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

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