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

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.

Thursday, October 8, 2015

The boring days

For some reason I think of the next few days of September, actually 8/31-9/4) as the boring days. Strange because I almost never even think the word "boring" because my maternal grandmother forbade us to say we were bored when we were in her presence and that somehow stuck for all other times too. Strange also because the days after Stinson weren't boring exactly. . .though maybe they were for my kids. They were more just. . .blah.

When a colitis flare starts I expect the next few days to be full of trips to the bathroom, no coffee, very little hunger, drinking broth for breakfast and maybe all other meals. Resting when I can. There won't be trips to the playground or meeting up with friends--we are laying low.

When I woke up on Monday I felt pretty bad. Very low-energy after having been up many times in the night with diarrhea. My husband got the kids up and I started shoving things around in the dirty kitchen to make room for whatever breakfast I planned to be serving. I was shuffling.

The kids were the kids--loud, demanding, dropping food on the floor, spilling water, sometimes screeching. I looked at my husband and asked "Is there any way you could stay home?"

But not in a loud voice. I didn't say I need you to stay home. I didn't say please stay home. I said it probably with a little (tiny) laugh I sometimes have when I'm asking someone for something that really means a lot to me but that I'm afraid they'll say no to. I didn't expect him to say yes. Not only does he not like missing work but he rarely stays home when he is sick. And I have had colitis flares many, many times since we've known each other. Don't think I've ever seriously asked him to stay home. I think I knew, more than other times, that I did not feels strong enough to take care of the kids by myself all day but I think I also thought I just would do it.

Off he went to work and here I stayed to try to spend as much time as I could laying on the couch or laying on the floor. It's a little hard to remember the details of those days because a month has passed and because they were mostly made up of a mix of the elements that all of our days are made up of. We watched some Elmo, only much, much more than usual. They played outside in the sandbox. I put them down for two naps instead of one and listened to them talk for much of the time they were in their cribs before finally falling asleep each time. I laid on the couch and watched recorded episodes of Friday Night Lights, happy to have discovered a channel showing four episodes a day, perfect for a sick day binge. Or an any day binge. Tim Riggins.

I think they knew I only had a little bit to give them. My kids are great like that. We played Legos on the floor. They played around outside and I sat in a chair. My son asked to go "gumping" which is jumping on the trampoline and I'm not sure what my response because I know I definitely didn't have the energy for that. I probably took them out and then sat on the trampoline to watch them. I changed diapers and fed them and answered questions and laid back down as soon as I could, wondering why in the hell I was doing this by myself when I feel this shitty? I'll be honest, I felt a little pissed at my husband for not staying home. And pissed at myself for not being clearer about what I needed. I think we were both so used to these periodic colitis flares that we didn't change much of our lives when they occurred. We waited for them to pass. And the timing was bad. Usually I have Stephanie the wonder nanny on Mondays but she'd changed her schedule that week. And usually I have my dear friend Phyllis come on Tuesdays, and she might have come that Tuesday but for some reason I think she was out of town. I think my cousin Pickle came (not her real name but the only name I call her) but that could have been the next week. Mostly what I remember is;

-I felt really bad
-I realized that my kids were fine, even if they were watching a lot of TV and not getting out much. I stored this away in my brain as a reminder that we can all lower our expectations a lot and still raise good, happy kids.
-I was seriously down about my life emotionally. I was in a funk. This also almost always happens to me when I get sick, especially with colitis when all the good hormones (your Dopamine, your Serotonin, your happiness) are flowing out of your goddamn leaky bowel.
-People around me were also starting to get diarrhea, some of the kids, others. It started occurring to me that maybe I had mostly a stomach virus that was making my colitis worse.

This went on for Monday, Tuesday and Wednesday. My babiest girl Daphne, my youngest daughter, though not my smallest, threw up all over herself and on me sometime in the middle of the week and I gave her a hug, took the high chair outside to rinse it off, wiped the vomit up off the slate floor of the kitchen, and burst into tears. I texted Haku, our other babysitter and Stephanie's roommate, asking if she could come pick up the kids and take them to her house. "Yes!"she replied, because she is an angel. Hallelujah.

Back on the couch for me with more Friday Night Lights. Stephanie's changed schedule meant she was coming Thursday and Friday. I spent those days in bed, hardly seeing my kids. I read Anne Lamott like the medicine it is, trying to calm my mind which was steeped in anxiety and self-doubt and a feeling of giving up. A familiar braid of mental responses when my body is in bad shape. My mind has been running the show around here for as long as I can remember. Together we hunker down and wait out the gross, painful, inconvenient, daily life-altering physical symptoms that pop up on occasion. It's a familiar dance and I wasn't paying too much attention to it. I was just waiting for it to pass.

Saturday morning, almost a week after our Stinson Beach trip, I woke up and got out of bed. The kids had come running back to get me, shouting "Mommy wake up!" as they often do when their dad gets them out of their cribs. I shuffled out to the living room, curled into the recliner to be a physical presence in the room where my family was, watched a few minutes of Elmo and then took myself back to bed. They were immersed, they didn't need me.

I fell back into bed. I felt awful. Weak. The idea of a full weekend with four kids made me want to cry. I don't know if I fell back to sleep but I laid there for at least an hour. This is the day I ended up going to the hospital for the first time. There's a funny and illustrative little story that comes first though so stay tuned. That's next.

Monday, October 5, 2015

An anecdote

I want to tell this story in a linear fashion but a) I do not think in a linear way and b) my mind is so full of ideas as a result of the month of September that I'm living them full out daily and I want to share those with you . . but I don't want to get ahead of myself and talk about the end before I tell you what came first. And, I am tired. Tired because I am on a big dose of prednisone, a steroid, that keeps waking me up at 5 am (not so bad) or 3 am (not so great) or midnight (bad news). I wake up and I am wide awake. No chance of falling back asleep. Once I stop fighting it, it's kinda nice. Quiet house all to myself. Time to journal or read or shower. Or eat, since the pred gives me the appetite of ten men. I almost said a horse. Which is bigger, do you think? Probably depends on the men. Or the horse.

I'm tired and I am doing my best to listen to my body and take gentle care of myself so I won't write long. I won't write the next few days of the September tale, the days that came after our Stinson trip. Instead, an anecdote.

Have you ever been to the ER? Or admitted to the hospital as a patient? Or taken someone else? If so, you might remember a question they ask almost every time:

What's your pain on a scale of 1-10?

Here is what happens in my head when I get asked that question:

What IS my pain level? I mean, I have definitely been in more pain than this. It's certainly not the worst pain I've ever felt. I could say it's a 4, that leaves me lots of room for if it gets worse. But is it really even as bad as a 4? And I mean, it's nowhere near as painful as my first tattoo.

And on and on, complete with comparisons against imaginary people and how they might feel in my situation.

Have I mentioned I experience some anxiety in my day to day life? Yes, well.

For the record, the health care team is using that question as a tool to assess how I'm doing and to start building an awareness of me as a self-reporter. They're comparing what I say to how I'm acting, to how I look, to what my vital signs say. It's a diagnostic tool among many. They're (probably) not standing there thinking "This joker thinks THIS is a four?! Verbal eye roll." Maybe they are; I'm not a nurse.

When I went into labor with my first two it came on fast and strong. At one point I was on a bed with the fetal monitors strapped around my huge belly, tight as hell and making me crazy with claustrophobia. My contractions came every minute or two and with each contraction I threw up. Tears were streaming down my face and I was still answering every question the doctor or nurse asked, in detail. I kept thinking, "If I could just get a second to catch my breath I'll feel much better."

Not long after that I was wheeled into the OR for an emergency C-section. Where I wanted to marry the anesthesiologist who gave me a spinal block and took all the pain away.

Later on in my hospital room, alone with no babies since they were in the NICU and my husband was with them, I looked up at the wall. There was a childish graphic--ten stick figure faces in a row. I don't know if Face #1 had a smile but I know Face #10 had tears streaming down its very sad looking face. It didn't register much, just something to look at.

I truly have no idea at what point it occurred to me, some time long after all of us had gotten out of the hospital, that Face #10 was the closest match to my face during that experience. That sign said on a scale of 1-10 my pain was a ten.

I'm sure something could hurt worse than that, I thought. As if I have to save that ten and only use it once for what is truly the worst pain I could experience.

So that's another thing about me. You're learning it not much after I learned it myself.

Friday, October 2, 2015


People are responding to me, via text or Facebook messenger or other older-fashioned ways. The main thing I'm hearing is "Me too."

Me too.

Something is happening here. Let's pay attention.

When I wrote my marriage post (can someone tell me how to link to old posts here? I am computer-challenged) my husband got upset. I could understand his reaction. I had asked him weeks before whether he minded if I wrote about our marriage and he said I should go for it. I think I offered to let him read it before hand, which I didn't end up doing, mostly because I felt like I was so careful to make that post about me, not about him. As if it is easy to separate those two things and people out when you're talking about a marriage. He felt like I'd just written on the internet that he was failing me because I was saying I wasn't happy. No way! I didn't feel that way at all and I was sorry what I'd written had brought that up for him. I was glad I had written it though.

Why? Because I say things out loud. That's always been important to me but more and more I'm seeing it as my calling maybe. Eek. Saying you have a calling feels a little presumptuous but hey I'm on high-dose steroids so I feel like I can do or say or invent anything so let's all enjoy it while it lasts.

I've written about this before I think, though the archives of this blog are like a foggy land of cocktail party conversations drowning in amnesia and I can hardly remember what I have put down and what I haven't so bare with me if you've heard this before. I've written about how having four small children in a row has the tendency to bring out a certain response from other people:

"I thought having one was hard, But I can't say anything to you!"


"I'm going to tell my daughter to stop complaining. She has two under four and she thinks she has it bad." (Wow, yeah. Don't tell her that. That will help no one.)

I get it. We all compare and it can be jarring to try to figure out to respond to someone that seems to be doing 4x the parenting you are. It's impossible to even imagine it other than doing some made-up math in you head like "If I took the diapers, the crying, the food on the floor, the whining, the puking, the pinching, the sleeplessness and the emotional devastation of parenting my one child and multiplied it by four. . . I would die." The looks on peoples' faces are funny except for how slightly tragic they can be. And yes, it is that hard. It is hard, hard, hard to have two sets of twins under three. But it has got to be hard, hard, hard to have one or two or three or..I can't go higher than that or I will have an anxiety attack.

And marriage seems pretty damn hard for many people. Most people? All people? I don't know but I'd say definitely most. Not hard all the time and probably some couples and some individuals find it less hard than others. We can lose sight of this because these are hard conversations to have. It's scary to admit when something isn't working. What if it's me? Am I even allowed to say I want to feel happier than this? Feelings get hurt. Communicating with other people is hard. God, SO hard.

I wrote that marriage post because it was true for me. Thankfully, it does not feel true right now so I am enjoying the hell out of that. But mostly I wrote it because when we were in Montana this summer I had a conversation with a female friend, someone I don't know well but with whom I felt an immediate connection when we met a few years ago. Incidentally we met right after my husband and I got engaged, saw each other again at my wedding a year later and then hadn't seen each other until this summer. In the span of those four years I'd gotten engaged, married and had four kids and she'd gotten divorced after thirteen years of marriage. Painful.

We talked about it and when I mentioned how hard the last two years had been for me in terms of our marriage she was surprised. She said she always admired my pictures on Facebook and how happy we looked and wouldn't have imagined we were struggling. Which struck me in two ways. Really? I almost never post pictures of or comments about me my husband and oh no.

I do not want anyone to look at my life and feel worse about theirs. That's not under my control but what is under my control is the ability to tell my stories and say things out loud. I have a gift for that. And because I have seen throughout my life what happens when you open your mouth, put words to a page, create a piece of music or do anything that allows for the connection between us. Those connections let people take another step. Another breath.

Me too. Me too. Me too. I am hearing this from a lot of women. So far it's mostly women but I'd guess there are men out there thinking and feeling it too.

This is hard shit. I think we need a revolution.