intake is defiantly not where it needs to be but some is better than none.  My creatinine has been on a roller coaster.  So here are the numbers.  Monday it was 5.3, yesterday in the ER before fluids it was 5.99, last night after a bag of fluid and half a bag of fluid with sodium bicarb it was 5.6 and this morning it was 5.8.  As I said before the normal range is .5 – 1.1. Continue reading

Light at the end of the tunnel

I have survived the worst of the cold or whatever it was that was trying to kill me last week.  At one point I thought for sure my sinuses were trying to kill me.  I had horrible sinus pain/pressure.  Tons of drainage.  Sore and sensitive teeth from all the sinus pressure.  Terribly dry throat.  Coughing of course.  My teeth don’t hurt now and the sinus pressure is better.  The pressure is still there a little but not like it was.  Still coughing and that has probably increased a little because of the drainage.  Still having headaches every day.

I did not go for lung functions (PFTs) on Tuesday like originally scheduled because I knew they would suck since I was sick.  I have my ENT appointment on the 10th so we shall see what he says about my sinuses.

We got snow and ice in Tennessee in the last few weeks and it is more snow than they are used to.  That means that the city/state shut down.  State of emergency kind of shut down.  They don’t do snow and ice here in east TN.  Pretty much all of the snow has melted but of course there is more in the forecast for Thursday.  It doesn’t usually stick around for long.  I am very ready for spring and summer!

Until next time…

Perfect timing

Where to start…..  I woke up today feeling complete doo doo.  My head was throbbing, sinuses draining, sore throat, coughing and sore all over.  I believe I caught the cold that the guys in my house have.  Perfect timing, considering I finished 21 days of IVs today.  I was really looking forward to feeling decent for a while.  I did feel pretty decent up until a few days ago when my cough started to increase.  I was thinking it was all of this crazy cold weather we have been having in TN.  Continue reading