1.22.2009

turn on the stupid filter!

People are funny that way.


Not knowing what to say. But saying something anyway. Sounding stupid.


I know...cause I is one. Which is why I always always preface advice with...


I suck at this...


And then blabber something that shoulda been caught by my stupid filter before it left my mouth.


I was thinking today about some well-intended things I've heard since Trevor's diagnosis last year.


He looks SO normal...


I know lots of kids that couldn't do xyz at that age...


Oh...it's just the spasms (this by a nurse with no clue during in-take)


Let's insert a little game here...




You think of a Christian cliche...




And I'll tell ya who said it to me! I've wondered if it's the x-missionary thing? But maybe you've heard em' all too?



::wink::



Then there was the classic emailed article about how baby-wearing cures seizure disorders! Seriously!



I've heard a lot of stuff. Stuff that was said with good intentions. Stuff that slipped through stupid filter cracks. And I try to be gracious. Cause Lord knows I've said my fair share of stupid! And besides...it's all about awareness. Dialogue (even when grounded in stupid) helps foster opportunities to spread awareness.


But...if I'm having a grumpy day...


...and I don't really give a hoot's hoot about awareness...


I blog instead.



::wink::



Today (if you're wondering) isn't a blog it out day. I've taken up Wii-ing out my grumpies!



But this morning I found an interesting comment in my inbox...


You should get him tested for Celiac commonly associated with Myoclonic seizures. I have them as well. I would get thousands a day. They are a symptom of an autoimmune disorder. Mine are controlled now by going on a gluten free diet, completely med free...



And even though I tend to be slow jumping on the hype-wagon...I'm thinkin' it's worth a conversation at least. It seems I'm having an open-minded day. We have Dr. Neuro appointments next week. A simple blood test couldn't hurt?


I know...I know...


I could just go gluten-free & skip the jab. But I'd rather know first. Take away yummy food later...


Anyway...my Wii trainer is hollering at me...


better go sweat it out!


(But feel free to detox the unfiltered comments you've heard here...your secrets safe with me!)

8 comments:

Adesta said...

OMG Danielle!! I should have thought of the Celiac thing myself. My brother was diagnosed with it when we were younger. I also have a few aunts and an uncle that have it and while only my one aunt and uncle suffered clusters before diagnosis, (at least I don't remember my brother getting them, I was like 12 or 13 at the time) I never ever thought of that. I am so glad that someone else mentioned it to you. It is SO definitely worth the test. And please, be like my father was, and demand the doctors test for it. The doctors wanted to blow my brother off because when he was diagnosed not much was known about celiac so they didn't think he could possibly have it, but thankfully my dad insisted as his brother had it and the test came back positive!!! If your curious about celiac before the appt's, check it out on the webmd.com site. I heart that site! :) Good Luck!!!

KC's Mama said...

Holy Cow, I got a near identical message today on KC's youtube video!! Unfortunatlly KC has been tested for Celiac and we already tried the gluten free diet...but...if you end up going that route there are a lot of good gluten free foods. And lol I totally agree about the stupid filter. The day KC was diagnosed someone told me "Well, no one said life was supposed to be easy." Wow. Talk about stupid! Anyway, good luck. Take care.

Karen

~Mama Skates~ said...

i sooooooo need a stupid filter...u don't know how many times i've walked away from a conversation, rolling my eyes - at myself! i'm awful for continuing to talk, just to talk - because i really don't know what to say, but i feel like i need to say something - ugh!

Marissa said...

Check your records- I'm willing to bet Trevy's been tested already.

Monica, James, Connor McGuire said...

Oh we could write a book on the stupid comments we've received.
~"it's because you are special"...well thanks but if special means going through years of crap then I rather be un-special

~"it could be worse"...thanks i already know it could be worse but it could be a heck of alot better

i could go on and on, but i know that people mean well & it would be unspecial of me to talk bad about them...(hee hee)

i haven't heard the one about the baby wearing...that cracks me up! We had Connor tested for celiac after a friend saw a similar situation on Mystery Diagnosis...he didn't have it...if it could've only been that simple. {{hugs}}..monica

JSmith5780 said...

Stupid filter... LOVE it.

I think what makes it harder for people to know what to say is because they have NO clue what IS is.

Re: celiacs. We had Connor tested (not Austin) but his was because of gastro/weight issues. He still has weight issues which we are going to talk to the ped about. The poor kid eats like a horse and has only gained 1/2 lb over the year! He feel out of his bed last week and had six little bruises on each of his left ribs because they protrude so much. I felt HORRIBLE!

Adesta said...

Jen, does he have a high metabolism? That is the reason I don't gain weight like normal people. I am constantly moving, even while sitting and therefore constantly burning calories.

therextras said...

I'm taking comfort in that I am among many who have tasted their shoes (older cliche for lacking a stupid filter). chkl.
Barbara