Oscar and Oscar II have arrived

Today was an early start.  I had to be at the hospital for labs early because we ha plans to go to Dollywood the amusement park and wanted to be there when it opened at 10am.  So I made to the hospital for labs, stopped for gas on the way back and made it back home by 8:05 am.  We made it to Dollywood around 10:15 am, they opened at 10am.  Our tradition in our family is that we have a family day and/or night before one of us goes away for an extended period of time. My step-son is heading to his mom’s for the summer so that meant a family day was in store.  What I learned today was 1.) handicapped parking when at an amusement park is a life saver 2.) you don’t realize how much lung power you use while riding roller coasters until you are out of breath while riding one 3.) long lines for rides give you time to calm your breathing and regain control of it 4.) your inner thighs get sore from “holding on” and finally 5.) I was right when I said that I could see a lot of coughing from laughter in my day.  We sealed family day by playing a game of Sequence after dinner.  Continue reading

Holy lung spasms batman!

There’s nothing like being woken up by your lung/back spasming at 5am.  Luckily I had a few pain meds left from my kidney fiasco a few weeks ago.  They took the edge off of the pain.  I wasn’t able to take a deep breath without my lungs freaking out and spasming.  I had to take short little breaths as to not expand my lung very much.  It just takes your breath away when there is pain when you breathe.  I emailed my nurse and they had me go for an x-ray to rule out a collapsed lung (small or big).  It takes great talent taking in a deep breath for an x-ray when it hurts.  Add that to my list of super powers…haha.  The x-ray was fine.  So that means that it is just good ol pleuritic pain.  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

College Scholarship for people with CF

I received the following email asking for me to post it on my blog so that the info could get out to as many CFers as possible:
For college students living with cystic fibrosis (CF), campus life can come with its own unique set of challenges. Scheduling treatments around classes and getting the right nutrition from the dining hall can be difficult, but the financial hardship could be less of one.
AbbVie recently announced that undergraduate and graduate students living with CF can begin to take a step toward alleviating the financial burden of attending college by applying for the 2015 AbbVie CF Scholarship. For nearly 25 years, AbbVie’s scholarship program has supported the CF community by providing financial assistance to exceptional undergraduate and graduate students who are pursuing their dreams of higher education. 

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Tennessee Allergens SUCK!

We know that living in Tennessee has taken a toll on my health in the area of lung function.  I have dropped 24% in the 22 months living here.  I have asthma along with CF so that is a double whammy.  I did skin allergy testing about a year ago and it showed that I wasn’t allergic to anything.  I was hoping that it would show something so I could have some answers as to why I was having such a hard time.  I was bummed.  I wanted answers.  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

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