Sunday, September 23, 2012

Day 1: Mostly a Success. Who is Counting?

Day 1: Success (sort of)

No, I won't continue to count the days I do well. haha. I would get annoyed and frustrated the first day I mess everything up. I know people who count the number of days in a row that they do all their meds. I will say this once. It is almost completely impossible for me to do ALL the meds and treatments the Doctors have recommended. So I don't keep tally and just try to do the best I can. When I get really behind and can tell my breathing sucks and my weight is dropped (like lately) that is when I kinda start fresh and overhaul my daily routine. This happens at least once every 6 months.

Please don't misunderstand my following list. I don't mind doing everything and I'm not complaining. But, I want you to see my life through my eyes and understand why sometimes I get behind on med stuff and have to "reboot" my routine.

For example: In the mornings I have to unhook to my feeding machine. I take over 15 pills, 2 inhalers, 4 nebulizer/breathing treaments and do a vest treatment(taking around an 2 hours total).

In the afternoon I do 3 more nebulizers (taking 45 minutes)

And at night I do 3 more nebs. Plus pills, plus make stomach feeding and hook up to a stomach feeding machine. (another hour)

I'm hooked up to a stomach feeding pump for at least 7-10 hours at night, getting as many calories as possible. (I'm a very active indivdual during the day. I probably "dance off" a lot of

Plus, whenever I eat I take pills (or I am supposed to). I'm supposed to jog every other day. I have to get at least 6 hours of sleep, less than that two nights in a row combined with not enough calories= "seizures". (I don't shake, I just go numb/and can't hear well, sound doesn't process well. I have to lay on the ground and wait. A few lucky friends have wittnessed this, one of them had the fun of caring me into my house from his car. If I'm going on a date or something, I always make sure to sleep a lot the night before. I can't imagine this happening to me on a date...Good Gravy- horrifying.)

I order meds or medical equipment at least every 3 days from one of the three pharmacies I use. Add to this Diabetes tests ,blood tests, etc, mediport shot, I have a couple of those every month.

So I plan, I plan ahead as much as possible. I try to fit in my classes/school, work, extra-cirriculars(theatre, show choir, etc), my volunteer work (like CIDF, mobile meals,etc), and try to have a social life.

HOWEVER, today was better than the last week. I did 4 nebulizers and ate 3 meals, and did extra feeding last night (cuz I knew I'd be working the Banquet tonight- which I really enjoyed).

[pictture: of the amazing crepe I got today at the French Soiree uptown at J'adore. YUM]

Baby steps. Tomorrow I don't work, so I will get more "med stuff" done.

Rebooting in Progress! YAY!

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