Friday, November 9, 2012

#NHBPM 9 of 30 - the perfect care package

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As a military spouse, I like to think of myself as a sort of professional care package maker. That's what you are supposed to do when your service member gets deployed - send them care packages of all the things they can't get wherever they are in the world. Things that remind them of home, pictures, notes, letters, etc. In the past I've sent "generic" packages filled with those type of things but as the deployments passed I got more creative and started with theme packages. A particular favorite was Thanksgiving in a box; complete with turkey/pilgrim decorations, table setting and centerpiece, canned turkey, instant stuffing and lots of other goodies. I was pretty proud of that one - and my husband told me the other guys in his unit were impressed too.

So, the prompt for today is a care package to a patient with Crohn's disease. That's just another theme for me to work from! I'm going out on a limb and moving forward on the assumpmtion that this patient is newly diagnosed. I can do that, it's my blog post.

First thing is the link to CCFA as well as contact info for the local support group. I wish this information would have been given to me upon diagnosis - I kinda just go thrown to the wolves. "You have Crohn's disesase - here is your medicine, see you in 6 weeks." Oooookay?

You'll also need a butt load of patience. I'd probably make a cute little jar and decorate it to reflect patience and fill it with cotton balls or something of the like. This disease is not an easy one; everyone's Crohn's is different - reacts to different medications, flares for different reasons, runs the gamut from mild to extreme. It is a learning process for everyone - including your doctor so be sure to have patience.

Knowledge - arm yourself with it. I don't want to dictate what ways you gather that knowledge so I will just make a few suggestions. The internet is full of messageboards, blogs and Facebook pages all dealing with IBD/Crohn's disease. Google it and then go reading! Find somewhere you feel comfortable and become an active participant - even as the "new patient" you have much to offer those who may not have a definitive diagnosis yet. Read, read, read! Books, articles, research studies - the more you know the more empowered you will be. The body you have (no matter how screwed up!) is yours, no one else cares as much about it as you do so UNDERSTAND what is happening with it so you can have informed discussions with your health care providers.

Speaking of health care providers, if you don't like the one you have take control and seek out a new one. This is a great time to use that CCFA link or ask on messageboards for people in your area to make some suggestions.

Sometimes I get emails for free subscriptions for magazines. I'd sign you up for one because you may need reading material in the future. You know, for all that time we spend in the bathroom. Or waiting for a doctor's appointment. Or during an infusion. Or a lot of other things. If I could afford to send you a Kindle I would - but damn, my husband serves in the military we're poor.

Coupons for toilet paper. Not the cheapo cardboard kind either, nice fluffy stuff. Personally I'm not a fan of any toilet paper with aloe or other stuff. I don't need anything trying to make things back there worse - just plain ol' cushy TP. Flushable wipes too. And you don't have to get the expensive name brand - I've tried 'em all and the store brand is just as good in this department. Again, stay away from the ones with added stuff like aloe or scent. In my opinion of course.

Diaper rash cream or zinc oxide or something like it. Just like a baby gets sensitive back there, so can you - especially in a flare or when Crohn's has you in the bathroom 30 times in a day. Hopefully you won't have to use it - but if you do, you'll be glad you have it.

And a little inspirational plaque or something like it. Just something you can look at in the bad times and get a little pick me up from.

And my phone number for anytime you need to talk or just need someone to listen.

Find your silver lining and be awesome!

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