Today I was searching on the Internet for information about recovering from my stroke. My referral to a neurologist still hasn’t gone through. I’m doing very well indeed, but I have one disturbing symptom that’s keeping me from getting back to work: When I stand for more than about a minute, I feel woozy — not exactly dizzy, but headachy, faint, sick, and wanting to lie down. It’s not real severe, and comes on gradually, and generally feels better after a nap. But it is there, and I’m wondering if that’s my remaining effect of the stroke.

So, I Googled “Cerebellar Infarction” (the type of stroke I had). And then I got really distracted. Because I found out how lucky I was.

This article: Pitfalls in the Diagnosis of Cerebellar Infarction reported a study of people with Cerebellar Infarctions (like me), whose diagnosis was missed when they initially went to the Emergency Room (like me).

I got to that article from this one: The Clinical Differentiation of Cerebellar Infarction from Common Vertigo Syndromes. The article outlines the different common Vertigo syndromes and how Cerebellar Infarction is different. It said that only 0.7-3% of patients presenting with vertigo actually have a Cerebellar Infarction, but of those 35% get misdiagnosed.

I was sent home from the Emergency Department that Monday night with a diagnosis of vertigo, probably stemming from my migraines. They had done a CT scan, so I thought they were right, and I must be fine. I went back on Thursday morning (to a different Emergency Department) with additional symptoms (mainly a wicked headache and feeling faint plus right side tingling), and they did an MRI and learned I’d had a cerebellar infarction from vertebral artery dissection.

From reading the article, I can see how they missed the diagnosis. Once they found out I had a history of migraines (though never ever with vertigo), that presented an easy thing to blame. I did not realize that CT scans only catch 26% of cerebellar infarctions.

The article says that one tip-off of cerebellar infarction is being unable to walk without support. Well, I did walk from the Information desk at the library to the sofa in the back room. But I doubt I made it clear to the doctor that there was no way I could have done that without the help of my coworker. And I leaned on every desk or wall that I passed along the way, and was not able to walk straight. (By the time the doctor saw me, probably 45 minutes after the initial attack, the vertigo had just ended. So I was able to walk by the time they were done with me.)

Anyway, the really sobering part of the article was this: In the study of misdiagnosed cerebellar strokes, 40% of the patients died! Out of the remaining 60%, half of those had “disabling deficits.” So as it looks like I will get through this without disabling deficits (assuming the wooziness clears up), it looks like I am in the “Lucky” 30%.

Now, the study was based on a small sample. But the fact remains: I am glad I asked for prayer after I went home from the Emergency Room! And I am all the more thankful to be alive and thinking and functioning!

So I am going to have to stop thinking about this, though. After researching it and reading the articles this morning, I really didn’t feel good and slept all afternoon! But let me go on record as being thankful to God that my life was spared!

One of my friends asked me if I was scared when all this happened. That made me think. Was I scared?

Well, it basically all happened too fast to be scared. Things I have read after the fact made me realize that the whole thing could have turned out much, much worse. But the fact is, it didn’t.

I admit I was scared when I was at the library and suddenly the room started spinning. But in some ways it was a relief — I KNEW something was wrong. Why was that a relief? Well, for three solid weeks I’d had a headache every morning and had to decide whether I was well enough to go to work. I had even been thinking of going home early that very day, but told myself, no, I wasn’t sick enough.

It’s like when my son was three years old. He started throwing fits at naptime, until finally I stopped making him take a nap. He wasn’t sleeping anyway. But it was a tough decision. Did he need a nap? His older brother had taken them right up until he went to Kindergarten. However, a couple nights later, he threw a major tantrum from 2 am until 3 am, screaming “I want to stay up all night and all daaaaaaay!” There was no agony at all in that decision. Nice try, kid, but sorry, you have to go to sleep!

That compares a little bit to how I felt when I knew, with no question, that something was wrong. All those previous three weeks, I’d had to make decisions about going to work with a headache. Now the decision was out of my hands. I was not able to stand up, let alone work.

I did ask them to call the paramedics when I remembered that since I was on birth control pills (for the trouble I’d been having with ovarian cysts), I was at slightly higher risk for stroke. When the paramedics came, I started vomiting, and rather than make me more afraid, that simply made me all the more certain that something was indeed wrong. No more agonizing decision! I was sick.

I did hear one of the paramedics tell the hospital staff something to the effect that I was at a zero on the “stroke scale,” so from that moment I was no longer afraid it was a stroke. However naive that confidence was!

Now, I had gotten afraid a year and a half earlier, when for three months I was having trouble with headaches that lasted two to four weeks. But they had done an MRI and found nothing wrong. And then they found a preventative that wiped out my headaches more effectively than ever before in my life. Since the preventative dealt with serotonin levels, I was sure they were right and the headaches were just a new migraine pattern. So this time, it felt really similar, and I was easily pacified and told this was probably just a new migraine pattern of some kind. That did make me nervous, but I trusted the hospital staff. Surely, if it was something dangerous, the CT scan would have caught it? I didn’t want to be subject to vertigo as a new migraine symptom, but if that’s what it was… I went to work on Wednesday and told them that whatever had happened, at least it wasn’t anything serious….

Then, when I woke up Thursday morning feeling faint and tingly on my right side, once again it happened too suddenly to be scared. I wasn’t thinking about the future, just if I could get “ready” for the paramedics. Or could I get a friend to drive me? Call me vain, but my first thought was of just getting to my phone and calling the paramedics — but I blanched at the thought of them finding me in my sleep shirt! I did feel better — able to stand — after lying down for a little while. So then all I was thinking about was getting food and taking care of details. I was able to call the doctor’s office and cancel my morning appointment and talk with a nurse. I was able to get dressed and eat breakfast. I put a bag together in case they decided to admit me to the hospital (figuring that by Murphy’s Law, if I did that I wouldn’t get admitted — Too bad it didn’t work this time!). I grabbed not one but two books to have with me at the hospital, my phone and its charger, and the papers they sent me home with on my earlier hospital visit.

All those things to do gave me something to think about rather than be scared. I did get worse just before my friend arrived, but then she arrived and I was able to get to her car and then I was on the way to the hospital.

I have a lot of trust in doctors. Once in the hospital, I could lie down and let them figure out what was wrong!

I do know that some time in the hospital — I’m not sure when it was — I wondered if I was going to die. I don’t want to die, not at all. There’s a whole lot more I want to do with my life, and I especially don’t want to leave my sons yet. But I found myself thinking that if that happened, at least I wouldn’t have any more headaches! I do firmly believe that God would look after my sons. (Though I’d much rather do it.) And I realized that if I die before I mean to — well, the repercussions will fall on other people. I would then get to take it easy! So I did pray, telling God that I really don’t want to die yet, but if it’s His time to take me, He’s going to have to take care of my boys and all the loose ends I’d be leaving in my life.

But that was just one bad moment. And it wasn’t being scared, it was thinking through the fact that even if the worst happens, I don’t need to be afraid.

I did find myself praying as the MRI was being done, “Lord, if there is something for them to find, let them FIND it!” because I was not ready to go home again and be told this was a new migraine symptom! It was way too extreme for that!

But I never did feel like what I think a “stroke patient” feels like. The stroke hit my balance center, and not my language or thinking. Thank God! After the fact, I’ve read a lot more about what could have happened.

In fact, my most fearful moment of all was when I’d been home for five days. The doctor had gotten the results of my blood test, and my Coumaden levels were a little high. He asked me to skip my Coumaden dose that evening, and get my blood drawn again in the morning. Coumaden is a blood thinner, keeping me from getting any more clots. Too much, though, and you are at risk for bleeding.

However, when I went to bed that night, about five hours after skipping my Coumaden dose, the right side of my neck was hurting horribly, feeling a lot like it did when the stroke happened. I quickly imagined all the blood in my body clotting there. I went downstairs and split a pill in two and took half, but I had a very bad night. I took Percocet, which didn’t phase it a bit. I was afraid to get up, for fear I’d faint again. You see, now I knew what a stroke can do, so I was a lot more scared than before, when I hadn’t thought much about them.

But I did wake up the next morning with my neck feeling completely fine. I’m still getting a very low grade headache, but I’m quite sure it’s from the vertebral artery dissection and not a migraine. And Tylenol actually works for it most of the time!

Now I’m back to that difficult decision. When am I healthy enough to go back to work? Am I tired because of lying around so much, or does my body just need rest so it can focus on healing? In other words, should I push myself, or should I do the opposite?

I’m kind of doing a cross between the two. I’m driving myself to the clinic to get blood drawn. Yesterday, I did the grocery shopping with my son. It did wipe me out, so I took a long nap afterward. I’ve started cooking dinner for us, but I’m cooking things that have lots of leftovers, so I don’t need to do it every night. Tomorrow, I’m going to go to church and see how I do. I’m thinking that I can definitely go to work. I’m aiming for Tuesday, since I have to get blood drawn on Monday. The big question is how long I will last, or if I’ll have energy to go to work the next day!

So the answer to the question, “Was I scared?” is No, I really wasn’t — but that may have been because I didn’t really understand what was going on! One thing’s for sure: I feel loved and protected and cared for — by God and also by my friends and family. I know I was upheld by many people in prayer. And I am going to be okay. And this whole episode went much, much, much better than it might have. Thank you, thank you, everyone who prayed for me.

In fact, right now I’m listening to a new Peter Furler CD, and a song is playing based on Psalm 23. These words seem perfect:

“Even though I walk through the valley of the shadow of death,
I will fear no evil,
for You are with me.

“Even though I walk through the valley of the shadow of death,
Your rod and Your staff,
they comfort me.”

So, on Thursday, July 28, I had a 9:00 doctor appointment as follow-up for the vertigo that had brought me to the emergency room the previous Monday. My clinic is quite close to my work, so my plan had been to go to the appointment, then see how I was feeling and probably go straight to work afterward.

But when my alarm woke me up, I had an awful headache. I managed to get myself out of bed and knew immediately that I would not drive myself to the appointment, but would go to the emergency room instead. I did manage to use the bathroom, and I didn’t exactly have vertigo like before, but I definitely felt like I was going to faint. I rushed back to the bed and laid there with my heart pounding, wondering what to do. Then I noticed that my right arm and right leg were numb and tingling. Had I been sleeping on that side, so they were just “asleep”?

Some said I was smart to go to the Emergency Room. Well, that part didn’t take a decision at all. I absolutely knew this fit the criteria on my discharge papers that I should go back. But should I call the paramedics, or should I get a friend to take me?

Where I was maybe not so smart was that I decided I did NOT want the paramedics to come when I was still in my Sleep Shirt. And they wouldn’t have room for a stretcher in my bedroom, with all the books on the floor! So vanity made my initial decision for me. I was feeling slightly less woozy, so I got up and put on some clothes. I did not go so far as to take a shower — I was really afraid I’d faint if I tried that.

I did wake up my one-day-less-than-17-year-old son to tell him I was going to the Emergency Room rather than to work, so I didn’t know when I’d be back. I wasn’t quite sure he really heard me! (This was early for a teenager.) I put together a little bag with some changes of underwear just in case they admitted me.

Okay, next step: I thought I’d get some breakfast. Maybe I’d feel better after eating? My standard breakfast is oatmeal, so that takes a little time to cook. I went to the sofa and laid down every minute or so and managed to get the food made. As I was eating, I noticed that the right half of my face — particularly my lips — was numb and tingly. That freaked me out completely. Now I was sure I was going to the Emergency Room.

I still wasn’t sure though, whether I could have a friend take me or if I should call the paramedics. I decided to call my doctor’s office, since I definitely wasn’t going to make that appointment. By then, I was feeling considerably better. I think the tingling had mostly passed, and I was lying down on the sofa when I made the call. They cancelled the appointment and told me to go to the hospital, and that I could have a friend drive me.

I called a couple friends, and found one who was able to take me and left right away. (Thank you, Kathe!) I tried to figure out what to bring and made sure I had everything I wanted. Then I thought I’d print a map for her to the nearest hospital. Somewhere while I was printing out the map, I started feeling awful again. I actually called Kathe, and if she hadn’t been only two minutes away, I would have called the paramedics. But she showed up right away. She helped me walk unsteadily — I couldn’t walk in a straight line — to her van, and I asked to lie down in the back seat instead of sitting up. She got me to the hospital quickly.

And they got me in right away and looked me over. (Fair Oaks is a great hospital!) At first they didn’t seem very alarmed. They had access to the CT Scan that was done on Monday, so didn’t think it needed to be done again. But since I had that tingling on my right side (and that continued), they decided to do an MRI.

While they were doing the MRI, I was praying that if something was there, they would FIND it. Because I absolutely knew that I was not okay and I would have a really hard time believing these were new migraine symptoms.

Later, when they did send me for a CT Scan, I figured they must have found something. Sure enough, they told me I’d had a stroke, and they were going to admit me “overnight for observation.” Okay, I guess they tell you “overnight” at first to let you down easy! I was super glad I had taken the time to eat breakfast, because I didn’t get any food until after they admitted me at dinnertime. They did four tests that first day. I think the other two were a sonogram of my heart and an MRA (magnetic resonance angiography) of my head.

When I had dinner, my roommate on the other side of a curtain said it smelled delicious. She asked what it was, and said she was on a liquid diet, so she was enjoying my food vicariously. I asked how long she was on a liquid diet, and she said For the duration! It turned out (from her phone conversations and such) that she was dying of cancer, but had just had surgery to drain her stomach from fluids that were making her sick, which had her feeling much better. She told friends that earlier that week, she thought she was dying, but thanks to the surgeon, now she was hoping to walk unassisted in her son’s wedding next month. She was an inspiring Christian lady, and definitely nipped any desire I had to complain in the bud right at the start!

The next day was my son’s 17th birthday, so I was sad to be in the hospital, but still rather dazed. (And his Dad had picked him up the day before, so I knew he was in good hands.) They didn’t let me eat, because they had two more tests scheduled. This was an MRA of my neck and a TEE (transesophagal echocardiogram?) of my heart. For the TEE, I had to swallow an ultrasound probe, so they could get an ultrasound of my heart taken from the esophagus. They were still looking for a reason I’d had a stroke. Oh, and they sedated me for the TEE, so though I remember the unpleasant experience of swallowing the tube, I don’t remember anything else about that procedure.

Anyway, the good news was that my heart is strong and healthy. However, the MRA showed the cause of the stroke. I’d had a Vertebral Artery Dissection. The neurologist described it to me as a brusing of an artery in my neck.

I immediately made the connection with the lowgrade headache I’d had for the last four weeks. I had noticed one thing about it that was different from my other headaches — I was super sore in my neck, right behind my ear. I also remembered how my neck had been hurting pretty consistently since ALA, when I tried to sleep on the plane and slept in a bad position. (That decision not to bring my neck pillow was a bad one!) I had chalked the headaches up to lack of sleep, but I now think it was a bit more than that!

That second day had some additional drama in that my roommate really wanted to be discharged. She had tickets to see Hairspray, and she explained to the (male) nurse that it was super important for her to really enjoy what was left of her life, so she would probably leave whether she were discharged or not. We were all very happy when she was indeed discharged!

Now that they knew what was going on with the stroke, they had me on a Heparin IV and Coumadin pills. They said I would stay in the hospital until the Coumadin was at a therapeutic level. Fortunately, I hadn’t had any more numbness or tingling since the first day. I had decided that in the hospital was a good time to stop my caffeine addition (three caffeinated drinks a day), and I had only had one meal Thursday and Friday anyway.

But Saturday and Sunday were taken up with awful headaches. I took as much morphine as they’d give me, and then they switched to Dilaudid. I felt better Monday, then started having the awful headaches again — throbbing, super-painful headaches that went away after about ten minutes — but then came back again. After a very bad day with that, the doctor reasoned that the Dilaudid might be causing the headaches, and switched to Percocet. After about a day, those super-intense headaches completely disappeared, thank God!

So from there, it was a matter of waiting for the Coumadin to get to a therapeutic level. I didn’t have a lot of energy, but managed to do a little walking. Dear friends came at different times, and I also got calls from friends, so I felt loved and supported.

Finally, on Saturday, August 6, my 10th day in the hospital, I got to go home!

I began writing Sonderbooks 10 years ago this month! (Wow! I just realized that!) It began as an e-mail newsletter of book reviews. I noticed quickly that I got the most reactions from reviews that included my personal thoughts about the book. Later, I made a website, sonderbooks.com, and finally in 2007, I added a blog. I figured the Sonderbooks blog would be for the book reviews, and I added this Sonderjourneys blog for more personal thoughts. At the time, I was thinking of all the traveling and picture-taking I did while living in Europe. A blog would have been a perfect way to talk about all the castles I visited.

However, I don’t travel so much any more, and when I do, it’s often book-related. I decided to blog about this year’s ALA Annual Conference on my Sonderbooks blog, since the whole event was about books.

But Sonderjourneys is a good place to blog about life journeys. My last entry was my Christmas letter at the end of 2010. As you can tell, I was hoping that 2011 would be a happy start to a new life as a divorced woman.

And, yes, it has been good. Early on, I had some rather annoying trouble with ovarian cysts. Didn’t feel much like blogging about them. But ALA Annual Conference was fabulous, so I put that in the Sonderbooks blog. I did finish my book and have been sending it out to agents. I also finished a second book that includes my passion for math — a book about using math to make codes with colors and patterns. I’m very happy with it, but I still want to find an agent who likes my fiction, so I’m starting by sending out the novel.

I’m also super pleased to be back at the library. I’m enjoying the big beautiful regional library where I work now. I’ve been learning all the resources in the Virginia Room at our branch and researching my own genealogy and having a lot of fun with that.

And I’m particularly looking forward to going to my brother’s wedding the last week of the summer in Oregon — or at least I really hope I can go!

Because last week I had a stroke.

So I figure that recovery may end up being a fairly big journey. Time to blog about life again.

First, yes, I am young for a stroke. I’m 47. Here’s a wikipedia article on vertebral artery dissection, which is they think what started mine. They’re not sure what caused the vertebral artery dissection.

My personal theory involves wondering if something got started on the trip to ALA. My headaches (which I’ve had all my life) were doing unusually and amazingly great until I went to ALA Annual Conference. Now, I didn’t get enough sleep during the conference. I also slept badly on the plane — with my neck at a bad angle that set it aching. And then I carried around big heavy bags of books. I remember that hurt more than it felt like it should have — from my shoulder all the way through to my neck.

Anyway, I started with a lowgrade headache that lasted four weeks and wasn’t affected by anything I tried taking. A few things like Vicodin allowed me to sleep, but then the headache would be right back where it started. I found that working through it seemed to work better than staying at home lying in bed — if only for the distraction value. When I laid in bed with nothing else to think about, I felt worse than when distracted by questions to answer and the like. But some days, it was hard to face work, and it was always hard to get out of bed with a headache.

So last Monday, I went to work with that same lowgrade headache. The pain wasn’t any worse than it had been, but I was finding it very difficult to concentrate. I was thinking about asking to go home (but not wanting to use the leave), but went ahead and had dinner and was sure I was going to make it through the day.

Then — just sitting calmly at the Information desk, in between customers, simply talking with my co-worker — all of a sudden I was hit with incredible dizziness. The room was spinning. I could hardly see straight to close the windows on my computer of my e-mail. (I think I got one window closed and then gave up.) I put my head down, and my co-worker came back from answering a patron question and then helped me walk to the back room and lie down on the sofa. I couldn’t walk in a straight line and the room was still spinning.

I was hoping that lying down would take away the dizziness, but it just did not. Any movement of my head whatsoever sent the world spinning again. I was also in a cold sweat. After 5 or 10 minutes I got to thinking about what I’d been told about birth control pills putting a person at higher risk for stroke (I’d been on birth control pills for the ovarian cyst problems.), and asked my boss to call the paramedics.

When the paramedics came and asked me to do something that involved moving my head, I began vomiting up my dinner. This was not fun, and quite freaky. I’ve had hundreds of migraines in my life, but never with vertigo like that.

And riding in the ambulance was nothing as fun as it used to look on my favorite childhood show, Emergency! The movement made the dizziness worse, but they did give me a shot of an anti-nausea drug in my IV. The dizziness stopped right about exactly when the doctor came to see me in the emergency room, wouldn’t you know it!

They did a CT scan and an EKG. They did some neurological tests and I heard them say that markers for a stroke were negative. Everything came back negative. So we were thinking it might be some disturbing new variation of my migraines. I was supposed to follow up with a neurologist. I found a nice friend willing to drive me home. (Thank you, Marilynne!)

The next day, I was pretty out of it. Now I was not feeling like pushing myself. I still had a headache and felt pretty yuck. I didn’t even have the energy to make the doctor appointments I needed or get the prescriptions filled. Fortunately, I wasn’t having any more nausea or dizziness.

On Wednesday, I still wasn’t feeling great, but I did manage to call and learn that Tricare wanted me to make an appointment with my primary care provider before I could make one with a neurologist. So I made an appointment for Thursday morning. Another friend (Thank you, Kathe!) took me to pick up my car at work, and I told them that I would hope to come to work after the Thursday morning appointment. I got home after picking up the car and went to sleep, but otherwise did think I was feeling better, though I still had the headache.

Thursday was when everything hit. I’ll write more in another installment…

Life is interesting, isn’t it? I couldn’t have predicted any of this at the start of the year. But God does continue to feel near — in a way He never did before the whole awful divorce journey. One wonderful verse he’s given me is Hosea 4:17 — “Therefore I am going to allure her; I will lead her into the desert and speak tenderly to her.” Sometimes, when God leads us into the desert, it’s so we’ll hear his words of love more clearly. May that happen here.