Lately, I have had some conversations about my schedule that made me realize that unless you live with me every day, it is a little hard to understand. Yesterday was a good example of a typical day although things got rolling a little later than usual. I would typically do a treatment before I get ready so I can workout when my daughter is at school but I am still on the lay low plan.
8:00 Shower and get ready for the day. Take morning blood sugar and use inhaler.
8:30 Get my daughter ready for the day and get her breakfast.
9:00 Drive my daughter to school.
9:30 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 1, 2,
and 3
10:00 Do nebulizer 4 with a different machine in a different room and eat some
breakfast. Also, take morning meds and insulin shot.
10:30 Type up some notes for a meeting that I am in charge of at church tomorrow.
Email reminder to folks about the meeting to call a new Pastor.
11:30 Leave to pick up my daughter at school.
12:00 Go to the grocery and the bank. (Note to self to order groceries online.)
12:30 Put away groceries and have lunch. Hang out with daughter and return
calls. Run a load of laundry. Clean up papers the dog shredded. (Note to
self to file.)
2:30 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 5 and 6.
3:00 Do nebulizer 7 with a different machine in a different room. Check blood
sugar. Make and eat afternoon snack.
3:30 Play Jr. Monopoly with my daughter and teach her how to be the banker while
playing squirrel with the dog so he will leave the Monopoly board alone.
4:45 Drive daughter to choir practice and make copies for church meeting.
5:30 Eat dinner at church since I realized that I forgot to put the roast in the
crock pot. I also forgot to cancel my standing Wed. night dinner
reservation at church so it looks like we are having pizza today.
6:00 Make dinner for my husband since Plan A didn’t work out today. It is good
that he likes leftovers.
7:00 Wait for CMA Awards with my daughter so she can see Blake. Console my
daughter after discovering that they are really on next week and explain
that Blake needs more time to practice. Switch laundry to dryer.
8:00 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 8, 9,
and 10.
8:30 Do nebulizer 11 with a different machine in a different room. Check blood
sugar. Make and eat evening snack. Load nebulizers and dishes in
dishwasher so there will be enough for tomorrow. Hand wash the special
nebulizers for the special machine so they can air dry overnight. Fold the
laundry. Use inhaler and take evening meds.
9:00 Put my daughter to bed. Start again tomorrow.
Some of you might read this and wonder why I volunteer. The truth is that I volunteer for my own sanity. I have days where I think either my oxygen rate, my meds, my blood sugar, or maybe just my Mom brain is starting to get the best of me. A good example was rushing from the U this week to get my daughter to dance on time for observation day. I remembered to pack the tights, the tutu, the snack, and even the video camera. I managed to secure one of three seats in the front of the room. I was feeling quite proud of the whole deal when the video camera decided not to work. Apparently, I had plugged it in to charge it the night before but I hadn’t actually attached the battery to the camera so it wasn’t charged. The time that I volunteer helps me remember that I still have something to contribute on days when I really start to wonder.
So, while there are a LOT of other things that I would like to do and a LOT of other people that I would like to see, this is my reality. I am no longer at the point in my lung function that I can choose to miss a treatment or a vest. I have said it before but it is worth repeating. The reality is that it isn’t optional. I don’t get too far from home without a lot of gear in tow. By 2 or 3 in the afternoon, my lungs are ready and waiting for some attention.
I like to make lots of plans but when I do that, CF raises its ugly head. A good example was my plan to take my daughter to Disney World in February. Instead, I got a picc line and five months of IVs around the clock. I did make it to Florida in September but the road there was really long and we earned every one of those glorious days.
Blessings,
Cindy
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