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.

The good news was my ocular pressure was down from “high” to “normal”; there was no new inflammation, just the same old damage; nothing new in the front/center of my eye.

So, I bought a bike and went on a ride with my wonderful friend. I bought plants – flowers and vegetables – that I was able to plant over the course of a few days. I designed a windbreak based on boat covers that I think might actually work to protect the plants on the west deck from the destructive June winds that whip over our hill.

The trouble is I cannot see the light tan thread well enough to thread the needle, not even with the little cheater we used to use when we were just learning to sew (decades ago). I can’t sew straight lines anyway, and these seams are going to be visible, so being prevented from sewing  might not be a bad idea.

But I really am doing ok.

So why am I crying?

I’m still fighting to stop the damage in my left eye.

My visual acuity at OHSU was 20/25 – with two wrong on the 25 line; at my optometrist’s office two weeks before it was 20/25 straight up. I can’t tell if the haziness is due to something wrong or the controlled burns that are making May look like scorched September.

I read about a woman and her husband who have to give up their Australian shepherd. The husband is working too much … they may have to relocate. But this lovely 16-week Aussie is the “husband’s beloved dog.” And I am wracked with a sense of loss. I am sobbing for this man and his dog. For the loss of that beloved dog.

No, I’m sobbing for the dogs I’ve lost, and those I’ve left behind, and for the losses I’m fighting off. I struggle to focus on what I have gained, or at least what I have learned. But a small  part of my soul is tired and sad. I can usually keep a shelter over this little flame, protect it. Sometimes it flickers in the wind, though, sputters in the damp cold, and threatens to give up in a tiny puff of curling smoke.

 

Who’s blind?

By Erik Dolson

We were back on the boat at the end of December, planning for a New Years celebration in Victoria. The fireworks had been cancelled, or were never scheduled, but we didn’t know that and didn’t really care. We were on the boat and with friends.

Irish’ last doctor’s visit had been great. Her left eye had improved after the injection of steroid. (I held her hand, but could not watch.) While it was impossible to know if the methotrexate was effective, signs were positive even if her vision wasn’t improving much past 20/30, even with the new glasses we bought her last summer. Continue reading Who’s blind?

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

Push

By Erik Dolson

I have been asked to participate in a forum on Parkinson’s in Washington, D.C. next month,” Irish said one morning in February. “They want us to talk with members of Congress.”

“That’s wonderful. You’d be great. I think you should,” I replied.

“They’re willing to pay travel expenses for me and a caregiver. Want to go?”

“Um, no. A hotel room for five days isn’t …”

“Three days, we travel there on Sunday and back on Thursday…” Continue reading Push

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

“It’s Stable”

Fishing for salmon, January 14, 2018. Photo by Joan Newman

By Erik Dolson

“Not exactly romantic,” I said at Christmas when Irish tore open the botched wrapping on her last gift under the tree.

“It is, because it shows you were listening,” said Irish.

She’d become addicted to fishing after hooking salmon in Canada and Alaska last summer. I’d heard enthusiasm in her voice when she talked about fish finders with her friend and salesperson and fish guru in Victoria. So, I got her a fish finder. It broadcasts a Wifi signal to the note pad we’d won the Christmas before with the lights on our boat.

Continue reading “It’s Stable”