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.