Migraine Update

For those of you following the long saga that is my migraines, I thought I'd give you an update. Today I met with my new neurologist and things are looking up. (Lots of potentially boring details ahead! Feel free to skip this post if you don't care.)

First, the clinic was good. I got checked in and then got called back by a nurse who asked if I'd turned in my paperwork, and that was it. No weight check, no blood pressure check, no med check. Everything was done by the doctor. Very impressive. My only qualm with the clinic is that the waiting room is not at all friendly for photophobic migraineurs. Lots of windows and lights, with no dark places to hide.

The neurologist was great. She is the first doctor I've met with who's acknowledged that she has migraines. She was impressed that I'd brought her headache diaries from last summer and from March through today of this year as well and had looked over them before coming in to meet me. She thinks that my problem is rebounding off my medications...i.e. that I am taking too much of my abortive medication which makes my headaches more resistant to it and then creates more headaches. (That's kindof a simple description of rebound, at least, similar to antibiotic resistance, in a way.) So she wants me to lay off my abortive of choice, which is currently eletriptan (relpax). Then she upped the dosage of my preventative medication, topamirate, but that's a gradual increase, to ease me up to 200mg from 100mg. Hopefully that will kick in in 4-6 weeks, but it will bring me up to the maximum dose for migraine patients (still far below the dosage given to prevent seizures, but more on that some other time). In the mean time, to keep my head calm, I'm taking dexamethasone which is a steroid/anti inflammatory. It should keep the my blood vessels in my head small, as opposed to large, as they are when I have a headache. Side effects include being "wired" or "bitchy" (quotes were my docs). So the idea is that temporarily, the steroid will keep my head in check while the topamax kicks in...then the topamax will keep doing it's job and I'll be better off.

Then, once my migraines are down to isolated attacks (i.e. not daily), we can start isolating incidents and finding triggers, which my neurologist says she really enjoys doing. This is something that should lower the number of migraines even more and/or put them within my control. So right now, I know that I can choose to drink a coke, but I'll get a migraine. So there's no one saying that I can't drink a coke, but I know I'll pay for it. But I don't know what many of my triggers are, so I'm looking forward to discovering them, so I don't randomly get floored by attacks right and left. One of her guesses as to why I've been having a rough month of it, other than the rebound, is that I'm affected by barometric pressure, and we've been having a lot of storms lately.

Another problem I've been having is that I've been having trouble sleeping because of my pain levels. My solution, unendorsed until recently, is to take half a benadryl in order to kick the pain (and any nausea) and sleep very thoroughly. The neurologist wanted me to move to melatonin for regulating my sleep (especially when on the steroids) instead of benadryl, for now, so that's another switch as well.

I have another appointment in 6 week, this time with a nurse practitioner, but someone who the doctor works with and someone who specializes in headaches as well. This is also an improvement over my last doc who said he'd see me 4 months later after changing all my meds.

Some of you may read this and think that it sounds like a lot of drugs, and I suppose it is...but I was already taking 11 pills a day. So a total of 4 more isn't that many... especially when 8 of them will all be the same drug, just distributed throughout the day.

I'm looking forward to this new regimen and found that today was better than yesterday, so hopefully that trend will continue. Even more importantly, I finally feel like I have a medical team that is willing to work with me on my terms, so I'm ecstatic! I'll hopefully have a good update in a few weeks.

Migraine Reflection

I was thinking about this tonight as a set of massive thunderstorms rolled through towns. What do I miss about my life pre-2006 diagnosis of migraines? And, the opposite question, what do I like more about my life?

(Neither list is ordered or complete)

First, the negatives -- what do I miss about "normal life"?

1) I miss being able to watch thunder & lightning storms without thinking that the lightning is going to look like strobe lights to my brain and my brain is going to react by going into migraine mode.

2) I miss being able to drink a Coke or Mt. Dew now and then. And to not have to worry about whether or not my root beer has caffeine in it, because if it does, I'll pay later.

3) I miss being able to hang out with friends and drink wine. Or go to happy hour and get a drink. I didn't drink often, but this drinking water ALL the time because I have to (or else!) is frustrating. It's not a choice any more, it's a demand.

4) I miss being able to ride my bike when I want to. This sounds weird, but in the past two weeks I've only been able to commute by bike once, because I'm afraid that my dizziness is going to be to much and I'm not willing to risk it.

The positives -- what I've learned (or has been reinforced) from my headaches:

1) My family is incredibly supportive of me. They truly want the best for me. This is the only thing they worry about in my life, which both amuses me and frightens me.

2) My boyfriend is there for me. Whether it's driving me to urgent care, getting medicine from the store late at night, or just putting up with me, he's done it all. Today he decided we should go walk around a forest for two hours because it's what the Japanese do to improve their health. And, despite my misgivings, he managed to get me to walk around, in the rain and humidity, with bugs for over 1.5 hours (when HE chose to go back to the car).

3) I know what a good doctor looks like. Before my migraines I'd go to whatever doctor I could get an appointment with and I couldn't tell you much of who was good and who was bad. Now I can. And while I'm not that great at it yet, I'm working at learning how to advocate for my own care.

4) I've learned that I have excellent health insurance and great hospitals and clinics. Apparently lots of clinics don't treat someone with a migraine with dignity. I have never been treated with anything less. Similarly, my health insurance is simply amazing. I had no clue how well I was treated until this year.

5) I've started reading an interesting set of literature to learn about my health. This involves medical journal articles, web sites, and real paper books. Currently I am reading All in My Head by Paula Kamen. It's an interesting mix of autobiography and history of headaches and headache treatments. Hopefully I'll write more about my findings later this week. Through these readings I'm learning fascinating facts and tidbits about my brain and the world of headaches in general.

6) Lastly, I've gained a new appreciation for the non migraine days I have. If I wake up feeling good, it isn't just a good day, it is an EXCELLENT day. All of a sudden I am productive, I can think, and I am normal. These days are fantastic. It makes me smile just thinking that tomorrow may be one of them.

Common Commentators

A new comic strip by myself and Simon K. Click (and then click again) to enlarge.

For more soccer/football fun, check out Simon's blog post on the England v. Germany game: Tragicomic Opera

Pieces for John Courter's Memorial

For those of us who can't be there today, here are two of the three pieces that will be sung at John Courter's Memorial Service at Union Church today. Both feature John Courter on the organ and are sung by the Berea College Concert Choir, directed by Steve Bolster. The Agnus Dei is by Duruflé was recorded Fall 2002 at Berea Baptist Church. Wondrous Cross is arranged by Gilbert M. Martin and was recorded Summer 2002 during the Italy/Switzerland tour.

Agnus Dei
Wondrous Cross (Updated! Full version.)

Edit 2: The version of Wondrous Cross is now complete. Let me know if you have other problems with it.

Edit: Thanks to Kristina who pointed out that this upload of Wondrous Cross cuts out right near the end. I'll check my other versions tonight when I get home and hope to have an updated version (with the full piece) posted by midnight.

In Memoriam: John Courter

There are posts we want to write, posts we don't want to write, and posts we feel we must write. This is one that I do not want to write, but feel I should. I've known it was coming for a while, imminently for the past few weeks, and yet, I ignored it. I first got word that John Courter had died yesterday (Monday) morning via facebook. The news spread fast and I did not write a status message. I felt that it was not enough. I wanted to do more. And yesterday night I felt I could not write a blog post, but tonight I am sitting here in front of my computer, half of my screen filled with blogger.com, the other half with this picture.

Taken by a fellow choir member in Europe

I saw this picture and tears began running down my face. I had to stop and get the kleenex box, for all of us who knew him, this is one of the images we have of him. He was, to the core, a musician. Give him an instrument, he would play, and gorgeously. I first moved to Berea in 1998 and knew him primarily as our church organist, albeit not a typical one. Union Church was the first place I'd ever heard improvisations like the ones John did. (In the context of Union Church, he is John to me...in the context of Berea College, he is Mr. Courter.) Needing no music, he could weave between hymns, fill gaps in the service, and make music like no one I had ever heard in person. He would occasionally play the Widor Tocatta and had it printed, each sheet on a 3" x 4" sheet of paper, all of the papers stuck together on a large piece of cardboard. Asked about it one time, he explained that it wasn't like he'd ACTUALLY be able to read it or follow along, but it felt like a good backup. Those were the smallest pieces of music we'd ever seen.

In the context of the church choir, which I was in (and out of) for a number of years, John provided an excellent ear and guidance. He was amused by clever lyrics combined with smart harmonies and wasn't afraid to turn a blind eye to (or occasionally join) the disruptions of the bass section. Seeing him in this setting and in a concert or two, helped me change my goals for the future. I realized that I didn't really like band nearly as much as choir and that the Berea College Concert Choir was a choir I'd want to be in if I went to Berea.

And, of course, I went to Berea...but before I got into the choir (my 2nd semester), I took a class on hymnody from Mr. Courter and Steve Bolster (I was still in high school). For two hours every day, we'd meet and the first hour would be lecture, the second, singing. I learned more about the Genevan Psalter in those four weeks than most people will know in their entire lives! Then when I started college, I worked in the Music Department as the Assistant to Dr. B/Steve. (Again the multiple names from living in the town and going to the college.) Mr. Courter rarely came into the student office, but I recall him being one of the most mild mannered professors there. At the same time, I didn't dare take piano lessons from him, because he scared me a bit too much. Kindof the same logic that I wouldn't take piano or voice lessons from my current choir director/organist....then he might find out just how bad I was! I did enjoy hearing tales of my friend J. who took organ and carillon lessons, however.

Second semester, I got into choir, and the choir went to Italy & Switzerland for tour. We left the day after graduation (Memorial Day) and while we were gone they were going to be moving the music department, so Mr. Courter had spent most of the past week attempting to pack up decades worth of carefully stacked music. He always knew where everything was, but that wouldn't have been clear to a bystander! He came to the bus straight from packing his last box. In Italy, we saw a new side of Mr. Courter. This was the side that didn't back down to the monk at the Vatican who tried to push him off the bench so that he (the monk) could play the postlude. Mr. Courter was not having any of that. He was Catholic, he was at St. Peter's...he was playing the postlude. And play he did. I don't recall the piece, but I recall that it was a hot summer day in Rome, as they often are, and I wanted to lie on the marble floor to be able to feel every single vibration of the music as it rippled across the massive cathedral. (I restrained myself.) Then, in Siena, in another duomo where bare shoulders, bare toes, and knees were verboten, we had 5 minutes to change for the concert. All of us were led to a room to the side of the main hall and told to change. So we did. Several choir members remain scarred for life from that experience.

One thing that is not evident, from my flipping through my Italy photo album, is that John Courter was immensely respected among his peers. Not just at Berea, but in the wider musical world. So much so, that my dad called to tell me a few weeks ago the Guild of Carillonneurs in North America, when they learned that John was dying, decided to do a concert of his works in honor of him at their summer meeting. Search for his name on YouTube and you'll find videos of him playing postludes at Union Church, but also of people playing HIS compositions in the US and the Netherlands. I'm talking to my brother right now on IM and we're discussing how on Thursday at 3pm, Union Church will be bursting to the seams with people coming to honor John's life and work. He would have turned bright red at this notion, but he was deeply loved by his community. I will not be there to sing the three pieces for massed choir that he had chosen, though I will play them on my laptop while the service is live. I do not think I could sing though my tears, so perhaps it is best to have a large choir. I have delegated my voice (though not notes) to my parents, but I know many who are closer, who will be in attendance.

As with much sadness, there is good that comes of this. John is no longer suffering from cancer, which he had been doing for several years. And he has left behind a throng of students, music and non-music, who he has influenced. For I look at the status messages of those I am friends with on facebook who have taken the time to write something and I figure that the number of students he has impacted, over his 39 year career at Berea, must be at least 1000 times that. As for me, personally, I think of him when I hear the Berea graduation marches, the Widor Tocatta, or any arrangement of Wondrous Cross. I just hope they have a carillon in heaven, otherwise they'll need to get building.

Context of previous post

Just realized that my last post was very context free...so here's a stab at some context. I'm at a camp this week called CSST or the 2010 Summer Research Institute for the Science of Socio-Technical Systems. I'll hopefully get a chance to write more about it later, but it's a great coming together of junior and senior researchers from all across fields of sociotechnical systems. So I don't usually hang out or talk with people from management and sociology backgrounds about my research, but this was a venue in which to do so. It has been an amazing experience so far (we leave tomorrow), but one of the interesting parts has been the unstructured social time every day. We documented yesterday's time and turned it into a random, in joke filled comic strip. Having this software makes me think that maybe I'll mess with this more as a form of storytelling so maybe someday you non-CSST folks will understand what the heck is going on (in comic book form).

PS. Apologies to my mother for the language. I was quoting others...Professionally. Also it was a technical term, so it's ok :)

Our Sociotechnical Outing

Migranes: Controlling My Life?

Last weekend I had an attack of migraines. I woke up on Friday at 6:30am with a migraine. I had to lecture that day as well as finish writing a CHI madness video, finish writing a lecture, and do other work. Basically I had a full day of work. I left the house at 9:30am (after getting up at 8am, trying to sleep off the migraine) and got home at 7:45pm. In between I also went to a concert of the North Central ACDA convention because I couldn’t bear to not see the the St. Olaf Choir and the tail end of the Luther Norsemen. So I took excedrin. Because it was too late for the imitrex, the ibuprofin wasn’t working, and I didn’t have the time or energy for the urgent care.

Excedrin works not because it’s tylenol and asprin, but because it has caffeine. BUT caffeine is also a trigger. In the short term, caffeine constricts blood vessels. However because it’s a trigger this for me means that two days later, I get another migraine. So I took three excedrin to make it through Friday. Then I took a benedryl to be able to sleep that night. I knew I was taking a risk and I’d likely get another migraine on Sunday.

Sunday I woke up and felt a migraine coming on. I took one excedrin, ibuprofin, imitrex, and omdansetron. Then I went to choir. I was feeling dizzy, and had mild nausea. I also was overheated and couldn’t concentrate...basically all the neurological non-pain migraine symptoms that I get. But thankfully, not the pain. So I went home and took a one hour nap. Only it lasted for four hours, because my body was that exhausted.

My brains felt kindof like these dehydrated apple chips (even after my nap)

When I woke up I had to write a lecture, a lab, and a homework assignment. But my brains were still a little scrambled from the medicine. So it was rough. This got me thinking though. This is the first time since I’ve gotten headaches that I have been in control and have gotten out of control because of my life. That is, my medicines work well. I haven’t had an “urgent care” migraine in months. I’m doing well overall. But I had to give my lecture. I had to write my assignment. I couldn’t get out of it. I can’t turn my teaching work in late. I can’t work from home, aka take a day off and sleep my migraine off anymore. Even on the days I don’t teach, I’m frantically keeping up with my research, going to meetings, or the like. So what do I do? I take pills that give me migraines. Because I can’t think of any other alternatives.

So that Sunday I ended up calling my parents. They’re quite worried about my headaches, rightfully so. And at the end of the conversation my dad said, "Maybe you need to start thinking about different sorts of jobs." Sure I could work in academia, but what is the potential cost. I've been planning this my entire life, but the more I think about it the more it scares me. Well, I guess the right way of wording it is that multiple things scare me. First and foremost, I am scared by the fact that migraines could control me to the point where they could change my career trajectory. I'm still not sure how I feel about that. It kindof feels like if I were to change it would be because of the headaches and then I'd be letting the headaches win and that would be like letting the terrorists win, which would be bad. Second, I wonder if perhaps the healthy and responsible thing to do would be to change career paths. Not drastically, but perhaps think more about industry than academia. or more about less-teaching intensive academia than I was planning.

Until this point I’ve been planning to apply for jobs at teaching colleges, colleges where the teaching load will likely be 5 or 6 courses (or more?) a year. With that type of course load, I can’t imagine trying to a) get through migraines or b) managing the rebounds that are inevitable if a) works. There are some other factors as well, but this is the sort of thing I’ve been thinking of. It’s also interesting, because I don’t really think much about my headaches as a hinderance, 99% of the time.

I was talking to a colleague a week ago and he was impressed that I managed to get so much quality work done with headaches pervading through my life. Granted most of them aren’t migraines and they are less frequent than in the past, but they are still there. This year I have my headaches under much better control than in the past (believe it or not) but part of the reason for that is topiramate. A side effect of the medicine is tingling, like pins and needles, in my feet. It comes and goes at any time, sitting, walking, whenever, but there is nothing I can do to make it go away. But still, this colleague being impressed surprised me, because I think of myself as normal. I don’t want to make adjustments or lower my standards because of my headaches.

So what will I do? I don’t know. Hopefully this spell will pass and things will continue to improve like they have been. But I think that my headaches will always be in the back of my mind, even if they aren’t pulling the puppet strings.

Music and Meaning

(Written Thursday afternoon) For me, many pieces of music hold distinct memories. Some are unlocked simply by the title, composer, or performer, but some are held within the music itself. Music that I spent hours with in college, but had since forgotten. I’m at the North Central American Choral Director’s Association convention this week and there are lots of concerts involved. This morning the Dordt College Choir sang a song called Ngana by Stephen Leek. On paper, it rang no bells. But then came the first notes, and my voice wanted to cry out. I knew every single note. I don’t know what semester we sang it, but I remember wrestling with it and, subsequently falling in love with it.

This past Sunday, we sang a setting of When I Survey the Wondrous Cross, as the middle hymn. All I could think of was singing it with the choir at Berea. Holding hands with two tenors, surrounding the congregation, and singing my heart out. To me, that song meant concert choir. It meant that I was part of a community and that I was bound to the people next to me, both literally (during the song) and figuratively (during the semester). It also meant that my eyes wouldn’t necessarily be dry at the end of the piece, but that, five years later, if I needed a favor, I could email or call many of those choir members and they would be more than willing to help me out. Because that’s the way choir works. And while I still have some of that in my choir today, it’s a little different. Because in some ways I feel like a church is supposed to be like that anyways.

The Iowa State Singers are singing right now. I first encountered them at the national convention in 2005, and, amusingly, one of their cds is the ONLY overlap between my and Ben’s cd collection. But they just sang a piece by Cyrillus Kreek. In 2004, I went to six King’s Singer’s concerts in Germany and Austria over eight days and 1000 kilometers. The first of these was in Waldsassen, a tiny German town on the Czech border, in a massive cathedral. One of the most wonderful and eerie songs they sang in their religious program was Onnis on inimene by Cyrillus Kreek. Kreek’s music was getting slightly more well known, but I could only find one group that had recorded Onnis. To remember how the haunting Alleluias went, I wrote the notes in their relationships to each other, in my journal. That was my introduction to Cyrillus Kreek. A massive Eastern European Cathedral on spring break, sung by six English men. (For fun you can also imagine I was surrounded by Germans, I don’t speak German, no one clapped during the concert, and I had arrived two minutes before the concert started, after ten hours of travel.) It’s amazing, in some ways, that these college students from Iowa can transport me halfway around the world and six years back in time, but they can. That’s the power of music.

And because you made it this far... here’s a video clip for you of the Real Group. Because I am kindof obsessed with them now. And I was contemplating starting my own Swedish Acapella Jazz Group. But then I remembered I wasn’t Swedish, so there was another failed life plan. Enjoy!

P.S. ACDA conventions are more fun as an interloper (i.e. non choral-director) with Kate and Keith to stalk famous people with hang out with.

Musings on Science and Religion

I've been thinking lately about science and religion. This came up first because of my church. My church has been working over the past two years on it's strategic plan for 2010-2015 and it was mailed out a few weeks ago (to be presented this coming Sunday). I was flipping through it at breakfast a few days ago because I'm not allowed to be on my computer until after breakfast during Lent. I read over the shared values. The first are what you'd expect: Our theology, The individual, spirituality and congregationalism, Our life in community, Inclusivity, and Our action in the wider community. All of these are fairly standard in liberal churches. The next also wasn't that surprising: Celebration of the Arts as Sacred. This especially wasn't surprising given that all the Lenten services are revolving around paintings and poems and Palm Sunday will also have an interpretive dance. (Last Sunday's sermon on Chagall's The Sacrifice of Isaac 1965 was fascinating.) But then comes the final value: Affiliation of Compatibility between Science, the Intellect, and the Spirit.

Here's what it says in more detail:

We celebrate the gifts of science and the intellect as well as those of the spirit, and we affirm that science and religious faith are complementary and not in conflict with one another. We honor our Congregational heritage that values life-long education and intellectual inquiry in all facets of our life together.

I read this and I got excited. I read this and I thought "my church appreciates me for who I am. They recognize my talents and are putting them forward and mentioning them." I'm used to the arts getting called out, and much as I love that, it's just not the same. I've never been in a church that devalues science. I've been blessed to be a part of wonderful congregations that value me and my geeky brain, but that said, none of my congregations before now has explicitly said it out loud to the world- HEY SCIENTISTS, you are welcome here. And that's cool.

So with this on my mind, it's been coming up in other places too. One of the things I've been reading every morning in place of my email is meditations by Madeleine L'Engle. This morning's reading was an excerpt from Camilla about God. Frank is telling Camilla that we need a new God because our current God was designed thousands of years ago. And yet we haven't changed our image of him at all. "And then the Victorians. They tried to put God back in a long white nightgown and whiskers again. That kind of God isn't any good for today. You can't blame Mona for not believing in that kind of God. We need a God for the atomic age." Madeleine said it perfectly.

And then once more it came up. I've been watching the TV show Bones lately and it absolutely fascinates me. One source of conflict between the main leads (female lead Temperance Brennan and male lead Seeley Booth) is that Booth is a practicing Catholic and Brennan believes that religion is a waste of time. Brennan is a forensic anthropologist who believes that only facts can be believed in. In some ways, both are stereotypes of their side of the argument. But this comes to a head in the most recent episode which is centered around some core issues of faith. At the end they have this conversation:

Special Agent Seeley Booth: You know what if feels like to get your faith back?
Dr. Temperance Brennan: When I see effects and I'm unable to discern the cause, my faith in reason and consequence is shaken.
Special Agent Seeley Booth: And then what happens?
Dr. Temperance Brennan: ...Two plus two equals four; I put sugar in my coffee and it tastes sweet; the sun comes up because the world turns. These things are beautiful to me. There are mysteries I will never understand... But, everywhere I look, I see proof that for every effect, there is a corresponding cause, even if I can't see it. I find that reassuring.
Special Agent Seeley Booth: And life is good again.
Dr. Temperance Brennan: [laughs] Life is very good.

And they understand each other enough for that to be good enough, even though for many it would not be.

I'll close with the final thing that's been rolling around in my head regarding science and religion, a prayer. This is a prayer by John Edgerton for Plymouth Congregational Church from November 8,2009. I don't always pay much attention, but when I heard him refer to a variable in an equation I knew it was good. Thanks to John for this great mixture of religion and science in a single prayer.

God of Abraham, you are the light of the world and your people love you. We have tried to be close to your light for generations beyond memory. We have sought to be close to your light in our arts, our science, and we seek your light in times when we are vulnerable and alone. We find comfort in the light of a fire. The orange and yellow and red fingers lick the night air, and our hearts are filled with an ancient peace when we sit near a fire and watch it dance. We find joy in mimicking your light in our paintings. Laying colors on top of colors we emulate the first moments of your creation. trying to bring form and light into being where there had only been a blank canvas. We decise ingenious mechanisms to try and contain and trap shards of your lights. Pressing silver gelatin between panes of spotlessly clean glass we fashion an eye with mechanics and chemistry. In darkened rooms we coas images into appearing, we treasure the photographic records of your light's presence-shadows made permanent. Light of the world, we try in our sciences to define and objectify your light. We have given it other names-lux, photon-these names express only a portion of what your light is, but the finest name we have given to your light is simply: C. The immutable speed, light moves like nothing else in all the universe, and we base our most delicate physical calculations on its constancy. Light does not change and yet it cannot be deifined. When we try to know the most basic form of your light, to isolate its elemental nature and encompass it with our minds, your light winks at us and goes on being two things at the same time. it is the pebble thrown into a pond and also, somehow, the ripples. God of Abraham, you are the light of the world and your people love you.