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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?

What CFers Do: Go to the Pharmacy

This entry is part 11 of 19 in the series What CFers Do
A Few of My Pills, Lots More Elsewhere

A Few of My Pills, Lots More Elsewhere

I’ve been going to the pharmacy for as long as I can remember. As a little kid in Findlay, Ohio, I still remember the pharmacy was The Medicine Shoppe and my parents joked with the pharmacist asking which of his kids we were putting through college by now.

I could probably take you to the pharmacy even though we moved before I started driving.

I remember there was a motion-detector in the corner by the door and I’d try to move around slowly while Mom paid to see if I could get from one side of the store to the other without tripping the light on it.

I remember my pharmacist at our local Publix after we moved here knew me by name. His name was Bruce and he called me “Mr. Petersen” when I was only 17 or 18.

Our Publix pharmacy next to our apartments when we got married had a quick-learning and personable college-age girl with cute glasses frames (that was her nickname between Beautiful and me, “glasses frames girl”) who never needed to ask my name. She saw me walk to the general area of the pharmacy and would pull anything that was mine that was ready. She even started to recognize Beautiful if she was the one doing the picking up for me.

This all changed when we bought our house and can’t seem to get perfect service anywhere, but we are giving one of the Publix pharmacies another shot now that they fired their pharmacy manager about a year ago. One girl recognizes me, but still confirms my name and address. We’ll get her trained, too.

CFers always train their pharmacies and pharmacists. We probably visit a pharmacy every week – sometimes 4 times per week, plus deliveries from mail-order specialty pharmacies. a couple of times per month. It’s a lot of Rx co-pays and a lot of “hey, you should recognize me by now.”

Dulcolax – Yet Another New Essential Med

Creative, funny marketing person!

I’ve hit a creative brick wall in everything non-essential, such as my client work. For someone with over 1,400 blog posts over the last 5 years, it’s pretty stinking weird to be out of words to say. This is the best I can do today before my Silent Sunday post and my What CFers do for Monday. At least those are easy to come up with!

This week involved the discovery that Dulcolax  is now an essential medicine for me, though I won’t go into how I found out. What matters most is that it’s strange how many of these meds I’ve started taking since becoming so compliant have now made themselves essential to normal functioning. The doctors have me on one in the morning and one at night, and I can say that not taking it because I feel like my body is behaving and it’s not necessary is not an option.

Some examples:
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Overwhelmed, but Blessed Nonetheless

OverwhelmedI’ve been overwhelmed lately. Plain and simple. We are still very blessed, as you’ll soon see. This will start off sad, get better, and then you can take the video at the end how you like. I may have cried (shhh!), but also was very happy at the end.

Things got pretty bad last week with my lack of appetite, anxiety, and general discontentment. When you have two people in a two-person house not feeling very well, things are bound to get blown out of proportion. We did figure out that I needed to stop taking pseudoephedrine for my stuffy nose since I found out I was stuffy because of small polyps and it was almost definitely making me anxious and depressed: two things that are very not me. I’m not immune to all puny medicine side-effects after all!

We aren’t sure how much the rest of the process of figuring out what is ailing Beautiful is going to cost, so that was adding to my anxiety as the one who has the most control over changing our income to help that out (by getting more work) or fail in epic fashion (by getting less work). STRESS!

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