Today, I just got fed up with all of these nebulizer treatments, but I did them anyway. I’ve been thinking about portraying what a normal day in my life looks like since I “get to stay home and hope people send me money,” which is an old line Beautiful used to say when I was just starting the home business. It’s a bit more than that now, but I suppose it still rings somewhat true, only further into the future rather than hoping they send money that day.
I looked up at the DVR machine this morning and it was 10:12am. I had made Beautiful’s lunch and made my omelet to down my huge breakfast and sent her out the door packing around 7am. After taking care of client work that didn’t get done last night when I passed out on the couch from a long day’s work, I started my nebs.
Everything is pretty organized now, so it is just a matter of making a stop at the fridge, the counter, and opening a cabinet door and coming back to the couch. This month, I’m on everything, so my routine includes Albuterol, Pulmozyme, Cayston, Colistin, and 7% saline. It’s a heck of a run, but I am ever so thankful that I don’t have a compressor and can do them all in my Trio and Altera in about 15-20 minutes if I don’t get distracted when one finishes. It’s really easy to put the neb down and just keep working in my line of work. If it weren’t for that technology, I’d be staring at 2.5 hours of nebs twice a day and an hour at another time and I would surely not be as compliant as I am.
By the time I finished my Vest, it was 10:45 and it was time to start thinking about lunch number one, also known by Tolkien fans as elevensies. I try to have second breakfast or elevensies every day, even if it’s just a Boost Plus. Lunches are pretty simple this week because my favorite Stouffer’s turkey dinners were on a huge sale this week, so we bought something like 8 of them. Eight minutes in the microwave and I’m good to go.
Some days, because of my treatments and doctors’ appointments, I literally have to look to see if I just got work done, brought in any money, or just ran from one corner of the world to the other to do errands that I’m blessed to be able to do so freely with my schedule.
I missed my afternoon neb slot, so I did them after dinner while we watched TV, but then 10pm rolled around so fast, it was time to do the whole list for my nightly session. That was when I got fed up. I just wanted to lay there and watch TV on the floor with Beautiful’s head on my chest, but no. I had to get up. I had an instantaneous internal rebellious moment, even though I’m the one who’s doing this site in the first place to make sure I stay on track.
Then I remembered how things used to be. Granted, I’m still quite bored and moderately annoyed in the photo above, but my mind was working on the following and remembering just having hiked and gone boulder jumping last week:
I remember getting winded taking out the garbage when we lived in the apartments.
I remember getting winded going up our stairs, let alone walking all over campus for the last few semesters with most of the classes on the 2nd and 3rd floors.
I remember never, ever being able to get into bed after Beautiful had fallen asleep and not having a complete spaz that shook the bed until she stirred.
I remember looking at my legs being so skinny and being embarrassed by my body because I could wrap my hands around the top of my thighs, which is a pipe dream now. I can barely go around my knee area now.
I remember wondering all sorts of things about the future because my lung functions would go so low before IVs. I remember wondering if they would always rebound to the same level after IVs.
That is why I am doing what I’m doing. It’s for her. It’s for me. It’s for us. I got up, got my meds, and took them like a man.
Glad to have found your blog. Enjoying it ~
Thanks for stopping by and taking the time to comment.
Great post. I certainly understand where you're coming from – it can be a daily struggle to remain “compliant” (I hate that word) but it looks like you're doing a fantastic job! Definitely something for me aspire to, so thank you for sharing this. ๐
“Thank you for thanking me,” as we say around our house. Now I'm going to
drag myself upstairs after falling asleep on the couch after publishing
that. ๐
Elevensies are good ๐ I always have a cuppa and a big stash of chocolate biscuits when I'm at home. Good on you for digging in and getting things done “Fatboy is definitely not a victim of CF!” I like this saying.
Thanks, Sean! I'll probably have cheese whiz and wheat cracker for elevensies today. Washed down with some sweet iced tea.
Hey again!
My mom wanted to know where you are getting all of your Pari Altera handsets, since you use them for so many meds.
I get them all from PSI – they lease me the unit because I get the meds from
them. Trio for colistin and Altera for Cayston.