Shortly after I wrote my last post, I met up with my Boston CF doctor. She agreed unequivocally with my other CF doctor.
We don’t have the data. We don’t know how you will be in ten years. We can say you aren’t necessarily harming yourself by doing all these meds, “You do a lot of therapy meds,” my Boston doctor said.
I do because I don’t want any regrets. I don’t want to say, “I should have tried harder.” Slash x number of years off of my life.
I like to push myself. I also think it’s in preparation for the unknown. I like to physically build my strength on the outside, on the inside, and the space between.
When I was ten years old, I ran and jumped hurdles in the end-of-year track and field right, just as we all did. I couldn’t run the way I wanted to. It really annoyed me. I did fine but I lagged in at the times I wanted, and I knew I could do better.
I made a commitment to try harder that year which meant I needed to run more. The month or two prior to next year’s track and field preparation and games, I got up and ran around the block every day. It was kind of a long and windy block. Pound, pound, pound, shoes hitting that road, around we go. I did some exercises in the garage as well to warm up and stretch afterwards. Then at school, we were running our mile runs and practicing games for the big day.
I knew I wasn’t going to be a star athlete by any means. But I knew I could do better.
That year, I didn’t win but I got second in the relay. I picked up my legs and feet faster than I ever had, and it felt fucking awesome. The fast girl that always wins, that year had to work a little harder as I was on her heels.
The following year, I gave two shits. I did the best I could. I proved to myself if I really pushed, I could run. We were going to junior high the following year, so it didn’t matter.
As my Boston doctor and I were chatting, we both pretty much came up with the plan that if I decide to pull back, I will come in and do my PFTs monthly, and then she said cultures as well.
“Doing your antibiotics won’t change your FEV1[1] at least six months. It’s technically not giving you more lung capacity or by not doing it, taking it away. It’s fighting off infections that can harm you thereby hurting your lung and lung capacity.”
The idea of going in and doing more PFTs is exhausting. That idea is more exhausting than me doing my antibiotics day in and day out.
I am probably going to remain at status quo. I will do 28 days on and 28 days off continuously unless the doing is causing harm in some way.
Two weeks on and two weeks off, I just don’t think it will work for me. Too much daily work and possible confusion.
I will entertain the idea of leaving my antibiotics at home while I travel. That’s a real maybe.
Fear and guilt meshed up is a shabby regretful life.
A shadow of your true self.
Step up.
Step out.
Push forward.
Allow the long days to become long years. Oh, we all hope.
No one can do it but me.
No one can do it but you.
Travel Tips and Gear!
From previous post, I wanted to show you some of my travel tip links/videos and gear.
Aly Smalls is awesome. She has the best luggage tips. I did a deep dive and found the best luggage for myself. She also has an airline spreadsheet. Super helpful!
I chose my bag from watching this flight attendant review and give her own tips. It was her final advice at the end that changed my mind.
Away Together videos are super thorough and I like his point-of-view. I chose my backpack – which I love because of him.
My Favorite Carry-on!
Travelpro Maxlite 5 International
Why Rollaboard?
- A rollaboard is the most ergonomic way to travel through the airports. So light weight! I love it. It does not hurt my wrist. Spinners are an unnatural way for your wrist. I have actually hurt my wrist in the past from a spinner.
- All airline attendants use rollaboards. They also you a carabiner to hook more bags.
- Low rates if no rates of theft because people love their spinners asi t wrecks your wrist. The flight attendant video changed my mind on rollaboards.
- This luggage is only slightly over 5 pounds!
- Can fit in pretty much all international size and weight limitations. Airlines have gotten stricter and you need to carry smaller luggage. International flights are strict with weight limits as well.
- Soft side! More give in the increasing packed airlines. No give with the hard shell. Soft side gives you wiggle room when you need it most!
My favorite Backpack:
Tomtoc T66 Liteway Travel! Love, love, love!
- The key is the shoulder clip to support our torso. It’s easier for me to wear my backpack then hook it on my luggage.
- It’s like a Mary Poppins bag – you can just fit so much it is insane!
Travel Cubes!
Some of my favorite travel things! There you go!
[1] FEV1, forced expiratory volume air you can force out of your lungs and airways within one second after taking a big breath. If your lungs are healthy, more than 70% of the air leaves your lungs during the first second.