It’s Been Forever…

This started out as my (our) journey with Epilepsy.  See… it says so right there in the URL of the blog. That’s what it was supposed to be.  That is what it was supposed to be.

So… I’m sitting here, proverbial pen in hand trying to wrap my head around all of the stupid days like no other.  I really don’t want any more of those days.  I really don’t.

I’m thinking of the litany of things that I don’t want to know.  RA… Sjogrens… Epilepsy… Aspergers… gastroparisis… COPD… and I wonder what all else.

Epilepsy… what started this blog… has taken its place at the edges of our lives.  Squirrel hasn’t had a seizure since 2010.  She and monkey butt have both gotten their licenses.  Neither are actively seizing.  Monkey butt hasn’t even taken lamictal in over a year.  It’s still there.  It is still a specter that haunts, but it only (currently) haunts the recesses and dark corners.

I hope it stays there.

RA/Sjogrens/Raynauds… those have their own special place in my other blog.  They are my burden, although they seem to be bleeding over into the lives of my children.  Monkey butt struggles a lot with his but he frequently forgets to take his meds and I don’t know how to help and not hound.

But here I sit… the cross I bought at Notre Dame Cathedral after we made it to the top and back down buried deep in my pocket. It’s wood.  It’s smooth edges are comforting.  It’s warm and it fits my hand.

This blog does not post directly to my Facebook page and that is good, at least for now. I may move the discussion later, after we have more answers but for now, it lies here not quite hidden but at least not where someone who is as scared as I am will quickly and easily accidentally run into it.  Sometimes hiding is okay.  Sometimes it is good.

This morning, as the house sleeps, I am very afraid.  Bear went to his December doctor appointment yesterday and they got to the point in his care that they are “ALLOWED” (that absolutely pisses me off that we have to follow the bread crumb trail laid out by the INSURANCE companies before we can get answers) to move on to the next in the series of testing.

Today we go for the Pulmonary Function test.  It was supposed to be scheduled in two weeks but when they took his oxygen levels at his appointment yesterday they moved it up to today.  In about an hour and a half we head out to where he will get this test done.  Today is Wednesday.  Tomorrow is Christmas Eve.  Monday we have a CT scan scheduled on his chest to see what it has to say.

He is terrified.  His nurse sister thinks it is not lung cancer… “only” COPD.  I’ve been digging.  And praying.  I’ve been trying not to vomit.  I’ve been trying not to cry.  I’ve been crocheting my ass off on a project that I dreamed up.  I’m trying not to vomit.  I’m trying not to cry.  The candle light flickers by my side.

So here I am… on yet another day like no other.  It’s a perfectly ordinary day.  The wind is blowing.  The street out in front of the house lays wet in the streetlights.  The dog (and my Squirrel girl) lay snoring softly in the next room.  My fingers and my knee are reminding me that I hurt.  I kind of didn’t need to be reminded, but there you go…

Keep me close today.  I think I need to be kept close today.

A little catching up to do… but I’ll get there

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!

The Eve of November

Here we are again… On the eve of Epilepsy Awareness Month.

Here come the facts and information!!!

Kaitlin’s Cauze Cookbook for Chelsea Hutchison Foundation (SUDEP awareness and prevention)

Kaitin's Cauze will be publishing a cookbook with proceeds going to the Chelsea Hutchison Foundation.  All are welcome to submit recipes to kaitlinscauze@comcast.net  You can have your name and organization/foundation listed with your recipe.  Would be excellent advertisement:)

Kaitin’s Cauze will be publishing a cookbook with proceeds going to the Chelsea Hutchison Foundation. All are welcome to submit recipes to kaitlinscauze@comcast.net You can have your name and organization/foundation listed with your recipe. Would be excellent advertisement:)
I’ve sent in my two recipes… and may send in the one for Pink Fluffy Stuff if I can make the stupid stuff come out right…

On My Angel Girl’s Mind

This is a note that she wrote last night on facebook…

It says a lot… and it makes me smile and makes me cry…

Hugs Angel Girl

 

Recently I stopped asking “Why Me”, why does it have to be that get diagnosed with everything. Instead now a days I ask myself “Why not Me”, to be honest I rather all this happen to me than too the ones I care about most. I know through everything that I am strong enough to overcome this and come out stronger (emotionally and physically) and I rather not see my friends or family have to deal with everything. They all have there own problems to deal with in day to day life that having something like a disability would slow them down and make life harder on them. Sure some of them do have Disabilities such as Diabetes, RA, Asbergers syndrum….ect. but that’s all they have, only having to deal with one thing out of there normal day to day rutiene (sp). Not saying that those arent hard to deal with I can imagine they are heck I could be diagnosed with something like diabetes from the protein in urine or it could be worse. What ever happens to me I’m ready to face it full force….I will not let any of my disorders slow me down.

Wise(ish) man once told me: “You’re expectations are the one’s that matter, keep challenging yourself.”

Meaning don’t let anyone tell you what you can or can’t do just because you aren’t mentally like everyone else, choose your own expectations and prove the assholes who told you that you can’t or stopped you from doing something because you were “different” and they were scared to let you do an obstacle; that you you are just like everyone else that you can do what everyone else does just as well if not better than them. Challenge yourself set goals that take time to accomplish never let someone who is supposedly superior to you stop you from challenging you strengths and getting stronger on your weaknesses. You are just like everyone else and you are strong and can do ANYTHING in the word you want too; don’t let anyone tell you otherwise!

The Saga Continues…

Although, not with any real drama… just… life goes on.

We are creeping up on a year seizure free (in just three more weeks).

We are starting driving school in just one week.

We are looking at improving SAT scores and figuring out where all to apply for college.

And we are going to a nephrologist to figure out what is really up in the kidney department…. which scares the crap out of me…too much protein in her urine… something tells me everything is all tied together, but getting the freaking doctors to all talk to each other is SUCH a treat and 2/3 or them are in the same GROUP… sigh…

 

The Face of Epilepsy

So… what exactly does epilepsy look like?  Do you think you know?  Really?  Is it a small child?  Is it someone who you could never be friends with?  No one who could be a leader or an athlete or <insert whatever>.

Could this be the face of epilepsy?

It can be anyoneShe is my face of epilepsy.  And I am incredibly proud of her.

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