Here is the wonderful Camelbak that joins my wardrobe from time to time, I wear it 24/7 when I do wear it (or I will put it's contents into a purse if it will look to funny to wear, like with a dress) and it weighs 10lbs (I have weighed it) what do you ask is in it?????
A bag full of IV antibiotics, you see I am super special! Not only when I am on IV antibiotics are they continuous (meaning I don't stop them, they aren't the kind that you just run through every 6 hours for 30mins. or so, not me I get continuous!)and that's not all folks, it's not one but two!!!! that's right, two continuous antibiotics, and the cherry on top??? one of them needs has to have an ice pack with it to keep it cold!!!! I guess the bright side would be that the other one doesn't need an ice pack?
When I was working in the salon I thought on numberous occasions that I should wear it in the front under my smock and just pretend I was pregnant, I think I could deal with the 'when are you due' over the 'why are you such a freak' much better. Again good side: I was able to make a lot of people more aware of Cystic Fibrosis?
And boy am I a hoot now, I not only wear this big fanny pack but now I also carry around portable oxygen too! Speaking of which, when we went to R.E.I the other day we were waiting to talk to the employee with the funny shoes and this boy about 9 or so walks over and stands right in front of me and just totally stares at my nose!!!! I wanted to throw my hands up and shout 'BOO'!!!! it was actually really uncomfortable because I know I don't look 'normal' and usually people will stare for a little bit but I can handle that but this boy, man I wish I knew where his mother was because if I had the guts (which I don't I would never do this) I would ask her why she hasn't taught her son manners!!!
So that's the story of my 'bag' I just got off my antibiotics after four weeks and hopefully will stay off of them for awhile.
6 comments:
Hey, thanks for the comment. You've been so nice and I was wondering how you found my blog? You look familiar and I was just curious if I knew you or if you just found my blog randomly. We certainly have a lot in common which makes it all the more of a coincidence if you just found my blog randomly. I also do hair and well, the cystic fibrosis thing well I have a story but that could take all day. Let me know, and if I knew you were in the hospital, I wouldn't have let you be that lonely....there would definately have been a call or a note from me!
Cystic fibrosis affects the lungs, right? Extra mucus, right? (I am trying to reach back in my memory to course I took in university). Why do you need antibiotics 24/7? Are you super weakened against bacteria? Interesting....
Good post though. It must have taken some time to get used to that belt!
I remember my mother teaching me not to stare at people. I was probalby in grade one and I saw someone who was REALLY handicapped for the first time. Surprising the boy didn't know not to stare by age nine.
If it makes you feel any better, we've had those talks with our kids. Over their head for my boys, but I think Isabel understands.
Isabel's funny though. She thinks anyone with a handicap or special circumstance like yours is so cool because she understands what's going on a little better. When we're shopping and she's sees someone in a wheelchair or something she gets so excited because she knows they are extra special. (We explained to her that Heavenly Father gives extra special challenges to extra special people because He knows they are strong.) I think you are extra special!
What a great post! Thanks for sharing with us. I always try to teach my kids not to stare as well. Ryan and i have talked to our children about how all of us are Heavenly Father children and some of us were born with special challenges. like my son Jakob that has some health and learning challenges
I'm so glad that I found your blog I love how you really share whats real in your life. I wish I could take it away for you I'm sure your sick of being sick and feeling different. Hang in there. My little girl has asthma and I always tell her that heavenly father knows her and he let her have it because she is strong and can handle it. I always tell her heavenly father will strenthen her. Still if I could I would take it away for her. Thanks for sharing you feelings.
We are just now starting to talk to Mya about the staring. She is only 3- so her curiosity is justified and is really only that, curiosity at the difference in others. But at 9? I always try to be the 'bigger person' and engage children when they stare because you know they are just curious- use it as a teaching opportunity. But you aren't always in the mood for that!
Here's hoping for a break with the bag!
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