Update from Jane

Jane Miller

A little over a week ago, on November 2, Erik and I boarded a bus in Victoria at 9:30 a.m. We caught a ferry in Sidney at noon,  picked up our car in Friday Harbor at 2:30 p.m., drove aboard another ferry at 4:00 p.m., left Anacortes at 7:30 p.m. and arrived in Oregon City before 11:00 p.m.

Fourteen hours. This is why Erik doesn’t want me back on the boat yet, so far from the medical care that might be necessary to save my sight.

And we were with Dr. Lin, one of the top uveitis specialists in the world, on November 3. I wish I could say the universe opened up and took back the game of “gotcha” it’s been playing with me, but I can’t. It was a mixed bag of information and decisions. All of which are doable, bearable even. Few of which are agreeable.

There are signs of improvement in my left eye. There is also a spot of fluid that wasn’t there before, but while it’s a “setback” it’s not “BAD.”

I am now on a quick 3-week taper down off prednisone as opposed to the slow 4-month taper as the methotrexate ramps up. The wrenching stomach pain and my history of ulcerative and eosinophiliac esophagitis require that prednisone be discontinued as quickly as possible. That, plus the fluid in my eye, is cause for concern, so while we eliminate the prednisone, and maintain methotrexate to see if it’s powerful enough to keep my eye safe, we are reinstating 4/day prednisone eye drops. Much better for someone with my history, but not as strong against sympathetic ophthalmia.

The last news I received is the hardest to take. I am forbidden from being more than three hours from OHSU. My mention of international travel, as in being on the boat in Victoria, caught Dr. Lin’s attention. “Wait!! When is that scheduled???” It was priceless – and telling. “Well, it’s not on the schedule anymore,” I reassured her. So I am staying in Sisters and Erik will be travelling up to the boat to work on batteries and things that need to be fixed, refurbished, restored after our summer journeys. He’ll stay there long enough to do the vital tasks and enlist the aid and expertise of our boat mechanic and friend, Ron. Then back down he’ll come. When that happens is nebulous.

The appointment was long and draining, but the news was mostly what we expected, and we stopped by the Physician’s Pavilion cafeteria for a bit of food before heading home. I was unsettled, though, disquieted. And it took a bit of searching to understand and then explain.

I have a follow-up appointment in one month. December 6.  Exactly one year after my first appointment at Casey Eye Institute.

The last thing I need to engage in right now, though, is a day-by-day remembrance of this past year. A friend noted on Monday that I’ve come so far. But it has cost me dearly, despite my attempts not to allow it. I want to move on from the injury. I want to forget it happened. I want my face to move the way it’s supposed to, not to hurt, not constantly remind me of the terror and the pain. But there’s always something else lurking, right around the corner, ready to trip me up.

It takes me a long time to reach the point of disconnect and sadness, but here it was. Erik thinks this moment is because this is where we sat the afternoon I learned my eye was forever broken and I decided to have it removed. But he’s wrong. The reason for turning inside myself for just a minute. I’m just tired of it being one more thing.

“But you know what?” my internal voice said 36 hours later. “Life is dealing with ‘one more thing.’”

It’s dragging your ass out of bed – and then making the bed – every morning. It’s putting a smile on your face, even if the smile doesn’t quite meet your eyes; it’s taking care of yourself, body and soul; and it’s thinking of and helping others, in whatever way you can. The universe hasn’t conspired against me, and it would be hubris and self-indulgent to think otherwise.

I will deal with whatever and however many “one more things” come my way. It beats the alternative.