July 28

by Jane Miller

I have had damn little good news in my life in the past 19 months, and I wasn’t expecting any when I sat in the exam room for an hour waiting for my retinologist, Dr. Lin, to explain the monthly test results.

My distance vision was strangely better, my middle and near vision worse The “starlings” of floaters and clouds of gray tulle that dulled my vision were back, the flashes of light continue. Continue reading July 28

Sailing is about Trust

by Jane Miller

Sailing  is about trust.

Who to trust. When to trust. How much to trust. What to do if that trust is broken.

Close to one year ago, we left the dock in Victoria bound for Sidney on the eastern side of Vancouver Island. Off the dock, out the harbor, southeast along the Strait of Juan de Fuca,  and a short jaunt up the east coast.

That was the plan. Continue reading Sailing is about Trust

Sinking Spell

Jane Miller

Dr. Lin said we’d give it one more month. One more month of careful observation. One more month of weekly self-injecting methotrexate with its life-sucking side effects. One more month of painful (but brief) bi-weekly Humira.

If the inflammation goes away, we’ll continue without the injection of steroids into my left eye. If the fluid is still there, well, we’ll continue and do the shot. Again. Continue reading Sinking Spell

Erik Wrote a Book

by Jane Miller

Erik wrote a book.

This is not a surprise. He’s written a number of books.

A nonfiction book about adult attachment disorder. A story about a couple who meet on the ferry. A mystery. And now he has rewritten a book he wrote under the pen name “Jessica Love.”

Writing anything and showing it to the world takes courage, perseverance, determination, and not a little chutzpah. Erik has taken these a step further and added self-awareness, pride, and honesty to the list.

The first “Jessica” book was good. A well-written whodunit with amazing sex scenes. But he was honest with himself and realized he could do better. There was a slightly different story that needed to be told and he was ready to bring it to life. Continue reading Erik Wrote a Book

On Becoming an Advocate

by Jane Miller

                                                                               

Whoever wrote the definition of “advocate” didn’t know the half of it. I mean, “to speak or write in favor of; support or urge by argument; recommend publicly,” does not even begin to describe this past week in Washington, DC.

I am exhausted beyond words. The insomnia that dogs me nightly is worse when I travel. It has been like that for as long as I can remember, no matter how many times I have flown for work. The insomnia that sits up with me when Erik is not in bed comes along, too. The insomnia that comes from Parkinson’s, fibromyalgia, and sleeping on titanium refuses to be outdone. A powerful triumvirate, these three insomnias. Continue reading On Becoming an Advocate

How Do You Know?

Jane Miller

The medicine I take six times a day loses efficacy when taken too close to a meal high in protein, so an early dinner of salmon meant a slight delay in drugs. That meant my right toes, foot, and leg cramped up so tightly it was impossible to walk.

Cramps also attack when I don’t move enough or often enough. Like after a three-hour car trip. Or when I don’t take my usual walks. My right arm and hand stiffen so that I can’t write and can barely type.

One of the first symptoms of  Parkinson’s – we didn’t even know – was losing my ability to tell stories or explain, well, anything. Laura noticed. I noticed but didn’t understand. Erik can tell where I am in my medicine schedule by how long it takes me to finish a sentence and how many pronouns I use.

Imagine that. An English teacher, writer, editor, and program manager who can’t explain, describe, or express herself clearly. Losing what was my life for almost 35 years. Continue reading How Do You Know?

Just An Update

by Jane Miller

We’re back in Sisters, judging by the blizzard blowing outside the picture window by my desk.

I had two important appointments this week in the ongoing war to stop my body’s attempts to destroy my remaining (left) eye. Tuesday I had an MRI with contrast of my brain. Good news – no sign of multiple sclerosis, which means that I am physically able to start on Humira for my left eye.

The appointment with Dr. Lin was not so good. The regular exam and tests were followed by an injection into the back of my left eye to try to decrease the inflammation and fluid. After only three weeks since my previous appointment, both were worse, as was my eye pressure.

I wasn’t really expecting change, and bad change was disheartening. So is the fact that this condition is so rare that no prognosis can be made.

The research indicates that through “prompt” “emergency treatment,” or “immediate, aggressive treatment” or “early intervention” the “complete loss of vision may be avoided” (or another source – there is a “reasonable chance of useful vision”).

A wee bit disheartening. As is the fact that my insurance company immediately denied coverage for the Humira. This is not the first time it’s happened to patients in my situation, though, and Dr. Lin has a process they follow.

I am still strong, but I am tired. I try to think the best, keep the faith, and not be afraid. Most times I’m relatively successful, but sometimes it catches up with me

Thank you to all my friends and family who continue to send positive thoughts and love. Bear with me! It has to turn the corner sometime soon! 🙂

 

I WAS Stable, But I’m STILL Strong

Jane Miller

We walked into the elevator and I walked into his arms. It didn’t take long to go down two floors, and then we were outside. This is not how I wanted it to be, I said. Adding that while I knew that was useless negativity, sometimes that’s just how it was. Continue reading I WAS Stable, But I’m STILL Strong

I Miss Madison … and Alfredo Sauce

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.

 

Google My Name

Jane Miller

This is crazy. Insomnia drives me to do some weird things at 2:00 in the morning.

Shop. Great sale at the Gap. Don’t have my Gap card with me. Took about a half hour to access (remember log-in, find password, the whole thing) and by that time I was irritated enough not to buy anything from this stupid site anyway.

Google my name. Really google it, as in “jane miller google.” There are a TON of Jane Millers out there. About 24,900,000 hits. In .43 seconds. I made it to page 6 and still hadn’t found the “right” Jane Miller. We’re an eclectic group, we Jane Millers. I would not have expected such with a plain-Jane name like ours.

First hit was for Jane Miller, recent graduate from University of Melbourne. She wrote four articles about libraries and information management. I like libraries and managing information. I wonder if it goes with the name.

Then there’s the Jane Miller who went to UMass-Amhurst. Wow, did she write a lot. Seems to focus on gender, various kinds of equalities, workplace issues. Well, good for her! These are important issues to discuss, no matter which side (and there are many) one happens to fall on.   

Ahh. Now we’re talking. The third Jane Miller wrote a children’s book, The Farm Alphabet Book. She also wrote a book about ADD and overcoming challenges. Sounds like my classrooms over the years. While my attention span resembles a squirrel’s, I am not ADD. I just loved teaching these kids. Some of my favorite students over the years were the inevitably bright, funny, creative ADD kids.

Ok … one Jane wrote about statistics. Skipping this one.

Here’s a Jane who wrote a book called Working Time: Essays on Poetry, Culture, and Travel. No reviews. Wonder if that’s because no one read it. Kind of like my blogs —echoes across a very empty canyon.

Look! A Jane Miller who’s a teacher. Second grade. Bless her heart!

Hey Tracy! There’s a “Tracy Jane Miller.” We’re one person!

And there’s a “Kathy Jane Miller.” My older sister’s name is Kathy, but she hates me so this is as close as we’ve been since our father’s funeral almost a year ago. She doesn’t call me.

Here’s a Jane Miller I might have liked. She wrote a book, Crazy Age: Thoughts on Being Old. The review says this Jane was funny, erudite, and insightful. She was a teacher, Russian translator, and lover of literature. Well, I have the first and third; and I’ve read One Day in the Life of Ivan Denisovich. Maybe that will count for something.

The review also says this Jane “muses excellently.” While I’m glad the critic feels this way, she also says that Jane writes about the loss of “a pulsating sex life” that comes with age. I’m here to tell ya that’s just not true. 🙂

Decided to check out the “images” … To no avail. What’s up with that?

A lot of Jane Millers were (or are) writers of everything. Children’s books. Books on growing old. On gardening (this is beyond me, except I think I could pen a memoir about the time Laura and I had a garden and a pretend HGTV show called “Gardening on a Limited IQ.” I think we’d offend too many people, though.)

There are a lot of dead Janes. Inevitable, I suppose. I wonder how I will be remembered. That’s important to me. I taught for 17 wonderful years – middle school through college. From teaching students with language and learning disabilities or developmental disabilities, to the small coast high school where I taught just about everything English or social studies, to the high school I graduated from where I taught mainstream and talented and gifted students, to sophomore English to Advanced Placement-US Government, and finally to a college course on grammar and pedagogy.

I worked in educational assessment for a different 17 years, from being content specialist (then project manager), to the Director of Assessment for the state of Missouri, to the executive director for assessment design of a major educational test publishing company. Those three jobs were fantastic!

I loved it all. I hope that showed. How much I loved what I was doing, the students I worked with, and the colleagues I still call my friends. So many achievements — big and small, all unique, all wonderful.

There’s one company, as there was one school district, that drove me from each part of my career. The first was a despotic boss and a flare of fibromyalgia. The second a despotic boss, insane corporate culture, and Parkinson’s.

My life has been full of joy and challenges. A lot of challenges lately, but also more joy. Erik. Jared and Matt. KC and Sabitri. My brother Scott. I’d include my two sisters but they don’t like me. My sailing friends. Racing family. My GPhiB sisters. So much love.

I had a steroid shot in my left eye on Friday, the pain and Xanax made for an interesting afternoon, but with Erik, Matt and Jared, I made it through once again. None of that is in my Google search, but Google doesn’t matter. Real life, real people, and real love.

That’s what we carry with us. That’s what lasts.