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The Ebb and Flow of Cystic Fibrosis

State of FluxThere is a song that’s sort of famous, written and sung by some guys from across the pond from me. To Everything There Is a Season. This is the season of thinking about seasons for Fatboy. They practically stole the lyrics from the Old Testament, and it was a quick topic of discussion last night at our small group – one that Beautiful didn’t get to go to because this is her season of not being able to function with whatever is ailing her like allergies from Hell. I feel like we are in the middle of several seasons at once.

It’s a season of feeling helpless. We have no idea what is bothering Beautiful’s nose so much, but she has lined up an appointment with an ENT/allergist Friday. Hopefully it is a productive consult instead of a (who knows, $200) consult that leads to several more expensive appointments before getting any answers. She just came home early and went up to sleep because her medicines were rendered useless upon arriving at work on Monday, so maybe it is workplace related.

Then there is the season of hope and ambition. Business is up and down, but September starts new things, as I begin a new venture teaching WordPress webinars to musicians and recording artists so they can do their own websites. I’ve never taught a webinar. I’ve done training calls, but never anything where I carry on for 45-60 minutes and then have a Q&A time. It’s very exciting, especially given the income and exposure potential. People just need to show up and I need to not suck.

We are also in the season of new friendships. Beautiful just began blogging in May and the combination of this site and hers has really increased the number of CF contacts we have. We’re seeing blogger after blogger getting their double-lung transplant after about an average of 2 years on the waiting list. Thankfully, not one has not made it to transplant or had an unsuccessful surgery or post-op. We are also close to meeting with another couple who live about 20-30 minutes from here and see the same doctor. Hilariously, we both asked Sue on the same day what precautions we need to take in a face-to-face meeting at a restaurant. I’ve never felt the need to make or have CFer friends and have gone as far as purposefully avoiding it my entire life because back in the day, CF kids were dropping like flies. Who wants to make a friend only to lose them the next year? I think we’ve come far enough to make a couple of friends.

What season(s) are you in?

Comments

  1. Anonymous says:

    We (had) have a very large family. Growing up, I spent a lot of time with my Great Aunt and Uncles because I spent a lot of time with my Grandparents who spent a lot of time with their brothers and sisters. Still following? 🙂 So I never called them Great so and so, it was just Aunt or Uncle. Heck, even my moms cousins ended up being Uncle or Aunt. I swear I’m getting to the point. My (Great) Aunt Helen passed away this Sunday. Her funeral was today. When we were at one of her sons, “Uncle” Kris, I met a new CF’er. I was getting Madison a plate of food when I looked up and saw “Cystic Fibrosis Foundation” logo on the shirt across from me. I am not shy by any stretch (hope you figured that out!) and asked, “How are you connected to CF?” The gentleman smiled and said, “How are you connected to CF?” I told him my husband had it and he pointed to the young woman standing next to me and said, “My daughter has it and our son.” The shirt he had on was a golf polo from the event that was held here last week. We chatted for a long time as you can imagine. Since CF isn’t outwardly obvious, I’m glad he chose today to wear that shirt. His son is 28 and I think hearing that J is 32 gave him some hope. His daughter had just gotten out of the hospital. Sadly, she is not very compliant these days and her hospital stays are becoming more frequent. Any way, my point in this rambling is, I am not afraid to meet other CF’ers because like I told Ronnie Sharp, I’d rather been blessed by what someone has to offer and have that forever than to have stayed away and missed out. Maybe someday we’ll get the fun chance to meet you and Beautiful on a trip to Florida.

  2. That’d be fun. We do live in one of the vacation hot spots of the world.