Wednesday, June 8, 2011

Medic Alerts and Advocacy- Thoughts and Musings

When I was little, I remember that silver chain and small oval pendant that lived on my mom's wrist.  I loved to feel it between my fingers and play with it when she wasnt wearing it, and it gets me thinking of all of the technology today, and medical advances.....and I came to a screeching halt.  A tiny disk of metal?

That medic alert wouldn't be enough for me.
The complexities of having a corn allergy are hard enough to advocate for, much less advocate for when you are having a hard time breathing! I started looking around for things on the internet and kept being disappointed... and frankly, more than a little bit frightened.  But I knew what to do.  I would ask my corny people.

Every day, I have questions and fears and hope and grief- learning to live this life, struggling with the thoughts knocking on my door, wondering if I can truly live a full life while avoiding corn- especially the smelly stuff in laundry detergent, perfumes, hairsprays, shampoos, deodorant, soap, hand sanitizer.....need I go on?
One night this week I got got fairly severely corned by the stuff.  I started choking, and was unable to eat  cramping and nausea.  I wondered what on earth was going on, and next time I ducked into the restroom to wash my hands, I figured it out.  Blue smelly soap in the soap dish on top of my corn-free bar.  And my sweetie (who washes his hands and face immediately as soon as he gets home to help reduce allergen exposure to me), had washed his face with the blue bar, and swept me off my feet to kiss me hello.  Three hours earlier.

An EXCEPTIONALLY honest mistake- especially when youre tired!  But it caught me off guard that something so small, so quick, could change the whole evening.  I enlisted some help in figuring out a way to make it not happen again-
As I said... every day, I have questions- and I feel really lucky to have figured out that Delphi Forums has a REALLY awesome community called "Avoiding Corn".
A link, for your viewing (and clicking!) pleasure:

 I've met some amazing self-declared "corniacs" here, and gotten incredible support, suggestions, long-distance hugs, much-needed laughter about our antics, and I believe, have made made some truly life-long friends. I highly recommend you check it out. it might change your life

So, I ventured on to Delphi, started talking with other folks, hearing ideas and asking questions.  I promised I would cross-post, so here it is:

"Kristy told me of a medic alert with a flash drive, and it got me thinking about what style is appropriate for which people in what situations.  Here is my stream of thought from another thread:

"As I figure everything out, being able to update a flash drive ould be a big help. I'm glad this is a bracelet... I'm not sure that EMTs would take the time to go through my purse and find my keys for me if I asked - the disoriented ramblings of a woman in an allergic reaction- 
"She wants her KEYS?"
I can hear it now. Remember that in a crises in the ER, doctors and nurses are trained to just try to keep you calm, so communicating where to find your information is hard, as they often only have one ear to listen to you, and one ear to manage information coming from machines, techs, xray results, the person drawing your blood, the nurse in charge of telling you things will be fine, (and just to relax and breathe), the environment around them in case someone more critical comes in, AND.. their entire human and personal life!  This is SO frustrating as a patient, and frequently, the doctors dont feel any better about it. Especially if they accidentally hurt you.

This isnt an excuse for them, but I want to be able to have something ON me at all or most times. I would rather have them hear about my allergy numerous times... my ramblings, AND a coherent, pre-written statement from me, in my corn-free brain.  I want something on me because I know that MY fuzzy head might not remember my purse, and most EMTs consider a purse lower priority than your health... and take care of you first. Which, as we know, can be MORE harmful than if they had the correct information in the first place.  But if they stuck you with a dextrose IV and gave you corny benadryl in order to allow you to come to reality enough to TELL them youre allergic... youve already been corned.

Sorry, this is more of a thought process going on... I'm not trying to make it sound like a lecture, I'm stream-of-thought typing :)

I guess that medic alerts and designs are personal for everyone. If you have family members who live with you or spend time with you who can advocate, you might not need as obvious of one. Living alone, I am guessing that one attached to me might be a better idea. I also look and sound about ten years younger than I am, so I could imagine trying to advocate for myself in the beginning might be MORE about getting an emergency crew to notice that I am NOT fifteen, and have been taking care of myself by myself for a long time now, and the information they need to get needs to be gotten from ME, and not my mother or father. 

Thats another thing thats a pain- looking so young, and being five feet tall. I love it, it allows me to model and act with a really big age range. Which is GREAT, when you need work. And being small really helps in emergencies (plus I love my perspective of the world), but it sure doesn't help at first glance. Especially if I'm scared and crying. When I lose it, I revert right back to being exactly seven years old, and struggling to be an EFFECTIVELY COMMUNICATIVE ADULT is really, really, REALLY hard when you sound like Minnie Mouse.
Yeah.... I know :)"

So I wanted to bring it up!  These are the awesome links kristy provided to me for USB bracelet medic alerts:

Also, a good suggestion on getting the ball rolling BEFORE you need help, also by Kristy :)  (Can you tell I think her ideas rock?)

"I would suggest that you sit down with your doctor and get a plan of action written up for when you are in distress. See if you can get a medic alert bracelet that links to this action plan that explains your particular reactions. I believe you can specify a doctor's name and number so make sure you list him. Keep copies of this on you at all times to hand to medical personnel in an emergency. There are also medic alert bracelets with a flash drive that you can load all this information onto....You won't always be lucky enough to have someone there to advocate for you and doctors can be so stubborn when you tell them something they've never encountered."

What are you doing to help yourself, in terms of documentation you have WITH you?  Do you carry around a packet of information in your purse?  Do you have one prominently displayed in your car in case of a car crash? (I recently was reminded that when airbags deploy, that lovely white dust they spray all over the place is cornstarch... please remember and drive carefully!)Do you trust your kids to know to request a dextrose IV?  If you live alone, what have you done to prepare for the "just in case" times?"

I've heard some pretty wonderful ideas.
I'd love to hear from you, too :)

In health,

Tuesday, May 24, 2011

Socks, Food, and Inner Demons


Alright then!

First, let me say this: socks rock.  hence my last blog being called StripeySocksSansSandwiches
But for some reason, alliteration is REALLY hard to get across, and it wasnt slipping off my tongue nearly so smoothly as the way my inner demons present themselves.  Thus, a far more interesting (and a bit more gremlin-y) blog.

My demons live openly in my life, prancing around me, taunting me with their pointy little ears, reminding me:
"Ice cream!"
"Mexican food!"

.. that last one is rather persistant.
Food allergies are like that.  The MORE allergic you are... the more they can taunt.  Some days it's all I can do to keep from sinking into a puddle of crying misery, wallowing in the pain and unfairness of it all, demons clambering over me like children on a new swingset.  These guys are tough, too. Once they get you down, or you get dosed, and spend a few days in bed, they all crawl to sit on your head.  Like a giant HAT.. gremlin upon gremlin upon gremlin, until it's quite absurd looking- a totem-pole of inner demons, squatted down upon my head providing pressure, sitting on my chest and making my breathing more shallow, and lined up one by one down my legs, which go nowhere.

And some days they line up, ready to tackle me... but instead of Lucy, Linus is holding my football.  And I run and my little gremlin football connects....out of the field.

So this is my life, my diary, my pep-talks and kick-butt moments!
But... its also me, with my closet full-o'-monsters (dont even think about it.. ive already patented it ;) )

and our adventures.  So grab a hat, bright blue heels, and of course, a pair of crazy socks.
Because my life may just always be as one of the nutshell gang
(maurice sendak Should be an illustrator for my life.  Get back to me on that if you're reading, maurice ;) )