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.

It was nice to spend some one on one time with my sister. We haven’t been able to do that in years! CF is always there, even in the fun times. My lungs were not a fan of walking on the unpacked sand. You wouldn’t think it would wear someone out but it sure does. I am not a fan of involuntary exercise anyway. haha We took walks on the beach but I made sure we were on the packed sand by the water when doing that. The unpacked sand was walking to find a spot to plant our butt for the day and to the tiki hut for drinks. There were stairs also to walk down to the beach. I had to “stop to enjoy the view” (aka catch my breath) and go at a slower pace.

One of the mornings I was coughing a ton before and during my treatment and getting a lot up and gagging a few times. I looked at my sister and said, “this is the part no one sees. They see me out and about right after I have done a treatment and am breathing “good” for the most part or trying to not cough much. This is why people don’t understand that I really am sick. You just can’t see it.” Of course she has seen it, as has my husband, kids, mom, dad and a few others. I prefer to not do that in front of people because it is embarrassing and they feel helpless as do I because I can’t make it stop. With all that said, I will gladly take the shortness of breath and “stops to enjoy the view” (aka catching my breath) to be in my happy place on the beach and with great company.

I got back around 11pm Monday night and was greeted by my handsome husband and the TN allergens. I have been coughing a ton since getting home. I am going to make another appointment with the allergist to talk about shots or more extensive testing or something because they obviously affect me a lot. It is beautiful here but the air quality isn’t the greatest for someone with CF and asthma. I’m doomed. haha

Moving on… May is CF Awareness month. I will share different things about CF throughout this month, that is if I remember to. haha That said, I watched “Still Alice” on my way home from FL. It is about a gal, played by Julianne Moore, who has early-onset Alzheimer’s. It was a great movie. I joke about having a horrible memory only because it really frustrates me when I can’t think of things or remember things. I know that is completely different than an actual diagnosis but it was weird how I could relate to her at the beginning of the movie. That’s tonight’s random thought. haha

I didn’t get to sleep in like I wanted to yesterday. I had a psych doc appointment at 9:30am and had a boatload of errands to run. I didn’t sit down until around 2:30pm and then left again at 3:30pm. I have been posting on FB but haven’t had a chance to really go through and see what everyone is up to since last Thursday. So I may have missed things but I will hopefully catch back up soon. Same goes for my email. I was on vacation in every sense of the word…it was great!

Don’t forget to order your Shannonigans gear. There is only 11 days left!! http://design.goteez.com/shannonigans The more that is purchased, the more CF awareness there will be and the bigger donation to the CF Foundation will be.

Until next time…