42…Take that CF!!!

I know I haven’t updated in awhile but count that as a good thing this time. I did have a birthday. I turned 42 on February 1st. When I was born, the life expectancy was late teens. So to say that I am very proud to have turned 42 is an understatement. It hasn’t always been an easy road but I’ve kept pushing.

Since 2016, January is not an easy month for me with the anniversary of my mom’s passing. By the time my birthday comes I’m ready to be happy. It’s still a hard time without my mom because my mom wanted nothing but the best for me and was my biggest supporter. I keep fighting in her memory. She is greatly missed.

Now for a health update… I am doing well for the most part. The weight gain I have had from Trikafta is not fun but it is what it is and I have to endure it. I have been sleeping a lot. I take after my mom and grandma when it comes to being a night owl and sleeping late in the mornings. I have to get up to take my morning meds and do a breathing treatment but I have been laying back down when I’m done if I have nothing else to do. I have had some blah days mentally/emotionally. I do have SAD ( Seasonal Affective Disorder) or commonly known as the winter blues. It’s real and it sucks. I need sunshine…real vitamin D and warm temps. Granted here in Tennessee we don’t get crazy cold and lots of snow so I’m not complaining too much but I’m still ready for summer. I don’t miss midwest (KS/MO) winters what so ever.

I think that’s a good update for now. ūüėÜ I have a CF clinic appointment in March, I’ll update after that.

Until next time…

CF is not my friend today

We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday.  I realized my happy place, the beach, is hard for me to get to with all the walking.  I had to take breaks walking the boardwalk and then on the beach.  Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf.  I went in the water and that wore me out as well.  Holding myself steady in the waves was hard and took my breath away.   With all that said the beach is still my happy place even though it is hard on me now.  I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading

Update and depression talk

I guess I should update you all since my stay in “lock up” (aka the hospital). ¬†My creatinine (kidney level) is finally back down in normal range. ¬†It was .91 when I last had my blood drawn at CF clinic last Thursday. ¬†Yay for that. ¬†Even more yay, I can start to take ibuprofen, in moderation, for my aches and pains since Tylenol does nothing for me. Continue reading


Where has my joy gone? Where is the happy-go-lucky Shannon that we are all used to? ¬†Losing my mom seems to have taken my joy away on top of my CF progressing. ¬†I had a good cry fest over our trip to KC over Spring Break. ¬†Maybe it was because I couldn’t see my mom while there as usual. ¬†Maybe it’s because I’m just a wimp and got home sick within days of being in KC. ¬†I like the comfort of home where all of my medical stuff is so I have the things I need. ¬†Packing with all the medical stuff is a pain in rear. ¬†The anxiety of “did I remember everything.” ¬†I forgot one of my inhaled meds this trip, ugh. ¬†We were gone 10 days. ¬†I defiantly could tell a difference not having it but I made it through. Continue reading

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

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

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