Et Tu, Monkey Bread?


I did not grow up with things like monkey bread or pull-apart bread or other fascinating pieces of American culture people have managed to turn basic cinnamon rolls into (I had cinnamon rolls, homemade ones, we were not savages). So I had an idea about monkey bread until very recently, and that idea was that it had something to do with monkeys and therefore was banana flavoured.

It turns out this is not true at all.

Monkey bread has nothing to do with monkeys. It has to do with the feeling people have when they pick something apart with their hands, which is that they are like monkeys, but I can tell you from careful observation that monkeys actually would just pick up a whole loaf of monkey bread and eat it straight like god intended, because it doesn't need to be peeled and monkeys are all business when it comes to food.

That was a bit of a divergence. This is about monkey bread or pull-apart bread, and brief expedition I took into the genre.

I've been working my way through types of cooking lately: I had a couple of weeks where I worked on pretzels. I did a madeira layer cake with lemon curd and passionfruit-strawberry jam filling, plus a Swiss meringue buttercream that is inevitably going to lead me down a Swiss meringue pathway very soon.

I'd gotten started on this path with a simple idea: I could make fast cinnamon rolls by using my rolled biscuit recipe -- my goal for 2016 was to get good at making biscuits and that worked out like a charm -- and spreading the dough with cinnamon sugar and butter.

Cinnamon roll biscuits

That worked great! But the quick icing I made came out too runny and sticky, so I began to explore frostings of various kinds. As part of those frostings, I also looked into other kinds of rolls to drizzle those frostings over, but to be honest I like the impulsive bake of the biscuit rolls.

So my idea was that right now I could explore pull-apart breads and end up with monkey bread because monkey bread has bananas in it. Except of course it doesn't. So unless I am willing to reinvent the genre (I probably am), I've reached the end of that road.

I made this bread: Cinnamon Sugar Pull-Apart Bread. I don't have instant yeast because I don't have a bread machine (any more; I had one in architecture school but ended up giving it away because I mostly used it to make dough and I already have a Kitchenaid for that). So I made some minor changes to how the ingredients went together to proof the yeast properly.

Mine came out looking like this:

Pull-apart bread out of the oven

It kind of collapsed in the middle which was OK, but I didn't have the right platter to put it on so I had to kind of lay some plastic wrap down under that end.

For the icing, I did a simple powdered sugar and milk icing. I watched a dozen videos on this online and discovered a couple of things:

1. You need to make way more than a reasonable person would ever use, because the ratios are touchy and you have to keep adding a little more sugar and a drop more milk to get the texture right.

2. It comes out better when you use a mixer to beat the heck out of it.

That was the trick. I made about four times as much of the stuff as I drizzled on the top of the bread, and the consistency was perfect. It stayed white and distinct, so it was a graphical element and not just general stickiness.

Icing on the cake

The bread was also really good. We ate it with friends the next day and between four of us ate the whole thing. My next foray, I am guessing, will have to be banana-flavoured.

More on Running


So I finished C25K. It's basically 8 weeks long, but I took 8.5; I stretched out the last week because it had been hot here and running is harder on my heart when it is hot. And I hate running in the heat, so there.

The program had actually had me thinking a lot about running when I was a kid, and how different it is now. I started running in high school, when I joined the cross-country team to hang out with friends. I don't know why I did this, because honestly I've always thought of myself as a fairly inactive person, but also I have this kind of closet jock thing going on.

I found I liked running, but running did not seem to agree with me. I'll spare you my extended-play rehash of every running injury, but suffice it to say that I spent a lot of time in pain, and eventually a doctor told me to stop running or risk not walking.

But I never really gave up on the idea that I might be able to run again. I replaced it with biking and swimming, and those are good and fine things on their own, but I really missed running.

While I was at Cal Poly it occurred to me that sports medicine had made some huge leaps since the eighties, and I was in a school with a football team and a clinic. So I saw a sports medicine doctor and he told me to go ahead and run, but to build up to distance slowly. The idea being that running is a contact sport, you and the ground, and you need to acclimate your body to the impact. I had been injured from the start and never really recovered because nobody told me I needed to start slow and acclimate my body to pounding the pavement (and all of my injuries were from that contact).

That fits with what I remember of the experience: my first day of cross country was an easy run, but our shortest run was still three miles long. Nobody ever talked about teaching your body to take the contact, perhaps because school sports were really meant to be for kids who had been doing sports of some sort since they were very small and had built up that base. Even in college when I got back into running for a while, I started out with runs that were really too long. I am here to tell you that any training program that suggests you can run a marathon in 12 weeks is misguided and will lead to injury.

So that's where C25K comes in. When I talked to the doctor at Cal Poly, he suggested I use it as a framework (it had only recently come out and everybody was talking about it, if I recall correctly). I got a brief start on it, but changing up your exercise routine when you are in the middle of doing a design thesis is not the best of ideas. Fast forward to my home-care physical therapy after the stroke, and when my physical therapist told me I could run on the treadmill (which we bought shortly after I left the hospital) at a very low speed as long as I alternated with walking and kept my heart rate low, I decided to give it a try again.

It was pretty good. The week or so before starting the program I did regular run/walks using the treadmill's "Hills" program. I found I preferred using C25K, because it has a nice structure to work around. I especially liked using the app on the phone and running on the treadmill, where seeing my stats was easy to do without nearly running into a lamppost, and where I had very fine control over my pace.

So when I was getting to the end of the program I started thinking about what I wanted to do next. And I decided to do it again.

Here's the thing: these beginning programs are hysterical to somebody who hasn't done any serious running in 20 years. They assume your starting pace is a 10-minute mile. A 10-minute mile is very respectable, and I'm sure it's a slow run for some people, but if you have never run before, or if it's been some real time, that is totally insane. It's not just the stroke; I'd been doing this fitness boot camp thing and running quite a bit, and I'd have been hard pressed to run the first C25K workout at even a 15-minute mile. I know a lot of people who start this program who have literally never exercised in their entire lives. Somebody who is honestly stepping off a couch into a running program is going to be closer to a 20-minute mile.

So I started doing C25K all over, only instead of run/walk I'm doing my running pace for the run parts and upping the pace by 0.5mph for the running part (that's how the treadmill handles speed). When I finished the 8 weeks I was running a 15-minute mile (I could go a little faster, but not for the entire duration), so that's 4.0mph, and my running parts are at 4.5mph, which is a 13.3-minute mile. Still not a 10-minute mile. I'm taking it slow and working up there.

(I also changed to using the the Couch-to-10K app for this session. I'm not sure if I want to do the whole thing; I'd like the mileage of the 10K training program, but I think I'd prefer it spread over every weekday rather than three times a week. I think I can do that. In any event, the really different part of the C210K program is just tacked onto the end of C25K, so I won't have to decide if I wanted to do that for a while.)

It's not 100 percent smooth sailing. I've had to walk some of the walk parts instead of jogging them. I've had to go slower. I'm still working on my heart rate and getting my breathing in order. And I'm still overall staying a little slower than I'd really prefer. But I know that if I just keep working on it, it will get better, and I am now further into a training program than I have ever gotten without any kind of injury or nagging pain. I hardly even ache the day after my runs. Yay for slow but steady training.

A bit ago I was talking about my terrible running and the experience of breaking the 15-minute mark with a friend who asked, basically, "aren't you embarrassed to talk about how bad your running is in public?" And no, I'm not. I am running because I enjoy running, and because I am allowed to do it. I'm not interested in racing, so I don't care if my pace is terribly slow, because in my opinion it's better to run really badly than to not exercise at all. It is sometimes hard to put yourself out there and talk about how much you suck at something, but if you never ever do anything except what you already are perfect at doing, you will never learn and grow as a person.

And yeah, I want to be the sort of person who is so good at running that they think a 10-minute mile is a light job that any beginner could manage. That'd be great. In the meantime, I'm just enjoying the running and trying not to get injured.

Self Tracking Tools


Pretty much everybody who knows me knows I'm a big geek about a lot of things. What you may not realize is that I'm a huge geek about self-tracking. I know, that kind of came out of nowhere, but there you have it. I've been tracking things like pain and mood and other body information for YEARS. Actually, holy cow, for DECADES. Since we moved into the Smartphone Age, I moved a lot of that onto my phone, but before all this I kept it all in a spreadsheet, and before that a little notebook with information. I still use a spreadsheet for a lot of things.

Tracking is mostly useful for me to explain things to doctors, who dislike believing their patients, especially female patients, without data. More than once I've had a doctor disbelieve me until I produced a sheaf of data points to prove what I'm saying. That's a sad statement about the state of medicine, but I work with it. If doctors want data, I have data for them.

So these are the technology tools I'm using now to track data about myself:


I have this iPhone app, Tactio Health (I use a free version with fewer bells and whistles, but good enough for me), which I use to track my weight, exercise, and a few other things. It would like me to track more things, but that's what I give it. It has been interesting having a little portable weight history with me. I've been using that for a year or so. Until recently I didn't see much value in tracking my blood pressure, but that's been kind of weird since the stroke so I'm tracking that now, too.

See how much I exercise!

This is the screen where I can record exercise events (the app doesn't directly record activities). You can record an event by time, distance (well, for running), or calories burnt. I track by calories burnt according to my heart rate monitor, to keep things consistent. The big surge on the left is when I did boot camp for a month before we left for Turkey; I got really regular about recording exercise here because it fit with my cooldown routine.

Then there's a big gap while we were in Turkey because I didn't record our walks. Then one lone spike where I went back to boot camp on May 13, which was the day I had my stroke. After that are the blank couple weeks when I wasn't allowed to do any exercise, then you can see spikes for my PT runs (which are actually 50% walks). It's a nice way of keeping track of workouts and comparing the work I do in each one.

I always use a heart rate monitor when I exercise. I do this because I have a heartbeat irregularity -- benign but unpleasant to experience -- that shows up when my heart rate is relatively high. I've also noticed that when I let my heart rate get too high it sort of gets out of control and I feel horrible for a long time, even after I've stopped exercising. So a couple years ago I started using the heart rate monitor to stay in my healthy, safe range.

Since the stroke, I need this feature even more. My blood pressure is all over the place, often much higher than I am used to, and so my heart rate has been harder to control. I'll set out for what feels like a normal low-key practise run and the monitor will start beeping about approaching the danger zone when I wasn't expecting it at all. The point of the PT runs is not to push myself nearly to death, but to work on balance and retain some strength, so the heart rate range indicator has been a huge help. I'm also running v e r y  v e r y  s l o w. Slow enough that I can actually walk at that pace.

Wrist with monitors

I have a Polar RS300X SD, which is still available. It's shown here on my wrist with the light gray Jawbone Up beside it (more on that in a bit). It has two features I use all the time: lap timing (for tracking intervals), and an alert to let me know I've reached a certain heart rate. It has a lot of other features I don't use, but to get the heart rate alert I had to buy a lot of extra features.

Every now and then I think of upgrading my chest transponder to have bluetooth so it can talk to my phone, but I'm probably fine without that.

The heart rate monitor also talks to our treadmill, a LifeFitness 9100H. We bought the treadmill right after I got out of the hospital after the stroke, and I don't regret it one bit (I had been stalking Craigslist treadmill listings for three months at that point, so I knew exactly what I wanted and what price to pay for it).


Since I'm not allowed to run or walk alone, I do most of my workouts on the treadmill, which has a few good built-in routines, including two that talk to your Polar heart rate monitor. I like being able to set a target heart rate and have the treadmill change the incline to get me there and keep me there. I would like to be able to run outside, but this is working for me for now.

My favourite program is Hill, but on days when the dizziness is bad I stick with a 1% incline and relatively slow speed and just let the work of balancing be my challenge. The treadmill has side arms that I can hold onto when I feel dizzy. I find I bump into the side arms quite a bit, but not as much as at first.

Some people complain about getting bored with treadmills with fewer programs on them, but I find that even when I train outdoors I stick with routes I know rather than mixing it up frequently, and so far I don't find the treadmill boring at all. I listen to In Our Time podcasts and zone out.

Wrist with monitors

The Jawbone Up pedometer (on the right on my wrist) is a recent purchase. They market it like it's not just a pedometer, but it measures my steps, therefore i think of it as a pedometer. It also helps measure my sleep, and has a feature to wake me up at the right part of my sleep cycle. In addition, it vibrates to let me know I've been still for too long (if I haven't walked in 30 minutes). I wear it all the time, even in the shower (which actually is a nice way to keep it clean).

I like it, though apparently I walk very lightly because it hardly records any steps when I walk around the house barefoot. I have a little competition going with myself to see how far I can get before it realizes what I'm doing and records a step. It does great on runs or if I'm wearing shoes, though, and those are the walks I really care about. The data is very useful, as I am trying to make sure I get enough movement in even on days when I am resting.


It has a fancy little iPhone app that I like quite a bit, and can integrate with a number of other apps, like Runkeeper. Sometimes it feels a little simplistic, but I'm using it for a relatively simple purpose.

Up screen

For oversharers, you can have it post all your information on Twitter or Facebook, because we all need to know how much you slept. I like recording my data for myself, but I have no need to share it with the world. On everything I use I turn off or don't activate the sharing parts.

The stuff I've already shown you is perfectly good for working out and tracking it, but since I am me and I need to have more ways of tracking data, I have more apps.

I track my runs off and on (whenever I feel like it) with Runkeeper. It can use GPS to track where you ran and all that. A pretty nice little app if you run outside.


Of course, it works much better now that I've got a phone that knows where it is (my old iPhone always thought I was about 1/2 mile from my actual location, and when I was at home it thought I was in the middle of the Estuary, leading to some really funny driving directions and Runkeeper just not working). I have to enter my workouts on the treadmill manually, but that's OK for me. It's not as useful to me right now as when I was running outside, but I'm sure I'll get there eventually.

Runkeeper screen

Runkeeper does make some hilarious mistakes, like a walk I took where I let the GPS do its thing and it recorded that I had a total change of elevation of 88ft. It is not physically possible to get up 88ft anywhere in Alameda, except I think there is one high-rise apartment building down by the marina. I get the total elevation thing, but that's just ridiculous for a medium-length walk on a flat sand bar island.

But overall it's a decent piece of software, and there are some free workout plans for it that are pretty good.

I also use C25K Free, which is in theory an app to help a couch potato train to run a 5K race, but in secret is a really just an awesome way to get interval training cues while you work out.

C25K Free

I just restarted the program last week to add some structure to my runs. I had tried using it while running outdoors but it was hard to keep track of it when it was in my pocket, so I'd switched to a podcast with built-in audio cues. Now it's working well for me because it's convenient to just set the iPhone up in the cup holder where I can watch the screen all I want.

C25K in action

The screen is almost impossible to read in detail while you are running, but it does have some nice information. The only thing that makes me a little crazy about it is the center dial thing, where the line around it -- green when you are in "walk" phase, red in "run" phase -- goes backwards. You'd expect it to start all black, and the line would fill in like a clock, but it starts all green, then the line recedes counterclockwise. It's exactly backwards of what you would expect.

100 Pushups

I also have an app for 100 Pushups, which I was doing before the stroke. Regular pushups are now forbidden until at least the end of August when I have my next MRI, so I reset it. I can do wall pushups but I'm strong enough to do 100 of those already. But I do like this app, enough to pay some money for it. When I bought it it was linked off the 100 Pushups site, but apparently there's some drama there.

100 Pushups screen

It's a pretty simple setup, just hit the timer and it tells you how many pushups to do. You get breaks between sets. I was up to 40 or so and I'm not in particularly good shape, but if you go slowly and repeat training days, even a super-schlub like me can get pretty good at pushups.

I have a few other exercise apps that I don't use any more, and I have a couple meal-tracking apps that I tried out and didn't care for. I don't need to share what I eat and public shaming is actually the very opposite of the kind of incentive I need to eat well. The Notepad app and regular entries on my spreadsheet are working OK for me.

The other thing I use the phone for is tracking my medications.


Since the stroke I'm taking a lot of medication for pain and as protectives against seizures or blood clots. I use RxmindMe, yet another iPhone app, to remind me of when those are due. It is about as flexible as it gets while staying simple, and it does a decent job of helping me keep track of what I've taken and when, as long as I remember to enter the information.

RxmindMe screen

I blocked out my names for the various piles of pills I take, but basically you can enter a medication, then set up a reminder for it. The reminder can be for multiple pills or just for one. I have nicknames for the multi-pill combinations I take, so I use those, but whatever works for you. Every day you get a screen like this with checkboxes for when you've taken the thing. The app keeps track of the time when you checked the box, but if you forgot and go back to check it off, you can also change the time the pill was taken. That's super useful for showing doctors that you are compliant with your medication regimen.

As it turns out, it is also super useful if you just had a stroke and are still learning to cope with being a little more absent-minded.

You can also choose to skip a medication; I do that for some of my "take this as needed at these times" medications.

The app has a nice little database of medications so you don't have to remember how to spell everything. You add a medication, then set up reminders for it. They have a nice selection of reminder types, though last summer I had to do a prednisone taper and every single one of those pills had to be added manually, which was a bit arg, especially since my arm was super swollen.

Anyway, those are my tracking tools. I find that since the stroke I'm spending more time keeping track of my physical state. The exercise apps tend to get used all at once on a particular day, while the pedometer and medication tracking are more ongoing. Maybe one of these days I'll show you my Spreadsheet Of Doom.

Things I'm Thankful For


Here's the thing about having a stroke. Or at least, here's the thing for me about having this particular stroke.

Me pre-stroke is not me post-stroke.

Me immediately post-stroke is not me now.

I don't know how much of that is medication. I am on some intense medications and they definitely affect mood and temperament, and that's got to be doing something.

But also, I knew as soon as the stroke happened exactly what was happening and, knowing people who have been through stroke recovery and having spent a fair amount of time researching neuroscience and neuroplasticity for my architecture thesis, I knew just how bad it could get.

So when it didn't get that bad, things changed for me. Imagine having a really bad couple of months: your beloved dog has cancer that has come back, you have a job you love but it is in a field that is currently notoriously unstable, etc. I won't bore you with my drama. Then a piece of amazingly good luck lands on you, you are saved from incapacity and death and the ruination of several dreams. The very worst thing doesn't happen; the very best thing does.

Things change.

In addition, I don't know why, but in the hospital I had what can only be described as the most amazing lucid dreams. They went on for HOURS, which has got to mean I wasn't getting very good sleep or something, but for me, the experience was awesome. I got to do whatever I wanted in a dreamscape where everything went the way I thought it should (because these were lucid dreams, not regular dreams). I designed and sewed amazing quilts, I did lifecasting without anybody's hair getting stuck anywhere (this is, by the way, impossible, so don't think talent or practise will help; it will just make your subjects balder). I made some amazing furniture without screwing up the cutting or nailing at all.

I've been thinking about those dreams this last week. In a way I think they were about me telling myself stories -- the events in the dream were entirely in my control as opposed to normal dreams where you're stuck with whatever filing your unconscious mind needs to get done. But in a way they were about outrageous luck, and what I would do if I had it.

So I'm thankful for how lucky I was, to be in the right place at the right time, to have a truly talented neurologist, a smart husband.

Recovery is not easy. My days at work are simply exhausting. Physical therapy is actual work, and I sometimes spend half a day just going from one doctor's office to another. The stroke has raised problems with how other medical issues are being dealt with (I can't take any more drugs that have increased risk of stroke, or at least I should not), so I'm seeing specialists about those as well.

But through it all I keep thinking about walking shakily through the Critical Care ward at Alameda Hospital, with beds full of people who may never walk again, who are relearning how to swallow so they can stop being tube fed. I think of people I know who are permanently disabled from strokes, who can never again do some of the things that made them the happiest.

I did lose things in the stroke. But I got something, too.

I know, I know, these are getting long. So is the recovery, in which I discover things that I lost.


The most obvious thing to me right now is that my vision has gone all blurry.

I've always had better than 20/20 vision. When I was a teenager we discovered that the reason I was having trouble reading was that I have double vision. Since then several ophthalmologists have told me I have basically a synchro problem so instead of my brain turning the two images from my eyes into one 3D image, I just get two overlapping images. It happens to a lot of people, and is generally not a problem. There's a surgery to treat it but I have an intense phobia about knives near eyes.

And as it turns out, I usually only look through one eye (mostly my left, if you care). When I get tired I switch eyes and let the other eye do some work. When I get really tired, like that night I stayed up all night in college and read War and Peace because I needed to read it in pretty much one sitting to keep all the characters straight, that stops working and I see two images overlapping and it's very hard to read or do detail work.


That was me pre-stroke. Now I'm taking a drug, gabapentin, that makes your vision blurry. And since everything is blurry my eyes are tired ALL THE TIME. So hello blurry double vision.

I tried wearing Noel's "reading" glasses -- they're 5x magnifying glasses that he uses for doing detailed electronics and music work -- but they just made everything LARGE, doubled, and blurry.

I do a lot of reading. On a normal day I will spent a couple hours reading at a minimum: I read on the bus (or knit, but lately read), I read at lunch, I read on the bus on the way home. I read for a couple hours every night. On intense days I read all day as part of my work, reviewing specifications or product submittals. I take a break from thinking about hard problems by reading a short thing or two to change my focus for a minute. Reading is incredibly important to me. I find it difficult to be in a place where I have nothing to read. I will read tea packets or warranty information cards if nothing else is available.

So not a lot of reading has been happening, because it is exhausting. (On the other hand, I switched back to knitting on the bus, more on that in a second.)

The good news is that when you get off the gabapentin, you get your vision back (or so I have been told).


I feel a little dizzy when I walk.

Oh, that's not too bad, but there are times when it is unbearable. When I first wake up, my blood pressure is very low and the room whirls around me. Sitting up is difficult, and walking means putting a hand on the wall.

Taking the bus is a skill. I've gotten good at it, but I try to be awake and have eaten before doing it, because the higher I can get my blood pressure, the easier it is.

There is a weird feeling to knowing that most people who have a stroke spend their time trying to get their blood pressure lower, while I spend mine trying to get it higher.


This last week I was doing more hand writing at work -- I needed to make notes on some weather data I was analyzing -- and I noticed I'd lost some of my handwriting ability.

Now, I have excellent handwriting. I think my generation was the last to have handwriting lessons in school (until the fifth grade). I also went to architecture school and learned lettering, while everybody told me I would never use it.

In fact, I use it all the time. We do a lot of hand lettering on hand drawings in my office, because we are usually not the designer of record. And last week I noticed that lettering neatly took more time and mental effort, so I added it to the list of things I practise regularly.

Most frustrating is that when I go to jot down a quick note, my handwriting is untidy. And I'm keeping a handwritten list of medications I took and when (mostly for Noel's benefit, if he needs to tell anybody), so I see this all the time. It's getting better, and it's still better than the handwriting of most people I know, but it's surprising.


You're probably thinking, Shut up, look at all this typing you have done.

But in fact my typing speed and accuracy has dropped significantly, from 125 words per minute to probably 50. I don't take dictation, and I don't do transcriptions, so this is not a huge problem. I'm relying on spellcheck and autocorrect more than I used to. This is compounded by the blurry vision, of course.

Basically, my stroke has made some of my texts HI-larious.

It's a little frustrating. You get used to being able to just do something, to nail it every time, and suddenly it's gone. When it's something super obvious like walking, well, OK, that's what happens. But suddenly not being able to properly type out a text is shocking and surprising, somehow.

It's all about practise, and I work on that. I try to do a lot of typing every day, in small batches at least when I'm not at work, because doing more does help. I haven't tested my speed yet -- I'll wait until I can see again -- but I feel like it's improving.

As with walking without dizziness, I have real doubts that I will ever be at 100 percent again.


Officially, I have no speech deficits. And really, you probably wouldn't notice them at all. But I find it harder to say some things, my tongue has trouble with the words. It feels heavy and awkward.

Again, it's the being able to just do something you learned long ago. I should sit down with my language tapes and try out every language I've ever learned; it'd be interesting to see if I can say certain sounds as easily any more. I'm not sure I'd know which I'd lost through time and which through stroke, though.


You must understand, I still feel incredibly lucky. These losses are not as huge and incapacitating and what most people who have a stroke go through. I have tools to help me, and most of the changes are totally unnoticeable to others.

I've had some big triumphs in the last week. Yesterday I drove for the first time since the stroke, and did great. I felt uncomfortable, but I also feel like it's OK for me to drive and that really makes me feel more free. You have to drive to a lot of things here, and I was feeling bad about making Noel drive me everywhere.

I've started working more on the treadmill, which is great. I've only been walking but the physical therapist said I could try slow running as long as I didn't have balance problems.

This week I also change from in-home therapies to outpatient physical therapy. I'm hoping they can help me work more on my balance than we could at home. I also want to get some way to exercise my upper body when I'm not allowed to lift more than 10 pounds for six months.

Fun times.


Recovery is where you spend all the time. For me the stroke was maybe 15 to 20 minutes, then a day of barfing.

Then recovery.

My stroke

So there's my stroke. On the cerebellum, right near the centerline. The way my neurologist explained it to me, functions in the cerebellum mimic the body: the further to the outside, the further from the body core they are. My damage was all core, and it is confined to my balance.

The first part of recovery was working on simple lying-down exercises to re-teach my brain about balance. Turning my eyes side to side, up and down. Turning my head the same way -- still makes me dizzy, but it's important to do it to teach my brain not to be dizzy.

Walking. The first walk was intensely disorienting. I felt detached from my body. Things didn't just work the way I was used to. I was having to catch myself from falling.

And mind you, by then I had walked into the bathroom a few times. But longer than that, in a straight line, was harder.

The amount of work involved in walking increased by quite a bit. I've always been quite a walker, able to keep going, albeit slowly, for hours. Now walking a couple blocks is real effort. Not aerobic effort, but thinking effort. I'm having to consciously hold myself upright and not swerve around. The best comparison is to being a little drunk all the time.

Most of my physical therapists, occupational therapists, and frankly many other people are surprised at how well I am getting around. This is not common, though I was, as I mentioned, incredibly lucky and my stroke was very small and fortunately confined. And I was already an active person which is kind of half the battle for those poor PT and OT people, trying to push somebody to move who isn't interested in moving.

And the pain. Nobody ever seems to mention the pain when they talk about stroke recovery.

OK, maybe they are focussed on recovering more motor functions and mental capabilities, but let me tell you about the pain. I started out with 100mg of gabapentin three times a day -- that's the generic of Neurontin and an anti-seizure drug (they're very cautious about seizures after a stroke) that helps with nerve pain as well -- and 650mg of acetaminophen every 4 hours. That was fine up to a point, but once I really got exercising and moving around again, the pain got much worse.

WHere's the artery?

You see how the blood vessels are just kind of not there or all small and hard to see on this scan? Those blood vessels are surrounded by nerves, and the nerves are freaking the heck out. They don't know what is happening, and so they are sending signals to the brain and the brain doesn't know what the heck to do with that so, well, default to pain. Thanks, brain.

The gabapentin is the reason I'm not (always) curled up in a ball in pain. On Friday morning I woke up at 3am in hideous pain, the kind of pain that radiates out all over your body.

Doctors ask you to rate your pain on a 1-10 scale with 10 being the worst pain you can imagine.

My scale:

radiating pain = level 8

radiating pain plus barfing or severe nausea = 9

radiating pain plus blacking out = 10.

I have experienced all of these. Level 10 sucks really hard, by the way. Though to be honest I have a pretty good imagination and I think that having a limb cut off while in level 10 would be like a 15 or so. When I say things like that to doctors they never seem to know what to say, but I read this horrifying book once on the history of surgery and I think those early patients really knew what a level 10 really was. In comparison, I am a total wimp.

So, well, on MY scale on Friday I spent the hours between 3am and 11am at a level 8 or 9.

The thing was, it was the morning the housekeepers were coming, and having the house cleaned is very important, so we had to get us and the dogs out of the house.

I'd woken up at 3am in intense pain, and the acetaminophen didn't touch it (I've actually pretty much never found acetaminophen very effective, and its toxicity keeps me from keeping it around the house in general, but NSAIDS like ibuprofen are verboten when you are on blood thinners). You can't just take more -- the stuff is very very toxic to your liver.

Noel called the 24-hour nurse and they were useless, didn't do any of the followup they said they would do. Finally after a few phone calls, we called the neurologist and she told me to up the gabapentin to 300mg.

I did that and was almost immediately not in so much pain any more. The gabapentin is messing with my vision (everything is blurry) and it makes me so sad I want to cry all the time (maybe not such a great drug for somebody who is chronically depressed), but it is saving my life in terms of pain relief.

The pain ebbs and flows. Tonight I spent an hour on the treadmill just walking because my left shoulder felt stiff and achy and sometimes a little exercise helps with that kind of thing, but it just got worse. I've been riding busses to work and around town because it's still not a good idea for me to drive (and also because I don't normally drive to work), and that can either be agony or just fine. Usually the pain is on the right side of my head and neck; today it shifted to the left, though I think that is more of a tension headache thing.

One doctor tells me the pain might start to go away in a week or so. I like that idea. In the meantime my neurologist gave me a gabapentin routine that should help manage the pain without having to take acetaminophen every four hours (which really messes with the sleep schedule). I slept through the night last night, which was very nice.


And just to end this post on a high note, this is one of my brain scans that looks all freaky and weird. We have a lot of empty space in our heads. Also, check out my weird ears.

The food. Oh, god, the food.

Look, I am not a picky eater. My parents raised me to at least try everything. There are some foods I don't like, but if you place them in front of me I will eat them because that is polite. There are some foods I don't eat because they make me stop breathing (conventionally raised poultry, and oddly, melons). But I'll give just about anything a go.

meatloaf and gravy

Well, OK, almost anything.

This is basically what every meal at the hospital was like. I was on a diet called "Mechanical Ground" which meant every meal was chopped up. That's fine -- because of the two IVs I couldn't use my left hand at all for eating, so it was OK to have food I could eat basically with a spoon.

But this.

Ground up mystery meat -- presumably some unspeakable part of a cow -- "gravy" in a little plastic container. The potatoes were starchy and bland, but I actually ate all of those. They gave me a dinner roll, too, but it was stale and dry and not really very easy to eat.

I had many discussions with the dietitian and occupational therapist (who was there to make sure I could eat larger chunks of food without choking to death) about my food and why I wasn't eating. The best was one in which I tried to explain that I don't drink hot liquids of any kind -- no tea, no coffee. This was very confusing.



"Herbal tea?"


"I could give you Sprite."

"I really don't drink sodas, either."

"How about milk?"

"I don't drink milk, either. I usually only drink water."

"We can give you bottled water."

"OK, but I'm fine with tap water."

This conversation resulted in my getting put on a no-dairy diet. And since I just don't eat margarine (the oily texture bothers me), that meant I couldn't eat half of what was on my plate, oh, yay.

I was inordinately excited by the day when blueberry pancakes were on the menu. Until I took one bite:


Regular pancake rolled around blueberry pie filling. Yes, this was actually passed off as food. That was as much as I could eat of that breakfast.

There were a few things I knew I could eat: any juice, the fruit cups (a little too sweet, but I was hardly eating anything so a bowl of sugar was fine), the vegetables on the plate. They started giving me extra juice. I tried to explain to them multiple times that I just don't eat like this at all at home and I didn't know how to cope with it. The meat thing always smelled like poop or vomit to me. I already had limited appetite, but I had real struggles with this food.

My real relief was breakfast, when they invariably brought me scrambled eggs (and dry toast! Because no dairy!). I tried their margarine for a couple days but it still kind of grossed me out, especially on white bread. There was one day we had a waffle and that was pretty exciting; I finally gave up trying to eat like an adult and ate it with my hand. It was not inedible.

It took two days to correct the "no dairy diet" mistake on my chart. Two days of me trying and trying to explain that no, I eat dairy just fine, I just don't drink milk as a liquid because all I drink is water. I think they thought I must be a space alien.


The last day I was there, they switched me from the Mechanical Ground diet to a normal diet, to see if that would help (it did not; the meat still smelled inedible, though I valiantly gave it a try every time). And look! They gave me real butter! That was pretty nice.

The last couple days they also added on a diet shake from Ensure that would fill in calories. It was pretty horrible, like drinking fruity cold chicken soup, but I drank it because I could make it stay down.

The last day I was there they said I hadn't thrown up in days and they almost had my TP/INR levels (blood thinner) where they wanted them, and they were trying to get permission to release me. I'd had a couple days of "maybe you'll go home today!" disappointments already, so I was very motivated. Then they brought me my lunch and I felt the horrible urge to throw up like I hadn't for days. I have never before in my life been able to stop that urge, but sheer willpower and the knowledge that dinner would be just as bad were strong motivators. I made it.

I lost three pounds in the hospital. I stuffed myself stupid the first couple days of being home, I was so hungry. When we walked into the house I was torn between wanting to eat ANYTHING FOOD and wanting a shower desperately. A little food won out.

Feeding patients like this cannot be good for patient outcomes. We are right in the middle of the best food culture in the country. Fresh, delicious produce is available year-round. There is no need to feed patients reheated ground meat patties, except that of course cutting back budgets in the kitchen is easy to do, and who's going to notice? The insurance companies don't care -- though they should, since I think I stayed in the hospital extra days because of the food -- and the patients aren't usually paying, so they get no say.

My food was limited because I wasn't eating, so they didn't want me eating outside food and confusing things. But I wasn't eating because I literally could not eat that food. And I am not, as mentioned, a picky eater. I tried to eat everything. Every day I would eat as many mouthfuls of that horrible meat concoction as possible. When your patients are having to live on dietary supplement shakes, you really need to fix your hospital meal program.

The first few days in the hospital were kind of the same: every couple of hours they came to take my vital signs (again: blood pressure, blood oxygen, temperature). Every four hours they came to take blood to test various levels (I haven't gotten those records yet). They initially said they would be testing my blood sugars but they stopped that pretty fast since I don't have diabetes and am not pre-diabetic even though it seems like everybody thinks I should be.

The view from my bed

The room was grim. I really understood why the modern patient rooms every new hospital I've worked on were so important. Looking up at this TV every day (I really don't watch TV, so I only once accidentally turned it on), it was depressing. As if I needed that.

What I needed to do was get up and walk and sit upright.

Walking was interesting because it was as if I were super super drunk, but with all my usual cognitive skills (quite unlike being actually drunk). The first time I walked down the hallway, I was being very careful about wobbling and we only went as far as the end of the corridor (about 20 feet). That time the nurse was holding the back of my gown closed with her hand and honestly? I wanted to shorten the walk because I found that too embarrassing. I could easily have walked much further.

The second time I went for a walk, the next day, they gave me a second gown to cover up my behind. By that point I had asked Noel to bring me some pajama pants (he'd already brought me some blessed changes of underpants). They arrived shortly after that walk and then I felt like I could go anywhere. I wanted to try running, actually. Even at my schlumpiest I try to fit in a brisk 20-minute walk every day.

This is what I saw when I looked up

From my room, right outside the nurses' station, I heard all the status reports and patient gossip. Nobody believed I'd had a stroke. I was in such good shape. In contrast, a 21-year-old came in with a massive stroke on my third day and was essentially immobile. Most of my fellow ward occupants were lying still in their beds. I was sitting up most of the day, awake and aware. The therapists told me a couple times that the more I sat up the better I would do, so I made a very serious effort at it.

I had my ebook reader with me (Noel brought me that the first day), but I found it hard to read because of the spinning room. I felt mildly carsick from reading, so I didn't get as much reading done as I would have liked. I had less patience for bad writing because it felt like reading was more precious.

Most of the nurses were great. They really cared about taking care of people and they wanted to help me stay clean and get around. I was really dependent on the nurses because I was attached to this IV pump full of Heparin, a blood thinner, and also because when I was lying down I was supposed to be wearing this leg compression system that prevents blood clots in your legs.

The alternating pressure of the leg system was actually very comforting. It felt a lot like Goldie lying on my legs at night, and I missed the animals intensely, so it helped. However, if I needed to go to the bathroom I had to be disconnected from that leg squeezy, my pump had to be unplugged, and I had to roll into the bathroom.

I was allowed to use the toilet in privacy (the very first day they discussed having me on a bedpan but all concerned decided that sucked and I had one bedside toilet experience). They were measuring and examining my pee, so I had to pee into something they called a "hat" -- a little plastic pan. I learned that I pee about 500 ml at a time. Useful to know, I guess?

Night and day kind of blended together. I slept when I could, which was mostly in the mornings when the morning nurse came on. I had one nurse, one horrible, horrible nurse, who actually ignored my use of the call button all night. I don't know what he was doing or where he was, but eventually I decided to just disconnect my leg thing and unplug Mr Pumpy all on my own, and go to the bathroom.

In the morning of that day the morning nurse got upset at me, and then really, really angry at the night nurse when I told her I waited an hour to be taken to the bathroom and I really could not hold it any longer. Twice.

But for the most part, people were wonderful to me. I just really really wanted to go home.

Mr Pumpy

Throughout my stay, we have problems with my IV pump. I called him Mr Pumpy, and he did a lot of yelling. He had one beep he did when his battery was bad -- my first pump was replaced with another because the battery just could not hold a charge, which was an issue when I needed to go to the bathroom or for a walk. He had another, longer and more complicated beep that he did when the IV bag was low. Or when he thought it was low. Somebody had to come and reassure him or whatever you do to make the beeping stop.

And look, I understand. I was easily the least critical patient on the ward and I'd rather the nurses were taking care of the guy who can't breathe next door, or dealing with the respirator problems for the lady down the hall. I don't demand prompt service or snappy responses, but Mr Pumpy would start beeping at 2 or 3am every day, and sometimes I would lie there in the dark listening to him for an hour or so, not able to sleep because the beeping was so loud and right next to me.

So mostly I slept in the mornings, and mostly the morning nurse was trying to get me to wake up and get moving because up and moving is good for recovery, and she didn't realize I'd been awake most of the night between sitting up in bed needing to pee and lying in bed listening to Mr Pumpy sing the song of his people.

In my next installment: the food. And how I learned to control my gag reflex for survival.

Let me tell you about my grandfather.

My grandfather was a violinist and trombonist. He was in the band in World War II, which is how badass a musician he was. I'm not sure whether we actually sent musicians in against Hitler but it seems like it would be pretty effective, given my experience of one year living near a marching band practise field. He worked as a carpenter and built violins in his spare time at a little table in the basement.

When my grandfather was 52, he was driving along the street and suddenly veered off the road, driving into the side of a drug store. The guy behind him stopped to see if he was OK and my grandfather was already dead; he'd had a stroke. This was the year before I was born.

Having a stroke is a lot about luck. You should know the symptoms. If you get any of these, you should call 911.

Common stroke symptoms seen in both men and women:

  • Sudden numbness or weakness of face, arm or leg -- especially on one side of the body

  • Sudden confusion, trouble speaking or understanding

  • Sudden trouble seeing in one or both eyes

  • Sudden trouble walking, dizziness, loss of balance or coordination

  • Sudden severe headache with no known cause

Women may report unique stroke symptoms:

  • sudden face and limb pain

  • sudden hiccups

  • sudden nausea

  • sudden general weakness

  • sudden chest pain

  • sudden shortness of breath

  • sudden palpitations

(This list and a lot of other information are available at the National Stroke Association web site.)

Sometimes it's hard to tell if they really are what you think it might be, but having any two of these symptoms is a definite 911 situation.

But it's luck. The morning of my stroke I felt lightheaded, but that was easily explained because I hadn't eaten before working out. I felt weakness, but that was also obviously because of not having worked out for a while. I didn't feel the one-sided weakness that would have twigged me to a stroke. When the dizziness and nausea came on, I connected them more with the migraines my friends have than a stroke. I was even briefly worried that I'd developed a sudden severe allergy to banana bread (I adore banana bread and this would have been worse than a stroke, and I am not exaggerating).

Luck is that Noel was home and was an impartial judge who decided we should go to the ER. Luck is that I realized that an ER might have strong drugs for a migraine so I went along with it. Luck is that the really bad part of things happened while I was under observation. Time is brain cells in a stroke, and the response to my stroke took under five minutes.

One of the things that has been most interesting to me about this stroke is how people react to it.

Everybody wants to know WHY it happened, what I did that made it happen. What it was about me that made this horrible thing happen.

This is what caused my stroke: chance. Probably genetics.

By chance I had the kind of arteries that delaminate spontaneously. There's no evidence that I did anything to cause this; I don't do extreme sports or get chiropractic work or try to lift heavy things with my head, ever. Those are the risk factors for my type of stroke, and none of them fit me.

(As a side note, don't ever let a chiropractor touch your neck. I'm not joking when I say that EVERY doctor told me this could result in instant death if you have my kind of arteries, and you cannot know if you do or not.)

I don't smoke, I'm not diabetic. The classic young woman stroke is from smoking and taking birth control pills, but that doesn't quite fit me, either (I do take birth control pills).

There's a minor additional risk of stroke from taking thyroid medications (which I have taken for almost seven years now since I got Hashimoto's Thyroiditis in 2006) and birth control pills. My GP and I had a serious conversation about why I take those pills and what we can do to remove that risk factor, but nobody thinks that caused the stroke. The stroke was caused by just having been built slightly wrong. Lots of people are built like this. It may run in my family.

My grandfather had a stroke on the same artery, on the same part of the brain. I never knew him, but his death was part of my life; my middle name is from him, my brother's name is from him. I have on my bookcase a violin he was making when he died, and his bow. And now we have had the same stroke. He was unlucky, I was lucky. In the years between our strokes, medical understanding and treatment of the condition changed completely. Had he survived, he would probably have had major deficits; I'm walking and talking and everything works except my balance.

It is sometimes hard to come to grips with random chance. I learned all about that when I got Hashimoto's and I wanted to know WHY WHY WHY. There is no why. The why is that we are human beings who are all put together in a certain way and sometimes things go wrong. We get sick, things fall on us, we trip and fall into deep holes. Some of those things might have been preventable. Sometimes hindsight is amazing -- ask me how I'm feeling about not pushing for an MRI of my shoulder a year ago.

But things happen, things happen to us when we aren't expecting them, sometimes they are unusual and confusing.

Can you avoid a stroke? Don't smoke, especially not if you take birth control pills. Exercise as much as possible. If you're diabetic be a good patient. Don't eat non-food edible items like fast food or packaged processed food items that play havoc with your cholesterol and blood pressure. You still might get a stroke. I'm not saying doing these preventative things aren't worth it -- they are basically how I live my life (well, except I'm not diabetic even though it seems to have plowed through my family with impunity). What I'm saying is that you can do your best and still have bad luck.

My mother and I talked about my grandfather's death, 43 years ago. She thought that if he'd survived his stroke and lost his ability to play music -- and he had a cerebellar stroke so that was a possibility -- he would have died inside. Stroke care was very different back then, and in many cases you might have been better off just dying. Now I'm looking at going back to work, part time, two weeks after my stroke.

Sometimes you get unlucky and have a stroke. Sometimes you get incredibly lucky.

So on Day One, I basically set a personal record for barfing. Yay me. My goal when I started the day on Day Two was to not throw up at all. Not throwing up was one of the two steps they gave me to leaving the hospital, and I wanted to leave pretty much as soon as I realized there would be no more showers.

In the morning my roommate was moved to another unit -- her condition had improved enough. That was good because not only did her family stay with her until really late (around 2am), but she spent most of the night crying. I spent most of the night having my vitals (blood pressure, blood oxygen, and temperature) taken, and giving up regular vials of blood as well. Neither of us slept very well.

I had a decent breakfast of scrambled eggs and toast. It felt like a minor victory to eat, and the eggs were not great but they were fine. I didn't feel sick at all. A little later a physical therapist came by and had me sit up in bed, then, in an extremely revealing moment, had me walk down the hallway. Revealing because I was wearing an IV gown and a cardiac monitor and pretty much the whole thing wanted to slip off of me, and there was not that much underneath. This was a little inhibiting for me, I admit. I took it as a sign that I was getting better that I was a little embarrassed at flashing half the ward.

They want to get you moving as soon as possible so the natural plasticity in the brain will take over and start rebuilding connections and relearning old skills. Anything that you consciously or unconsciously decide you "lost" and don't try to regain, that is lost to you forever, and that can include things like pooping, so it makes sense to get up and about as soon as possible. There's no lying in bed just resting up after a stroke, unless that's the level of activity you're aspiring to.

Anyway, we took a quick turn down the hallway about 20 feet, which was the third most disorienting walk of my life (first was ER room to bathroom, second was trying to get down the hallway to the kitchen; I keep these neatly ranked in my head because that kind of order helps me).

That was about all I was up for, but they suggested I try sitting up as much as possible that day; I had been lying down which helps keep the world from spinning but again, training early and often was key.

I also was to turn my head from side to side and up and down as much as possible. At first this was horrifying and disorienting, but it did get better.

Just around noon my neurologist sailed in. She's amazing. First of all, I love doctors who talk to you like you're smart, and she did. She explained what had happened in my stroke super clearly, and helped me understand it.

I'll talk later about risk factors and that sort of thing. Right now let me tell you what she told me.

Here's your torso

So here's your torso. I left out all the crazy internal organs that get in everybody's way so you can see that there's a spine that runs up to the brain, and the heart is kind of right in front of that. You need all these parts. None are strictly speaking optional.

I think we all know that.

Where is the cerebellum

Where the spine ends is a part of the brain called the cerebellum. This controls our most basic functions like walking, breathing, swallowing, and probably making the middle finger at taxi drivers although that has not been medically confirmed.

We lay people call that the brain stem because we like to think brains are like plants. Or something. Hey, look how good an ear I drew on the right side there. I did that freehand in Photoshop.

Vertebral arteries

There are two blood vessels that go from the heart right up the spine (actually wrapped inside of the edge bits of the spine) to feed the cerebellum. One on the right, one on the left. These are called the vertebral arteries and are pretty small compared to the more famous neck blood vessels like the carotid or the jugular. Not pictured for clarity because nobody needs to know any more about those guys.

Anyway, working around this system are obviously a bunch of blood vessels that carry blood everywhere and help things work out. Your brain needs blood all the time but the catch is not TOO much blood, like if a huge pile of blood gets in your brain it does not care for that at all.

There are basically two kinds of strokes: a blood clot gets lodged in the brain and cuts off blood to part of the brain that dies from that, OR a blood vessel bursts and floods the brain with blood and the brain dies from that.

This goes to show that we were either designed by an idiot or a lot of this sort of thing evolved over time and with the help of pure dumb luck and it's kind of surprising anybody can do anything at all.


Neither of these is exactly what happened with my stroke. I had an arterial dissection -- that's when the inner lining of the artery delaminates from the outer "skin" of the artery.

Normal artery

This is that a normal artery kind of looks like, with a lot of creative license. There's a kind of skin part, then a lining called the lumen that's where doctors give you shit about eating bacon because it may cause buildup in arterial plaque. Normal people have a lumen, healthy people have one, it's part of the whole having blood vessels thing. If you've ever done any plumbing work you know pipes get a lumen, too, and it's only a problem when the lumen gets so thick that it clogs the pipes.


Or, well, if this happens.

Some people, maybe some people we know who are writing this post, have bad arteries that can delaminate from the lumen. In my case the lumen delaminated from near my heart all the way to the end of the vertebral artery on the right side of my body. This was actually working kind of OK because the left side had picked up the slack and was pumping more blood in there. Lucky me, number one.

Based on my medical history, this delamination had probably been going on for 1-2 years. I had this pain in my left shoulder. I saw doctors and physical therapists about it and everybody agreed it was my excessive mousing and I should cut that out. I even used a couple little pieces of software to remind myself to take breaks and stretch my shoulder out, but it kept coming back.

Turns out, stretching and warm compresses do not help with arterial delamination all that much. And the weights I was using to try to get the shoulder stronger were accelerating the process.

So, by the time I hit the emergency room on the 13th, this artery was fully delaminated and probably mostly occluded (blocked).

My stroke

Then I had a teeny tiny stroke when a blood clot formed behind the smushed-up lumen and popped right into my cerebellum. Boom, stroke. Luckily for me, that happened while I was in the ER.

The cerebellum, you remember that, right? Basic motor functions? When I was learning brain parts in high school I thought of it as anything a lizard could do that I could also do. So breathing, swallowing, so on. After I was admitted they spent a whole day checking me for these basic motor functions because a stroke in the cerebellum could mess you right up.

Have I mentioned how lucky I was?

Anyway, the stroke didn't affect any other part of my brain. But I think, given that most people don't know how very specific strokes can be, that any future forgetfulness or stupid thing I do I'm going to blame on this stroke. Even though the only thing I can really blame on the stroke is that I walk like a drunk now.

So, end of part 2.

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