Being my friend

What does it mean to be my friend, to love and care for me?  I’m going one step deeper with this one.  What does it mean to be my friend, me being a person with Cystic Fibrosis.  I’m not going to “beat a dead horse” on this subject but it has been on my heart with all that’s been going on with me.  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

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

I see says the “blind” woman!

I have been a busy lady for the past few weeks.  I am just now getting time to sit down and update.  Let’s see if I can fill in all the blanks….

I headed north for 5 days to visit a friend and to celebrate her daughters 2nd birthday.  I should say she is much more than a friend.  She is a sister/cyster.  Her daughter is like a niece to me.  We have known each other for quite a long time.  She also has CF.  She is younger than me and likes to remind me often that I am old and “fun sized” (aka a petite little thing).  I was able to be with her to celebrate her baby shower, her daughters 1st birthday and now her 2nd birthday.  We have also been able to celebrate each others birthdays together as well a few times.  I am thankful for her and her friendship.  While I was visiting her I was able to finish IVs on Saturday the 13th.  I’m feeling pretty good.  Of course there are good moments and not so good moments. Continue reading

ONLY 3 days left to order Shannonigans Gear!

Hello all!

I just wanted to give a reminder about the Shannonigans Gear sale coming to an end this Sunday, the 17th!  We still need more sales to be able to make a big donation to the CFF.  Don’t wait!!!  Ok, I guess you can wait until payday/Friday if you need too.  hahaha  I don’t know when there will be another sale because we have to have enough interest to make the sale worth doing. There are 6 different items to choose from…including youth sizes! Continue reading

Happy Mother’s Day

Happy Mother’s Day to all the mamas out there!!!  That includes birth, adoptive, step, foster and even those that took on that roll without any title.  My mom is pretty special if you ask me.  My mom sacrificed a lot when I was younger whenever I was sick.  If I was in the hospital she would come to the hospital after work and stay the night.  She would wait until the doctor’s rounded in the morning and head back to work for the day.  We had a good routine going.  The older I got the more freedom I got to be alone at the hospital which was brave of my mom.  I embarrassed her many a times by the things I said to nurses, residents/interns (aka “duckling docs”), RTs and more.  She has stories…hahaha  Continue reading

Handicapped Parking

I am guilty of watching someone park in a handicapped parking spot and judging whether or not they should be parking there.  They get out and they look completely fine.  Hello Shannon, you can’t see all disabilities, CF included!  Pretty much the only sign that there is a disability in someone with CF is if they wears oxygen.  I have been thinking about when is the right time to apply for/get a handicapped placard as my lung function has declined 24% since moving to TN 22 months ago.   It has been a battle in my mind of accepting the fact that my lungs are as sucky as they are and being ready for even more stares from people.  I know there will be people who make comments that I am “perfectly healthy” or even leave nasty notes on my car saying that I should be ashamed that I am taking a parking spot from someone who actually needs it.  You may be saying that won’t happen.  Well it does, has and will.  It has happened to friends of mine and I’m sure it will happen to me at some point.  I just have to be prepared mentally for it. Continue reading