The Conversation

We spent a bit more than a week far from reality, driving through Yellowstone and camping in The Badlands.  Utter heaven.  I promise to put up a dozen galleries and fill you with longing to drive away from your own lives into the wilderness.

Two and a half years ago, I cried when we drove back into town from vacation, because this is where I have MS.  I didn’t cry this time.

Earlier this summer I had set today as the day I would start taking meds as part of my trifecta of disease-progression prevention; Combine exercise, vegetables, and Copaxone. Mix.  Repeat.  Logistically, though, it didn’t work out.  Did you know the price tag for Copaxone, before insurance, is $60,000 a year?  And with insurance it’s $2,400?  Now, I didn’t even ask, but my doctor already has me being evaluated for payment assistance..which might bring the cost down to an amazing $0 a year.  But, really, how would a person pay for that?  How?

The cogs in the insurance water-wheel are working, anyway.  And now I wait to hear from a nurse, who will come to me and teach me how to do the injections.  I also am apparently expecting a phone call from someone else who has/does use the stuff already.  They try to match you up with someone of similar interests and backgrounds.  Do I really want to talk to someone else with a five-year-old and an eight-year-old, who hobby gardens until she gets lazy, binge-watches Penny Dreadful, and, well, what are my interests anyway??  No.  Nope.  Not really.

True story:  I changed into twice-worn pants from the back of the van from the road-trip debris, in my driveway, rather than wade through the bedroom to paw through my  mostly-empty dresser this morning.  Multiply that scenario times one hundred and you might understand the state of the house.

And now some nurse is going to come here.  Here.  For the love of Pete, I’m going to have to learn how to use an autoinjector in my driveway because there is no way a person can actually walk into the house right now for the Playmobil avalanche.

I hung up after listening to the obligatory facts and possible side-effects portion of the phone call.  Shook it off and went out to tell the kids their horrible fate:  The house must be cleaned.  Now.  Well, starting now anyway.  I expect this to take days.

And here’s The Conversation I had with my daughter:

“We need to clean up.”

“Why?”

“Because there is no safe way to walk in the front door and someone we don’t know is coming.” (This is an important point, because she knows we don’t clean up for real friends.  Just strangers.  And grandma, because she taught us better.)

“Who?”

“Uh. Um. … A nurse.”

“Why?”

“To teach me how to use a medicine.”

“Why?”

“Oh.  Uh.  Hmm.  Well, you know how you get a flu shot so that you don’t actually get the flu?  This is like that.  I need to take something to keep me healthy. And I need to learn how to take it…..so, um, we need to clean up.”

“NOW?!?  Can I do chores instead? Of picking up? Please?”

“No.”

And there you have it–how to talk to your kids about MS.

 

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