Showing posts with label The Mystery Diagnosis. Show all posts
Showing posts with label The Mystery Diagnosis. Show all posts

Monday, August 31, 2015

Holy Crap, we're back!

Holy crap, we're back!


With all the craziness that's been going on, I haven't had time to sweep the cobwebs out of my corner of the internet lately. (Truth: I've had time but I've spent it doing other things...like eating chocolate covered pretzels, growing a  human being in my body, and watching the soft-core known as Outlander. No judging.)

So! Here we are with ALL! NEW! THINGS! That are really just commonplace regular things that are new to us. 

Things like: 
  • A new baby! Baby Thor will be here on or around Feb 11, 2016. Dani is...underwhelmed by the arrival of a baby brother, but very excited about finally being able to stay up later than anyone in our house. 
  • Dani is in Kindergarten! She's made the leap to a new school, and is crushing it. She's happy, adjusted, and basically being 5, Which, all previous ages considered, is my favorite so far. (Bias Revealed: The fact that all butt-wiping is now HER responsibility is not a small factor in determining my favorite age.) 
  • Kris' sarcoidosis is in remission. (Can I get a halle-fucking-lujah?!) His ACE levels, along with many other bloodwork components that don't need to be memorialized on the internet, are returning to normal. Clearly, this return to health can be attributed to his wife's nagging about eating his goddamn blueberries and not the heavy-dose pharmaceuticals he's been mainlining for the last few months. 
That's all the time I have today, more to come tomorrow and (hopefully) on a more regular basis. 

Wednesday, November 19, 2014

Let There Be Light

I've been reading back through some of my latest entries and...well. It's been a bit gloomy around this corner of the internet, what with the "mah poor husband" and "ya'll damn doctors" business.

I come here to write and release the things that need a way out, to cathartically exorcise my inner demons so I'm able make it through carline without yelling at the other drivers or possibly throwing the cupcakes I bought totally made for D's class at them.

I suppose this is my little indulgence. The one thing I get to do for me and no one else--write out all the things that need to be brought into the light, whether that is to heal them or celebrate them, With time being of the essence--always, always with the 'not having enough time'--taking an hour here and there to feel heard, even if it's just by my keyboard, means the world to me.

For right now, 'good enough' is my philosophy of parenting and living. Survival mode has trumped my neurotic need to be ALL THE THINGS to ALL THE PEOPLE and things are as 'good enough' as we can reasonably expect.

Pizza for dinner? Sure. Three times in one week? Good enough.

Laundry clean? Yes! Yet still piled into Mt. Laundry on the guest bed? Good enough.

Lunches made? Totally! Consisting of aforementioned cheese pizza leftovers and some fruit snacks? GOOD ENOUGH.

I'm trying to learn from the things we're going through right now. I'm having faith that they will shape me for the better. In the meantime, I am eating chili for breakfast (because I CAN and sending my kid off with a  hug, a kiss and cheese pizza.

She's happy, which means I'm absolutely doing good enough.
And now, some proof that she is, indeed, happy:



Wednesday, November 5, 2014

'Round and 'Round We Go, Where we'll stop...

Nobody seems to know.

We're in this chaotic, frenetic, survivalist pace of our lives right now and it feels like the merry-go-round is about to throw an axle from all the speed.

I wish there was a way to put all these worries on a shelf and dust them off when I have time for them. But, truthfully, there would never be time for them. 

We keep spinning around, and I'm beginning to wonder how much longer all this will go on. How long will we be wondering what is happening to Kris? How long will I feel this know in my stomach about his health? How long will it be before Dani realizes not everyone's daddy goes to the doctor as much as hers? Not everyone's daddy gets tired so easily? 

How many more fucking doctor's visits will I sit through and how many more medical journals will I sift through, looking for answers? 

I'd love to say that we're enjoying every moment we have together, but we're all stressed and tired and ready for some answers, already. 

It's hard not to scream at the doctors-- "ENOUGH! Enough with the vague diagnoses, enough with the condescension. Enough with waiting months for test results that should take days. enough with making it a full-time job to track your ass down for a simple answer. ENOUGH! Do your goddamn job and figure out what's wrong." 

Because, dear doctors, all your ass-covering, your hemming and hawing, your inability to or lack of desire to dive in and help us is wearing me down until I am less than enough. I am exhausted. I am scared. I am  frustrated to the point of tears and I am spending precious energy trying not to think about what life would be like without Kris in it. 

That being said, do not mistake my exhaustion for defeat or my fear for cowardice. I'm still here. We're still here. We're still fighting. Though our minds and muscles may protest under the physical and emotional strain of endless MRIs, bloodwork, scheduling, and exams, understand that we will never give up fighting for Kris. In the meantime, I'm going to read this, every morning to keep me reminded of how truly, sharply, beautiful life can be. 

Because dear doctors, as my dad and General Patton used to say, "Lead, follow, or get the fuck out of the way." Your choice.