Author Archives: Jane Miller

The challenges are relentless. But it’s not in my nature to ask “Why me?”

I’ve always known that I didn’t have a special pass from the Fate Department. No “get out of jail free” card. No winning raffle ticket. I have, however, wondered just who, and in what lifetime or universe, I made so angry that I have to go through all this.

But I never believed I would reach this point. And while we are working (still, always) to manage outcomes, there is no guarantee that anything positive will occur.

The one good thing, as I said in a previous post, is that the back of my eye, where all this began, is still stable. The retina shows no signs of new inflammation, damage, or debris. There is still swelling, scars, and things floating around, just none of it is new.

There is a cataract in my left eye that is growing slowly but making itself heard. And so I had an appointment on Monday of this past week with Dr. Afshan Nanji, the doctor charged with getting my sight back as much as possible right now. A cornea specialist, she is Princeton and Johns Hopkins trained. She was like a more relaxed Dr. Lin, just as knowledgeable and clear, but not as intense. My friend, Kat, came with me, and I was grateful for her help and companionship as the appointment stretched past three hours.

While Kat and I did not come away with all the answers, we came away with many, and the beginning of what I believe will be a great relationship with Dr. Nanji.

And so we began with the usual topographic pictures of my eye. Did the usual eye exam … the Snellen chart, the “Which is better? One? Or two? One? Two?”

I could tell things were not going well. Kat kept looking kindly at me as I struggled to decipher the letters. Then there was the “glare” test, where the tech shined a light into my left eye to replicate the effect of the sun’s glare or the brightness of oncoming headlights.

“Tell me the letters you see.”

Once that light hit my eye, however, the letters, hell, the whole world disappeared. The bright light was painful, the reality was frightening, and I suddenly felt very small.

When Dr. Nanji came in, we started with my long list of symptoms from the past two years. (Every time I say that or think about the number of times I have made my way up to the top of Marquam Hill to Casey Eye Istitute, I am shocked.)

She was clear about what this cataract surgery could likely (or at least would be intended to) improve. Acuity is one of them. Another goal is to decrease my light sensitivity (photophobia) enough that it will render retinal surgery unnecessary. We want to keep sharp things and lasers away from my retina.

We discussed the surgery in depth. Because I cannot take corticosteroids (prednisone) that help fight inflammation and infection, I must have an injection in my eye prior to surgery. Thsi is as icky as it sounds. Of course, a shot can also increase the risk of infection.

I would also have to have injections of anesthetic in and around my eye, and I would have to look at a bright light for not a short amount of time.

Which led to the question of “How do you do with general anesthesia?”

I looked Dr. Nanji right in the eye and said blandly, “I vomit. A lot.’

OHSU did not believe me with the second and most difficult surgery after the fall. They did believe me when I was back for the third operation in July of 2017. They threw every anti-emitic at me and it worked. Dr. Nanji assured me that she would replicate everything they did.

Then came the elephant in the room. My corrected vision last week at Dr. Lin’s office was 20/100. She said there was no real physiological / retinal cause for the decrease in such a short time. And, since we had talked DMV rules in the past, that was the discussion.

Two eye exams and an average corrected vision of 20/90, and Dr. Nanji was kind but blunt.

“You cannot drive.”

I explained the rules to Kat … That 20/20 to 20-40 was unrestricted, everything is fine; 20/50-20/70 was restricted; 20/80 and worse was a no.

“You know, we did everything right. Everything we were told to do. I had my eye removed within the three week window. Did not even try to save it after we got home to the States. And then in late summer of 2017, the symptoms began.”

One in 3.5 million.

“This was not part of the plan.” Kat and I said in unison, not even looking at each other.

I know that we are working hard to make this situation temporary, but it’s so difficult to face. I live in Damascus, east of Portland, north of Oregon City. No one I know is out here. All of my Parkinson’s exercise classes are in Tigard (boxing and dancing/drumming) or the west side of Lake Oswego (tai chi). I can ask Jared to drive me on a couple days of the week, but my great fear of being a burden (which used to make some people laugh because by virtue of who I am, I’m kind of a burden) would come true in about a day and a half.

Kat was so kind as we left the office that afternoon, saying that we would get things sorted out. That I wasn’t alone. I love her for that. I am trying to be strong. I know people have had to face so much more than I. So I will do what I always do and tell myself with a smile on my face if not in my heart,

“Suck it up, Buttercup. You have work to do.”

22 October 2019

I have spent so much time these past months responding to quesitons of, “See it? It’s right over there.” And then the helpful reiteration in different words, often followed by gestures to indicate the exact location of whatever they want me to see.

“Do you see it?”

“No. I can’t see it.”

“It’s right there, up in the tree.”

“Nope.”

“Seriously, it’s right there.”

“Seriously, I can not see it.”

It’s not that I’m blind, I just can’t see very well.

My uncorrected vision is now a bleak 20/100. I can see at 20 feet what others can see at 100.

Corrected vision is 20/50. I qualify for only a “restricted” drivers license. I’ve already restricted myself beyond what the state would, however. Daytime only. Sun not too bright. Day not too gray. Not at dusk or dawn. Not in the rain.

I plan my days so I don’t often have to ask my sons for help or I call for a LYFT. There is danger in asking for what people don’t always want to give.

I cannot read anything beyond snippets – because of my visual acuity, but also because Parkinson’s has taken my ability to track, which interferes with comprehension. This started back in 2015 when I was in Willamette’s MBA for Professionals program.

Parkinson’s. The injuries to my face. A rare autoimmune reaction. They have robbed me of so much. Reading. Sewing. Beading. Driving when I want. Being as independent as I want to be.

But now, I might be able to see again. Dr. Lin, my retinologist, who has taken each setback as a personal affront, says my cataract, which likely started as a result of corticosteroids, is big enough and is affecting my vision enough that it can be fixed.

She will not do this operation, preferring a specialist in cataract surgery do it. There’s a lot at stake, and I don’t do well with odds. Even though the risk of complications is low, it is real. Reading the list, however, is like reading a partial list of things I already have.

Light sensitivity? Check.

Flashes of light? Check.

Macular edema (swelling of the center of the retina)? Check.

Elevated eye pressure? Had it.

What I don’t have is a detached retina. Or blindness.

There are definite potential drawbacks.

But I’ve lost too much already not to try. I miss seeing the faces of the people I love. I try so hard not to focus on what I’ve lost, but sometimes I don’t do a very good job.

I’m also just very tired. I’ve been undergoing a bunch of tests to determine the cause of severe reflux that has affected my voice, causing cough, awful heartburn, and pain. I sleep at an upright angle, which means I don’t sleep.

We have discovered a grade III hiatal hernia, and that the valve that keeps the stomach contents in my stomach has been obliterated. One more test at the end of October, and we’ll be able to develop a plan. This surgery brings its own risks, though, and the timing of each prospective surgery has to be carefully determined due to both Parkinson’s and the two powerful immunosuppressive drugs I’m on.

Writing this has helped me get it together after the meltdown this morning caused by the fact that I cannot thread the damn sewing machine needle and finish the tablecloth I’ve been making. Would it have been easier and less expensive to just buy one? Yes. But I would not have been forced to do math, think spatially, and use both sides of my brain.

I would not have been pushed to the brink by a sewing needle, either, but that’s another story.

***

P.S. Had a brief appointment with Dr. Lin today. Cataract is affecting my vision a bit more, bur there is no new inflammation, no new debris, no new damage of the retina kind. I am still STABLE!

P.P.S. And have the appointment with the corneal specialist on Monday.

P.P.P.S. I might have to ask for some help with all of this.

20 Oct 2019

The insomnia that has dogged me for decades has given no indication of leaving. Even though the side effect of virtually every drug I am on is “may casue drownisess” with the added “do not operate heavy machinery …” Apparently, it’s only the obsucre side effects that I get to experience.

Insomnia is different here and now, though, than it has been for the past few years. There are certain things I miss from my most-recent previous life, but sitting tucked up in the treehouse, watching the sunrise over the mountains has to be a big one.

“Most-recent”

How many times in a lifetime do we re-invent ourselves? Re-find ourselves? Renew ourselves? And I wonder, “Why do we keep losing ourselves?” Why do I?

“You should write a book,” some friends say, “You’ve been through so much. You need to share your story. You give people hope.”

“You should write a book. You are able to express what I feel and wish I could say, if only I had the words.” Say some compatriots battling Parkinson’s disease or other dragons.

“You should write a book. You are the only person I know who has faced what you have had to face and yet remains so positive. I don’t know how you do it.” This is not faint praise. This friend knows a lot of people.

No, the praise is not faint, it is heartfelt and heartwarming. But write a book? Seriously? Me?

For one, who would read it? There are nine people who “follow” my blog (thestarseachnight.com). And I am one of them. Some of my friends don’t even understand why I write a blog.

For two, I am not remarkable. I do not stand out in a crowd. I have done nothing particularly brilliant. Haven’t made a name for myself. Haven’t triumphed. I have survived, though.

I have struggled, and cied, and given up, and doubted. But I have fought my way back. I have overcome debilitating fear, pain beyond words, and crippling loss. As so many others have had to do. I haven’t cured Parkinson’s, or sympathetic ophthalmia, or fibromyalgia. I’m just trying not to let them cripple me.

Maybe that’s enough.

For three, I am preternaturally cheerful. Sure I have a dark twisty place where my heart hides when the light that is my soul is sputtering in the wind, about to flicker out with a puff of smoke and loss. Given time, though, I will smile, and laugh, and make it look like everything is better. It is not usually, I just can’t help it. It might go along with the dancing. Which I do. Every day. Everywhere.

So maybe that’s enough.

We’ll just have to see.

We were different once. Employed. Strong. Organized. Blithe, even. And then came the tremors. The freezing. The falls. The quiet voice. The loss of a sense of smell. The symptoms as varied as we are.

The CEO, custodian, homemaker, executive director. Teacher. Doctor. Lawyer. Professional actor or athlete or singer. Or comedian. So different once upon a time. Now called to be something new, someone new.

But we mourn who we once were. It’s only natural. The ability to organize and track the progress of teams working on projects worth millions of dollars. To help our children with their homework. To focus on one task long enough to finish it. Just once, again.

To read.

And we wonder.

“Where did I go?”’

“How did I get here?”

“What am I doing?”

“How much more do I have to lose?”

Oh, sure, the humor comes back sometimes. The smile comes easier, the light we once carried so strongly within our souls is bright again. But then they fade into little sparks, small candles that can’t overcome the darkness.

Parkinson’s is a disease of limits. Every day we lose a part of what we had the day before.

Taptaptaptaptap

The sound of my right foot trying to move and stay where I want to put it. I catch sight of myself in the mirror. Stooped. Old. Tiny.

“Oh, for the love of Pete! Stand up straight! Take a damn step.” I practically yell at myself.

I force my right leg to take a full step, swing through the hip, and place my foot down. It stays. Then my left leg. Add arms and I am striding down the stairs with Friday. It is 6:05 am, and the battle has begun.

Every day we fight battles – large and small – to keep who we were alive. My mother used to run her finger up our spines and make us sit up straight, regardless of the fact that we were sitting on stools at the kitchen counter. But that is why my posture is so good now. Despite the Parkinson’s stoop.

Shoulders down and back.

Engage your core.

Put your music in your ears and head out for a run. Or a walk. Or just out.

Stretch your mind and heart.

Forgive. Apologize.

Leave nothing undone or unsaid that will make someone feel better.

So when we wonder,

“Where did I go?”’

“How did I get here?”

“What am I doing?”

“How much more do I have to lose?”

We can honestly answer.

“I was here all along.”

“I chose to be here.”

“I am living my life as only I can.”

“I don’t know, but I will lose nothing without a fight”.

We carry our essence with us. Who we are in the deepest, brightest parts of our souls. No matter what. No matter how long it takes us. We are still strong.

Having Parkinson’s sucks, but life doesn’t have to. 

It will, mind you. Life will most definitely suck. You will be plunged into the deepest pits, from which, you will fear, escape is impossible. You will endure the most dreadful physical pain that, you will fear, will never end. You will suffer the scars, inside and out, that, you will fear, will never fade.

I know these to be true. I have also learned that while the immediate white-hot pain fades, it leaves behind reminders. Shadows that lurk inside darkened corners. Memories triggered by seemingly innocuous events, a careless phrase, the scent of the ocean, the glimpse of a sailboat.  

And I realize that even though I am a helper by nature, I cannot always help myself. So I keep busy, not necessarily happy, but busy. Many people think busy equals happy, but don’t conflate the two. They are different.

Busy just takes my mind off the dark places – a temporary occupation, not a real cure.                      

But busy I have been. Boxing three times a week. Dancing a few times a week. Volunteering at PRO. Training my puppy. Being active in my sorority alumnae chapter.

And I have added another … I am organizing the First Annual Hike for PD – “Hiking Sisters and Misters.” If you have not seen us on FB, climb out from under the rock, and go to the page “Hiking4PD.”

My goal is to make this an annual fund-raising hike, and move it around the state. To that end I have taken the next step and bought the domain, “Hiking4PD.com”

I am very excited about this, and committed to this endeavor. Working to raise awareness that we – Hiking Sisters and Misters, and Hiking4PD – even exist, crafting a 6-point belief statement, contacting potential sponsors.

Yes. I am very busy. And sometimes I am happy. And that does not suck.

 

After three weeks of more meds and hoping this hiccup did not count as ¨unstable,¨ I received some good news at the retinologist on Friday.

Hgh doses of steroids, whether focused or systemic, have some unpleasant side effects. Ophthalmic steroids can increase eye pressure a lot … and quickly. This time it did not.

Steroids can also have a paradoxical  side effect and increase what we are rightfully trying to decrease. This time it did not, and the fluid in my retina has gone down.

This is more good news.

Also good is the news that this recent increase in the amount of fluid in my retina is just a blip, and not another episode of ¨unstable.¨ Early on in my treatment, Dr. Lin said I need to be stable for 3 years – that’s 36 consecutive  months. I do not need to start counting to 36 months all over again.

As is usually the case, though, there is another side to the story. Before December of 2017, an ¨epiretinal membrane¨  (ERM) grew over my retina. The depth (height?) of the ERM is called the ¨central macular thickness¨ and it continues to increase. Between 300 and 350 is normal. I have never been ¨normal¨ amd am up to 488.

This is not good. Some people can have relatively high numbers and not be symptomatic (they can still see just fine). I am symptomatic.  After I had my glasses fixed this past winter, I could read license plates and street signs. I can no longer do that. With glasses on, my vision is 20/50, which is better than it was before new glasses, and worse than it was after.

Which leaves us with the discussion of surgery. There are a number of problems to consider … Including that I have just the one eye left, and no matter how safe this surgery technically is, there are always complications. There is also the fact that ERMs don’t often cure themselves, and there is a risk of decreased visual acuity regardless. And by ¨decreased visual acuity,¨ I mean ¨blindness.¨

However, since Dr. Lin, who is out on maternity leave, would be the surgeon should I decide to go this route, and she doesn´t return till July … I have plenty of time to compartmentalize this away for awhile.

I do not have to make this decision in haste.

There is time.

Last week began with a call from Walgreens Alliance Pharmacy, asking if I needed to arrange for another month’s supply of Humira.

“Yes,” I said. “That would be great.”

We went through timing, delivery, the regular questions, and then she mentioned the $1200 co-pay.

“Were you expecting that?” she asked.

“Um, no.”

The conversation deteriorated from there, partly because it came just days after I learned my remaining eye was not as “stable” as it had been. Humira is the main drug I have been depending on to save my sight.

The crux of it all is that since I now receive Medicare – well, “receive” is the wrong word – I pay for Medicare as well as supplemental insurance – I no longer qualify for the “Complete” Humira financial help program I worked so hard to find and apply for. That process had taken months, but it was worth it. Humira is unbelievably expensive. Costing tens of thousands of dollars at “retail,” it is usually paid by insurers or the government under a non-negotiable arrangement passed by corrupt members of  congress decades ago.

So, because I am now on government-funded insurance, I no longer qualify for that financial assistance program. It doesn’t matter that I am paying for this insurance.

My first option offered by Abbvie, the company that makes Humira, was to pay $1600 for the first month of Humira, then $1200 the second month, then about $300/month for the rest of the year. $5,800. Oh, and it starts over yearly. This is on top of my premiums, other medications, monthly specialist appointments and lab tests. That much extra I do not have.

By then I was in tears. I was passed along to Abbvie’s pharmacy assistance program. They said I had to apply, although I had already applied and been accepted to the program I was being kicked off. If I qualify, the lady said, I could get Humira “free.” She told me that each case was decided individually so even if it looked like I wasn’t going to qualify, I might still.

Why Abbvie makes people apply and reapply and go through hoops – and maybe not even find these programs because they don’t know how to research or ask – in order not to go blind – is beyond me. It’s evil.

I always cry when I talk to these “case managers” or “ambassadors.” I tell myself they really believe they are doing positive work for the people who desperately need their product. After all, they did not come up with these draconian plans. That’s the committee of people I want access to.

Sometimes in my darkness, I realize that nothing changes, except to get worse. I have been through issues like this since “the fall.” Actually since before that, back when I was diagnosed with Parkinson’s. I’m tired of working so hard at working so hard. I want to go away, but for so many reasons right now I cannot.

But I will work to make today a better day, and I will hope that you are doing better than you were yesterday. If you have insomnia, check Messenger and see if I’m awake. Maybe we can chat for a bit

I live by the words, “What doesn’t kill you gives you a set of unhealthy coping mechanisms and a dark sense of humor.”

They help me face Parkinson’s and life with a combination of cheer, sarcasm, and darkness. And a dose of refusal.

I refuse to let this insidious, sneaky, passive aggressive  coward of a disease rob me of anything easily. No. It will have to fight harder  for what it wants to steal than I fight to keep it. Parkinson’s has taken too much already. None of it without a fight, but taken nonetheless.

I refuse to quit. I persist. In the face of sadness, of loss, of darkness. I persist.

My history of falling is widely known. Down staircases. Down mountains. Off curbs. Across cockpits.

I have seriously sprained ankles. Broken a wrist. Broken vertebrae that resulted in cervical spine surgery, limited mobility, and chronic pain. I have broken, crushed really, exploded truthfully, half of my face. From my nose to my maxilla, to my skull, including my eye and orbit. I was immediately blind in one eye, fighting blindness in the other.

I box my muscles to pain. Stretching and hitting as hard as I can. Running up the stairs. Moving faster than is comfortable. I dance to dizziness, repeating and repeating until I have it right. Only to repeat the process at the next lesson.

The ankle I twisted in dance class last week is worse. “Could it be,” asked my son with a touch of I-told-you-so, “because you push yourself to exhaustion on a daily basis and have continued to dance and box on it?”

I persist anyway.

I lose things – often the same things – regularly. Everyone misplaces their stuff on occasion, and I lose the usual small things throughout the day – keys, lists – the nuisance items. But I also lose the ridiculous – phone, glasses, shoes, purse, coffee cup – all at once. I JUST had it! shouts the voice in my head.

And so began the game “Where is Mom’s [insert noun here]?”

I lose words. Devastating for an English teacher, editor, writer.

“Just give me a noun,” says he.“If I had a f’ing noun, I would,” says she.

And so began the game “What word did Janie mean to use?” Now perverted to “What word can we use instead that would be really funny?”

But I persist. Crossword puzzles. Word games. Organizing my thoughts and space as I once organized multi-million dollar projects.

The vision in my left eye has been a little more limited the past few weeks. My usual check-up revealed an increase in fluid in the center of my retina. There were no signs of new inflammation, just the fluid. So, my doctor increased my prednisolone eye drops from one to four times a day. And I go back in three weeks. I didn’t ask if this event classified as “not stable.” I couldn’t bring myself to do it. To hear those words would have been more than I could handle by myself.

But I persist. I sew great big blankets with little tiny stitches. I bead bracelets with narrow wire. Not a big deal, perhaps, for someone with average vision. Mine is not average.

I read once, “If you’re going to try, go all the way. Otherwise don’t even start … If you’re going to try, go all the way. There is no other feeling like that. You will be alone with the gods, and the nights will flame with fire. You will ride life straight to perfect laughter. It’s the only good fight there is.”

Everything worth having is worth fighting to keep.

And so I persist.

On Monday, after an intense ballroom dance coaching session, I spent a couple of hours watching, ok, crying through a Netflix movie called Dumplin’. Set in Texas, chock full of Dolly Parton aphorisms, it’s a little gem of a tear jerker. Plus, if you watch it as I did, and if you’re the mimic that I am, you will start talking to the dog in a Texas drawl. Oh, good Lord, I thought. I’m going crazy talkin’ in a southern accent to the dog.

Aside from that, though, was the realization that I was hearing some real truths.

• Stop rejecting people for things they can’t change.
• To hell with what everyone else thinks. [Or my interpretation, To hell with what anyone else thinks.]
• Find out who you are and do it on purpose. — Dolly Parton

Oh, and something about the importance of wearing red shoes.

Back up to two days ago. To this Saturday’s dance showcase at Step It Up in Lake Oswego. I did not sleep the night before but I set an alarm for 7:00 am, just in case. Becky was coming over at 8:15 to help me with my hair. She drove past the house just once, my hairstyle was simple, and we headed out the door to my makeup appointment relatively on time. Then, because I was chatting and not thinking, we drove straight past the salon. We couldn’t make Google maps work in the cell hole we used for a turnaround, which cost us valuable time, and we arrived a wee bit late. Time sped up exponentially from there.

Not before 9:45, definitely before 10:00. Kristy’s last words to me. I am always early to dance class. I was late to my first showcase. I walked through the doors at 10:01 as Kristy was giving final directions. I passed my teacher Mason who said that we were in the first heat. In a controlled panic  I struggled to put on my dance shoes, take off my new dance jacket, and meet Mason in time to start a waltz.

Relax.

Shoulders down.

Look left over Mason’s shoulder.

Head held high.

Oh, relax.

Shoulders down.

Good gawd, I thought. What makes me think I can do this?

It wasn’t until I sat down after the dance that I realized I was trembling. I realized a lot that day, but strangely, I’m not in the mood to dwell, or analyze, or even think. Just relate.

I am exhausted. I am sad. I am busy. I am grateful.

My teacher, Mason, is a wonderful young man who cares so much about what he does. He is learning about the limits that Parkinson’s disease brings to bear, and he is trying his damndest to help me move past them. Plus, he’s my friend.

My circles were just about all represented at the Showcase. Becky from my race track family. A dear, vital, vibrant friend.

Tracy from Oregon State Gamma Phi Beta. My friend since 1979. Wow! A more caring person would be impossible to find.

Jean and Diane from Parkinson’s Boxing. Diane is 74 and just learning to play the violin. She is an amazing writer and has the sweetest heart. Jean is my workout buddy and friend, a ray of light on cloudy mornings.

My new dancing friends have been so kind and encouraging. Applauding my progress and successes. Ignoring the rest.

My ability to time my meds and food was taxed on Saturday, but Erik’s voice in my head steadied and reminded me.

I made it through the day’s 20 dances. Exhausted. A little bleary eyed. Definitely hungry. Exhilarated.

What made me do this? Ballroom dance. Showcase. A competition in Indianapolis in less than two weeks. Practices. Shoes. Dresses. Everything.

Which brings me back to the movie. We have all been rejected for things we cannot change. To those who have done the rejecting – stop it. To those who have been rejected – there’s a fine line between loyal perseverance and just plain pathetic. Walk it carefully.

I am doing this for me. Parkinson’s is progressive, but it doesn’t have to be fast. I am doing what I can to slow it down. And pushing myself to do things that are scary or difficult or exhausting or new is how I can do that. So to anyone who asks why, I tell them.

“This is the last time I will be this good. I don’t know when I’ll be bad, but right now, with a lot of pushing, I am going to do this.” As long as even one person understands the struggle and the cost, I can make it.

I am still finding out who I am. I am thinking this will be a continual process. For the last few years, I thought I knew, but life changes. So I’m searching again. When I find it out, I’ll do it on purpose.

And I will wear red shoes.