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

Wednesday, December 16, 2015

The unhermiting

Buying books that I loved in order to give them to people I love makes me feel happy. Full of good memories of curling up in a quiet corner to read. I add books to my cart on Amazon and then feel a dip in joy as I tell myself that I should buy these books from a local bookstore to support my community and small business. Yep. That right there is a good insight into how I feel a lot of the time. My values bat against my forehead like kitten paws playing with a soft toy. . .until one unleashes its claws and the points sink into flesh. You should! Because I believe strongly in supporting local bookstores. Just as I believe strongly in feeding my children healthy foods and in teaching them manners and in not having too many toys and in. . . so many things.

Should is a dirty word. It is an almost constant bedfellow of mine. I keep trying to kick it out but it really likes to snuggle up close.

Back in October when I was flying high and writing every day I was living life without the spectre of Should. It was gone. I felt like I'd put down my 1,000 pound back back--the bag full of caring so damn much what other people think. It was exhilarating. A little scary even. My mind was so powerful--I could see connections between people and ideas create themselves in the air in front of me, like physical, obvious things. I felt so joyful and strong and sure. The clarity. . .I miss it.

These days I can't get away from feeling raw and vulnerable. So self-conscious. I hate it. I knew the post-hospital feelings wouldn't last forever but it's been an especially rough come down. The back pack is cinched tight on my shoulders and I wake up every morning stiff and sore. I have about seven half-written blog posts that I started and then stopped because I couldn't stand the sound of my own written voice. Blech. Why would anyone want to read this? So navel-gazing and unimportant. Why do I even have a stupid blog? The insecurity just seeps into every pore and I feel pathetic. Even as a part of me knows this is not the truth. Knows what to do to get away from it or try to. I just can't right now.

And I keep it largely to myself. When I was full of joy and the feeling of really getting it, getting what this life is all about, I wanted to share it with everyone I knew. Here! Take this wisdom and add it to whatever you have going on. But the itchy, doubting, yucky blahness? That makes me want to sink into the couch and eat crappy, soothing food and watch TV and maybe drink some booze. . .during the day. It makes me want to be a hermit because I don't want any advice. I don't want any reassurance. I only want someone to step inside my brain and heart and know exactly, 100% how I feel so there is no chance of misinterpretation. That person can give me advice. Or even better take over my life for a while and make all the decisions.

I am incredibly hard on myself and veer into the dark and serious. Which then makes me the lame person at the party who you don't want to stand next to because all I want to do is talk about the main purpose of life. . .and all everyone else wants to do is have a few drinks and have fun. Sometimes I feel like I don't know how to have fun. This is a metaphorical party of course because I don't actually go to real parties anymore.

So I've been quiet. Sensitive and wounded and shy and silent. Wanting to say something meaningful about the violence and fear in the world and falling short anytime I try. Wanting to share the exquisite shuffle from piercingly sweet moment of parenting to"I need to be away from here" as I walk out the door immediately upon the arrival of my husband because I can not take another minute of my children.

People help us so much and, yes, we could certainly ask for and find more help. We should (there's that fucking word again.) But the help we really need is the ability to call for a sub. Like, now! Not the help that needs to be planned and arranged...the kind where I could have someone immediately walk in and take over the minute I need help. That can happen, right? The ancient arrangement of entire communities living in the same cave makes so much sense. I could ride off and hunt with weapons and blood and fierceness and fresh air and leave my little ones with someone else for the moment. And then I could come back and be their primary caregiver again. Yes. Who wants to join my cave?

Thank you to my friend Cat for the push and the hug to get back to it, even while I'm feeling raw and vulnerable. Especially while I'm feeling that way. Here's to all of you, navigating the choppy waters wearing or carrying luggage that needs to be put down. I have no solutions but I offer you my camaraderie and my company.

Friday, December 4, 2015

A little post

It's quiet in the house. Dark outside. The kids will be home soon.

I'm online, searching for a nativity scene. A creche. The set of figures that represents the birth of Jesus. Surprised to discover that I care a lot about having one and I care much more than I would have guessed about what it looks like.

Will I teach my children about Jesus? Geez, that is a big question.

Will we teach them about Santa?

I'm telling you, being in the parent role as we approach this holiday is bringing up all sorts of big questions that I don't feel ready to answer. And yet here I am, discovering that I want a nativity scene with a separate baby Jesus--not one with the babe in Mary's arms. So. . .huh. Maybe some of the decisions have already been made.

Christmas to me meant sleeping in the same bed with my brother and my sister on Christmas Eve until very recently. It meant new pajamas. Christmas morning meant beautiful, hushed, glowing tree with lights and three new ornaments from Santa every year. Donuts on a plate in the kitchen, from Santa. Taking turns opening presents, varying the order every year--from oldest to youngest or youngest to oldest or starting in the middle. We each watched the other with love and happiness, so glad to be able to gift one another.

It meant Christmas music, but more the religious songs like Adeste Fidelis or Joy to the World. Silent Night. The wood-smoke smell in chilly air. The big tree on the Eastern edge of Golden Gate Park with long strands of colored lights wrapping it in long columns. Magical. Midnight Mass, or an earlier Mass, with the familiar story of waiting for a child to be born.

It meant looking out the window from the back seat of the car, wondering in amazement at the moon following us home. Feeling safe and warm with my parents in the front seat, my siblings next to me.

Joy is hard to find right now, it seems. I feel blue a lot of the time. Overwhelmed. Surrounded by things I wish were done. Being hard on myself. Feeling so thin-skinned and sensitive and self-conscious that it's hard to come here to write because I second-guess almost every word that comes out of my mouth. And this is not how I want to be.

I think I'll go make a fire so I can welcome my four healthy children into a home that is warm.

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.

Thursday, October 29, 2015

Catch up

The kids are all in bed, though they are not all asleep. Take heed: giving a mini Kit Kat to your 2.4 year olds may cause you to feel all sorts of regret. And/or cause you to rethink your own sugar intake because Good God did I just give them crack? It seems like it. . .

A note about the storytelling here. The hospital story of September isn't quite flowing as it once was. Four weeks ago it was pouring out of me, begging to be told, waking me up in the middle of the night. The last chapter came out more slowly and I found I had to push it out, knowing that it is a story worth telling, knowing that the exercise of sitting in the chair and writing even when it doesn't feel easy is a good one. Since writing it two days ago though I have been thinking that maybe it would be a good idea to listen to the Muse and not force it. So I'm taking a break and catching you up on some other things.

In the last week I:

-Attended the funeral of my sister's best friend's father who died at age 71 after a fifteen-month battle with ALS (Lou Gehrig's disease). He left behind a wife, two grown children, and four grandchildren--one of whom was born only months ago.

-Sat next to my dad on his 66th birthday as we listened to a son, a grown man and the brother of the above-mentioned friend, beautifully eulogize his father.

-Attended my 20th high school reunion which was a total blast.

-Hosted a dinner with my husband, his brother, our sister-in-law, and my husband's parents to celebrate their 50th wedding anniversary, which was September 11th, the day I just wrote about--the day I was admitted into the hospital.

-Did the usual stuff associated with raising four young children.

It occurred to me two days ago that this is a whole lot of life happening over here.

Two other somewhat random events in October gave me a lot to think about, a lot to want to write about. One, my husband and I went to see Amelie: The Musical at the Berkeley Rep. It was stupendous. I hurriedly recommended it to anyone I could think of who likes theater and might possibly swing squeezing in a trip to see it in its last week. Two, I served as the alternate on a one-day jury trial in Martinez, the county seat of Contra Costa county. The jury selection process and the trial itself were fascinating and I was so glad to be there, even though it was expensive to pay for childcare and caused a lot of shuffling around since I apparently didn't think I'd actually get called to show up so I didn't make any plans for someone to take care of the kids until the very last minute. Sorry honey! Thanks rock star babysitters!

I have a notebook and a cell phone list full of thoughts and notes about things that jumped into my mind during a time of extreme creativity, bordering on or living next to mania. It appears that phase might be over for the time being but I'm not sure yet. Let's wait and see. In the meantime, I will still be showing up here, writing.

This week in the United States a white police officer was filmed pulling a black high school girl out of her seat in class. The video went viral, many people had a lot to say about it, some 90,000 people wrote letters in protest of his aggressive response, and he was fired yesterday.

I am re-reading To Kill a Mockingbird, a work of fiction written in 1960 by Harper Lee. The story takes place in 1935, which is a time in history not even 100 years ago. The writing is so beautiful, so powerful. The story is about childhood and race, parenting, life in Alabama, the justice system, family, neighbors. It is a made-up story yet as you read it you see much of this country's history lying within its pages. There are still people alive who were born in or before 1935. Not many people but some. This is not an ancient story. The last time I read it was as a freshman in high school, twenty-four years ago. I was fourteen. I do and do not feel like the same person. Time and its passage are so mysterious. So confusing.

Life keeps happening. Art keeps happening. Violence keeps happening. Kids keep growing. If we're lucky. No matter what else is going on in my mind, in my day-to-day life, in my body and my health care journey, I remain not just my self, my inner self, but the many other things that I am to others. Wife, mother, daughter, sister, friend, employee, patient, niece, aunt, sister-in-law, cousin, employer, daughter-in-law, ex-classmate. Writer.

And there are these four little people. Front and center in my life. Growing, changing, pushing, falling, yelling, laughing. Saying "Kiss me!" Saying "Mama!" Saying "Thank you Mommy and Daddy for taking us to the pumpkin patch--it was fun." No joke on that last one. I get a front-row seat to their lives these days and, though I practically ran out of the house on my way to dinner with a friend on Tuesday night, so glad was I to escape the madness, I feel mostly so glad to get to be here. Right where I am.

Tuesday, October 27, 2015

The next chapter, unedited

It had been a rough night. Very little sleep and lots of poop. At some point in the very early morning I decided I was going to call my transplant center and talk to the doctor on call. I didn't know what I needed and I wasn't sure what they were going to say but I knew I needed to do something different.

Thinking that there would be a change of shift soon and not wanting to wake anyone up with something that didn't seem urgent, I waited until 7 or 8 to call. Talked to the operator, asked for the hepatologist on call, gave my number and waited. This was a system I'd used several times before over the fifteen years since my liver transplant. They tell you to call if you have a low-grade fever for more than a couple days, if you have a high fever, or for a few other situations. Once you get a transplant and you're immunosuppressed, they like to keep an eye on you. No one called me back.

Called again and this time got transferred to a different place where the woman answering the phone reacted incredulously when I explained to her that I'd paged the doctor and was waiting for a call back. "You're a patient!" she exclaimed. "You can't page a doctor. You have to speak to your nurse coordinator first."

Her tone pissed me off and confused me. What was she talking about? I had paged doctors to my number before. She was acting like I had just invented this process. I didn't say "Look, lady. I've been a patient there for fifteen years. Also I am not an idiot. Don't speak to me as though I were." 

I said something like "Oh, well I've done it before. . .okay, I'll call the nurse."

Called the nurse coordinator, whom I've never met. Left a message with the person who answered the phone--describing my symptoms, my recent hospitalization. This person seemed concerned and I figured someone would be calling me back soon.

Meanwhile, a flurry of texts was going on between me and my mom and me and one of my two best friends. My mom, trying to decide whether to cancel work for the day. My friend, telling me she and our other best friend would be coming out to visit me.

"Wait," I texted. "I might be coming into the city. Waiting to hear back from the nurse."

"We can come get you and drive you," my friend wrote.

"That seems crazy," I wrote.

Still no call back.

Finally, I paged my surgeon.

Big side note: fifteen years ago my mom took me to the ER, knowing I was very sick with liver failure. I don't know how or why she chose the hospital she chose but it ended up being a magical choice for me. Weeks later I was told I needed a transplant. There were a lot of doctors taking care of me, with a lot of different styles, almost all of whom we liked a lot or even loved. My surgeon walked in and we swooned. I was pretty out of it so I didn't really swoon but my mom and my sister did. Yes, because he was handsome. But also because he walked like God. He was the boss and he knew it. Everyone around him knew it. We felt safe with him. He also had the powerful combination of medicine being work and art mixed together. You want that in a medical practitioner.

My surgeon and I are friends now--have been for a long time. When he first gave me his pager number, shortly after my transplant, I thought "There is no way I will ever possibly use this." But I have and I do. Sometimes because I want to talk to him about something and sometimes because I'm sick and I need his advice or his help. 

His pager has a non-urgent setting--you can leave a message on the voicemail and he will call you back by the end of the day. The other option is to punch your number in and have him, or the OR staff surrounding him as he sews a new liver into someone's abdomen, call you back immediately. I chose the first option this Friday morning in 2015. He called me back within five minutes.

"Hey," he said. I could have cried with relief just hearing his voice because I knew, no matter what happened next, I would be better.

I went through my symptoms. He listened, maybe asked a question or two and then said, "You only call me for help when you're on death's door. So when you call me, I'm concerned."

I waited to hear his recommendation. "I think you should come in," he said. "We'll admit you and figure out what's happening and get you some relief."

Yes. That sounded like a good plan to me. That's what I had wanted all morning, for someone to tell me I needed to come back into the hospital--a hospital where they knew me and knew how to take care of me. "Ok," I said.

I hung up and had a text from my friend that said "We're coming to get you," 

Before I even asked. Actually, I'd been telling them not to come and my friends came anyway. My friends who had only found out I'd been in the other hospital a few days before by reading my blog. My friends with six children between the two of them. My friends who live in San Francisco and don't have a lot of free time drove an hour to pick me up, load me in the car and drive right back.

I was so tired. My stomach did not feel good and I concentrated on not pooping my pants on the drive to the hospital. This is a skill I have honed over the many years since my colitis diagnosis and I am proud to say that I have an ironclad grip over my bowels when necessary. I listened and smiled as the two of them talked about so many different things. My people. My girls whom I've known since we were nine. I should have called them much earlier, just to let them know what was going on with me. They never scolded me for that or said it hurt their feelings to find out I was sick in such an impersonal way. They showed up, like they always do. They swept me up, like they always do. And they took over. Like I needed them to do. But didn't know I needed or didn't know how to ask.

We pulled up at the hospital, a place as familiar to me as my own body. My mom stood waiting outside. They dropped me off and went to park while my mom and I went in to the Admitting desk. We surprised them because they hadn't yet gotten the call telling them to expect me. As we stood there I got a call on my cell phone from the department handling my surgeon's request. I told her where I was and she said "Oh! I haven't called them yet." Going straight to Admitting, rather than the ER, is a weird way of doing things. Usually the people doing that already have plans in place to go into the hospital--for a scheduled procedure or something. Sick people don't just show up at the window saying "Hello. I'm here for my room please."

My surgeon, as I've said, is the boss. When his name is attached to a request, people hustle to make it happen. This is one of the reasons I don't call him too often--I don't want my name having an asterisk next to it for all the support people. Oh, that woman! What a pain. I quietly sat down and waited for them to work it out. I took a solo trip to the bathroom, shuffling slowly along and hoping to find the 1st floor bathroom in the lobby of this busy hospital empty so I could blow it up in peace. Sheesh. It still makes me cringe to write about poop so freely. 

My mom was getting impatient. I sat in the chair with my eyes closed. She went to get a status check. I told her I was sure they were working on it. I know from experience, not as a patient but as a healthcare worker, that there is a distance between the request of a surgeon "Make this happen!" and the actual accomplishing of the task. There is scrambling, persuading, following policies, making calls.  There is trying to avoid the wrath of a pissed off doctor while being confronted with the myriad people who make healthcare happen. The deliberately blank look or the affronted voice on the other end of the phone as someone, not the doctor, says "Yeah, we don't do that." or "That's not happening." As you push and cajole and compromise to make it happen because you know that it can indeed happen, it's just a special request and people don't like special requests.

The healthcare system is not built for special requests. The other reason  I don't call my surgeon for help very often is that I don't like to skip the line. I don't think it's fair for me to get special treatment and I feel concerned that if I can't navigate the system as it exists then that means most if not all of the other patients can't navigate it. That's a problem. I know the language--not just the English language, though that helps enormously, but the language of hospitals. I am a good self-advocate. If I can't get what I need, who can?

Wednesday, October 21, 2015

Back home

So I went home. On Tuesday September 8, 2015 I went home. Still with diarrhea, many times a day. No longer dehydrated or with a high creatinine. Did I feel better? I can't specifically remember how I felt but I definitely wasn't better. There was no real plan to get me better either--I think I still thought the colitis flare would resolve soon and I wanted to be home, with my kids, out of the hospital where nothing was even happening anyway. My healthcare friends and family can not believe the hospital sent me home with unresolved diarrhea. They looked stunned by this news. I was probably a big part of getting myself sent home--telling them I would see my own GI (which I planned to do) and telling them, again, that my colitis flares usually got better with time and increased prednisone. Plus, I doubt they know what to do with me. I was dealing with a chronic condition in an acute state. They didn't have a GI doctor who worked there every day. It was time to go.

If you've been reading this blog for more than a month you will remember this post Deep in a Hole, "The bombing of Dresden" as my mom calls it. I'm embarrassed to admit I don't get that historical reference and I still haven't looked it up but I'm pretty sure it means that post I wrote from my couch about six weeks ago. . .made an impression?

Freaked people out.

Note the date.

When I got home from that hospital stay I went right back to bed. When I got up from the bed I went to the couch. Sometimes I would do something with my kids though right now I couldn't tell you what. Stephanie, the world's best nanny and my friend arranged her work schedule so she could be at my house five days a week again, instead of just Mondays and Fridays. Re-arranging her schedule meant asking the other family she works for, a family who also has twins, if they would mind if she watched my kids too. So Wednesday, Thursday and Friday of that week we had three sets of twins under the age of two-and-a-half in our house Ahhh, relaxing. Except having more kids in the house made no difference to me because I was hardly with any of them anyway. I was too tired. I had no energy. I felt. . I want to say horrible but that word seems to dramatic. I just felt used up. I had nothing.

People were freaking out, worried about me. But I didn't know that. I knew my mom and Stephanie were communicating secretly about trying to set up a food delivery service for me, to take a load off my back. Very few people were contacting me. I now see the writing of that essay as a breadcrumb.In this story breadcrumbs will be the little signs along the way that you're on the right path...keep going that way. Breadcrumbs will be signs on the trail that, when you look back after travelling a big, you'll see them and think "Oh! Yeah, that changed things."

Before that post, I don't think I had ever written or spoken so honestly about how I felt, to such a large, uniform audience. Uniform in the sense that I wasn't thinking about how the individuals I knew read my blog would react. I had no motive when I wrote that other than to let people know why I hadn't written in a while. I didn't see it as a cry for help. And even with how shitty I felt, I still didn't think I was that sick.

Usually I talk to people one at a time and, if I even choose to talk about my health, I don't spend much time talking about how I feel. I don't actually spend much time thinking about how I feel. Having colitis has been a part of my life for so long. . .it just is.

The stark difference between how people reacted to that post and how I felt writing it is important. Life-changing. Because I thought what I saw was the truth but really what everyone else saw was the truth. I didn't think I was really that sick. I didn't think it was really that big of a deal. I didn't think it mattered much that I was too tired to ask for more help. I was just used to it.

I got home Tuesday. Three days later, on Friday September 11, 2015 I called my doctor who is also my friend and got admitted to a different hospital. His hospital, I could say. My hospital, I could say.

Where I should have gone in the first place.

Monday, October 19, 2015

6th floor, local hospital

I feel bored about this next part because, picking up where we left off in the ER two posts ago, the next few hours and days in September were lame and boring. Noticing how often that word "boring" has already come up in this story and considering how rarely I actually use or think that word. I just looked it up and got this definition:

not interesting; tedious.
  1. "I've got a boring job in an office"

    :tedious, dull, monotonous, repetitive, unrelieved, unvaried, unimaginative,
    characterless, featureless, colorless, lifeless, insipid, uninteresting, unexciting,
    uninspiring, unstimulating, uninvolving;unreadable, unwatchable;
    jejune, flat, bland, dry, stale, tired, banal,lackluster, stodgy, vapid, monochrome, dreary,
    humdrum, mundane;
    mind-numbing, wearisome, tiring, tiresome, irksome, trying,

The formatting on that is bothering me but I can't figure out how to fix it and I want to keep writing.

Some things strike me about this definition.

1) It's hilarious and also sad that the sentence used is "I've got a boring job in an office." Ouch.

2) Many of these words describe being a patient in a hospital. These words would not apply were you in an acute situation but the rest of it--yep, pretty right on. So ok! My writerly instinct is correct--the next four days and three nights were mostly boring. And for this reason I will skim over a lot of it because meh. You won't be missing much.

We were taken up from the ER to the 6th floor by a really bright, shiny, friendly tech. She was from Minnesota and she was talkative and lovely. Stephanie was still with me and we both liked her. Don't remember her name.

I was put in a room with a window over-looking a parking lot, lots of trees and the BART tracks. Pretty much anyone who came to visit me would at some point say "At least you have a nice view" to which I would reply snarkily "Of the BART tracks?" But it was a nice window, if you're not a spoiled San Francisco patient still getting over your anti-suburban upbringing and tendencies.

It was shift an hour before shift change so the one nurse who was getting me checked in would only be with me for an hour. This would turn out to be a bummer because she was the best we had. She asked me a few questions, made sure I was who I said I was,and then reported off to the next nurse. Everything takes forever in a hospital--again, unless you're having a stroke or a heart attack or something acute and possibly-deadly. Then things move fast! In my case it moved slowly. I wasn't in much pain. I was tired and drained and using the bathroom often. That was pretty much it.

I laid back to wait. Stephanie said I looked better than I had in the morning when my face was apparently a scary shade of ghostly.  I had an IV in the crook of my right arm. This is known as an RAC or right antecubital IV. This site is a pain in the ass as a patient because it means you really can't bend your arm much. If you do, the IV computer starts beeping telling you and the world that there is a kink in the line or an obstruction. If you've ever been a patient in the hospital you know deep in your skin how aggravating the beeping becomes. 

I had no IV fluids running because the bag in the ER had finished and the nurse down there said "You're going right up, they'll start a new one up there." Please remember that my diagnosis was dehydration and acute renal failure--the treatment for which is hydration.

At some point the nurse told Stephanie she needed to gown up because one of my pending tests was for c-diff (More on C-diff if you're interested) which is very easily spread. Stephanie put on a blue paper gown, gloves and a mask. She loved it. My sister arrived shortly after that and was also told to get dressed to look like part of the medical team. Which is appropriate, even without the possibly infected poop, because she certainly is. It should be noted here that my sister figured out a way to leave whatever was going on in her life if San Francisco (which involves a 2-year-old son, an almost 1-year-old son, a 12-year-old son, a 17-year-old daughter who had recently started college, a husband, an intense job, a new house and you know. . .other stuff) to drive to Concord to be by my bedside. 

I am constantly surprised and touched, sometimes befuddled and yes sometimes annoyed but the way my people rally around me when I get hospitalized. In my mind at this point I was thinking "Eh, I'm not really that sick. Acute renal (kidney) failure seems kinda dramatic. What's the point of waiting for this GI doctor who won't be able to do anything. I won't be here long."

But it was nice to have my sist and Stephanie there. I took a picture, at their request, of them both in their blue gowns and masks but they hated it so I won't post it. They looked adorable. My sister kept having to re-glove because the way we do hospital care is I just asked whomever is visiting me to get me juice if I need it. We don't like to bug the nurses for mundane ,waitressing tasks. But my sister would walk out to do something and have to be reminded that she needed to stay covered and stay away from other stuff and stay in my room. . .hello? That's the point of the precautions! Oh yeah. We run this joint! We think. We just don't always remember how.

Long story short at some point the computer work done by the nurse was finally done. There were no plans for anything else to happen and she got ready to leave.

"Am I getting an IV?" I asked.

"Oh," she answered. She checked the computer to discover that yes, in fact, her patient with no other complaints aside from being dehydrated from too much diarrhea and having dry kidneys from losing all her fluid from too much diarrhea should probably have an IV of electrolytes and fluid going at all times.

I'm no a nurse but I play one on TV I used to say during the five years I managed nurses, making jokes to get through the crushing insecurity and sense of unworthiness I felt in a job I didn't think I was qualified for. It's I use a similar defensive mechanism to downplay my medical knowledge when it comes to advocating for myself as a patient. I know a lot--due to a combination of the on-job training I received over thirteen years working in organ donation, due to my friendships with some of the smartest people (who happen in this case to be nurses and doctors) I know--the ones who know I like to ask questions and who like to answer them for me, and due to the fact that I pay attention and I've been sick for a long time.* But the system is not set up for a patient with no official medical education to ask too many questions about decisions being made or to make recommendations about what care might work better. Patients can be annoying. Patients, myself included, can think we know more than we do. Doctors and nurses can be busy and, shockingly, not all health care providers are created equally. Not everyone is a critical thinker. That happens to be an attribute I value highly, in all areas, but especially in regards to my health. So far all these reasons, I don't always speak up when I should. . or when I do it, I do it in a gentle way so as not to be labelled pushy or worse.

This is why I didn't yell "Hello?? I need some fluid, dummy! What else am I doing here??"

I'm so polite. Says the woman with long-term bowel disease possibly made worse by holding feelings of anger and frustration in.

I got my IV. I got a boatload of antibiotics for no specific infection--just broad coverage in case. I ate jello. BTW Cozy Shack jello is absolutely atrocious--avoid at all costs. I walked my IV pole back and forth to the bathroom where I continued to have diarrhea and sometimes to vomit. I asked for, and received, Ativan for my anxiety and Morphine for some stomach cramping. Whoa to the morphine! That was a great two hours. I didn't get it again which was too bad.

I got a daily shot in my butt. When I asked I was told it was to prevent blood clots that might be caused by my laying in bed all day. It took me another day to think "I can walk! I don't need to be laying in bed all day. Why am I being given these shots just per protocol? Argh!"

The GI doctor arrived. I told him my symptoms and my story which basically went like this:

"I've had colitis since I was 11. I've never been hospitalized for it. This time I've had diarrhea for a week and it doesn't usually last this long. It usually gets under control when I go up on my prednisone. I was taking 5mg per day and went up to 10mg with no change. That's unusual."

And after another day or so of thinking, they sent me home with a prescription for 40mg of prednisone and an antibiotic for a UTI which no one told me I had (and I turned out not to  have.)

During my time in this hospital I did not call anyone to tell them what was going on. Some of the word spread from Stephanie, my husband, my parents, my brother and sister. I didn't get in touch with any of my friends. I've mentioned here before that my instinct when I get sick is to hunker down and be a hermit until I get better. Also, I didn't really think it was that bad. Dehydration from a colitis flare! No big deal. It will be over soon.

One of my new friends found out I was in the hospital. I can't remember how but maybe because she texted me to check in or plan a play date and I responded with "Heh. I'm in the hospital."

Her response later, after she'd come to visit with mystery novels, fancy coloring books and Pringles (my request which I ended up not eating because they sounded gross) she texted me something along the lines of "I will stab you if you ever don't tell me you're in the hospital again."

I do love her.

In summary, Wednesday September 9, 2015 I was back home. Still with the same amount of diarrhea. I'd been there for four days and three nights on the what turned out to be the Oncology floor. I saw my nurses at most once per shift for five minutes or less. I saw the hospitalist (a doctor focusing on the generalized care of hospitalized patients as opposed to the specialists who focus on brain issues or kidney issues) each evening and the GI doctor once. The bill sent to my insurance for this experience was over $720, 000.

Some people are appalled that they let me out with the diarrhea uncontrolled. I felt fine about that--I went in because I was dehydrated. I didn't expect them to fix the colitis. In my experience it would resolve with time, a mild diet and more prednisone.

Wrong. But also kinda right. We just hadn't gotten there yet.

Saturday, October 17, 2015

25 more things about me. . .right now

1. I am very wise right now.* One of my god-given/life-given/birth-given/upbringing-given (okay, I don't know where this elemental stuff that makes each of us who we are comes from) strengths is my ability to see connections and disconnections. I see what is getting in the way of something working better, be that a relationship, a system at work, or the way someone is choosing to live his/her life compared to what he/she is saying he/she wants his/her life to be. (There must be a better way of doing those effing gender pronouns.)

2. The asterisk above is placed as the caveat to address the reality that I am taking a lot of steroids right now. And the fact that the way I am right now is an extreme version of myself. I have lots and lots to say about this because I recognize that where I am is a combination of a lot of things--my recent experience with acute illness, the last four years of chronic illness whose impact on me I underestimated, my overall experience of being a patient, working in healthcare, becoming a mother, becoming a mother to four children in two years, getting married, being on and coming off anti-depressants, recognizing the role anxiety plays in my life, recognizing how disconnected I have been from my physical body, finding a yoga studio whose mission is helping women take care of themselves (Bloom Retreat*), finding a tribe of women through that yoga studio who are committed to and struggling with the work of finding and being our true selves, re-appreciating the friends I've had for years, re-appreciating my family, re-appreciating my work. . okay, it's a combination of a LOT of things). So I am wise in general and I am SUPER wise right now.

3. This blog is my art. It is not a report on my life meant to take the place of having a relationship with me. (And truthfully I will hopefully not have a relationship with everyone who reads this because I want lots of people to read it and I don't have the capacity to have a relationship with millions of peoples. Thousands? Hundreds? I don't know how many people will read it but I hope the number grows and grows.)

4. If you know me in real life and love me or like me or worry about me because of the content of this blog, you are allowed and invited to reach out to me via whatever medium you choose/prefer/have access to. You are also allowed to not read it if it's too confusing or weird to read personal things about me on the internet instead of talking to me about them.

5. I am learning how to take better care of myself--my body, my mind and my spirit. This is hard and sacred work for me and I am grateful to be doing it and to have the tools, support team and interest in doing it.

6. This blog has changed. I've found my voice and I am thrilled about that. It used to be sort of an online journal where I would come and write a bunch of stuff I was feeling and then hit Publish. And I liked that I was writing and that people were reading but I also felt. . .confused and vulnerable. I didn't want to put a a bunch of stuff about myself willy nilly onto the internet. I wanted the writing to be good. I wanted to be making art, not sharing my diary. But I didn't know all that, and now I do.

7. Part of my style, and I think it's the part that a lot of people like about what I do here, is that I am very honest and real. That will not change. And/but, this blog is not and will never be all of me. Part of me is saved for myself and part of me is saved and shared with people who love me and do the work of having and being in a relationship with me. Boundaries. I am learning about them. They are tricky!

8. I have felt this way before. The year after my transplant I experienced a similar spiritual awakening. I hope to write about this more later. It is very special and sacred and amazing.

9. I know at least part of the way I feel is temporary. Because of the prednisone, the effect of which I feel but can't accurately measure in terms of its impact on me. And because all things, or most things, are temporary.

10. I think and sincerely hope that most of the way I feel will last. Because I think what is happening is that I am finding myself, the true self I am now. The self I have always been but haven't paid attention to or haven't had the energy for or haven't known how to access. It is fantastic! And exhausting. And emotionally raw. And powerful. I wish I could give it to each of you to take as a pill or a tonic. But I know that some of you probably wouldn't want to take it or wouldn't have the energy to take it because. . .well, because it's really fucking hard. And often just getting through the day without thinking too much about it is hard enough.

11. My natural instinct is to help other people. I do this because a) it feels good to help others b) it distracts me from paying attention to or sitting with my own self which doesn't always feel good c) this is how I was raised d) I believe it is what humans are here to do  and e) my life experience and my natural strength (see #1) gives me something special that not everyone gets to have. And I want to share that because I can and because I would want someone to share it with me.

12. I have super clarity right now. It is like a super power and it is awesome.

13. I saw a psychiatrist two weeks ago and it was a relief and a good experience.

14. I am eating very differently than I ever have and it is mostly a relief and mostly a good experience.

15. I am a very good mother. It is still really hard and there are lots of moments that make me want to bonk my head against the wall or hang my head in defeat.

16. Our kids are so fantastic right now. They are each in a total sweet spot and are so fun, funny, smart, articulate and wonderful to watch and be around. Lots of the time. Most? Some. A lot of the time.

17. I feel very happy in my marriage right now .I think my husband does too but I haven't actually asked him.

18. My physical health is a work in progress but I feel mostly pretty good these days.

19. I am seriously good at working. People should hire me to do things and fix systems (or show other people how to fix systems) because I am very, very good at it.

20. I have been a manager of people in the past and in many ways I was not good at it. In some ways I was good. I did not enjoy it very much. I know I would be much better at it now were I to do it again but I'm not sure I would ever enjoy it.

21. I have some truly wonderful friends.

22. I have historically been very concerned about what other people think about me. I don't feel that way right now and it is a great goddamn relief.

23. I am pretty blunt these days. My ideas come to me fast and furious and I talk more and faster than usual. I blame the prednisone. But I also mostly enjoy most of these things.

24. I am very sensitive to how other people feel, or how I think they feel. I might be an empath but I'm not sure.

25. Because of many of the things listed above, I may have to say to you (if I know you in real life and you reach out to me) "I can't right now." Because I have a tendency to pour myself out and not notice that I'm all used up. Because of #1, and. . .actually, because of almost everything on this list I am learning to recognize when I need to go away from people--talking, emailing, texting, being with--and be alone to reconnect with myself. To recharge. It is hard for me to do this but it is necessary.

I will be writing much more about many if not all of these things. I wanted to tell the story in chronological order because that's how it unfolded, because it is more dramatic that way, and because the revelations are a result of what has happened. But this is where I am right now and for many reasons it felt important to write it now.

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*Bloom Retreat is a very special place in Walnut Creek, California. I will be writing a lot more about it but until then, if you can, you should go there to take a yoga class. Or get a massage or a facial or a chiropractic exam or an acupuncture treatment. Or sit in silence and soak it up. It is a healing place that has meant a lot to me and I thank Michelle Long from the bottom of my heart for creating it.

Thursday, October 15, 2015

The ER

We went to the ER, with me wearing my coziest pants and a soft, loose shirt. Flip-flops. Easy, loose, comfortable. I felt smart for bringing a cardigan because I often I forget about air-conditioning--I doubt hospitals in San Francisco even have A/C because it's just never that hot. Well, except now it's hot all the time thanks to global warming. I digress.

The cardigan did nothing for me so it was lucky Stephanie had one of her homemade fleece blankets in the car--I was freezing. (She doesn't make the fleece, she ties two big pieces of fleece together and makes the best blankies.) She got me a wheelchair which I remember thinking was kinda silly. . .until I sat it in and felt relieved that I didn't have to walk anywhere. Note: it's a humbling experience to get pushed in a wheelchair by your friend. It's also a nice experience to be that taken care of.

I signed in and got a wristband, happy I was already in the computer system because I'd had my baby girls in the affiliated hospital--the better one--up the hill in the richer town a few miles away. We sat to wait. The ER is a good place for people-watching. It's tempting to think the population of an emergency room would give you a good snapshot of the population of a town but I find that's not always the case. As a generalization you're probably seeing the grungier, rougher, less well-off folks with the few exceptions being minor accidents that bring people into the closest hospital they can find. There are always at least a few kids, sick or injured, with their parents. Ours had an adorable blond, chubby-faced toddler wearing Jordans whose tattooed father kept following him around with a cell phone trying to show him what I'm guessing was a YouTube video of Watch Me, presumably in the hopes that his kid would learn how to do the Nae Nae?

The most interesting guy to me was a really skinny, brown-skinned man with close-cropped hair, a cane, a rolling, bouncing gait and what I knew to be an AV fistula--what looked like a bulging vein in his right arm. An AV fistula is created when they directly connect a person's artery to their vein to create a stronger portal for dialysis. Dialysis, if you don't know, is the the process of getting hooked up to a machine that clears the toxins out of your blood when you have kidney failure and your own kidneys can't do it. I can't remember what exactly what he was wearing but he was pretty well-dressed. He didn't look homeless or crazy, but he did look agitated.

This guy was pacing back and forth in the lobby and I could tell he looked like trouble. Not trouble like I'm worried he will do anything to me or anyone else, trouble as in the hospital staff does not want to deal with him.. I'm not saying that is the hospital staff's fault or the patient's fault--I bring it up as an example of what is often a disconnect between the person seeking care and the people providing care. It's not easy for either side. Plus he could have been a frequent-flier--someone they all knew and were tired of.

I am an eavesdropper. A people-watcher. An observer. Other people would probably call me a nosy, starer because I often forget that I'm watching and people can see me. I was huddled in my wheelchair, wrapped in Stephanie's blanket, drinking icy Gatorade that she'd brought me in her water bottle, watching. At some point the man picked up the phone hanging from the wall, the equivalent of the house phone in a nicer hotel, and made a call. His voice was frustrated as he talked to the person on the other end, explaining that the hospital was telling him they couldn't dialyize him. The person on the phone obviously didn't believe him. The guy put the receiver on top of the phone and yelled out to a young doctor on the other side of the room "Hey! Can you talk to my brother? He doesn't believe me when I tell him you can't do my dialysis here."

I thought to myself "They don't have a dialysis machine here? Um. What kind of a hospital is this?"

The doctor looked annoyed. I know I'm missing parts of the story because it clearly wasn't the first interaction these two had had, even just that morning. It was also clear that this young doctor a) did not want to keep dealing with this patient b) did not appreciate getting summoned with a yell from some dude across the room, especially as he clearly had been on his way elsewhere. He looked like a nice guy; they both did.

At first the doctor tried explaining to the patient again that he had to go to a dialysis clinic to get his treatment. Phew, I thought. It's not that they don't actually have the machine here. Okay, we can stay. Not that I thought I needed dialysis but I would have been concerned about getting treated in a hospital that didn't have a basic, oft-used albeit expensive machine. Unless I was in the middle of the country-side or a very tiny town.

After a few minutes the doctor resignedly got on the phone to talk to who turned out to be the patient's brother. (I know this because the patient asked "Will you explain it to my brother? He doesn't believe me.")  The one-side conversation we could hear was civil, involved a lot of nodding, a bit of explaining and finally an "Oh, he didn't say that to us." He hung up the phone and led the patient back up to the admitting desk to get admitted.

What happened, in a nutshell, is that this patient who obviously regularly gets dialysis for kidney failure (because he has a dialysis-ready arm which doesn't happen over night) came to the ER to get treated. What's supposed to happen is that patients who get dialysis go regularly to a clinic, usually three times a week, where they sit in a chair and get their blood filtered. The process takes about four hours and the dates are scheduled--you don't just walk in and say "I feel like some dialysis today!" My guess is that this patient either missed his usual appointment or something unusual happened where, even having his regular appointment he was feeling shitty and knew he needed help.

What the hospital staff sees and says is basically "Hey dude, we are not a dialysis clinic. You can't just come in here and expect that we'll do that for you. We are busy! We are an emergency room!" Some hospital staff might also be thinking "Hey, just because you forgot to go to your appointment or didn't do what you were supposed to do doesn't mean it's an emergency that we should have to deal with." Not because the hospital staff is bad but because that's not how it works. And they're not prepared with the appropriate staff, dialysis set-up, time, etc. Plus I'm sure there is a financial aspect to it but I can't speak to how that breaks down. I can say, as someone who works in health care, it is annoying to have to deal with patients who don't do what they are supposed to do.

What the patient probably thinks is "I know I need dialysis because either a) I know I missed my appointment or b) this is not my first rodeo and I recognize my symptoms and my body is telling me I need it. I either can't get to the clinic because it's Saturday or it's too far or I don't want to. I'm coming here and I know you can do it here." I can say, as a patient it is annoying to have to jump through hoops to get what you know you need.

What the brother on the phone knew to do was to explain whatever symptoms the patient was currently having in such a way that the doctor couldn't deny that they needed to admit him and treat him. Because that's how it works. You as a patient don't get to go to an ER and order off a menu the treatment you need. You have to go, describe what is happening, answer the questions the care provider thinks or knows to ask, and let them determine your treatment. And not just in the ER--there's nowhere you can just ask for and get what treatment you need, even if you know for sure what you need because you know your body and you know what's wrong. And to be fair, and as this story will keep showing, you may not be as smart and dialed in as you think you are so it's probably a good idea to let the trained, medical professionals take a look and diagnose you. And to be fair in the other direction, the doctor or the nurse or the whoever may not think or know to ask the right questions. They don't know you, they know systems and protocols and they use their experience, knowledge, test results and their team to make the best diagnosis they can. It's a dance, and a complicated one.

So all that happened, but the entire exchange didn't take long. I got called back soon--because saying you've had diarrhea for a week and you're feeling weak and light-headed when you're sitting in a wheelchair, bumps you up a bit on the triage list. I also looked like shit--pale and wan, though I didn't know that or notice it. They checked my vitals. They gave me an IV. They drew some blood for labs. Took urine and stool samples. (The process and the actions I'm describing took much longer than it may appear by the short, snappy sentences.) A doctor who looked approximately thirteen came to see me (and hey, no judgement. I'm thirty-eight, I understand there are and will continue to be more and more doctors who are younger than I am). He reported that I was in acute renal failure with a creatinine of 2.0 (normal is 0.7-1.3) and I was severely dehydrated. They were going to admit me. Regarding the diarrhea and the colitis flare, they didn't have a gastroenterologist on staff at the hospital but they would page the one on call at their sister hospital and he/she would call back or come see me within 24 hours. Note: a gastroenterologist is a doctor who specializes in bowel disease, also known as the GI tract, and will from now on be known as a GI doctor because that word is long and hard to spell.

Acute renal failure. Huh. Didn't see that coming though it made sense with how dehydrated I'd gotten. I thought they'd just give me an IV and send me home. See: don't think you can diagnose yourself. See also previous post: I apparently underestimate how sick I am.

This will become a familiar theme.

It was good that I had come in because no amount of Gatorade would have fixed that problem for me. I didn't expect them to do anything for the colitis because I still assumed it would pass like it always does. And unless this random GI doctor was going to come do a colonscopy on me I wasn't sure exactly what they were calling him/her for but I was not in charge.

"Renal failure," I said. "It would probably be a good idea to call my transplant team to let them know that."

The young doctor looked up from his clipboard and asked "You had a transplant?"


Wednesday, October 14, 2015

Saturday morning, football and the next chapter of the story

Saturday morning, September 5, 2015 I woke up and felt terrible. But I'd felt terrible for the few days before that and the kids were clamoring for me to get out of bed so I did. I didn't last long out in the living room. Curled into the recliner as all four kids happily snuggled with cups of milk and Elmo, sitting on their daddy on the couch, I saw that I was not needed and went back to bed.

Fell into my comfy bed, fell back asleep. Something or someone woke me up so I sat up, felt my head swim a bit, waited to get my mind right, and then got back up to head back out. To make breakfast? To sit next to them while they ate? I don't remember. It didn't take long for me to send myself back to my room to sink into the pillows. This wasn't an "Oh, I am so tired I just can't wake up this morning!" type of morning. This was an "Ohhh, it should not be this hard to physically get out of bed and stay upright. Something is not right."

But there was the Draft to think about.

Weeks before I'd put out a request on Facebook asking if anyone was looking for another player in their fantasy football league. The kind where you draft players and change them up each week, trying to avoid getting in a situation where you're sort of rooting against your home team because your top receiver is going against them and you need him to score you some points. It's a fun way to get more into watching all the football games and I had missed playing. Sometimes it's hard to remember that the circumstances of your life have changed and that your Sundays are no longer spent at a bar full of TVs and your friends, drinking beer, eating yummy, delicious, bad-for-you football-game food. Or in a living room with your friends who have NFL network, one guy manning the remote for maximum game coverage. See also beer, food, probably (definitely) some marijuana smoking in this second situation. Ah parenthood, how you have changed the weekend experience.

In any case, my friend Fabio (yes that's his real name, yes he pulls it off, and yes high school and college in the 90's could be a bit rough on the guy when this other guy was around a lot http://www.fabioinc.com/ ) responded to my request and invited me to join his league. Yes! I was so excited. Fabio is a huge sports fan, a super-competitive person (which I love, being one myself), has a tendency to have smart, funny friends, and regularly makes me laugh out loud with his texts because he has such a great way with words.This sounded like the perfect league for me as well as an opportunity to spend more time, even if it was to be mostly virtual time, with one of my favorite people. Sure, I thought it was a little intense that the ten of us in the league had to meet in person to draft our players but hey, it seemed like a Fabio thing to do and it would be a fun way to spend a Saturday morning (see: beer, food and no kids)

Throughout the past week as I'd felt sick and weak and cancelled plans one after another, I kept thinking "I need to make it to the draft." That was seriously my goal--to be healthy enough to drive to Marin (just like driving back to Stinson Beach, a 1.5 hour drive) so I could draft my team. Not that I was in any way prepared to draft my team--here in 2015 the only players I know by name are the ones who have been playing since I graduated college like Peyton Manning or Tom Brady. With a few "newer" players like Marques Colston who was my surprise, awesome fantasy pick the first year I played. Of note, that was in 2006 when he was a rookie so I don't think he counts as new anymore. I also knew Andrew Luck and Colin Kaepernick due to their Bay Area connections. I was sick, I was unprepared, I couldn't think of a single running back that I would want to try to get, but I knew I had to go because you need an even number of players (ideally 10) for a league and if I dropped out last minute it would cause problems and Fabio would be mad. I hate disappointing people, especially if it's by saying "It's too hard, I can't do it." Not only do I hate it, I pretty much don't do it. I don't let my body or my health tell me what I can and can't do.

Now any rational person could have told you, or me, or Fabio, that there was no way I was going to this draft in Marin-and they could have told it to us days before. Not me. Determined, even as I periodically tried to get out of bed, got light headed, and laid back down. I might have had some problems of the mental, not just physical, variety.

The draft was to be held at noon in Marin. I figured I would have to leave by 10:30 at the latest, Our son was also signed up for his first gymnastics class, to be held that day at 10:30. My husband was going to take him, to enjoy some rare one-on-one time with one of our children. We also had idea that gymnastics would be good for Cyrus who has always had a slightly peculiar sense of balance. The kids woke up around 7:00 and my mom arrived before 8:00 to help out. I can't remember who in this trio of adults knew that I was still thinking of going to the draft in Marin. I doubt my mother could have known because she would have smacked me, figuratively, upside the head.

At 9:15 I texted Fabio the following:

"Will I ruin everything if I don't come? Having a big colitis flare and not totally sure I can safely drive there."

Sidenote: me actually telling a friend that a) I can't come to something and b) it's because of my chronic disease involving poop rather than making a more sanitary excuse is a big damn deal. This is not something that happens.

A little while later I called him, slowly coming to my senses that I could not wait for him to give me permission not to come. I could tell I was dehydrated--weak, light-headed, and completely emptied out from not just the past few days of being sick but from waking up at least every hour the night before to run to the bathroom. I avoid the ER like the plague, not because I don't like it there but because it takes forever, rightfully so, as they are triaging the people who need care urgently like gunshot wounds. So I only go if I'm pretty damn sure there is something really wrong with me that they can actually fix. The idea of going to the ER was peering at me through quiet, slightly reproachful, used-to-being-ignored eyes. And as I write that I realize that my mom certainly knew that the plan had been for me to try to go to this draft because I can picture her face and body language in my mind right now, doing her damnedest not to get involved because she knows how I get when people tell me how to take care of myself. I thanked her for that later. I called Fabio 30-40 minutes after my text and left a message saying essentially "Dude. I can't do it. I am too sick." And laid back down.

My husband and son left for gymnastics. Fabio texted me back at 10:29 to say:

"'Ruin everything' is a strong phrase. You're the tenth person of a ten person league. There aren't nine person leagues due to the math of head to head scheduling. I'm not kicking someone out to get to eight and finding a replacement for a live draft with a day's notice on Labor Day weekend is unlikely at best. I can come pick you up door to door, pick you up at BART, or whatever else you need (and yes, I realize that is a dangerous comment). Hydrate, eat bland food, get a massage, etc. and let's get this thing done tomorrow. Let me know about transportation."

There are many things one could get from this exchange. I'm sure depending on who you are, reader, you reacted to some aspects more than others. Let me point out a few, in no order of importance:

1) Yes Fabio, I know how the math of the league works, hence my concern about dropping out last minute and messing things up when I know how hard it will be to find a last-minute replacement.

2) I have funny, loving friends who would offer to drive from San Francisco to Concord and then over to Marin to get me to a draft. Some of those friends are perhaps a little intense.

3) I told you he was competitive. He also has a strong sense of how things should be and damn it, this ten-person league was going to happen.

4) The draft was being held the following day, on Sunday.

Oh. Problem solved. Off the hook. I texted Stephanie, still in bed, asking her to take me to the ER. Stephanie--caregiver for my children for almost two years, friend to me in a way that keeps growing and changing, as I am to her. Mother to a tween and a teen, responsible for another tween and a teen. In their house Saturdays are a swirl of soccer games, cheer leading, chores, driving and picking up. Between her and her friend/roommate/co-parent/sister-wife Haku they keep that household, and often our household, running. I knew she would find a way to come take me. I knew I would feel safe with her and that she would take good care of me without my needing to take care of her. She responded immediately to say she was on her way.

I slowly got dressed and walked out to tell my mom. She was visibly relieved. I asked her or she asked me whether it would be better for Steph to stay with the girls while my mom took me and I said no, I liked the plan as it stood. She agreed.

We (I) decided we'd go to the local hospital, despite a feeling in my gut that it wasn't the right place to go. In my past life working in organ procurement we worked with all the hospitals in Northern California. Depending on your role in the organization and who you interacted with the most (the doctors and nurses, the patient's families, the operating room staff, the administrators, people on the phone vs. in person, the deceased patient's) you often came up with your own assessment of how good the hospital was or whether you would want to be a patient there. Maybe not a good one or an accurate one but you had one nonetheless. My experience told me that our local hospital was not the one that would give me the best care but I am new to the area, I'm raising my family here, I believe in supporting local businesses, and I wanted to see for myself. Plus I didn't think it would be that difficult to treat me.

It was not the best decision. It is also another insight into how my exhausting mind works and how maybe it should just take a back seat every now and then.

Sunday, October 11, 2015

Another anecdote

Here is a story about an immunosuppressed mother with bowel disease and four children under the age of three:

The mom heats up a bowl of leftover mashed sweet potatoes and sauteed greens. These foods have been selected for their non-inflammatory status. The sweet potatoes were prepared the day before by the mother herself. Here is the recipe:

1. Peel sweet potatoes.
2  Boil.
3. Mash.

The greens were cooked by a personal chef who prepares Paeleo or gluten-free or organic meals for people who need or want them.* The greens, and several other Paleo meals, were generously paid for by the mom's mother.

No children are in the room when the food is in the microwave. (The mother does not know where they are but they are somewhere in a mostly child-proofed home and it's a weekend day so the father is somewhere around too.) The machine beeps, the mother takes the bowl out and places it on the table, blows on a fork full of food and takes a bite.

One by one the toddlers appear out of nowhere, indicating an urgent desire to taste the mother's food. The mother's initial mental response is:

1. None of you will not actually eat this.
2. I can't in good conscience keep you from trying these two totally healthy foods on the off chance that you do eat it. Or at least on the off-chance that this will be one of the twenty times you are exposed to a food before you decide you might like it.

Each child is either picked up onto the mother's lap or put in a nearby high chair in a random symphony of fits, arched backs, reaching fingers and changed minds.

The following events occur:

1. Mother's spoon is taken, licked and put back into bowl of food.
2. Small baby fingers covered in germs are inserted into various pockets of sweet potato.
3. Pieces of greens are picked up, put in mouths and then discarded. . .back into the bowl of food.
4. Food is sneezed on.

No food is actually consumed by children. All children leave. Mother considers taking another bite and then, in an effort to make choices that reflect her true health status and not the one that exists in her mind, throws almost-full bowl of bright, healthy, food in the trash.

And scene.

*If you are interested in having meals cooked for you, contact Courtney at scratchcater@gmail.com

Here is here current Paleo menu:

Bacon and apple smothered pork chops
Orange chicken
Dijon & cognac beef stew
Chicken & mushroom marsala
Cider braised pork shoulder
Chicken tikka masala
Carnitas tacos
Moroccan chicken & olives
Roasted sausage with broccoli & fennel
Paleo meatloaf
Sukuma Wiki
Vietnamese coconut pork
Paleo barbacoa meatballs with guacamole
Greek style lamb meatballs
Indonesian beef curry
Orange ginger beef stir-fry
Ginger scallion pork meatballs
Lemon ginger chicken
Vietnamese shaking beef
Lamb stew with dried plums
Pan roasted chicken with bacon and apples
Braised beef stew with carrot, parsnips and lacinato kale
Gyoza meatballs
Crusted strip steak
Chicken and mushroom marsala
Garlic beef and broccoli
Rosemary mint lamb patties
Paleo shepherd’s pie
Crispy orange beef
Butternut squash & kale stew (seasonal)
Moussaka Lemongrass chicken curry
Thai inspired meatballs & coconut curry
Beef stew w/oranges & cranberries (seasonal)
Pumpkin chocolate chili (seasonal)
Bacon topped spinach & mushroom meatloaf
Cranberry-kale turkey meatballs with cranberry garlic sauce
Beef bulgogi
Chicken stew with butternut squash & kale (seasonal)
Ginger acorn squash soup w/thai mini meatballs (seasonal)
Crispy orange beef Southwest meatballs w/creamy cilantro dipping sauce
Oven-braised beef w/tomato & garlic
Lemon-ginger pork meatballs
Chuck roast w/balsamic & dijon

She has an organic menu too but you can contact her to get that one. She is a one-woman operation and doesn't have a website. This blog supports women-owned and operated businesses.

Saturday, October 10, 2015

We interrupt this programming. . .

To bring you some words about my husband.

I've never asked him how he would feel about my using his name in this blog. I don't use my name although it's probably easy to find. For a while I didn't use my kids' names because despite being a thirty-eight-year-old grown-up I feel like I'm still new to the internet and how to use it. Is it safe? Will they hate it later? I just don't know. I started using the kids' names because it was easier than "the bigger one" or "one of the younger ones." And I didn't feel like making up internet nicknames for them because it felt dumb writing real-life stories about real people with made-up names. But writing "my husband" is pretty easy so I've never taken the time to ask what he prefers.

I have talked to him about how he feels about whether I write about him, or our marriage, on this blog. I asked him some combination of "Does it bother you?" and "Can I?" while also saying I would like to because it's important to me to be able to tell the truth about what I'm feeling and thinking about my life. He said I should write what I want to write. Almost without exception in our lives together so far he tells me that--you should do what you want to do. You should do what you need to do.

That has usually made me anxious. I worried that the subtext of what he was saying was "But I really wish you would do something else." Only recently can I see that that was my problem, not his.

Here are some things I would like to tell you about my husband:

1) He is wicked smart. (I'm sometimes allowed to say that because I went to school in Boston; I use it sparingly.) He is good at math, at figuring things out. I don't understand brains and how they work but I can see that his is built or functions much differently than mine and I so admire his brain.

2) He thinks about things that I don't think about. Rather than react to a reference to an article describing how the guy from that duck hunting show was a racist, my husband suggested we go read the actual article in its entirety first. That was good advice because seeing the what was said in the context of an entire interview left a fuller impression of the man. I still thought the man was racist but the interview deepened my own understanding of racism, especially in a context that I have no experience with--that of growing up poor and white in the South. I appreciate that my husband doesn't just react to things--he looks for more information before making a decision.

3) He is a great kisser.

4) He is an incredibly hard worker. He built a new fence around our pool almost entirely by himself. I think I helped carry three panels and then tapped out because they were too heavy. To do this project he: tore down the old wooden fence, cleared a ton of ivy, drilled holes into the concrete so he could bolt metal supports into the ground, painted 12-15 five-foot wooden fence panels, carried them to the backyard, lined them up correctly and screwed or hammered them together (not clear on that part).It was pain-staking, exhausting work and he stuck with it day after day until it was done. I could write many pages describing similar projects but I'll leave it at--the man works hard.

5) He makes me feel safe and cared for in a way I haven't experienced. I am still learning how to truly appreciate this.

6) He is good with money. Because of this we were able to buy a house that we love--one that is perfect for our brood. I helped because I had a good income at the time and I had been maximizing my 403b for many years. Our parents helped a lot (thank you parents). His many years of saving and smart decisions and previous real estate purchases made it not just possible but not painful.

7) Money gets another entry. I have money anxiety because I am not very good at math and I like nice things. As an adult I went from counting my paychecks to make sure I had enough money for gas to making more money than I expected and spending it all on travel, good food and drinks, clothes, shoes, purses and adventures ( I regret almost none of those things--maybe some of the bags and shoes.) I spent it on other less fun things like paying my credit cards late or parking tickets or last-minute decisions forced by lack of planning.  My husband took over the money management for most things and that has given me a huge sense of ease that I had never had before. Money will get it's own separate post soon.

8) He is strong. He has a tall, lean body with strong muscles and I like it a lot. We've done Bikram yoga together, he works with a diving coach (springboard/platform, not scuba), he works out at the gym. With four small kids he doesn't get nearly enough time to do this stuff but I know he will get back to it, or to something similar, and his body will be ready to pick back up where he left off. I greatly admire his strength.

9) He would kick ass on Survivor. Seriously. He can fix almost anything, he could figure out how to catch a fish or kill a lizard, he can either already make fire or he could figure it out and no one can tell what he's thinking (often including me). He's competitive and good at physical challenges and puzzles. He loves games. He really needs to get on that show. Maybe when the kids are a tiny bit older because if he went now I'm not sure who would be playing a gnarlier game of Survivor. Plus he might decide to just stay on that island forever.

10) He is amazing with our kids. Their faces light up when he walks into the room. He will spend an hour in the pool with them, throwing them up in the air, helping them jump off the side, showing them how to swim. He gets up with them every morning and changes all four diapers. He talks to them with such love in his voice and the love he has for them is written all over his face.

11) He is a good cook.

12) He is great at cleaning the house.

13) We have so much fun together, when we actually make time to do things that are fun.

14) He is the best teammate I've ever had. We can put our heads down and pack up the van, load up the kids and take them to the top of the mountain in a wobbly, yellow school bus and we don't want to kill each other. We may sometimes (often) want to jump out the window ourselves but we keep going together, even when it is very, very hard.

15) He is a quiet guy.  I used to worry more about him in social situations because I was afraid he was miserable. I'm learning to see that he knows what he needs and can take care of himself, making connections in his own way, even when he's not particularly comfortable in a house full of people or a big crowd.

16) He is a man who knows who he is.

I could go on but sixteen is my favorite number and it feels like a good place to stop.

There were a couple reasons I wanted to write this now.

Number one, I recently wrote a piece about marriage being hard for me and that was tough on him. Even though I tried to make it about me and the things about being married that I struggle with, he is the only other one in this marriage so it can be hard to separate what's me and what's him. As I keep going with the story of September I will share more about marriage and what I've learned about it and myself. . .but we're not there yet.

Number two, my last entry The Boring Days mentioned my being pissed at my husband for not staying home and helping me more. That's new for me to even say that kind of thing to him (which I did, a few weeks before I wrote about it) let alone for me to write it on the internet for people to read. It felt a little scary, a little like a betrayal. But to quote my favorite writer:

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.”

― Anne LamottBird by Bird: Some Instructions on Writing and Life

I'm trying to own my stories, including the part that acknowledges that I can't expect people, even my husband, to read my mind. If I needed him to stay home, I could have asked. A real ask, not a whispery, half-hearted suggestion. Point being, I'm not taking all the blame myself nor am I placing it all on him. But he didn't choose for me to write about my life (which is also in many ways our life) on the internet and I want to acknowledge that it won't always be comfortable. And it will never be the whole story.

I wanted you, and him, to have more of the story.