Relearning How To Breath

“Breathing the Lord in and my self out. In and out. More of you. Less of my rebellious, insensitive crap.”

This is one of the ‘sticky notes’ on my desktop. I’m not sure at this point if it’s a quote of someone else or my own thought. Because I love quotes I usually lean towards attribution so I’m guessing it’s my own. Either way, it’s my daily companion.

It’s been an interesting six weeks for me. Six weeks during which I’ve had ZERO–yes, I said ZERO–seizures. (Hence the picture of fireworks…) Don’t get me started on the medical end of this complicated and hopefully permanent phenomenon… I’m busy being exceedingly thankful for it. God is beyond good in ways that, as usual, I could never have anticipated.

Now that I’m not all hopped up on anti-epileptic meds (or hopped down?) and am not randomly seizing every week or so… It’s time to get back to normal life. I’m working on that. But it takes a while to reverse all the things you have to put in place when you have such severe seizures. And in the interim I’m going a little stir crazy. And by a little, I of course me a lot. Because of my personality–outgoing, neurotic, high energy, relational–I’m particularly prone to stir crazy. And so the Lord and I have been wrestling. Really in my mind we’ve been circling one another. Like fighters before a sparring match.  Continue reading

A Quick Hospital Debrief

IMG_0751It was a horrific experience. And a brilliant one.

My stomach still rolls at the thought of that room. I may never be able to wear my favorite perfume again because it now reminds me of the hospital. My body is still coming out of some kind of shock that happens when you’re not eating, not sleeping, not moving, and being really stressed out for 8 days. I love words and I know with absolute certainty that I’ll never have the right ones to communicate to someone else how traumatic this particular kind of isolation was for me. Easily the worst experience of my life. Horrific. 

But my heart overflows when I think of all the ways that my friends, family, and the Lord were there for me. Something about being so deprived of other distractions and so buried in a single, unchangeable miserable moment makes joyful things starkly, glaringly bright. As it is, I could make a list that went on for pages of all the moments that made joy rip through my heart. How very well loved I felt. By everyone. And especially by the Lord. Brilliant. 

I drafted about 30 posts while I was there, but didn’t put any of them up because opinions formed under such extremes tend to be skewed. I’m letting them sit so I can revisit them with a less extreme eye. But many posts to come either way.

I can’t recall ever going through such an acute emotional, spiritual, and psychological recalibration so–as you can imagine–my brain is on overdrive processing through all the changes in perspective.

I’ve been out walking around all day, just enjoying being free and alive and in love with the Lord’s creation, and I keep stopping every five minutes to jot down something on my “have to blog about this” list. Excited to share some of those things with you guys in the upcoming days and weeks.

But for now… I’m home. I’m fine. And I’m thankful. 

How You Can Help Me During My Hospital Stay Next Week (If You Want To)

As discussed in my prior post, I’m going to be in the hospital for 2-10 days starting on Monday next week (Sept 16th). A bunch of you have asked if you can come visit and/or what you can pray for. And I’ve been horrendous about answering this question in any concrete manner because, frankly, I’ve been trying not to think about going into the hospital.

Mainly because I’m suddenly terrified. Continue reading

My Upcoming Video EEG…Have I Mentioned How Much I Love Tests?

I love tests. It’s a nerd thing. Possibly also an arrogant / competitive thing. Well, I’m both excited and terrified for this next one. (Which is how I feel approaching all the best kinds of tests. Without the terror, acing the test is not nearly as satisfying.)

It’s a Video EEG. It’s an inpatient procedure that lasts between 2 and 10 days. I go in on September 16th to Abbott Northwestern Hospital here in Minneapolis.

So what’s involved? A lot, as it turns out. They hook me up to a bunch of electrodes and monitor the electrical activity in my brain. I already had the short (40 minute) version of this test several months ago after the first big seizure (read about that test in “So This One Time, When I Thought I Was Dying…“). Continue reading

Seizure Update #2

I’ll start this off by saying that-for the record-I’m finally tired of talking about seizures. Which is strange, because I talk about them compulsively. Even when I want to stop, sometimes I can’t. But in the back of my mind, there’s this growing exhaustion at just the thought of talking about them. So I probably won’t for a while (at least on the blog unless it is particularly relevant to something else I’m writing about), but I wanted to give you guys a quick update before I stop because I know I left you hanging last time with the promise of MRI #2 results.

So… According to MRI #2, Continue reading

Seizure Update

Here’s a “quick” seizure update. I was going to include it in my next post “Seizures: Not Quite As Extreme As Smiting, But Kind of Similar” but it got too long. So for those of you who have been curious about what’s going on, this should bring you up to date. And then you can come back later this week and we can debate whether or not God is using the neurological equivalent of lightning to try to tell me something.

Seizure update: I’ve had four “big” seizures and one “little” one in just over 8 weeks. Three of the four big ones have been in the last four weeks. They did an MRI after the first seizure. There was a “spot” on the MRI. They thought it was a weird shaped vein. Apparently these things can suddenly start (and stop) causing seizures for no reason. I’m on antiseizure medication which isn’t really working so far. Continue reading

What To Do If You See Me Have A Seizure

Otherwise entitled “DO NOT CALL 911 Unless… “

Watching someone have a seizure is a scary thing. Or so they tell me. I myself have never witnessed one.

To be quite honest, the idea of watching someone have one freaks me out. I believe this to be a common reaction. There is a certain innate aversion to things that we cannot control or understand, especially those that we perceive to be associated with death.

The reality is that if I continue to have “big” seizures, some of my friends and family will likely confront this unsettling situation. How do I best equip them to do so?

I’ve always believed that knowledge fights fear. When my family moved to Minnesota from Illinois, I knew there were ticks in Minnesota. I was afraid of them. It kept me up for most of the night for the first week we were in our new home. Finally on the fourth or fifth night, I got up and went to the computer upstairs. I researched ticks. I looked at pictures of them. I read about what kinds of diseases they could cause. I read statistics on how many Minnesotans were infected with these diseases each year. And the picture that I came away with was one I could accept and deal with. A much less scary picture than the one my imagination had been painting every night.

I’ve found the same to be true of seizures. Visually, I’m sure they’re scary to watch. And five weeks ago I knew next to nothing about them. But I know a lot about them now and the picture painted by this knowledge is actually a relatively tame one in most cases.

So here is my short list of handy guidelines on what to do if you’re with me when I’m having a seizure. Quick caveat: this applies to me and my wishes. I’m not a doctor. If you see someone else having a seizure, it’s never bad to err on the side of caution and call 911.

Kate’s Seizure Guidelines:

  1. Don’t let me hit my head on anything, if you can. It’s easier to do this by clearing the area of stuff than by trying to stop my convulsing. If I hit my head hard or seem to have otherwise injured myself on the way down, call 911 so the paramedics can check me out when I come around, just to be on the safe side.
  2. Check your watch. If I seize for more than three minutes, call 911.
  3. Other than points 1 or 2 above, it’s pretty much a waiting game. I should stop seizing in less than 3 minutes. I might not be breathing for a minute after that but I should start again pretty quickly. Your call on CPR, but my understanding is that this is pretty much unnecessary in most instances.
  4. Wait for me to come around. Let me know that I had a seizure and tell me to relax. It’ll take me a while to actually get up to speed, mentally, so don’t expect great answers to questions for a good 10-15 minutes. I won’t remember those first 5-15 minutes anyway, so if there’s anything you’ve just been dying to confess to me, this is the time to do it.
  5. If I come out of one seizure and go into another one within 5-15 minutes, call 911.
  6. That’s it. Good job!

So This One Time, When I Thought I Was Dying…

So after I had the “BIG” seizure (April 23, 2013… a date that I’m guessing will be burned into my brain for a long time), I had a bunch of medical tests done. MRI. EEG. More CTs. They sound scary, but you just lay there while they scan you. For the EEG, you even get to fall asleep. Extremely easy.

I have developed a strange affection for medical tests. Probably because it became clear almost immediately that they were going to be the easy set of tests associated with having seizures. Medical tests are nothing compared to the real life tests that have cropped up — how to ride the bus, how to handle seeing people for the first time after they watched you have a seizure, how to distinguish between drug side effects and your overactive imagination, how to talk to coworkers about seizures, how (and when) to tell your mother that you had another one… the list of life tests is much longer and seems to grow daily.

But I digress. We were talking about medical tests. About a week after I saw my neurologist, I had an MRI and an EEG. I actually liked both because I like being tested. Math tests, aptitude tests… I’m a big fan. So I go to my MRI. The techs are really nice. I lay on this platform that slides into a big white tube that makes hammering noises around me for 40 minutes. I spent the majority of the time congratulating myself on how non-claustrophobic I am and wondering if the weird different noises the machine was emitting were making different parts of my brain light up on the scans. Then they pulled me out and injected me with some stuff (contrast) and put me back in so they could take more pictures. One of the lab techs was a little too nice to me when they pulled me out to inject the contrast (he called me “blue eyes”) and even nicer when they pulled me out at the end of the test (he called me “princess”). Which was the first time in this process that I thought “oh no, I’m dying.” Because “princess” is something you call someone after you’ve seen a giant brain tumor on their scan, right? I don’t look like a “princess” otherwise. I look like an accountant.

So I leave the MRI and they promise to get the results to my doctor in a couple of days. Fine. I go to my EEG. Now this test I’m more excited about. Basically they put a bunch of electrodes on your head and watch the electrical activity in your brain . Usually they strap you down, but the tech said that I seemed pretty with it so she was going to skip that part (umm, thanks?).

During an EEG they flash a bunch of strobe lights in your eyes (I know, seems like a bad idea with someone who has had a seizure, but apparently strobe lights cause seizures less often than you’d think). They also make you hyperventilate (which I didn’t realize I could make myself do; bonus talent revealed). Then they have you fall asleep if you can. I didn’t think I fell asleep, but the tech said I did. At this point, I’m just assuming that my own idea of consciousness is flawed and trusting medical professionals so I’m assuming I did. When you’re done, they say the same thing–we’ll send this to your doctor and she’ll get back to you.

So I wait a few days. I’m already thinking vaguely that I’m dying because of that MRI tech’s overly solicitous “princess” stuff, but trying not to panic until I have more information. Then I get an email from MyChart. MyChart is the best thing ever. It’s an online system that my hospital (and many others) use that allows you to log in and see your test results, exchange emails with your docs, schedule appointments, etc. So much more organized that I ever would be. Anyway, it emails me and says that my MRI results are up. WHAT?! I immediately go to the site to read the report. Even though my neurologist hadn’t called me yet. Which I knew could be a bad idea, but… impulse control isn’t my strong suit and I’m kind of an information addict.

Here’s what the MRI report said (at least the way I was reading it… with the assistance of Dr. Google): We found something abnormal in her brain. It’s about the size of a pea. It’s in location X (still can’t figure out exactly where it is because the medical jargon is so incomprehensible… and does it really matter?). There are a variety of things this could be and they include the following: infection, tumor (brain cancer), lymphoma (blood cancer), vascular malformation (weird shaped vein), a weird bruise in her brain (???), and a couple other things. We recommend that you correlate the results with her CT to figure out what the heck is going on.

In summary: It said that it could be anything. But most of the things were bad. And all of them involved my brain being abnormal. Which I normally wouldn’t mind. But I prefer electrical / psychological abnormality to structural abnormality. Structurally, I would prefer to be average.

So what do you do with this information? I have no idea what you should do, but here’s what I did…

  1. Don’t tell anyone. I was freaking out enough for everyone. I’m not a secretive person (too much the opposite if anything), but I like to wait until I have real facts rather than getting anyone riled up over nothing. The exception being myself, of course.
  2. Spend the first 24 hours making a Bucket List. Sounds cliché, but it was very calming. A project I could work on so I’d be ready when the official bad news came, if it did. It was something productive to do while I waited. And I learned a lot from the exercise. It was a very different list than I would have made a few weeks earlier. I’ll post something about it another time.
  3. Reevaluate your life. I’m an accountant. I help people fix business tax problems. When you think you’re dying, you wonder if it was a good idea to spend your time on that.
  4. Develop an immediate empathy for others who have gone through real health trials. As it turns out, life doesn’t flex to allow for personal disasters as easily as you’d think. I felt like my world was stopped… I was standing on the edge of something, holding my breath… but everything was moving forward around me and I was expected to keep doing my normal life things–work, workout, eat, hang out with friends, etc. This made me irrationally angry at people sometimes. Couldn’t they see that I wasn’t breathing? Why were they asking me for things when it was already taking everything I had to hold myself together? To be fair, I hadn’t told them anything. So they couldn’t know. But I was angry anyway. I tried not to act on that anger. Besides, there’s a chance that was just the Keppra talking anyway (see future post on Keppra & irritability).

So then my neurologist finally called. After I’d spent two days quietly contemplating the idea of brain cancer. And she said (basically)… we’re pretty sure it’s a weird shaped vein (veinous malformation for those of you who like big, precise words). It’s probably been that way since you were born. We don’t know why it’s causing seizures now. But it’ll keep causing them. But you’re not dying or anything. We’re pretty sure it’s that. But there’s a little tiny chance it could be a tumor. Keep taking your seizure meds and come back in for a new MRI in 3 months and we’ll reevaluate.

To top it off, she said “Oh, and your EEG came back normal.” Which was a bummer. If someone is measuring the electrical waves in my brian, they shouldn’t come back normal. Not because I’ve had seizures, but because I’m awesome. Which should clearly show up on a test like that. So I’m assuming that what she meant was “Your EEG didn’t explain your seizures and the extreme awesomeness that we saw on your scans is not medically relevant.”

In summary:

  1. I’m not dying (probably).
  2. Just because an MRI tech calls you Princess, does not mean that you have brain cancer.
  3. EEG’s do not always show how awesome you are.
  4. Do not read your own test results when they’re posted online before your neurologist calls you. I know that you won’t be able to resist, but don’t say that I didn’t warn you.

Okay, my laptop is dying (and if you reached this point in the post, you’ve journeyed through many more words than I intended to write when I started it) so I’ll end this part of the saga here. Tune in next time to hear about what to do if you see me having a seizure (a post most likely entitled “DO NOT CALL 911 unless…”).

In The Beginning: The “BIG” Seizure

So the other day I had a seizure. The unconscious, on-the-ground-twitching, scary kind. Scary for the people watching me, at least. I don’t remember any of it. One of many seemingly small things that I’ve become very grateful for in the last four weeks.

For those of you possessed by a morbid curiosity (like myself), here’s a brief recap:

I was at the gym. No, not working out yet. As much as I like to think I go hard at the gym, I did not exercise myself into a seizure. It was much more boring than that. I was showing someone how to do a ring row. If you don’t know what that is, you should google it. And then you should go read my future post on Crossfit and get with the program.

Anyway, basically I was coming down from a pull up. Kind of. And then my eyes went up and to the right and my head went with them. It’s really weird to try to pull your head back to the center and not be able to. Don’t worry–I wasn’t afraid. I was just confused. Why wasn’t my head doing what I told it to do? So I went down to one knee on the floor. The rubber-covered floor, by the way, which is really the best possible kind of floor to be on if you’re going to have a seizure.

I don’t remember the rest of this, but apparently I said something to the girl next to me about vertigo and then rolled to my side on the floor and started seizing. Not polite, twitchy seizing. Full body, all muscles locked, thrashing. Sweet. Everyone watched me. I swear I can remember hearing someone yell to someone else to call 911, but logically it’s unlikely that this was an actual memory.

There’s not much you can do for someone who is seizing if they’re already in an open area (aka they’re not going to hit their head on anything) and they’re breathing. Apparently I was drooling. Gross. After about a minute or two of that nonsense, I went still. And stopped breathing. And turned blue. Which is when people started to freak out a little more. They waited for a minute or two and just when they’d decided that someone needed to do CPR, I started making these deep growly noises. Again, sweet. Not embarrassing at all. But apparently very common when you start breathing again after a seizure.

So I started breathing again. They rolled me to my back and waited and I eventually regained consciousness. The paramedics got there and asked me some questions, none of which I remember and none of which I could answer. So they loaded me up and put me in the ambulance. That’s the first thing I remember–waking up in the ambulance.

It was a very surreal experience. The EMT asked me some questions… where was I, what day was it, how old was I. And I knew that I should know the answers, but I didn’t. It’s very weird. If I ever have another one (let’s hope not), I’ll try to better observe and articulate that particular feeling.

We went to the ER. I was pretty out of it still, but took the time to call my parents and let them know where I was going. The gym had already called them (again–where better to have a seizure than somewhere that has your emergency contact information on file?). Then I texted three of my best friends and told them I was on the way to the ER and asked for prayer. And because I have the best friends ever, their only response was “what hospital” and they showed up 20 minutes later. Pretty freaking awesome. It’s way easier not to freak out when you are busy trying not to freak other people out. It occurred to me several times that I was wearing the perfect outfit for the hospital–workout gear and my sweet Crossfit shoes. I mean, how sick could I be while wearing by Reeboks and a Nike Drifit shirt? Clearly this would be no big deal.

And it wasn’t really a big deal. All my scans came back clean. No heart problem. No obvious brain problem on my CT. Nothing weird in my blood work. No answers, just a referral to a neurologist to get some additional testing done.

So I went to the neurologist (which is almost impossible to do because they are so freakishly hard to get appointments with… very disturbing when you think you might have brain cancer or something and they offer you an appointment in three months… at which point crying uncontrollably on the phone with the nurse/scheduler is a very effective strategy, in my limited experience). And in the process of talking to her we realized that I’ve been having seizures.

TWIST. I know. Not big seizures like the one at the gym. Little, tiny, baby seizures. I call them “reading” seizures. Sometimes when I’m reading something, I suddenly won’t be able to read at all for about two minutes. If you held a flash card up in front of me with the word “red” on it, I literally would not be able to tell you what it said. I just switch tasks to something not reading-related and come back to the reading in a few minutes. Yeah, apparently not something that happens to everyone, much to my surprise.

In seizure math, one seizure is good and more than one seizure is bad. One seizure = unlikely to have another (around 15%). Multiple seizures (even of different kinds) = highly likely to have more seizures (of various kinds). Sweet. So my neuro ordered more scans (MRI, EEG) and blood work. And put me on Keppra (more on that interesting little beastie of a drug later), an anticonvulsant. And told me I can’t drive for three months (a restriction that sucks less on the surface than in actuality; more on that later too).

And that is literally all the time I can spend talking about that right now… You’ll have to tune in to my next “seizure” post to get the next update in which our heroine gets the results of her MRI back and thinks she’s going to die…