A lot has happened in 2012. The biggest event being of course my brain surgery, closely followed by our move to Regina. One year ago, I definitely would not have predicted either of these things, and they have changed my life so much. It is almost hard to reflect on the past year as it seems like I've been through three lifetimes in that span. But I will try (and will attempt not to re-use too many photos I have already posted, though some will be repeats).
January gave us snow in Seattle, back when snow and cold weather were rare events in my life.
Jeff in front of our house stepping in my footsteps so as not to disturb the snow too much.
Then February brought spring-like weather:
Kite-flying at Gasworks Park
In early March, I had a new brain bleed, and was not feeling so well. Despite my symptoms, I was able to keep doing my normal activities.
After finishing the Mercer Island half-marathon
In April, all sorts of things were happening. I was waiting on second opinions about surgery, Jeff was negotiating one job offer and waiting on a second. Then when we were at a friend's wedding in Las Vegas, Jeff got his official offer at University of Regina.
At the wedding
In early May, I was sitting on a job offer in Honolulu, interviewing in Regina, and getting more doctors' opinions about surgery. By late May, Jeff and I had both accepted jobs in Regina, and I had a surgery date. We visited Oregon over Memorial Day weekend, as we weren't sure when we'd have another chance.
At the Oregon coast.
June is when things got crazy. We went hiking on June 10th knowing that this would likely be our last northwest hike before moving to the flat prairie, and needing to do something distracting and relaxing.
On the trail to Lake Serene
Then three days later I had surgery, and I woke up feeling like my life had completely changed. Before surgery I was afraid of the unknowns, but after surgery it felt like there were even more unknowns. I was physically pretty bad off, and I had no idea what problems would remain and what would get better.
After surgery
Through June and July my recovery began, and I worked hard. There were many ups and downs, and my initial recovery was emotional, frustrating, and slow, but it also felt good to be making progress. By the end of July I could walk about 400 feet with my walker.
My last PT session before going home
Then in August, I was discharged from the hospital and a week later we moved to Regina. At that time I still needed a wheelchair to get around, even in the house, and I needed help to get dressed, get to the bathroom or shower, or even get from the wheelchair to the couch. With all that, it's no wonder I have a hard time remembering our first weeks in Regina.
At Kiwanis Park, a few blocks from our house
In September, I started settling into my job, and tried to get a feel for my new town, but my memories of that time are still a blur. I started venturing out of the house for short trips with the walker, trying to rebuild my endurance. This picture is a bit misleading, because at that time I wasn't actually walking without someone right there ready to catch me. I was able to stand still on my own long enough for Jeff to get a picture.
At Kinsmen Park, a few blocks from our house in the opposite direction
In October, I started feeling a bit more like myself. At work, I was actually starting to do some work, and by mid-month my walking had improved enough that I was mostly leaving the wheelchair at home and just using the walker. I was finally back in physical therapy, and seeing that it was making a difference. My vision suddenly improved, which was a huge relief, and made a lot of things easier.
Celebrating the return of my vision with a brownie sundae at Dairy Queen
November came with continued physical improvements, more engagement at work, and energy left for occasional fun times.
With Jeff's siblings and their partners
In December I have felt more and more like myself. Walking gets easier and
easier, and while it may still be a while, I can see that one day I will
be walking without assistance again. Jeff and I went to Eugene on
December 21 and returned last night. We enjoyed visiting with friends,
eating some of our favorite foods, and holiday festivities with my
family. I also successfully completed my 5k, and was even much faster
than I predicted, finishing in 1 hour 21 minutes.
Eugene Holiday Hustle 5k at the finish line
And tomorrow starts a whole new year. Of course we can never predict the future, but if I were a betting woman, my money would be on better health and calmer times ahead. Happy New Year and best wishes for 2013!
I am always a big fan of Christmas, and this year I am especially looking forward to it. Going home, seeing my family, visiting friends, and being in a familiar place are all sounding really nice right now. Not that there is anything wrong with things here, just that there really is no place like home for the holidays, and this has been a particularly difficult year!
Jeff and I have finished all our shopping, put up our tree (even though we will be leaving, I've enjoyed having it up for the past two weeks), and baked cookies. For no reason that we could figure out- we followed the recipe, and that recipe has been in use at least since I was a small child- our first batch of cookies turned out so dry that the dough just crumbled. After doing some investigation, I discovered that Canadian all-purpose flour has a higher gluten content and lower moisture content than American all-purpose flour. Who knew? Also, the climate here is much much drier than anywhere on the west coast (where I have previously baked cookies) so that is also likely contributing. I adjusted the recipe slightly for the next batch, and they turned out perfectly. Knowing is half the battle.
Last week was full of medical appointments. I had an evaluation with an occupational therapist (now that I have a routine down with work, PT, and everything else, adding in OT sounds less overwhelming), an appointment with a physiatrist (rehab doctor), and an appointment with a neurosurgeon, in addition to my regular PT appointments. These appointments highlighted a few things for me. First, I have come such a long way in the past 6 months (Thursday was exactly 6 months since surgery). Second, all the doctors are optimistic about my recovery, and in another 6 months it is likely that I will be doing way better than I am now. And third, I have a tendency to "fake good" in my day-to-day life, such that even Jeff doesn't realize how impaired I still am in some areas sometimes. Experts doing evaluations are able to force me to show my deficits, whereas most of the time I am able to hide some of them by using compensations and work-arounds.
There are pros and cons to faking good. On the plus side I am doing my job, keeping an upbeat attitude, and making it so that others are not so uncomfortable being around me. On the downside, very few people in my daily interactions realize how hard I am working or how difficult it is for me to accomplish seemingly simple tasks. And by avoiding doing some of the things that I have the most difficulty with, I don't get practice with them, so they improve more slowly. I am also able to trick myself into thinking I'm doing better than I am sometimes, so this week's appointments were a little rough because there are many neurological tests I still fail, which is discouraging. It's hard sometimes to strike the right balance between acknowledging what's wrong and recognizing what's going well or improving. Too much focus on either side is a problem. I think I generally do a pretty good job walking that line, but it is hugely challenging.
Over Christmas, my plan is to focus more heavily on how much I have improved. My family hasn't seen me in over four months, and they were around to see how bad off I was right after surgery. They will likely be impressed by the difference between then and now, and I will do my best to show off all the positive changes :)
Earlier this week I was extremely annoyed by the fact that some people are just not that smart. And I don't necessarily mean that these people have low IQs, just that they have very narrow views of the world, and assume that there is only one way to think or do things. It is seeming to come up more in this relatively insulated Canadian town than it ever did anywhere on the west coast, which is understandable (most of the people who live here have never lived outside the province), but there are certain people and agencies that I expect to do better, and I get irritated when they don't.
I am running up against a ridiculously annoying problem (series of problems, really) related to my application for licensure/registration as a Psychologist in Saskatchewan. I will not bore you with the details, but the issue is basically that there is a set of rules to follow that only really makes sense for a person fresh out of grad school (especially a person who completed grad school in Saskatchewan). There is another set of rules for psychologists who have previously worked in independent practice somewhere else in Canada. In both cases, it is expected that the applicant is currently seeing clients. The response I got when explaining that I do not fall into either of those two categories, and I am not currently seeing clients, was basically "I don't get it-- you should fall into one of the categories, and be practicing, otherwise why would you be applying for registration?" When I insisted that this was not the case, but that nonetheless I am required to register as a psychologist in order to supervise and teach graduate students in clinical psychology, the response was basically "you must be wrong." After a 30 minute conversation I finally convinced this person that I was right, but she was utterly unsure what to do with me regarding a couple of key issues. The conversation ended without any of my questions being answered.
I was so annoyed! But then I talked to one of my colleagues who explained that no one expects me to figure all this out before I send in my application. I am just expected to do my best, leave things blank if I can't make sense of them, send a cover letter explaining my situation, and expect a phone call later on from the person in charge if she has any questions. Basically, just don't worry about it, someone else will figure it out. Apparently that's how things work in this province for a lot of things-- it is small enough that people can take time to look at things on a case-by-case basis. My annoyance immediately turned to a much kinder, better feeling.
In other news, I am training hard for my upcoming 5k walk. The past few weeks I have been doing a variety of different types of walking with my walker-- fast walks, long walks, easy walks-- similar to what I would do in the past if I was training for a long run. It's paying off-- I seem to improve in some way each time. Today I went for a 1 hour and 45 minute long walk through the university buildings (7 consecutive laps around the whole indoor loop) and it wound up also being a fast walk. Faster than I have ever gone, partly related to a suggestion from my PT to make a playlist of songs with a rhythm that matches my walking speed. So I figured out that a perfect cadence for me is music that is 100 beats per minute, and made a playlist of about 60 songs that matched that. I estimate that I went about 5 kilometers, a new record for both distance and speed. That was indoors on a smooth surface, and walking on uneven outdoor surfaces will be considerably harder (the 5k will include roadways, gravel, and grass-- which may also mean mud), but I'm fairly confident I will finish!
Our potluck yesterday evening was a success-- lots of good food and good company. Unfortunately I failed to take any photos, so don't have much to post about it. So I'll talk about walking instead.
In my PT sessions, part of what we work on is walking in lots of different ways. Recently, I've been working on walking a bit with no support, using parallel bars to catch myself when I falter, and last week I made some big improvements. This is a video that Jeff took on Thursday:
My physical therapist, Lola, is the other person in the video with me. She has I think something like 30 years experience working in neuro rehab, and pushes me to work hard every session, always taking me just beyond my comfort zone. And it's working, I'm seeing improvement week to week. My journey into outpatient therapy was a bit rocky-- I went a full two months after leaving the hospital without having any therapy, related to moving, getting set up in a new healthcare system, and communication breakdowns within the system. However, after finally getting into therapy, I have been very lucky to have been paired with an excellent physical therapist, and excellent rehab facilities. No disrespect to my inpatient therapists in Seattle (who were great), but I think the rehab services available here in Regina are actually better than rehab services in Seattle. I never would have predicted that before moving, and it has come as a welcome surprise.
Part of my homework for PT is to walk (with Jeff spotting me) with forearm crutches. Here is a picture from today's walk:
This is a walkway connecting two buildings on campus-- all the main university buildings are connected in a big loop, so it's a great place to practice walking on a quiet Sunday afternoon. Note the cactus plants indoors, in contrast with the snow outside. It is currently about -7F (-22C) outside, but inside is warm and cozy. I walked a total of 40 minutes, with a break halfway through, and went probably a total of about a half mile (it's hard to measure distances inside buildings, but I estimated with this). It takes all my concentration to walk with the crutches, and afterward I'm mentally and physically exhausted.
I mentioned before that my stamina keeps improving,and that walking with the 4-wheel walker is getting easier. Well, inspired by a friend's recent blog post about doing a 5k turkey trot (that would be you, Andrew), I decided to sign up to walk a 5k while I'm in Eugene-- the "holiday hustle." I'm not sure I'll be able to finish, and if I do finish, it will take me a very long time. But I checked with the race coordinator, and since there will also be a 10k and a half marathon happening at the same time, the course doesn't close until three and a half hours after the race starts, so if I'm going to finish, it will be within that time. Jeff is going to walk with me, and maybe my mom too. It's exciting to have a new goal to work toward!
Last weekend, Jeff's brother and sister and their respective partners came to visit us to celebrate an early Christmas. For various reasons Jeff's family will be unable to convene in December so we did an early holiday celebration, consisting of food, games, karaoke (at home on a pay-per-view type channel through our cable company), going to see the new James Bond movie, a gift exchange, and having a fun and relaxing weekend. Here is a photo of us at a restaurant, just as everyone was about to head to the airport:
Caroline, Jeff, Allison, Bridget, Ray, Shuo
This coming weekend, we are hosting a potluck to celebrate American Thanksgiving, as we did to celebrate Canadian Thanksgiving when we lived in the US. We invited our psychology department colleagues, and expect that we'll have 16 guests and lots of good food. Our house is quite small, so we won't have room for everyone to sit, but I don't think they'll mind too much.
It struck me over the weekend at several points that I felt "normal." At least a few times I caught myself having a good time, not thinking about my physical limitations. I didn't realize just how much of a focus this has been for me until suddenly it wasn't a focus. I think that in one way or another, every waking moment since surgery I have been thinking about my physical health, either overtly or in the back of my mind. Until this weekend. There were moments this weekend when that wasn't the case, and it felt good. I can only assume that there is more of this to come.
On a related note, Jeff and I will be in Eugene Dec. 21-30. Send me an e-mail if you will be in town and want to get together! And happy Thanksgiving!
Between Friday morning and this morning we got about a foot of snow. Apparently winter has arrived. Here is Jeff shoveling snow on Friday evening:
And then again this morning:
Note that you can tell how much snow fell in between by how buried the car across the street looks. Jeff ventured out to get groceries, and it took him about 90 minutes to shovel the walk and dig our car out (parked behind the house, not on the street). We are definitely going to make sure our next house has a garage.
Tuesday will mark 5 months since my surgery. As I was gathering photos for my last post, I also looked at photos from the past 5 months, and it really is amazing how much I have recovered in that time. A rundown of my current status:
-Vision is almost completely back to normal. I still see double if I look certain directions, but this is not really causing any problems functionally.
-Sensation in the right half of my body is still quite impaired, head to toe, but is better than it was at first. I am also learning to compensate for lack of sensation, for example by using visual cues (which is much easier now that my vision has improved).
-Proprioception is much, much better than it was before, but still not perfect. For example, I have a really hard time determining whether I'm holding my head straight.
-Balance continues to improve, though is still not at all normal. I can now stand for minutes at a time without hanging on to anything, and can do things like stand and brush my teeth unassisted. However, this requires some concentration.
-Although my discoordination/ataxia is still limiting me quite a bit, it has also measurably improved. I totally ruined that knitting project I tried to work on right after surgery (just made too many mistakes and couldn't fix them, such that the whole thing started to unravel) and I was recently able to completely re-start it, and it is now going fine.
-My strength and stamina are improving quite a bit. I have physical therapy twice a week and go to the gym and/or do PT exercises at home most days. I'm working almost full workdays, and sleeping only 9 hours a night.
-Walking keeps getting better, and I am now using my four-wheel walker for functional daily walking, and working in therapy on trying to walk with less support. The four-wheel walker has some great advantages over other types of assistive devices, including being able to carry things around with me. Here is a picture from last week:
This is our cat Maddy, and Jeff has dubbed my walker basket the "Maddy caddy." It's nice to be able to carry my kitty again :)
This Halloween was the 10-year anniversary of my first date with Jeff.
It's hard to believe it's been that long! We celebrated by going out for
a late dinner at a fancy restaurant, after handing out candy to
trick-or-treaters. We had a lovely evening, and it spurred me to reminisce about
times gone by. So I will share some photos of me and Jeff from the past 10 years:
Portland, December 2002
Halloween 2003 (What are we supposed to be?)
Florence, OR, September 2004
Halloween, 2005 (Jeff is a software pirate)
Hawaii, August 2006 (our honeymoon)
Christmas in Kingston, ON, 2007
Germany, September 2008
San Diego, August 2009
Seattle, October 2010
Wallace Falls (near Stevens Pass, WA), August 2011
The temperature outside is currently 27F (-3C) with 22mph winds, for a "feels like" temp of 7F (-14C). And I decided it seemed like a good day to go for a walk outside, just as it started snowing. My reasoning? I just got a new walker, the kind with four big wheels that can handle uneven terrain, and I wanted to try it out outside. It's a pretty cool set of wheels-- it even has a little flip-down seat so that I can take breaks if I want to go longer distances. We have already determined that I can go much faster with this new walker indoors, and it helps me to be much more functional around the house, because now I can carry things in the detachable basket, and can move around much more smoothly. I couldn't use this type of walker before because my balance and coordination were too poor, and I would have had too difficult a time controlling it. But now, as my coordination and strength improve, it's working great for me.
So, Jeff and I bundled up and drove a 1/2 mile to a park where we can access a nice path along the (now frozen!) creek, and set out for a cold, windy, snowy walk. It was tough going at times, but we walked for about 40 minutes, and went for one whole mile! Here is a picture of me at the halfway point:
This means that with this new walker, I can walk further than I could before, and it only takes me about twice as long as normal to walk that distance, even in adverse conditions. This is a huge improvement, and really gives me hope that I'm going to recover fully. There are still a lot of things I have difficulty with, and I still have lots of discouraging symptoms and limitations, but in the past few weeks I've had some categorical shifts that keep me hopeful. So as cold as it was, it was definitely worth it to go out today.
In other news, it was Jeff's birthday yesterday. We baked a cake, had a few people over, got take-out Chinese food, and then went to a movie. Here is the cake, chocolate with orange-flavored cream-cheese frosting, and decorations befitting a near-Halloween birthday:
I did about half the work on the cake, and made the marshmallow chocolate-chip ghost, but had to tell Jeff what to write on it. It was delicious, and we will be having leftovers tonight :)
For the past few days I keep getting the song Suddenly Seymour from Little Shop of Horrors stuck in my head. Not because of the content of the song, but because of the title-- on Tuesday evening, seemingly out of nowhere, my double vision started to improve, and I could suddenly see more. Funny how semantic networks work.
So ever since surgery I've been trying to find ways to cope with severe
double vision, and I was really worried that it might never go away,
because even as other symptoms improved, my vision did not. When you
look at the wikipedia page about double vision, they give a picture as
an example of what having double vision looks like:
This is extremely mild compared to what I have experienced over the past 4 months. Imagine instead seeing two equally vivid images, displaced from each other by several feet horizontally, about a foot vertically, and rotated from one another by about 30 degrees. To be fair, this did change slightly just as I was at the end of my hospital stay, such that from certain distances and angles, the images were only a foot or two apart horizontally, and the image on the right was sometimes a little ghost-y like in the picture above. But nothing else changed, and from some angles, things looked just as bad as they did initially. I coped mostly by blocking input from my left eye (with an eye patch or by putting tape over one lens of my glasses), but this has the effect of messing with depth perception, and making it hard to see what's happening on the left side. I got used to this but it was still annoying.
Then really all of a sudden on Tuesday evening, I looked down at my hand with both eyes and only saw one hand. And it was in 3D! So I looked up and found that other objects within a 3 foot radius or so were also no longer double. Over the next 48 hours, my range for seeing things not-double increased, and on Friday it was good enough that I went all day without blocking my left eye. I still see double from certain angles, but mostly the double vision is gone. I can't get over how fast it happened.
But, my left eye still doesn't seem to move as quickly and as smoothly as normal, and I'm having to adjust to having normal depth perception, so my vertigo has been much worse these past few days. Vertigo is uncomfortable, but I'll take it in exchange for seeing a vivid 3D world again. Here is a picture of me just taken by Jeff, looking at the camera with two eyes:
One of the biggest challenges so far related to moving to Saskatchewan has been getting used to a new set of rules and new terminology related to the many bureaucratic tasks of daily life. The most annoying part is that across the board, it seems that American bureaucracies and Canadian bureaucracies cannot talk to each other.
This means that because I have never lived in Canada, despite a perfect credit history in the U.S., I cannot get a credit card. Jeff had to jump through all sorts of hoops to get a low-limit card, which he just got yesterday, about a month after applying. At first we thought this couldn't possibly be correct, but after speaking to multiple people and agencies, it seems that this is how things work. I am still unclear on this, but I may not be eligible to hold a Canadian credit card until I obtain permanent resident status, which may take a year or two. We are not sure what all this will mean for us if we apply for a mortgage loan, but we may be denied due to lack of credit history in Canada. This is not something we had thought about at all before moving here.
Similarly, we have run into roadblocks related to registering our car and getting driver's licenses (not that I am driving currently, but I need a local form of ID). Our car had to go through inspections to be imported into Canada, and another set of inspections to be registered in SK. This resulted in us having to put about $2500 of work into a car that is only worth about $3000, none of it related to critical safety issues or impending mechanical failure. We would have sold the car before we moved, had we known this would happen, and had we had the time to do it.
But, we finally got all that taken care of, and yesterday went to try to get driver's licenses and register the car (you have to have a SK license to register your vehicle here, as is true most places). Unfortunately, we failed-- due to a combination of a lack of understanding of terminology on our part, and the inability of Canadian and American systems to communicate, we were unable to produce adequate documentation that we had been driving for at least two years (despite the fact of having licenses issued more than two years ago, and having brought evidence of having been licensed for a full 16 years). We have since obtained copies of our driving records (thank goodness WA allows you to access this online), and should be able to take care of this on Saturday. However, in the mean time, our Washington vehicle registration expired, so we had to renew for a full year in order to have everything in place to register in SK tomorrow (again, thank goodness we were able to do this online). A lot of time and energy and money spent because someone somewhere has made rules that seem to me to defy common sense.
Otherwise, things are pretty good. We had a very nice Thanksgiving, and just finished the last of the pie last night. Here we are getting ready to eat:
And here are our friends Brandon and Krista, who visited from Lethbridge:
Ever since surgery, food and eating have occupied a huge part of my attention and thoughts. Maybe it was because I couldn't swallow for a week, and wasn't allowed to eat. Maybe it was the steroids they had me on. Or possibly something changed in the part of my brain that regulates appetite. Perhaps it's a combination of all three. But lately I seem to want to eat all the time.
Unfortunately, eating all the time is not sustainable. I lost 8 lbs or so in the week that I wasn't allowed to eat (they were giving me my nutririon through a kind of IV line called a central line, and that just isn't as good as regular food). In the weeks following, I gained back all that weight and then some. In the hospital I was wearing only pajamas and sweatpants, and they were supposed to be taking my weight regularly but the scale in my bed wasn't working properly, so I didn't realize I was gaining weight. That is, until I got out of the hospital, and none of my pants fit me. I have since lost a couple of those pounds, and probably converted a few more back into muscle, so I can squeeze into my pants again. But normally I'm a very active person, and right now my physical limitations make it so that I'm pretty sedentary. So I have to eat fewer calories to maintain my weight, but I'm thinking about and wanting food all the time. It's not so fun, and I now have much, much more sympathy for people who are obese-- I get it now, whereas I never really understood before.
So, I've been carefully counting my calories, and maintaining my weight-- a few pounds heavier than I would like to be, but as long as I can still wear my clothes, it's okay for now. But this weekend I'm letting that all go out the window-- it's Thanksgiving weekend here in Canada, and we're going all out. Friends are coming to visit us from Lethbridge, Alberta, and the only plans we have for their visit involve eating. We have already started a bit of the cooking. I plan to eat my weight in pie this weekend-- wish me luck :)
We are settling into a routine here, and have begun to adjust to the many changes we have been through. Every weekday morning Jeff gets up around 7am and goes for either a walk or a jog. I wake up at 8:30, and it takes me until about 10am to get dressed and eat breakfast and get ready to go (I shower in the evenings; otherwise we wouldn't get to work until noon). Then we go to the University, and work until about 4pm, when we go to the gym. We get home around 5:30 or 6pm, and make dinner (mostly Jeff does this, though I'm beginning to be able to help more). We eat, then I shower while Jeff does housework, then we either run errands together, or work on unpacking, or I watch TV while Jeff works on writing lectures. Around 10pm we start getting ready for bed, and it's lights out by11pm. Then we sleep, and the routine starts again.
Hopefully sometime soon I will start to be able to do things faster, and will be able to help Jeff out more-- he is doing a lot right now, and it's wearing on him. One thing I am able to do reasonably well right now is my job, in it's reduced-capacity form. There is no better type of job to be in when recovering from a major medical issue than a job in academia. There is so much flexibility, it allows me to focus on tasks I can do right now, and save other things for later. In almost any other type of job, I would have to be out on leave right now because I wouldn't be able to guarantee that I could show up on time, or keep up with the pace. I have said in the past that academia is stressful, but right now it's anything but stressful for me-- this job is my lifeline, my connection to feeling normal, and a heck of a lot better than sitting at home watching TV all day, which is probably what I would be doing if I didn't have a job to go to. And so far things are going well job-wise, for both me and Jeff. We like our department, like our colleagues, and are starting to get into the swing of things.
Also, our stuff finally arrived with the movers just under two weeks ago. It finally is starting to feel like we live in this house, instead of feeling like we are camping here. Unfortunately, I haven't been able to help as much as I would like to with unpacking, putting one more huge task on Jeff's shoulders. As soon as I'm physically able to do so, I'm going to take Jeff on a vacation wherever he wants to go, and make sure he has no responsibilities at all. He deserves it.
And finally, my progress: My standing is getting a lot better-- I can now stand for brief periods without holding on to anything. My walking also gets better and better-- yesterday I walked 5 laps at the track with my walker in 42 minutes. That is a distance of 1km! My ability to walk at the track does not mean I can go that distance or go that fast in real-life situations-- on Sunday I went for a walk on one of the paved paths near our house, and it took me a full hour to walk 600m and I thought I might not make it back to the car I was so tired. But still, even a few weeks ago I couldn't have done that at all, so a huge improvement. My typing is also getting better. I typed this whole post, and it took about an hour and a half. Still have slow typing speed, and am typing with two fingers and have to look at the keyboard, but much improved. The one thing that still hasn't improved is my double vision. But I'm hopeful, given the slow, steady progress I have had in the 3+ months since surgery!
For the past 2 1/2 months, Jeff has been keeping a blog with updates about my progress post surgery. At this point, blog posts are no longer only about my progress, they are more about life in general. So, I decided to move the blog back here.
Hopefully soon I will be able to post some photos, but so far I really haven't taken many since we moved. We still have no word on when our belongings will arrive, and so our house is still very unsettled. Right now I'm sitting in an empty room with papers scattered on the floor and two suitcases in the corner. This room will eventually be our office where we will have our desks and computers. But for now, the room is empty and sound echoes off the walls, interfering with my speech recognition software.
My progress toward recovery continues, and on Sunday I walked two laps around the track with the walker without taking a break. This means I can now walk a quarter of a mile. It only took me about 20 min., which is about five times longer than it would normally take me to walk the same distance. For perspective, about two weeks before leaving the hospital it took me that long to walk 200 feet. This is definitely measurable progress.
Yesterday Jeff took me on a walk in my wheelchair along what is called the south storm channel pathway, and it reminded me of the Amazon park pathway in Eugene. I hope that next summer I will be able to jog and bike along the many pathways here!
A lot is happening these days, and fast. It is a bit of a challenge for me to keep up with it all.
The big news is that I am having brain surgery. It is scheduled for June 13th. After multiple consultations with multiple neurosurgeons, it seems like removing the cavernous malformation from my brain stem is the right option for me at this point. If all goes well, I will be done with it after that, forever. I can expect to have symptoms of numbness and vertigo after the surgery, like I have had after each bleed, and might also have other new neurological symptoms as a result of surgery. Only time will tell whether those wind up being permanent or temporary-- I obviously have my fingers crossed for temporary. Post surgery I will likely have a lot of fatigue, and have been told I shouldn't expect to be back to normal in that department for about 3-6 months. Assuming everything goes well, I have been told that I could be in "back to work" condition after about a month, even though I won't be "back to normal" at that point.
We will be moving to Regina right around August 7th, so I will have about 8 weeks to recover before moving. Since I can't predict exactly how recovery will go, I have been working hard to get lots of important things done pre-surgery.
This Friday will be my last day at my current job. I've been tying up loose ends here, saying goodbye to all my patients and co-workers. I am actually very sad to leave, as I have enjoyed this job quite a bit. But, I'm also really looking forward to my new job. I now know my teaching assignments for next year-- a graduate level psychotherapy skills course in the fall, and an undergraduate personality course (with a clinical bent) for winter semester-- and I'm really excited about teaching again.
Last Saturday I took the EPPP (psychology licensing exam), and I think it went okay. I just have to pass with a 70%, and while I was very uncertain of the answers on about 1/3 of the questions (and somewhat uncertain about a lot more), probability dictates that enough of my random guesses should be right that I will pass. I should find out within the next few weeks.
This weekend I apply for my Canadian work permit. So far, things are going faster and more smoothly than expected with this process, and I have my fingers crossed that things will continue that way. I was told my FBI background check would take at least 8 weeks to process, and it only took about 3 weeks. I was told that obtaining a "labour market opinion," necessary for the work permit, would take 2 weeks and it only actually took 2 days. I think working for the VA has led me to be very pessimistic about paperwork processing, and I'm amazed to find that there are at least some instances where things can be fast and easy.
So a lot going on, especially this big deal surgery, which makes me very anxious. But at the same time, a lot is going really well, and it helps me to keep that longer-term perspective. I think that one year from now my life is going to be in a very calm, stable, and good place!
Wednesday, May 16, 2012
Since I last posted, about two weeks ago, a lot has happened-- I had my interview at U of Regina, got a job offer, negotiated, and accepted. So it is now all official, pending approval by the university president (a formality), and pending successful application for a work permit (which involves a whole lot of paperwork, but shouldn't be a problem). The hard part is over-- we have jobs!-- and that feeling of being so unsettled is starting to settle. I am very glad we did not have to join the ranks of the growing number of PhD-holders on welfare.
Our to-do list is long: I also need to apply for Canadian permanent residency, and that is another ream of paperwork, FBI background check, medical exam, and many other hoops. We need to find a place to live, and we are perhaps not quite ready to buy a home in a place we've barely visited (we'd like to get more of a feel for the neighborhoods first), but the rental market is quite limited due to being a very high-growth city, so this will take some work. We are fortunate to have been offered a moving allowance, which means we can hire movers (hallelujah!), but we've never done that before so we have to figure out what that entails. All just details.
I also have sort of been putting off obtaining licensure as a psychologist over the past almost two years, and I absolutely need to complete the process now, because it is required for my new job. I have already done most of the paperwork for this in the state of Washington, and once I am licensed here, applying in Saskatchewan will be a much easier process. The one major last step for this is to take the national licensing exam (the EPPP), and I finally scheduled it for June 2nd. Things are starting to come together.
There is one more nagging issue that I have to get some resolution on before moving, and that is my health. While Saskatchewan is progressive in terms of health care (the birth place of medicare!), and seems to have a good health care system, what they do not have is neurosurgeons who specialize in my particular rare condition. I am in the process of obtaining and considering information from multiple doctors, and thinking through what my best options are. I will provide updates if any arise.
It is sunny today, and has been for most of the past week. All the mountains have been out (i.e., not rendered invisible by layers of clouds) and looking lovely. I'm happy that the weather has decided to be much nicer to us than it has the past two springs, so that we'll have the chance to enjoy the northwest at its best before we move away!
I am currently on a layover in the Denver airport, on my way to a job interview at the University of Regina in Saskatchewan. It is a for a faculty position in the psychology department, and although last August/September I thought I had decided I wouldn't apply to faculty jobs, I'm actually pretty excited about this position.
In related news, Jeff has an official job offer for a faculty position in the psychology department at University of Regina, and is working on negotiating the terms. He recently turned down an offer for a faculty position at MSU Billings. I also have an offer for that position I applied to in Hawaii. Our fears of unemployment appear to be over.
So basically, when Jeff found out he had an interview, he asked about possible employment opportunities for me in Regina, and sent my CV to someone in the department. They immediately began encouraging me to apply for an open clinical psychology faculty position. In a sense, I chose not to pursue academia, but academia decided to pursue me. Not sure whether I'll get caught, but it's nice to be chased :)
And although my whole life I have sworn I would never move somewhere flat, or live far away from the ocean, it appears that we may be prairie-bound. The chances that Jeff will accept the offer in Regina are high, as this department seems to be exactly what we have been looking for in many ways. Not too big, not too small, communication and collaboration across areas within psychology (the clinical faculty and experimental faculty actually know each others' names!), what appears to be a supportive environment with fairly good organization, and apparent interest in faculty as people with interests and lives. So far, it seems to have many of the qualities we liked about University of Oregon.
The city of Regina, although cold in the winters, and very flat, also has many good qualities. Similarly not too big and not too small, community-oriented, lots of parks, progressive (it's in Canada, after all), and recently ranked as one of the best places to live in Canada. I had no idea where it was until Jeff showed me on a map, and to be honest, I'm pretty sure many of his Canadian friends and family weren't 100% sure exactly where it was before looking it up recently. But life on the prairie may be just the kind of slower pace we could use right now.
I'll be sure to give an update soon, after I return from my interview. Whether I get offered this job or not, I'm really hoping that my visit over the next couple of days leaves me with a positive impression of the city, because pretty soon I may be calling it home!
It has now been over 6 weeks since my brain bleed, and I am happy to report that my symptoms are starting to improve. Over the past week especially, things seem to be getting better. I am hoping that I'm through the worst of it, and that recovery from this second bleed will end up being substantially easier and shorter than recovery from the first.
About a month ago, I had an MRI that confirmed the bleed. These are some pictures of my brain:
In this one (the most flattering MRI angle), the white splotch in the middle of my brainstem is the cavernous malformation/bleed location.
In this one, the cavernous malformation/bleed is the white thing surrounded by black.
Same for this one. And yes, my eyeballs look freaky from this angle! Clearly the least flattering from this photo shoot.
I like looking at these images. Somehow it helps to be able to see a somewhat tangible representation of this thing in my brain. It is also interesting to compare these with previous MRIs. It is clear that the cavernous malformation is currently taking up more space in this valuable tract of brain real estate than it was before.
When my neurosurgeon looked at these images, he saw that the cavernous malformation has worked it's way toward the surface of the pons, and there is now what is called a "surgical access point." Because of this, and because of the potential for future bleeds to occur, he is recommending surgery. When I look at these images, I see that it is still right in the middle of my brain. While there may be an access point, accessing it would be difficult and dangerous, with a relatively high likelihood of causing new deficits (due to accidental squishing of healthy neurons) in the process of removing unhealthy tissue.
I am in the process of pursuing second and third opinions about surgery. Given how good I feel right now, brain surgery seems kind of foolhardy. On the other hand, it would be nice to have this thing gone, and to not have to worry about when it might leak again, and whether the symptoms it causes will be worse next time. This decision will not occur quickly or without substantial deliberation.
For now, I am trying to focus on being happy to be feeling (relatively) good!
Pierogies, red potatoes with butter and parsley, roasted asparagus, and red cabbage confit:
Our weather has been lovely and spring-like, and the weekend was happy and relaxing, which was much needed. Hope everyone else had a weekend just as good!
We finished, we made pretty good time (Jeff could have gone faster, but he stayed back with me the whole time), and I feel really good to have done it at all given my current health circumstances. Sometimes it is good to do hard things.
The run took absolutely everything out of me, and I spent most of the rest of the day in the recliner in the living room, alternately reading and "resting my eyes," with a cup of tea and a cozy blanket. I am sure I will sleep well tonight.
My vertigo and numbness are unchanged, and possibly a bit worse since last week, but there are bright sides. Since Friday I've been feeling less fatigued, and I'm hoping my energy level will keep improving. The best part though, is that I haven't had too much nausea. Two years ago when I had my first bleed, the nausea was the hardest part to cope with, so being mostly spared on that front is a blessing.
I am adjusting to life with these symptoms again, and re-learning to work around the discomfort of them. I'm also finding myself intrigued by them at times. For example the fact that my numbness (due to the very specific location of the lesion) it is on the left side of my face and the right side for my hand leads to a very odd sensation when I wash my face. Rubbing my face on the numb side with a hand that is not numb, and on the not numb side with a hand that is numb is a weird feeling indeed. Also, I'm not sure how to describe having a half-numb tongue, but it is also a weird and interesting sensation.
I really appreciate the e-mails of support from people. I might be a bit slow in responding, and while there's nothing new about that, at least now I have an excuse :)
As bad luck would have it, it appears that the cavernous malformation in my brainstem is bleeding again. I am numb on the left side of my face and in my right hand, and I have extremely uncomfortable vertigo and developing nausea. So this kind of sucks.
It's definitely disappointing to have this come up again. Re-bleeding is most common in the first 2 years after an initial bleed, and some people never have another bleed. I was hoping I would be one of those people. Each re-bleed indicates increased chances of a future bleed, and thus increased chances of more serious or more permanent neurological symptoms/deficits. So yeah, this definitely sucks.
But, compared to how things were 2 years ago, when I had my first bleed, I at least feel like I'm in a better place to deal with it. For many reasons.
First, I am living with my husband now, and two years ago I was not. The benefit of this, in both practical and emotional terms, is huge. My friends in SD were extremely helpful when I went through this before, but the whole lot of them could not add up to one Jeff in this respect (sorry guys).
Second, I know what the heck is going on this time. I am not totally freaked out, wondering exactly what this is, what I'm supposed to do, and whether I'm going to have to have brain surgery. There is uncertainty, sure, but I know exactly what that uncertainty looks like.
Third, I already know some tricks for managing these symptoms. For one, I know that exercise doesn't hurt, it helps. So yesterday Jeff and I did our 12-mile training run, as planned, and my symptoms felt a little better for a couple of hours (despite being physically very tired).
So it could be worse. I handled it once, I know I can handle it again, and I'm hopeful that once again the symptoms will eventually resolve. And hopefully for good this time :)
Six-week old baby E. and her momma (our friend from grad school) are both looking beautiful, don't you think?
2. Sometime last fall I finally admitted to myself that I really do get migraine headaches. I went to my doctor, got a prescription for the kind medication you take when you feel a migraine coming on, and it turns out that these pills work pretty well like magic for me. Now that I know how to use these magic pills, and am able to stop in its tracks a process that used to mean feeling crappy for a couple of days at a time, I'm feeling pretty silly for not getting them a long time ago.
3. Jeff and I ran 11 miles yesterday, even though we only meant to run 10. Sometimes my mapping/planning skills are a little off, but we did fine! We are easily going to be ready for the half-marathon at the end of March.
4. Presidents day came and went and I have not planted my peas (as you may know, here in the northwest, we plant our peas on presidents day). I decided to wait for a cold spell predicted for this week to pass, and I will plant them next weekend instead.
5. I am now actually really studying for the psychology licensing exam. I have been "studying" since sometime last fall, then took a break for a couple of months, and just got back into it about two weeks ago. Now that I'm actually putting adequate time into it, I'm making progress.
6. Jeff has now been short-listed and/or interviewed by a total of 4 of the schools he applied to for jobs, and he is still a contender for two of them. He has a phone interview tomorrow, so fingers crossed!
7. I have applied to over 10 jobs so far, almost all of which are VA positions, with more upcoming application deadlines on the horizon. Last week I was offered a phone interview for a position in Honolulu! It's a temporary (2 year) grant-funded position through a research institute affiliated with the National Centers for PTSD. There are at least a dozen reasons why this might not work out, but keep your fingers crossed for me on Wednesday afternoon :)
Lately I have been pretty stressed out by some things, all related to the ongoing fact of being very unsettled, future-wise. This is nothing new. It's about being in this purgatory between grad school and "real job," and a whole lot of people I know are in the same boat. But, I have empirical evidence to suggest that what is stressful today will likely eventually be yesterday's news. A few examples pop to mind, as I think about where I was in Februaries past:
Eight years ago around this time, I was unemployed. It was a relatively brief unemployment, after finishing my MA, and happened to coincide with waiting to hear about whether I was accepted into PhD programs. I was extremely stressed, financially and emotionally. And then just like that, I got a part-time job, and soon after that, I got into grad school, and that was that. And actually, something good came out of that stressful period-- I crocheted a blanket to ease stress and fill idle time, and I sleep with that blanket most nights in the winter these days.
Two years ago at this time, I was sick. Really, really sick (from that little bleed I had in my brainstem). I often acted like I was not sick, and that was helpful for getting me through it. But looking back, comparing how I feel now to how I felt then, it is like night and day. I still have some residual symptoms, which I get annoyed by at times. But when I think back to how things were 2 years ago, I realize just how bad off I was then, and how healthy I am now. One really good thing that came out of that experience was strengthening some friendships-- since I was living away from Jeff, I relied a lot on my internship friends during that time, and they were truly there for me. Thanks guys :)
One year ago, I was in a job that was extremely stressful. I got some really good stories out of it, but for many reasons, it was not the kind of place I could stay for long. Once again, I tried to act like it was fine, but realistically, when that job ended, it was like a huge weight had been lifted. My current position? Totally different. I don't come home from work and complain every day. I have energy left at the end of most days. I actually enjoy my work, my environment, and my co-workers. The only major bad thing about this job is that it has to end in September :(
So I'm hoping that soon some of the current stressors will resolve themselves, making way for whatever new ones are sure to follow.
Two weeks ago we were digging out of a snow storm, and this weekend it appears to be spring!
Saturday morning Jeff and I went for a lovely 9-mile jog. This is the longest distance I have run in over 2 years (maybe longer?), and I am feeling really good to be getting into that kind of shape again. The motivation for the long runs is that we are training for a half-marathon, at the end of March, that involves running all the way around Mercer Island. Jeff ran it by himself last year, and this year I'm going to join him. We have 7 weeks to prepare to be able to run 4 miles longer than we did yesterday, which I'm hoping should be a breeze.
Speaking of breezes, yesterday afternoon we went out to Gas Works Park to fly kites:
Is it just me, or do I look like a vagrant in that picture? It's hard to figure out what to wear, being in a winter mindset with a sudden attack of spring weather.
The kite on the bottom right is mine:
And here's Jeff:
Punxsutawney Phil might have predicted 6 more weeks of winter, but I have my fingers crossed for a lot more early spring :)
On Friday, over 4 months after starting employment at Seattle VA, I continued my seemingly endless series of jumps through HR hoops. The week following my initial orientation in September, they switched over to a new type of employee ID badge, all fancy with a computer chip in it for logging on to computers and such. I got one of the old badges, just regular plastic, because I started just before the new system was implemented. I was later informed that all employees with old badges needed to make an appointment to get a new badge, which I dutifully did, about a month ago. But unfortunately, because of mis-checked boxes in HR paperwork completed many months ago, they were unable to give me a new badge. At the same time, they had already taken my old badge, so they couldn't give that back to me either. Instead, they gave me what amounted to a fake badge, which had my picture on top, and a phrase including the words "non-compliant" on the bottom. It was suggested that I ignore the problem and hope no one cared, but, very shortly thereafter my non-compliant badge was determined to be unacceptable. Fortunately, this time all the paperwork errors were fixed, I got a new badge, and now I am compliant.
In attempts to prevent the impending situation of future joblessness, I am working on getting licensed, to make myself more employable. Related to this, I spent this weekend jumping through a licensure application-related hoop. In the state of Washington, to get licensed as a psychologist, you must 1) complete an application, and after this is tentatively approved, you are given the green light to 2) take the national exam (EPPP), and then after that, 3) take a state jurisprudence exam, then you get licensed. I am working on step 1, and studying to prepare for step 2.
When I went to fill out the application, I had all the requirements completed except one-- Washington requires that all health professionals, psychologists included, complete 7 hours of HIV education covering a range of general topics. So this weekend I watched 7 hours of DVDs (checked out from the nursing education library at work), and learned some things that may be peripherally useful to me at some point in the future (e.g., issues surrounding sharing HIV-related information with other healthcare providers), as well as many things that I very much hope will not be useful in my practice as a psychologist (e.g., safe clean-up of blood, sputum, and diarrhea).
This was one of those times that I was extremely glad to be a knitter-- enough attention to the DVDs to get the essential information, enough attention leftover to make about one and a half handwarmers :)
On Wednesday, the real snow arrived in Seattle. I had arranged to work from home that day, and it's a good thing I did.
This is what our driveway looked like,
and this was the main road:
There were cross country ski tracks on the side streets,
and the park 2 blocks from our house was full of sledders and skiers: I was very glad to avoid going anywhere on Wednesday, but Thursday and Friday I had to deal with the difficulties of snowy driving in the northwest. Seattle has only 26 snow plows. For comparison, Boston (which is similar in population but nearly half the size in land area), has around 500. Add to that the fact that we have tons of hills and poorly equipped drivers, and you can understand how being out on the roadways might be a bit hazardous.
Fortunately, through snow, ice, and unexpected freezing rain, my trips to work on Thursday and Friday were largely uneventful. Tire chains were necessary on almost all streets on Thursday. On Friday, I needed the chains on the side streets, but the main roads were totally bare, and sadly the chains broke from driving too far on bare pavement :( But if a couple of chain links are, for us, the only casualties of what one Seattle meteorologist called "one of the major meteorological disasters of the past decade," I think we got off pretty easy.
Today it snowed in Seattle. There has been very little accumulation where I am (there's snow on the grass and the rooftops, but the roads are clear) but just about 10 miles north of here they got 7 inches of snow today. More snow is expected for tomorrow, and since it's a holiday, I hope it snows a lot! I like snow when I don't have to go anywhere, and we get so little of it here.
This fall and winter the weather has actually been uncharacteristically nice in Seattle. We have had a lot of sunny days (for Seattle), and less rain than usual. I'm also glad that we're getting past the darkest days of the year, and starting to move toward slightly more reasonable daylight hours. Last week one day as I was walking to my car at the end of the workday (4:30pm for me), it was sunny, and really bright. I actually found myself thinking "what is that bright orange light in the sky?" and then laughed out loud at myself when I realized it was the sun setting over the Olympic mountains (I can see both Mt. Rainier and the Olympics from the parking lot at work). We're relatively far north, so sunset is very early in the winter. This was literally the first time since mid-November that I could have possibly seen the sun as I was leaving work, because the sun has set before 4:30pm until last week. I can't wait until the sun is actually up when I wake up in the morning, and remains up long enough for me to jog in daylight after work, but it will be quite a while before that happens.
Last night, for the sake of fun and coziness (and because we had a few people over to watch a movie), we baked sticky buns. Jeff actually did all the baking, I just found the recipe (in this book) and "consulted."
Here they are ready to bake:
And post-flip after coming out of the oven: They turned out to be absolutely delicious (though we made a few mental notes for next time, like pecans are a definite yes, and the cinnamon sugar filling needs some butter in it).
Time to end this post, and have some leftover sticky buns and tea! (Your cue to be jealous) :)
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