by Jane Miller
Erik is writing about how he can no longer support the Democratic party. I am cleaning under the sinks. Well, one sink. When I came traipsing around the corner pushing the big Shark vacuum, he looked up.
“Sweetie, what are you doing?”
“Getting the big vacuum because the little one won’t suck up enough when I take the brush attachment off.”
“Don’t you think you’re working too hard?”
(Seriously, no one has ever cared enough to ask me that.)
“Um, I don’t know.”
“You haven’t slept, you spent hours in pain last night and this morning.”
He’s right, I woke at 1:00 a.m., came out to the living room at about 2:00, and finally dozed a little around 5:30. We got the wheels in the well at about 8:00 to meet his ex-wife at the Bend-Redmond Airport and welcome his daughters home from their trip to Asia.
Erik writes about politics, artificial intelligence, his book. I, on the other hand, fall asleep while he and our friends discuss politics, can’t remember exactly why James Madison was my AP US Government class’s favorite founding father, and had to look up the 14th amendment to argue a point about double jeopardy.
Friday, December 1, one year from the fall, found me having an upper endoscopy to see if the high doses of corticosteroids had done real damage to my esophagus. The good news is that I won’t bleed out on the boat as Erik has feared. The bad news is that I have gastroparesis, where the GI tract doesn’t move things along as quickly as it should, which allows acid and bile to hang out in the stomach where they don’t belong. In my case, it has caused bleeding and inflammation in my upper stomach, bile and acid in my lower stomach, and pain all around. The likely cause – Parkinson’s.
I was also diagnosed with eosinophilic esophagitis, an inflammatory reaction that causes narrowing of the lower esophagus and symptoms like heartburn … etc. Add one more medicine into my already drug-packed day. I’m still waiting for it to help. In the meantime, I am changing my diet and taking out what’s left of things I enjoy – like alfredo sauce, coffee, the occasional glass of wine, raw fruits and vegetables. Yup, raw fruits and vegetables. Not to whine, which I guess I am, but yay.
I spent part of last weekend with my boys in Oregon City, and Erik came down on Tuesday night. So good to see him! On Wednesday, we went to my eye doctor at OHSU. The good news is that there is nothing big that is clinically worse. There are some worsening symptoms (like visual acuity that varies daily), some swelling in my eye, but some things appear to be stabilizing. I had to have a steroid shot in my eye, though. Not above it, but actually in it.
Erik is such a trooper. He can’t bear to watch this procedure, but he held my hand through all of it. I love this man.
We increased the dose of my weekly immune suppressive injections, and the side effects made their presence known almost immediately.
Ok, so maybe there are reasons I’m having trouble with the amendments and Mad-dog Madison.
Someday I will write about politics. About how too many elected officials have put ambition and greed above their oath of office, how Republicans have allowed a narcissistic misogynist to remain in office despite overwhelming evidence of unconstitutional misdeeds, how James Madison and Alexander Hamilton helped shape what is good about our country.
Someday I will write about more than pain, medicines, setbacks, fatigue, and fear.
I will write more about sailing, and life on the boat. About being part of a pit crew for my favorite driver, spending time with our racing family, and hanging out with one amazing crew chief.
I will continue writing about my sons, my friends and family, and how together we can help each other overcome just about anything.
I will continue writing about Erik and how much I admire and love him. How I could not have made it as far as I have without him. How I hope to spend the rest of our days adventuring together as we head toward the second star on the right and straight on till morning.