We all walk ancientrails. Welcome to the journey.

Rivers and Mountains, Bees and Kate

Spring                                                            Mountain Moon

fan kuan, travelers among mountains and streams

Fan Kuan (960-1030, a.c.e.), travelers among mountains and streams, Song Dynasty

So my mind is filling with rocks, pines, mountain streams, magpies and mountain lions; a sign that the mountain theme has begun to take hold. I plan to spend this spring and summer sketching and photographing rock formations, mountains, summits, animals, water, trees and other plants, then interpreting them with sumi-e. I’m continuing to read the shan-shui (mountains and rivers) poets, moving back into the world of Chinese classical painting.

Qabbalah study continues. We’re investigating time and the qabbalists have their own unique approach to it. Here’s an example. To experience what I would call sacred time-they use the phrase eternal time-qabbalists want us to pay closer attention to what I would call ordinary time. This is far different from trying to collapse the hold of ordinary time through meditation or koans or mystical experience. The easiest example is the week. In the qabbalist’s world we count six ordinary days, then we experience shabbat. Shabbat is a time out of time, a moment in the week when the observer exits the world as usually experienced and enters sacred time. But. It’s observable as sacred time because of its contrast to the six days that precede it and the six that follow it. Thus we can find sacred time through attention to measured/ordinary time.

honey supers after the harvest, 2013

honey supers after the harvest, 2013

Getting ready to hive bees for Beth Evergreen on Saturday morning. Had to dig around in all the bee stuff we brought from Andover since Rich Levine, local bee enthusiast, needed a hive box and twenty frames plus accessories. I had enough. Getting out the hive tool, scraping propolis off the frames, moving supers put me right back into beekeeper mode. Still don’t think I’m willing to do it here, too much hassle with the need for a bear proof enclosure which means strong electric fencing. I will enjoy helping others, though.

Singapore, 2016

Singapore, 2016

Kate’s gained almost five pounds! This after a long period of weight loss. I called her my incredible shrinking wife. Our consult with Betsy, the nutritionist for New West Physicians, was a turning point.

Kate’s building momentum. The Sjogren’s conference left her feeling less alone with this nasty disease since there were hundreds in attendance from all across the U.S. who not only have it, but have similar experiences to hers. She also had her second session of physical therapy this morning and continues to be excited and enthusiastic about it.

Makes me smile.

 

 

A Day in the Life

Spring                                                                         Mountain Moon

In hopeful news for us a big spring snowstorm is on the way, perhaps 16-24 inches over Friday and Saturday. I know, I know, those of you reading this closer to the Atlantic and sea level can only groan at the thought of yet more snow and cold, but we’ve had a very dry winter. Let it come.

Next Wednesday morning, April 25th, will be a red letter day here on Shadow Mountain. Not a red flag day, but a red letter day. That will be when Best Buy delivers and installs our new dishwasher and takes away forever the Samsung lemon. Like the upcoming winter storm it cannot happen soon enough.

Kate’s feeling much better. A combination of things. Some weight gain, the beginning of physical therapy, returning to her diclofenac for arthritis pain, better nausea management. I told her last night that it was as if she was poking her head above the clouds for the first time in well over a year. A long siege. May the healing continue.

A quiet day today, get some laundry done, some cooking, hair and beard trim by Jackie, get ready for Ted of All Trades second visit. Call an electrician to wire a fixture in the bedroom for a ceiling fan. Around the house stuff.

 

Gabe and Kate

Spring                                                                        Mountain (New) Moon

Nurse checking Gabe's blood pressure post-op

Nurse checking Gabe’s blood pressure post-op

Gabe is now portless. The port through which he received his infusions of clotting factor, essentially a plastic plug set into his upper left chest, is gone. He’s had one for eight years, 80% of his young life. I asked him if he missed it. “Sort of.” The port was the culprit in his septicemia returning last week, harboring a nidus of the bacteria, “a place in which something is formed or deposited.” Jon’s had to be there in his room for most of the time since Thursday night at 12:30 a.m. when the lab called with the blood test results. It’s a long stint. For both of them.

I went to the afternoon sessions of the Sjogren’s conference with Kate, listening to lectures on joint pain and Sjogren’s, dry mouth and its dental implications, and on dermatological issues. Sjogren’s, as a syndrome, is a collection of symptoms that may seem unrelated, but have an underlying cause, in this case a dysfunction in the autoimmune system. The number of symptoms are a problem for researchers, physicians, drug companies and, particularly, patients. Each symptom like dry mouth, dry eyes, dry skin, fatigue is a separate entity that must be dealt with in its own way. This means an often bewildering number of ointments, salves, mouth rinses, eye drops, as well as methods for managing both stress and fatigue. And the need for treatment is at least daily and in most cases a number of times per day. That’s exhausting in and of itself.

20180414_130149For example, we measure Kate’s energy in K.U.’s, Kate units. When she’s used up her K.U.’s for a day, she often goes to bed. No matter what time it is. One woman, Sjogren’s is overwhelmingly a woman’s disease, measures her energy in spoons. She sets out 6 spoons and as she does a task, she removes a spoon. When the spoons are all gone, so is her capacity to do things.

It is, in other words, hard.

Right now, as well, Kate’s doing all these with one hand literally tied up. Makes it good that we’re together.

tao2Even here the tao flows. Tapping into it means feeling the surges of healing, of exhaustion, of relationship weakening and strengthening, of giving and receiving. Accepting them as they come, not fighting them, not trying to be stronger than we are, yet finding the moments and the things we can do to make healing hasten. In this moment the tao reminds me of the power of love, the wisdom of the body, the necessity of rest. Going with it. Letting it come through me. Like water rushing down the mountain.

 

 

Gabe, Kate, Mark

Spring                                                                         New Shoulder Moon

septicemiaBusy Friday the 13th. Jon took Gabe for a follow-up after his bout with septicemia on Thursday. At 12:30 am they called with the result. Infection still present. Immediate hospitalization. The culprit? His port through which he had been given his infusions of factor, a drug that supports his clotting cascade (Gabe’s a hemophiliac.). So. Surgery yesterday at 6 pm to remove the port. No new one will be placed. Instead he will become one of five people receiving subcutaneous injections of a new drug that maintains his clotting ability without the factor. This is his second hospitalization in the last three weeks.

April 4th

April 4th

The national Sjogren’s Foundation annual conference is, ironically, at a Hyatt-Regency in Aurora, directly across Colfax Avenue from Children’s Hospital. Gabe’s in room 716 at Children’s; Kate’s in room 828 at the Hyatt. I’m on Shadow Mountain taking care of the dogs. That means Kate spent yesterday afternoon and night one-handed on her own at the conference. Gives you an idea of how much this conference means to her.

Her spirits are good. She’s gained a bit of weight, following advice from the nutritionist consult. Make every bite count. She’s also managing Sjogren’s, hence the conference and starts physical therapy on Monday. That’s plenty.

I went to visit Gabe yesterday after dropping Kate off at the Hyatt. Easy drive. He was in good spirits, too, tethered to an IV pole pumping antibiotics in through his port, but otherwise engaged with magnets and youtube. Apparently he was watching videos of pic line insertions, a procedure similar to installing a port. Anything that penetrates the skin, especially something that remains in place over time like Gabe’s port, a feeding tube, long term IV compromises the body’s capacity to keep critters on the outside. In this case Gabe’s port has been infected with a bacteria that normal lives on corals. Yes, corals.

A whole team of yellow robed, mask wearing infectious disease docs came into his room while I was there. There are three other patients in the hospital right now with the same infection. They can’t find it at the hospital and can’t figure out any commonalities among the patients. It’s troubling because septicemia can be deadly.

Suicide_cases_from_16_American_states_(2008)As I left Children’s to go home and let the dogs out, I got an e-mail from Paul Strickland. At first I didn’t understand it because the sender was someone I know only very peripherally. About halfway through the lobby, yes impaired walking, I understood it. Mark Odegard’s step-son, Chris, from his marriage to Margaret, shot himself outside his mother’s home. The wound was “not survivable,” though last I heard his body was still alive.

Mark made time for Chris, not only during his marriage to Margaret, but after, too. He wrote yesterday that Chris had become despondent in recent months, hearing voices. I can find no words. Only, so sorry. What a sadness.

SeoAh Day

Spring                                                                   New Shoulder Moon

20180408_123029Yesterday was a SeoAh day. After breakfast we went to the King Sooper and picked up food for Thai/Korean Chicken Soup and a shrimp/rice noodles dish. SeoAh knows exactly what she wants, picking among the produce items carefully, smelling the spring onions and the leek. On the leek, “I can use this.” So into the cart it went.

She bought me a cafe latte at the instore Starbucks, but while we were drinking our coffee she admitted, a bit sheepishly, that she actually prefers instant coffee. When we went past the InterMountain Rescue Shelter, “Rescue the Rescuers” booth on the way out of the store, she wanted to know how she could help them.  She’s missing Murdoch.

Back home she made me an instant version of rice cake soup that was surprisingly good. Gonna take a picture of it and pick up some more at H Mart next time we go to Jon’s.

20180408_182234After Kate’s shower, SeoAh helped her with her hair, combing it out. Kate’s improving, gradually. She starts P.T. this week or the first of next. Tomorrow morning we have a nutritionist consult to discuss a weight gaining diet for her. She was already petite, but post surgery she’s become even petiter. Charming, but she’d feel better with a few more pounds for stamina.

In the evening we took SeoAh over to Sushi Win in Evergreen. She loved it on previous visits as a sushi connoisseur. Seafood is her favorite protein, having grown up close to the Korea Strait which joins the Yellow Sea, the East China Sea and the Sea of Japan. Xi, a Chinese waiter, took this picture of us there.

Attenshun!

Spring                                                            New Shoulder Moon

uface me

Good conversation yesterday with friend Bill Schmidt. He turned 81 on Friday, a birthday call. He’s deeply involved in a business, UFaceme, (picture above), writing code, doing statistical analysis, using pitch decks to secure investors. May we all be as vital at his age.

My phone call with him took place at the Final Approach, the food court at the cell phone lot for Denver International Airport, while I waited for SeoAh’s text. She flew in from Atlanta yesterday to stay with us until Thursday. Her English has improved significantly and we chatted easily on the way back from the airport.

Been wondering for a while why I’m so damned exhausted. Caretaking seems to demand far more of my psyche than my body. The various chores I do, by themselves, are not physically onerous. Washing dishes. Not hard. Doing the laundry. Not hard. Running the vacuum, picking up. Not hard. Grocery shopping. Not hard. Taking Kate to medical appointments, handling the tasks with her that being one-handed makes difficult. Not hard. Feeding and managing the dogs. Not hard. The sum of them all? Makes me, as evening approaches, short of emotional reserve and wanting to flop in a chair. Why?

decision makingWell, a reason occurred to me. Decision fatigue.* This involves the affective cost of constantly making decisions. The theory suggests that we have a limited amount of attention and choice-making each day. Sleep restores it, but as we make decisions our decision making ability depletes, often quite rapidly, leaving us emotionally drained and less than crisp in whatever we’re doing.

How does this apply to caretaking? All those not hard things each require a certain level of attention and decision making. Do I wash the dishes now or do I wait until after supper? How much laundry soap do I use? Which setting on the machine? Is it time to vacuum again? Does this stuff need to get put away? Where does it go? Why isn’t Rigel eating? What can I do to help her? What’s on the grocery list? Do I need to get gas? You get the idea.

Though none of these things individually are hard, many of them are ones that Kate takes care of in the normal division of labor in our relationship. That means I don’t have settled, habitual ways of handling them that bypass decision making. Over time I would gain those, figure out a way to include all of them in my day without having to find the detergent, measure it, wonder how long the cycle takes. But for now each of them requires a flood of mini-decisions, each of which drains energy.

Just writing about this makes me want to find a chair, flip on the TV and zone out for a while.

*decision fatigue refers to the deteriorating quality of decisions made by an individual after a long session of decision making.[1][2] It is now understood as one of the causes of irrational trade-offs in decision making.[2] For instance, judges in court have been shown to make less favorable decisions later in the day than early in the day.  wikipedia

 

We’re Living in a Post-Dishwasher World

Spring                                                                  New Shoulder Moon

Visit to Lisa, our primary care doc. Kate’s post-op. Biggest issue is weight loss. Contributing factors: nausea, lack of exercise, Sjogren’s, especially a sore mouth sensitive to sharp food and spicy food. Good news, shoulder pain seems gone. Which was a big reason for the surgery in the first place. Lisa showed us pictures of her Izzy, a labradoodle puppy. Very cute.

After that we went to Plato’s Closet, a second hand clothing store. I’m still dressing my Colorado persona. Bought several flannel plaids, ten, I think, for less than the price of one new one. Good brands, too. I was gonna ask the help if Plato’s Closet was a play on Plato’s Cave, but decided against it since it seemed unlikely any I encountered had ever heard of Plato.

20180404_17503020180404_174842We drove on into Denver, Colfax Avenue (sort of like Lake Street in the Twin Cities). To GB Fish and Chips. Their motto is “In Cod We Trust.” This is one of Ruth’s favorite spots and yesterday was her 12th birthday. We had a nice visit with her and her phone. Gabe was there, too, out of the hospital after septicemia, but still on IV antibiotics. He looked a bit exhausted.

Earlier in the day Rick came out from 1 Stop Appliance. The A team at last. He figured out what’s wrong with it. The main computer board and a computer board for the inverter were both shorted out. Significant since they were just installed Wednesday of last week and Monday of this week.

samsung-built-in-dishwashers-dw80j7550us-64_1000

looks like an alien

Rick noticed water splashes along piping near them, then showed me corrosion both on our old main board, which he had brought, and the new ones. Problem. Since to look at a dishwasher it must be pulled out, that means it’s disconnected from the water and electricity. You can’t run it and look for leaks so it’s necessary to use secondary data.

He took pictures, muttered. Then he told me Samsung might condemn it. Sad. Now we’re condemning dishwashers. What’s next? Sofas? Toasters? Shoes? I hope they do condemn it. It’s nothing more than an expensive drying rack right now. If they do, they either buy it back from us or give us a new one. Either one is ok at this point.

Ironically, I found this article just now from the Atlantic on April 3rd:

Doing Dishes Is the Worst  This is now an empirically proven fact. Dishwashing causes more relationship distress than any other household task.

 

An Amazing Gift

Spring                                                                      New Shoulder Moon

1514204356436Family. Often, our main contribution to the world and its future is simply doing our job as mammals and raising our children, staying in touch with our kin groups. That families can get out of whack, become dysfunctional was almost a mantra of my generation as we baby boomers pushed back against establishment values, upended gender roles and experienced backlash from the so-called greatest generation. (which I think is an unfortunate use of a superlative) So for many of us boomers now careening into old age, trying to slide home before the devil knows we’re dead, family can be problematic. Those of you who understand this know who you are.

It’s this context that makes what might be ordinary in many, maybe most families, so wonderful. SeoAh comes on Saturday to spend a few days with us, help lighten the load. Joseph, too, offered to come. His work schedule makes dropping everything hard, so we agreed that he would stay behind. He has an exercise he’s in charge of this next week.

1514558225692I’ve been proud of my boy for a long, long time, but I was never prouder than when he offered to ask SeoAh if she would come up. “And I can come, too.” She told Joe, he said, that, “She wants to come. She needs to come.” This is family at its best.

At this age there are unknowns lurking. Yes, there always are, throughout life, but in the third phase the probability of something showing up gets higher with each passing year. That means there is an undercurrent of uncertainty; sudden disastrous events can happen in a minute. Literally. No matter how self-sufficient we are a stroke, a heart attack, a fall, a difficult disease diagnosis can push us out of our normal life into one where we need not just some help, but a lot.

Camus one-cannot-be-happy-in-exile-or-in-oblivion-one-cannot-always-be-a-stranger-i-want-to-albert-camus-123-46-22Kate’s shoulder replacement surgery has shown us that we have two immediate resources to soften such a blow. SeoAh and Joseph’s response means we have family we can count on. And, Congregation Beth Evergreen has offered, through several different people, help. The surgery has been a good, non-disastrous moment in that regard. The tao of the time has been deepening relationships, between Kate and me, between us and family, between us and Congregation Beth Evergreen.(I say immediate resources because I know there are still Minnesota friends who would aid us as well if things got dire.)

What the affirmation of these ties means is that the uncertainty of the third phase can be quieted. We don’t have to worry about being alone. This is a peace I didn’t know I needed until this moment. That uncertainty isn’t a top-level anxiety; but, it exists, fuzzed in the background and brought into the present during Kate’s recovery.

The tao flows through this moment in unexpected, powerful ways, allowing us to lean into the future rather than shrink away from it. An amazing gift.

 

 

Life Extenders

Spring                                                                  New Shoulder Moon

bunnyus“I’m a doer.” Kate said this yesterday. Yes, she is. So much so that we often referred to her as the energizer bunny. Jon’s divorce, Sjogren’s and arthritis has made doing difficult, often downright painful. The combination put her in a tough place psychologically; but, it feels now, for the first time in a year plus, that she’s going to push through it. As Winston Churchill said, “If you’re going through Hell, keep on going.”

shoulder reversalWe had her first post-op appointment yesterday and got to see an x-ray of the new appliance. This isn’t hers, but it’s an accurate representation of what we saw.  As this image shows, the ball of the shoulder is now where the socket used to be and the socket where the ball used to be. This reverse total shoulder uses different muscles to power the arm, the deltoid in the main. It also reduces pain more for certain patients though I’m not sure why.

Seeing the screws, poking out from the ball, seemed strange to me, but it underscores orthopedics as the carpentry of medicine. Sawbones. The multiple uses of the inclined plane. Thanks, Archimedes.

These surgeries, joint replacement, aren’t perfect, but they’re way better than doing nothing. My knee, for example, is not the knee I had when I was 40, but it is pain free and I can work out without contorting myself. I can’t stand for long periods of time, but I can stand without pain. Kate has two artificial hips and now an artificial shoulder. Pain reduction is a primary benefit of all these procedures and it’s usually pain that leads to them in the first place.

peasantsWe often talk about folks for whom physical labor is key to their job: trades people, movers, utility workers, lumberjacks, mechanics, farmers, even physicians. Prior to joint replacement as an option, they had to suffer through the pain or stop working. Imagine what it was like on the frontier to have debilitating hip pain, a shoulder that would no longer move above a right angle, a knee that buckled under pressure. Or, in the middle ages, for peasants. Soldiers. Domestic servants.

bionicsIt’s likely, for example, that Kate’s years of lifting babies and young children led directly to the arthritis that ruined her right shoulder. That’s the Schneider hypothesis since the sort of dysfunction her shoulder displayed is most common in women.

These are life extending surgeries, making it possible to live, rather than exist. I imagine that soon bionics will be more generally available and will complement this sort of procedure, perhaps making up for atrophied muscles which are a common sequelae of joint problems. All this is part of the glass half full view of the future.

 

 

Recovery Now

Spring                                                                          New Shoulder Moon

20180401_0632072

this morning

The new shoulder moon has gone from new to full and over the course of its transition Kate’s new shoulder has begun to heal. Still a long road ahead but her pain is better, her overall spirits, too. She still has some nausea, which is tough for her because it makes her very uncomfortable. On the whole though her recovery is on track after those first four days post-op.

The routine of caregiving has become easier. I’ve learned how to alter my routine so it makes things simpler for her and for me. I even did two loads of laundry yesterday. Now, this may not seem like much, but Kate is a laundryhead and as a result it’s something I’ve done only rarely in all our years of marriage. Before we were married, yes, but she likes laundry. General picking up, cleaning up, something we might both do, is now my responsibility so I just do it. Cooking and shopping are mine now; as is doing the dishes, though I hope our very expensive dish drainer will actually wash the dishes, too, after Monday.

Kate’s has two post-op appointments this week, the one I mentioned on Monday at Panorama Orthopedics and Wednesday with Dr. Gidday. By the time the new shoulder moon wanes her recovery will be well advanced.

 

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