Madhouse

I hate that I homeschool.

Scratch that.

I hate that I’m so sure that I SHOULD homeschool my children. I hate that I’m so aware of my principles and values and of how there’s no affordable (read-government) school that has such values or principles.

I hate that I’m sick.

I got my results back from last Friday. We are meant to be moving me to Enbrel injections (Anyone with any experience, chime in!) and I had the tests done for baseline. And I’m sure to make sure I’m healthy enough to begin.

Now, last week, I told my friend that my kidneys felt sore.

Yesterday, my results returned and I have mild kidney function impairment. I thought maybe I was crazy last week, but it seems you CAN feel pain when your kidneys start struggling.

I won’t even go into the emotional and mental ramifications of that result. I was expecting the one result -and therefore happy that my inflammatory markers were high as it would reinforce to medical aid that I really do have an inflammatory disease going on STILL since my first tests in 2011. But the kidney one was a shock. Yes, I had kidney pain last week but…And I’ve had it before and brushed it off.

Till Google claimed you DO or CAN indeed feel pain.

I don’t know what that means for the Enbrel.

What I do know is that I’m so tired. I thought it was purely AW fatigue but I read that struggling kidneys can also cause fatigue. And I’m not able to fake energy as well as I used to. The cashier today asked, “How are you?”

I told her, “Ag, I’m fine. And you?”

She replied, “Well, you don’t look fine…”

I thought about it and thought to myself, “Well, I’m actually not ‘fine.’ Can anyone with a chronic illness ever be fine when they are sick for life? But when I say I’m sick, I mean the flu etc. When I ask my friend with cancer how she is, I mean above and beyond the cancer, which is always lingering. (Thankfully, it’s CML and basically has been undetectable for YEARS. )

The cashier then adds, “You look tired. But hey, school holidays are over. You can go home and rest now that the children are back at school.”

Me, “Well…”

It’s been a bad day. Pain. Fatigue.

And the silver lining? The twins are both napping! I got to iron a few things and I’m going to mark. I get a breather of sorts.

But sjoe, I really wish I could come home and rest. I know a few people who have had to take disability due to their AS. They get to rest at home. I can’t.

And honestly, even if I wasn’t married to the home education idea, the meds I’ll be on are too expensive. We will never be able to afford them AND school.

So what will I hope for?

I’ll hope that I stop wheezing, and that my meds provide the amazing relief other patients have had.

I’ll pray that the fatigue and pain disappear.

In the meantime, I’ll chuckle the day after another mad day in my crazy house, where all the children go nuts either in teen rebellion or autistic meltdown or have gone plain old ‘angry throw non matching things up in the air because I can’t fit them into each other.‘