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

It’s just a story

By Erik Dolson

We talk about the Parkinson’s. We even laugh about it, when words come out wrong and there’s no consequence.

We were holding hands and walking back to the boat where we live when Irish wanted to say “Do you remember when …”  Instead, it came out “Do you remember me?”

“I try to remember you,” I said. “Sometimes.” Whatever she wanted to ask evaporated by the time we stopped laughing. Continue reading It’s just a story

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.