Spring Mountain (New) Moon
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.
For 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.
Even 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.
Busy 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.
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.
Yesterday 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.
After 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 
Well, 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.
We 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.
“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.”
We 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.
We 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.
It’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.
Surprising, sophisticated, jawbreakingly awful sign on a conservative church sign board: “Anxiety is just unbelief in disguise.” If you live in Christworld, there is a certain sense in which this appears to be true. If only your belief were strong, you would need have no worries. Look at the lilies of the field.
Friend Tom Crane sent me a book, he does that every so often, “
We have elaborate protocols for people with pulmonary issues like COPD or emphysema, cardiac issues of many nuances, joint replacements for tired and painful knees, shoulders, hips; but, what do we have for a part of our lives that constitutes a third of our time use each 24 hours? Yes, there are sleep centers, but they’re not on offer often and besides it seems that cognitive behavioral therapy is the current gold standard. Problem is not many CBT folk specialize in sleep and we’re certainly not referred to them anyhow.
Kate has slept well, mostly, her first two nights home. She’s controlling her pain with tylenol and the occasional tramadol or vicodin. She had a bout of nausea yesterday; but, unfortunately, that’s not really unusual. Her weight is up, thanks, she thinks, to good intravenous hydration in the hospital. Prior to surgery she’d had trouble keeping water down. She’s on the mend.
Snow. While the rest of the nation east of the Rockies has been pounded with storm after storm this land of ski resorts and mountain passes has been dry, one of the 14 driest winters in the state’s meteorological history. Last night though, maybe 9 inches of heavy, wet fire dampening snow! Welcome.
