Sunday, June 1, 2008

No eFlow :(

(I had to wait a few days to post this because I was so upset.) The CF coordinator returned my call on Thursday and said they will not prescribe an eFlow for me because it hasn't been FDA approved for certain medications. Thus, my dreams of actually having time to spend with my husband during the work-week were quickly crushed.

This news was especially hard to take because I am currently in the middle of an "on" cycle of colistin, which has been taking me a half hour to do lately. This means I’ve been spending two hours a day doing my meds. I try not to complain about this too much because I know I am blessed to be so healthy, but today is my complaining day :P

The thing about being so healthy is that no one really sees me as having CF. This is great most of the time, except that people expect me to have the free time that every "normal" person has. I don't skip happy hours because I am anti-social. I don't decline putting in the extra hours at work because I am a slacker. I didn’t give up learning the violin because I am boring. I physically can't do those things because I have to take care of myself. And it’s gotten harder to squeeze things in as more meds have been added to my regimen. Here's my typical weekday:

6:30 am - alarm goes off
6:30-7:30 - do my meds
7:30-8:15 - get ready for work
8:15-9:00 - drive to work
9:00-5:30 - work
5:30-7:00 - drive to the gym and work out
7:00-7:30 - drive home
7:30 - 8:00 - take a shower, check the mail, say hi to Greg & the cats
8:00 - 9:00 - eat dinner & clean up (that Greg has cooked for me)
9:00-10:00 - do my meds
10:00 - 10:15 - get ready for bed
10:15 - in bed

So, during the week, I have about an hour and half a day that I get to talk to Greg, and there is no time for working extra hours or hanging out with friends. I seriously do not know how CFers with children have jobs. There is no way on earth I could ever do that!

Luckily, on the months I am not taking Colistin, I get an extra hour of time each day, and I feel much less stressed. I also usually take Thursdays and Fridays off from working out, so I have an extra hour to play or run errands on those days. I am just very stressed a lot of the time because I can't live up to expectations that others have for me, or those that I have for myself.

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