Skip to main content

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 them.lol)

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!

Comments

Popular posts from this blog

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...