Fun in the Sun

Jeff and I had an excellent spring break together, and this afternoon, Jeff went back to Seattle. I am always sad to see him go, but happy to have had time together. Our week was very eventful:

We did our taxes, which wasn't so fun, but it's done now, and that's the important thing.

We went to the Anza-Borrego desert, which is beautiful, and saw an amazing show of desert flowers (normally it's brown and dry, but after the rain it's actually sort of green in places, and the flowers bloom for a few weeks), cacti, and a real-life palm oasis:




We also took a bike ride around Mission Bay,

went to the Wild Animal park and saw a baby elephant,

hiked around Torrey Pines state park,

and spent time with friends.

All in all, an excellent use of a week together. And I'm starting to feel like a normal person again :)

Spring Break

I am taking a spring break this year. Jeff is coming down to visit on Saturday, and staying for a week, and I'm taking the whole week off of work. After almost two months of not feeling my best, I am ready for a vacation.

And honestly, the past few weeks I've been feeling a little burned out. I've been busier than usual, partly due to cramming people in around doctor's appointments and such, but partly because the influx of patients into our clinics appears to be seasonal, and we're in high season. And my clients have been more intense than usual (more people in crisis, considering suicide, becoming homeless, etc.). So I am really really ready for a vacation.

One more work day, and then it's sleeping in, enjoying the lovely SoCal spring, and spending every day with my husband for a week :)

Watch and wait

In the past couple of weeks, I've had some good news. First, some of my symptoms are starting to get better. I'm less tired, have less numbness, and feel less nauseous. I still have all those symptoms to some degree, and still have vertigo (which makes the room look like it's spinning), but I'm getting used to it, and primarily only have the vertigo in certain head positions, so it is manageable. So basically, I'm starting to feel better.

Second, I also got some more information about my brain condition, after meeting with a vascular neurosurgeon. The good news is that surgery is off the table for now. This is a huge relief, because any surgery has risks, and brainstem surgery has substantial risks. So no surgery = less anxiety for the moment.

The bad news is that some of my neurological symptoms are probably permanent, particularly the vertigo. There was definite evidence on the MRI of a bleed in my brain associated with my cavernoma, and this probably damaged some brain tissue, and unfortunately brain tissue doesn't regenerate as easily as some other body tissues do. The other bad news is that the cavernoma is still there and always will be, and will continue to pose a risk for re-bleeding, or other future "neurological events" leading to symptoms. If that does happen, I might end up with more symptoms, some of which might be transient, and some of which might be permanent.

The mixed news is that there is absolutely nothing I can do about this. On the one hand that kind of sucks. But on the other hand, it's also somewhat freeing. I have no major restrictions on my activity, don't have to engage in any special behaviors, and never have to worry that I'm doing something wrong or should be doing something differently related to my cavernoma. If something bad is going to happen, it will happen regardless of what I do, and I'll have to deal with it. That may mean surgery in the future, or not, and may mean that I have more problems in the future, or not. And all the worrying in the world will not change that, so all that's left to do is get on with the business of living my life.

Which, happily, I am able to do. I haven't really missed any work, and probably won't have to. I stopped jogging for a while, but today Jeff and I went for a slow, short jog to ease back into it. Jeff visited this weekend, and we went to the zoo, spent some time with friends, and relaxed. And as I've been feeling slightly shocked and anxious about my diagnosis, I've been reaching out and connecting with my support people, including some very good old (and less old) friends, and family. Thanks to all of you for just existing, because it makes everything easier to know you're all there :)

And just for fun, here is a picture from the zoo. If you look really really carefully, you may be able to spot a meerkat pile-up between the tree and the stump to the left of it. There are at least four meerkats there.

I have a fondness for photos of animals, where the animals are just barely visible (if at all). I have sort of a collection of them. They make me laugh in the same way that it's funny sometimes when a 3-year-old tells you what they just drew, because the picture both is and is not exactly what you are being told it is. So yes, this is a picture of meerkats :)

I must have a door in the back of my head...

Lately I've had the Dandy Warhols' song "Solid" stuck in my head a lot. It's probably because I recently found out that I actually do have something in the back of my head. Or, more accurately, in the back of my brain. But it's not a door.

Those of you who read Jeff's blog will already have some info about this, but I was recently diagnosed with something called a cavernoma (also goes by many other names, like cavernous malformation, cavernous angioma, CCM), in my brainstem (left pons, to be exact). There is more information about what that is here.

So what this means, is that I haven't been feeling so well lately. The vertigo I was having trouble with? Yeah, not actually what they thought it was, turns out it's a result of this thing in my brain. Which is also causing nausea, numbness, and general tiredness. It's not clear where it came from (I may have been born with it), but now that it has caused symptoms, it's turning into a real pain.

I'm still waiting to get more information from a specialist about what I'm going to have to do about this. It may be a watch-and-wait situation, or I may need surgery. But either way, it's disrupting my life a bit. I'm actually still going to work every day, doing most of my normal stuff, but I'm not feeling so well as I do it. And I'm more exhausted than usual, which means that I'm not really doing anything extra (except a little extra sleeping). The worst part though, is knowing that the cavernoma is there, that it might cause serious problems, and that it is not clear yet what the best course of action will be.

It's a weird thing to be going through, and even weirder that Jeff is in Seattle and I'm here. It's not horrible, but it's not ideal either. There are moments when it would be awfully nice to get a great big hug, and there isn't one readily available the way there would be if Jeff were here. But, on the flip side, I think I might be more affected by my symptoms if Jeff was here to take care of me. That might sound crazy, but the thing is, I generally feel better-- emotionally and physically-- when I'm doing things. And if Jeff were here, I might have been letting him take care of me from the start, and I might not have figured out that it's better to be moderately active. So maybe there is a bright side.

Just for fun, here is a picture of my brain, taken in 2003, that I think might actually show the cavernoma. I volunteered to have my brain scanned in the early days of the UO's fMRI machine, when they were testing some new software, and I was compensated for my time with a CD of images of my brain. I'm no medical expert, and I can't read MRI's, and this was a scan done for research purposes not for medical purposes, so take what I say here with a grain of salt. But, you see that bright white oval, over the spinal cord, just to the right of center (keeping in mind that left is right on brain MRIs) on this image? That might be it.


It doesn't look like much, and I didn't even notice it when I first looked at these images, years ago. Let's hope it doesn't cause too much trouble.

Post from work

Amazingly, I really can't think of anything I desperately need to be doing at work right now. Thanks to a couple of cancellations earlier this week I've had plenty of time to catch up on things, and now I've got two hours while I'm waiting for my next meeting. Unfortunately I'm also not feeling so well today-- I've had some vertigo for the past few days, which I've never had before, so I went to the doctor yesterday. They said it's nothing serious, just a condition that people sometimes experience which goes away mostly on it's own, but which may last for several weeks. Which actually really sucks, because I've been pretty nauseous today because of it, and "lost my breakfast" as you might say. I hope it goes away quickly...

The other thing about this condition? It mostly occurs in people over 60. Which has gotten me thinking about turning 30. Which is happening in two weeks (!) and I'm not quite sure I'm prepared. I know that there is no qualitative shift that occurs at 30, but I think other people do view 30-somethings as different from 20-somethings. Sometime last week I was reading an intake report on a client I was about to see, and this person was described by the assessor as "middle-aged." And do you know what that person's age was? 34 years old. I just about had a heart attack. I cannot be 4 years away from middle-aged. I am clearly a young adult, and will clearly be a young adult for the rest of my life. Right?

Also, I have a client who has three children and one more on the way, and I really think of her as a grown-up, like a real grown-up, not a young-adult faking being a real adult. I must have known this at some point and blocked it out, but I was reminded this week that she is (drumroll) 28 years old. I'm not sure I can handle this "getting older" thing. I will not turn into one of those people who lies about their age, but I can see myself being genuinely confused at some point, and checking the wrong box for age category on the census...

The good news? My strong, able-bodied, young-adult, 30-year-old husband will be visiting me this weekend, and can take care of my invalid self for a while. I actually genuinely believe right now that as soon as he arrives I'm going to feel 100% better, because I think us being apart ages me, a lot. So I have the vertigo of a 60-year-old right now, but once Jeff arrives it will take 30+ years off my age, and I'll be back to normal. The doctor might not agree, but I'd be willing to bet that a good hug will knock my vestibular system right back into balance.