Wednesday, May 29, 2013


Thursday, January 03, 2013

Dog days

Last night, for no particular reason, I mentioned to the kids that the people at one of my prior jobs were "mean."  Explaining workplace bullying can be challenging when you're new to the workforce.  How to describe micro-managers, no autonomy, constantly changing expectations, and belittling management to someone who has never even had a job?

Sanna wanted to know why they were mean--not how but why.  Distance gives me perspective here, although on some level, I knew this even then: They believed that treating us the way they did made the company better, even if it was difficult for the workers.  (And anyway, they figured, who needs these peons anyway?)

Karl, however, wanted to know what they did that was mean.  My children don't understand my job, even a little, so I tried an approach more on their level.

Let's pretend that at school, you were not allowed to sit on the carpet wherever you wanted at circle time.  You had to sit exactly where your teachers said, even if you didn't like it, and you had to sit there every day. 
At coloring time, your teachers tell you to draw a dog, and you draw a big fluffy gray dog.  Your teacher doesn't like that dog.  Your teacher wants a small brown dog.  So you draw a small brown dog.  Then the teacher tells you the dog's eyes are too big and the tail isn't right.  You try to draw the dog again.  Your teacher gets mad about the third dog and tells you to go do something else and asks another child to draw the dog.

At this point, Karl is near tears at the dining room table.  Brooke looks a little alarmed at how concerned he is.  I add, "But your teachers never do that!  They're happy with all the dogs you draw."

More on life later, folks.  More later.

Tuesday, May 29, 2012

Stars fade

Good and bad: Listening to music so engaging that I’m completely unable to write coherently.  Finishing a wonderful book with two hours left on one’s outbound flight.

This week takes me to a large westerly near-coastal city.  A funeral.  A young man not of my acquaintance but close to a young man who works for me.  Cause of death totally unknown, unexplained, and unexplainable.  I have explained to my own children only that I am going and why I am going, steering the conversation away from why and how and what happened to this very healthy young man in his sleep.  We can understand car accidents—a risk whenever we get on the road—and drug or alcohol poisoning.  Cancer, so tragic, but it’s a disease and we can put it in a category in our brains and file it away*. Sudden strokes, clots of all stripes, unknown heart defects discovered in autopsy: these are frightening and shocking but can be processed and understood. 

* Several months ago, I learned that a man I once knew who had a tendency toward violence died five years ago—I created a new folder in my brain for death due to cops or drugs or overdose.

Unknown cause of death cannot be understood.  We cannot find a way to understand healthy young people going to bed and not waking up.

The brevity of this life has, as such, been brought to my attention recently.  Everything I could be doing is newly automatically prioritized A, B, C (a la Covey), and I’m doing a lot more A stuff and a lot less extraneous crap.  Biking with the kids to the bookstore for special evening story time gets moved to the top of the list.  Tidying the rec room is definitely a C activity.  I find myself having more patience with the kids, more willingness to sit and listen.  Things I had been putting on the Someday When I Get Around To It list are moving up.  Others are sliding off; not even enough value to keep them on the maybe list.

I think I want to move writing back up the list of things to do, but writing hasn’t made that automatic leap upward.  Maybe because I already spend a lot of time in front of a computer or because I continue to have pain in my hands.  Maybe I’m not really a writer, or maybe my writing energy is being sapped during the work day.  I can tell you that I have a renewed interest in beauty.  I don’t really know what this means other than to say that it’s not about personal grooming or fashion.  It’s about taking a run (jog/walk) down by the river and spotting a turtle on a log (word of advice: they will swim away if you cluck at them like they’re cats).  It’s about the way the light hits the tops of the trees after dinner.  It’s the look in your kids’ eyes when they’re soaking wet and covered with grass after playing in the sprinkler with friends.  It’s honesty and kindness between friends, and it’s a warm conversation between strangers.

It’s making sure the people around you know that you’re standing behind them, acknowledging grief and sharing warmth.

Grief is a dark, dark place.  I can be a tiny star to serve as a reminder of the sun.

Saturday, March 03, 2012

Flip Turn

Karl and Brooke are at a birthday party, Sanna has a friend over, and we've all just been fed.  The house is in a state of reasonable calm, and, well, I have missed writing here.

I was thinking this afternoon that one year ago, I was too weak to do much of anything.  I was more or less house bound two days each month, could sit in a straight back chair long enough to eat a meal but not much longer.  Today, although I have had some recent setbacks, I can do almost anything I need to do: install shelving in the rec room, work all day on cleaning and organizing a room (stopping only for beer), and actually honestly work out.  Me.  Work out.  Weird.

In December, I was having more pain in my hands and feeling not so awesome with the side effects of methotrexate.  I've never been worried about being too graphic here, but let's just say that my mucous membranes were under siege, and what should not have been uncomfortable made me feel like I was being split in two with every bowel movement.  My hair was falling out in greater amounts, and I had to get it cut short to keep it light and fluffy.  There were other ways in which I was being a wimp about MTX, so I asked, and Dr. R2 dropped me to 17.5mg.

Two weeks later, I was at my PCP's office with a hot, prickly sensation over my back and chest.  The PCP nodded solemnly and told me it was one of three things:
1. A virus of some kind, in which case it was probably self-limiting
2. Medication reaction to the MTX (unlikely because my dose was now lower and I had been on it so long)
3. Some kind of disease process related to my arthropathy

I took Zyrtec for a few days, and it went away.

In January, around the time I was due for even more bloodwork, I was thinking I was feeling even less awesome and wanted to go back to 20mg.  I was also in a massively stressful situation at work involving reduction in force, and I had to lay off one of the incredible and amazing people I work with.  And my elbows broke out in some kind of eczemous rash--just my elbows, just the tips of my elbows.  The rash resisted hypoallergenic lotion, Aquaphor, and hydrocortisone.  I went back to the PCP, nodded solemnly and told me it was one of three things:
1. A stress reaction of some kind, in which case it was probably self-limiting
2. Dry skin
3. Some kind of disease process related to my arthropathy

But this time, I left with drugs.

I went for my routine bloodwork only to find that my white count was low enough to merit another dose adjustment.

I've been experiencing some of the extreme neck pain I dealt with around the time that we moved, bad enough to make me rummage through bins for any leftover Tylenol-3.  I didn't find any, so I have been self-treating with leftover prednisone.  It has made the neck pain manageable and allowed me to get by with more regular chiropractic adjustments.

We joined the Y in town a couple of weeks ago, around the time that I started being able to feel even worse from the dose adjustment.  I worked out four times last week and four times this week.  It's hard, no doubt. I'm convinced it's worth it, even though it means leaving the house at 5:30 just for a 30-minute workout.

Readers who don't know me in real life probably don't know that I was once a pretty good swimmer.  I competed regionally, placed highly locally, and was recruited to compete in college, offered the opportunity to swim for tuition, even.  Instead, the day of the last regional swim meet of my senior year of high school was the last day I swam over that long, black tiled I, the last time I wore a cap and goggles, the last time I felt the spiraling plastic lane markers brush my shoulders.  I had been swimming, worn a suit and splashed in the water, lazed about next to a plastic slide with my kids, but I had not truly done any swimming in 15 years.

Until last week.  I bought an appropriate suit (then returned it for a larger size! I have grown more than I thought since high school!), goggles, and a latex swim cap.  On Fat Tuesday, I slid into the shallow end of an unoccupied lane 10 minutes after the Y opened.  I ducked under the water and pushed off, and I swam.  When I got to the other side, I took a breath and let muscle memory take over.  My flip turn was fluid, natural.  It felt really good.

It's okay that I'm not doing awesome.  I will find a balance with drugs, maybe try out a new inhibitor of inflammation that's due to be approved in August (tofacitinib) if Dr. R2 and the insurance will let me, and the exercise.  I am still considering training for a local triathlon, or rather, I am going to train as though I'm doing it, and maybe I will actually compete.

Thursday, March 01, 2012

Celebrate good times

It's March.  Today is Brooke's birthday.

Sanna also turned 6 last month. (44.5 inches and 39.75 lbs. Big enough for the next series of carnival rides!) I guess I was too busy living it to write.

A girl and her favorite color

Karl at SJ's

Monday, December 19, 2011

Dude.  Christmas is hard.  It's not just Christmas.  It's working and being a parent and a partner and trying to nail this exercise/running thing.  I'm kind of pathetic, totally interested in my stats from my little Nike iPod doohicky, ignoring the good people of the internet from whom I have drawn so much support over the years.  It sounds sarcastic, maybe, but it's true.

Here's a question.  If I put the funny things the children (and I) say on Facebook, would you want to read about them there?

Think about it.

Here are some:

Sanna asked to take something for the food drive at school, and I gave her a choice of soup or chick peas. "I'll take the soup because I like chick peas."
Me: "If we ate food from the food pantry, wouldn't you be excited to see chick peas there?"
S: "I'll take both." (No small feat since she has to drag both cans around until the afternoon, along with her shoes, lunch, and full metal water bottle.)

Sanna, late one night in bed: "Mommy, I can't sleep. I keep thinking songs over and over in my head. It just keeps going, 'Jingle bells, jingle bells.'"

me, telling Sanna to keep getting ready for the day: "If you're going to eat your oatmeal, there's no time like the present."
Karl: "Where's the present? Who has a present?"

Karl told me about his teacher at school who has "a little mustache all over his face" and was just a little appalled when I told him he'd grow hair on his face when he became a man.

Children who will not pick stories because they want to set up the nativity set get the gospel read to them. Just FYI.

You know who plans a party for children at 5pm on a weekday? Sadists. Sadists and people who think children should have a stay-at-home parent.

Karl appears to be under the impression that the reason we eat plants is that they can't outrun us.  He had a very detailed dream that Papa S made him a gun and gave it to him for his birthday. The gun was made of yarn and wood and paper and tape and had water in it for squirting. This gift arrived at the right time, because there was a bear coming out of our house and Karl squirted it with his gun.

Tuesday, October 25, 2011

Kale Tale

I have a dozen other things to do (reviewing several documents in both original and commented form, writing a report, and counting some really old oncologists), but right now, I owe us some blogging. Let’s be honest, however, that you’re not really here and that I only owe myself some blogging, as it’s been a while since I wrote anything over sixty words that I wasn’t paid to write.

Things I eventually want to cover:
1. My trip to the rheumatologist last month
  a. My health
  b. Perfectionism and mommy guilt
2. Behavioral bullshit
3. Our first vacation as a couple since our honeymoon
4. Kindergarten

There’s probably something else, but when I sit down to do this blogging thing I rarely remember any of the hilarious things that happened recently. However, one I do remember: I’ve been wearing my iPod Nano on my waistband lately because I’ve been using the pedometer and also doing some jogging lately (see 1a), and Sanna noticed the little apple/Apple logo on the back of it and asked what it was. I mentioned that the company that makes iPods being called Apple and she was uncertain if she should believe me. Karl proclaimed it silly. I carried on explaining that when parents who work for that company go to work, they say, “Bye! I’m going to Apple!” Karl rolled over on the floor howling in laughter. Sanna became more skeptical. “Really?” Yes, kid, really. We settled on the parents telling their kids that they’re going to work, but I may have convinced her in the end that the company is really called Apple.

I’ve started Couch to 5K using the podcasts here. I have a strong preference for the alternatives she offers to her standard hip hop choices, but that’s a NTM thing. I’m on week 3, carefully timing these around methotrexate dosing and our other activities like the kids’ swimming lessons and Brooke’s pilates, but it’s working okay. It’s that time of year where I’m going to have to think about an indoor track or deciding that I’m going to run around in the cold. So far, it’s all outdoors, but it’s never been under 40F on any of my runs.

Upon the recommendation of people who know these things, I went to the local running store to get a proper fitting. I don’t know if I’ve ever discussed here how I have freak feet. They are theoretically a reasonable and normal size, but I am at a point where I buy all of my casual and dress shoes via Zappos. I purchase literally 8-16 pairs of shoes in an assortment of sizes (all narrow) to my doorstep and then try them on in the comfort of my own home. Due to the size of my orders, I’m in their next day shipping club and can place an order at 5:30PM and have them at my house before I get home from work the next day. I then return all but one or two pairs and only pay the retail value for those shoes, no shipping. It’s amazing. So I was only a little surprised that the specialty running store didn’t have anything that would fit me. They were able to order exactly three pairs that might fit, only to find out that one was discontinued and another was being redesigned and wouldn’t be out for two months. The third pair fit, thank goodness.

It was while I was waiting for that third pair to come into the store that I saw the fabulous Dr. R2 last month. Brooke and I agreed that I could fly solo, that we’d have no new information, nothing new to discuss in terms of options, so I went alone. I know why people prefer small private practices: the personal service, the familiar relationship with the physician and staff, and the access to everything when you need it. I’m thrilled with (most of) my experiences at the big giant research and teaching hospital, and I’ve had a great experience with very familiar relationships with several of my physicians, starting with the GP who called me at home on a Sunday to tell me my MRI of the brain was normal. Dr. R2 is no different. She asked after Brooke and the kids, told me she thinks of B when driving past B’s workplace. R2 is as thrilled with the improvement in my well being as I am. I like her. If I had had time to deliver it to her office, I’d have given her my beer when I started methotrexate.

My appointment was much conversation, a few updates, and a regular joint check. I reported hitting the local running store for a proper pair of running shoes, and she approved, impressed I found time (I used my lunch hour). We talked about finding time to do everything with two working parents, and she sounded overwhelmed. “I was buying Chinese for dinner at Whole Foods, and I’m in line behind this woman talking about putting kale into smoothies, and I’m like, how am I going to do that?”

Maybe it’s my laid back nature (no, honestly) or my unwillingness to get into mommy competition and mommy guilt or even my recent bout with inflammatory autoimmune crap, but seriously, it’s not worth it. Don’t compare. Don’t feel like you have to do everything. Do what you can. Do what’s fun. If everyone is fed and clean enough to avoid an infection AND LOVED, you’ve done enough. Order takeout and read together on the couch for ten minutes. Pack sandwiches and go canoeing. Give everyone a graham cracker while you wait for the macaroni and cheese to finish boiling. Sorting out last season’s clothes is just gravy; sit down with a glass of wine and calm the fuck down.

But what I said was, “Kale is really good on its own. Olive oil, garlic, and salt. It’s wonderful.” And what she said was, “If you can start running, I can eat kale.”