My favorite shirt - WordCamp Orlando
Well, for me, it looks like this. Oh, you’re expecting a description of what I am doing, I suppose.
That’s a different story, and one that I’m familiar with what it’s supposed to be for me, but due to 1.4 million excuses was not a part of my life. This sums me up pretty well: I got a free book from a conference called Too Busy NOT to Pray. I’ve been too busy to read it for going on about six years.
That’s how my CF life has been regarding my treatments for as long as I’ve been independent. It’s been a mix of doing all of my aerosols for a while, some of them for longer, and none of them off and on for various periods. The thing with me is that I’m so resilient, I have to get a swift kick from getting sick, inspirational motivation, or a firm talking-to in order to prompt any lifestyle changes. I’ve always been that way. What can I say, my stubbornness is part of what’s kept me alive this long. I’m a fighter, but I haven’t been using the tools of the trade and chosen to go into the ring bare-handed.
Fatboy’s food and medicine regimen for now
This is subject to change Friday when I go back for clinic, but here is what I do every day:
- Albuterol nebs via eFlow 2x
- Pulmozyme nebs via eFlow 2x
- Colistine nebs via eFlow 2x bi-monthly
- AZLI study nebs via eFlow 3x bi-monthly
- 7% saline nebs via eFlow 2x
- Vest chest PT 1x for 30 minutes
- fish oil
- calcium
- ADEK
- Zantac
- Zithromax
- ZenPep 20 6-7 w/meals 3-4 w/snacks
- Boost Plus drinks 3x
- Advair 100/50 inhaler 1x
- Xopenex inhaler 2x
No word yet from the dietician. I guess she's not much for replying fast on Mondays... maybe she's like the DMV and doesn't work Mondays.
Here's how I match up:
* Albuterol nebs via eFlow 2x (xopenex 3x)
* Pulmozyme nebs via eFlow 2x (not right now)
* Colistine nebs via eFlow 2x bi-monthly (same)
* AZLI study nebs via eFlow 3x bi-monthly (tobra, used to be AZLI)
* 7% saline nebs via eFlow 2x (3x a day)
* Vest chest PT 1x for 30 minutes (same)
* fish oil (can't cause I bleed)
* calcium (yep, with D and magnesium)
* ADEK (don't agree with me)
* Zantac (nexium)
* Zithromax (250 once a day)
* ZenPep 20 6-7 w/meals 3-4 w/snacks (yep)
* Boost Plus drinks 3x (not any more)
* Advair 100/50 inhaler 1x (symbicort)
* Xopenex inhaler 2x
Interesting! All eFlow, also? Sure is the best thing for my compliance. I can almost certainly say that there is slim to no chance I could make myself do 7 aerosols/day at 30 minutes a pop. I know for a fact that I'd be non-compliant if I wasn't self-employed.