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Learning and trying to be kind and living my life as fully as I can stand it.

Thursday, November 12, 2015

Thursday nap time

Nap time is like a tax return that I spend over and over again before it arrives. Will I do some work? Will I write? Will I clean the kitchen? Will I put toys away? Write a letter? Sit on the couch and watch TV? Read a novel? In the hour and minutes leading up to this precious time my mind races and then tries to slow itself, picking and choosing a value to follow, attempting to ascertain which element needs the most attention. Or which avenue will bring me the most pleasure. The most rest. It is different every time--both the need and the decision.

The exquisite peace that comes with the sound of four sleeping children has not worn off. Not in the slightest. If I hated all else about parenthood, which I do not, it would be worth it just for the experience of this quiet.

I haven't been writing here because there has been too much struggle in my own mind. This Monday I was uneasy, having a hard time sitting down and focusing. All I wanted to do was eat. And not do my work. Monday is a work day for me. I take the kids to Stephanie's house a mile up the street. It is good practice for the days when we will be getting everyone ready and out the door for school--in other words, it's a complete shit show. We arrive disheveled, which is our norm. Hair not brushed, sometimes fed, several bags hanging off my shoulders as I carry four raincoats, four or eight changes of clothes, a random assortment of food and a gallon of milk in the door. The kids love it there. I leave them and come home, turn on my laptop and get out my work plan for the day. The adjustment from mom of four to project coordinator is harsh. Confusing. My brain slowly uncurls and sits there, waiting to be pushed or kicked or reminded into action. The ten hours of freedom spread out like a raft at my feet and the possibilities are so numerous that I stand up to make myself a cup of tea to avoid being crushed by them. Time is a different animal when I am without my kids.

The uneasiness, the agitation, stuck to me like glue. Felt pulled to blog, opened it up, didn't want to. Completed a task for my project, had to stand up and sweep the floor because I couldn't stand sitting still. Called some patients. Wrote and responded to email. Turned in circles, mentally and physically, and sat down to work some more.

Today is much better--my state of mind has improved each day this week. Seeking out and receiving the wise counsel of some friends helped. Reading has helped. Talking to my dear husband about two things I've been struggling with helped a lot. The relief seeps in as I'm able to step off the hamster wheel in my head. There will possibly be two essays that come from the difficulties of this week, though not today. Today is checking in, clearing the shelf, taking the temperature and moving on.

What caused the stuckness? The wanting to shake off my skin, wanting to step out the door and walk away, wanting to eat sweet and salty things until my belly rounded out even more? A big fight with a dearly loved person in my life, stirring things up and refusing to be put down no matter how much I wanted to stop thinking about it. A possible change of health insurance making me feel rushed and scared and uncertain. A visit to my old organization to give a talk at their monthly meeting, wanting to say thank you for my liver. For my life. For my children. All of that and the first big deadline at my new job approaching, reminding me for the zillionth time how much I prefer starting things to finishing them.

With practice I am getting more able to roll with these things. To give myself a break and say "I'm feeling stuck and feel shitty and I wish I felt differently but I don't." To call a friend and say "I need help. Can I talk to you about this for a few minutes?" To say to my husband "I don't know how much my health care is worth to me. To our family. $9,000 seems like too much to claim for myself and yet the idea of leaving the security of what just started working and trying something new makes me so afraid." And to have him say "Ok." So many opportunities to practice. To breathe deeply. To sit still when all I want to do is move away from the discomfort. To not swallow the anger, the fear, the resentment, the shame, the loneliness, the sadness. To look at it, be curious about it, squish it and stomp on it and push it away. To be in the struggle and see it, over and over again, as my teacher.

All of those things are going on and then on Tuesday evening three of the four kids started throwing up. Blech. Talk about being brought right into the moment with a vengeance. These four small people are my teachers too.

Friday, November 6, 2015

Loving the blog

This is an old picture and a new link. Bloglovin

I'd love it if you'd follow the link above and take a moment to follow my blog on Bloglovin.

I'm at work on this lovely Friday afternoon taking a quick break to update my favorite online space.

Random moments to share from this week:

Pulling my four kiddos in our new red wagon in the chilly fall air yesterday. Watching them run in circles, notice ducks, open their eyes wide at the velocity of their chariot as it raced down a smallish hill. I enjoy their company very much.

Sitting down to hot soup after the walk and having all four of them actually sort of eat. Varying degrees of spoon dexterity. My son saying "Delicious!" with every bit. It struck me that I couldn't have dreamed such a moment, in all of its sweet ordinary extra-ordinariness. Feeding four toddlers is rarely enjoyable but when it is, man is it delicious.

Listening to the words pour out of my youngest baby's mouth. Neither of the older ones was talking much at eighteen months but she is determined to catch up with them. Has been since she became aware of them. Fun and funny to watch.

Watching the love and camaraderie between each set of twins. There is a special awareness that each one has for his/her twin. I hardly take time to notice it but it is there. It also manifests in physically mauling the other one, in a mostly loving way. What would it be like to share space with someone so closely, in the womb and out of it?

More to come soon. Thanks so much for reading.

Thursday, November 5, 2015

Picking up where I left off

So there we were, sitting in front of the Admitting desk, in the lobby of my hospital. I consider it my hospital because I got my liver transplant there back in 2000. And I work there now. And of all the hospitals I've been to, and I've been to a lot, this is the one where I best know my way around. I can tell you the TICU, the transitional ICU, is on the 3rd floor. As is the ICU. As is the operating room. The 6th floor is the liver floor--for post-transplant patients, and for the ones who come in many times while they're waiting on the list for their transplants. I've waited at the Admitting desk more than once and we sat there again. Quiet. Waiting.

I don't know what I looked like on the outside. On the inside I felt tired. Still. Quiet. Glad to be there, glad there would be someone taking care of me soon. Whatever I looked like on the outside was making my mother nervous and she went up to get a status update more than once. Finally, after close to an hour, a nurse in manager clothes rather than scrubs, came to talk to us. She suggested I get in a wheelchair so that, when the time came to move, we would be ready. I agreed.

Not long after that she decided we'd head up to the 6th floor to wait for my room. It should be almost ready. She told us her name and I recognized her from somewhere, from something, but I can't tell you her name now. She had curly hair and a nice face, a lanyard around her neck with her ID badge hanging from it. Something floral on, either her skirt or her top. I think she was the manager of the 6th floor.

We took the elevator up to six, got off and rolled down the hallway to the right. The room wasn't ready. She parked me near some benches and my two friends and my mom sat or stood around me. This nurse manager decided to take my blood pressure and went off to find the equipment. When she came back she told us she hadn't used one of these machines in a while but she thought she could figure it out. I sat in the wheelchair, eyes closed. Quiet.

The machine did its thing and produced some numbers. She paused. "What is your blood pressure normally?" she asked.

"It runs low," I said.

"How low?" she asked.

"Um. Usually around 100/60 or so," I said.

"Ok," she said. "I think we're going to need to change the plan."

And suddenly there was a lot going on in our corner of the hall. A handsome male nurse came and knelt at my right, talking to me about how he would be starting an IV. A young, small, Southern woman came too and took over. Not from him but from our blood-pressure-taking nurse manager. At least she took over from a talking standpoint. They called the rapid response team, who apparently were held up with another event on another floor. Things were hopping. Another nurse came on my left side and started putting an IV in that arm.

"Wide open," someone said.

"We're going to bring you to the ICU instead," someone said.

I listened as they talked amongst themselves, getting things arranged. Giving direction. Taking direction. Making plans. Apologizing to me for the lack of modesty they were providing as they took my shirt up to put the leads of a heart monitor on my chest.

"No problem," I said. "I appreciate the concern.

Eyes closed, listening. Only opening each time a new voice appeared. Not feeling in dire straits. Not feeling any different than I'd felt when we arrived. Than I'd felt when I woke up. Just tired. Quiet.

I heard my mom say to someone, about me "She is listening to everything. She worked at the donor network for a long time and she understands a lot so she is listening to everything you're saying, even if if doesn't look like it."

That was true.

We rolled down to the ICU, me in the wheelchair instead of the gurney that they wanted because they wanted to move now and because I said I was fine sitting down. We rolled into the ICU. The last time I was there was for work, to stand at a patient's bedside as his heart stopped. Years before that I was there as a patient, looking up at the fixtures on the ceiling, hallucinating due to lack of sleep and encephalopathy. A few times in between for work. Now as a patient again, feeling way too healthy to be in this unit, but looking very much forward to lying down in a bed. And feeling cold cold cold because I had IV fluid pouring into the veins of both arms.

The hustling continued. I got to lay down. I asked for warm blankets--the best thing about a hospital. They got me settled and immediately my blood pressure was good enough that I could tell the ICU staff wondered what I was doing there. "It's much better now," said the tiny Southern nurse from upstairs. "It was 70/30 up there."

Hypotensive. Blood pressure low enough that they brought me to intensive care. Blood pressure low enough that, back when I was last in the ICU for work, recording a dying patient's vital signs, a systolic blood pressure under 80 indicated that the organs were no longer being well-perfused with blood and oxygen. Scary low.

And to myself I thought "I think they must have done the machine wrong."

Often in my regular life, when I'm not in the ICU or anywhere near a hospital, I will catch sight of myself in a mirror and think "That's what I look like?" Surprised at my fly-away hair, the freckled, wrinkled face with dark circles under my eyes. It happens when I see pictures of myself too--that's me? That's what people see? I don't think much about what other people see when the look at me--my eyes are so wide open, paying so much attention to what is happening around me, that I feel like my face is just the inside of my eyes--the screen of what I'm viewing. So when I see a startled reaction in someone else's face when he or she looks at me, I get the first sense that the way I look is different than it usually is. That happened a few times that day, along with some comments about how much better I looked, how much less like a ghost, now that the fluid was circulating and my blood pressure had returned to a normal, life-sustaining level. I still felt the same. Tired. Quiet. Now cold, though the blankets were helping a big. I requested a Bare Hugger, an inflatable blanket that fills up with warm air. . .ahhhhhh, that thing is great.

I had another male nurse. Young, tall, lean, handsome. A brand-new shiny wedding ring on his finger. He was good. At one point I apologized to him for being a boring ICU patient. "It's ok," he said. "I just got back after a few weeks off so it's nice to start off slow. Plus they were about to send me home due to low census so I'm glad to stay."

They put a catheter in, which was not enjoyable. I've had them before but never when I was so awake, so full of feeling. They brought a commode to my bedside at my request. I'd never noticed before that ICUs don't have bathrooms in the room. I was not going to do a bed pan. Blech.

Settled in, warming up, grateful to be laying down,  I chatted a bit with my friends who were still there. With my mom who was still there. They rotated in and out.

At some point my surgeon came in, with a hepatologist who was part of my team fifteen years ago. We grew to like him but it took a little while--he didn't smile often. What I remember most is the first time he did a liver biopsy on me. The steps of a liver biopsy are--two shots of novacaine in the skin between two ribs on your right side and then a big fat needle shoved into that spot to pull out a piece of liver. Novacaine shots, the numbing agent, sting like crazy as needle goes in. The bigger needle feels like a punch, not because of the pain but because of the impact. He said "This will feel like an ant bite," and afterwards "I'm from Texas. We have big ants there."

My surgeon stood to my left, looking down at me. "See?" he said.

"You were right," I said. "I should have called sooner."

"They're going to keep you here over night, even though you're stable enough to move upstairs. They have the room and it's just easier."

"I think that blood pressure reading was wrong," I said.

And as I heard myself I felt a very slight awareness that something was really wrong with me.

In my brain.

"You are in bad shape," he said. "Everything is low. Except for your Prograf which is 22. And your creatinine which is 2.7. You're completely depleted. It is going to take your body 2-3 months to recover from this."


Prograf is the main immunosuppresant I take to keep my body from rejecting my liver, from seeing it as something foreign that needs to be removed. The level is supposed to be 5-7. It was 22. Toxic.

"That Prograf level could account for you feeling crazy," he said.


And then he and the other doctor stood at the foot of my bed and performed the magic, the science, the art that is diagnosis. The other liver doctor was now also an immunologist. He seemed like a different guy--lit from within. Happier. Brighter.

To witness smart people thinking aloud, doing what they do, problem-solving and travelling down the well-worn but always mysterious internal paths that make up our bodies is a gift. When other people tell me stories about their hospital experiences, or about meetings with various doctors and how frustrating it is that they can't immediately find the answer, I say "I think inside our bodies is like the solar system. So vast, so much unknown, so impossible to ever really know. It's amazing they can ever figure it out!"

"We switched you from Cellcept to Imuran four years ago because you wanted to get pregnant, right?" my surgeon asked.

"Actually, we switched me because my colitis was bad and we thought Imuran would help it. And because I wanted to try to get pregnant soon and would have to switch it then anyway. My colitis got bad after I was in El Salvador and it's been bad since then."

"Oh," said the newly bright liver doctor. "That trip probably totally changed your gut flora. A biologic would help with that. We can fix that."

For the first time I felt something different. Deep, profound, penetrating relief. Not for the first time in days or weeks. The first time in years.

Four years of not solid poop. Four years of frequent and then on and off stomach pain. A year of spending entire nights curled up on the floor of the bathroom, cramping in agony and putting myself in and out of a hot bath because it was the only thing that gave me a modicum of relief until the cramping passed. More than a year of working a high-pressure management job, commuting to work every day and not letting my face change when, in the middle of a conversation, I felt the body-flush of pending diarrhea and held it in until the talking concluded. Four years, two twin pregnancies, and a level of exhaustion that just became my normal. Recurrent pain that became normal.

 "Fixing it would be good," I said.