It’s time for Project 52, Week 47!
47 weeks ago, on my 52nd birthday, I began Project 52. Since there are 52 weeks in a year, each week I’m taking one year of my life and blogging about it. This week, I’m covering the year I was 47 — June 14, 2011, to June 14, 2012.
Last time, I covered the start of Year 47, when I had my cerebellar stroke.
I have often laughed at myself for saying, at the end of 2010, that 2011 couldn’t possibly be worse than 2010 had been. I was tempting fate – because then I had a stroke! But the truth was, having a stroke (at least one that I survived) wasn’t even close to as bad as my divorce. And I’d gotten RIF’d in 2010 as well.
And, believe it or not, there were good things about the stroke. It is no small thing that it really took my mind off Steve. My journals at the start of 2011 were still all about Steve and still praying that God would work in his life and he’d have a change of heart. Well, when I had the stroke, I had other things to think about.
I spent a lot of time on sick leave that summer – which my co-workers generously donated – and I got lots of quality time with my son Tim, the last summer before he graduated from high school. Not to mention that after the year I’d had, having lots of time where I just needed to rest and get well was good for my mental health.
Now that year ended up having a whole lot of great things happen. But I think I’d like to talk a little bit first about the recovery process, which extended throughout the year and beyond.
I did not have the stroke because of lack of fitness or high cholesterol or anything like that. I had the stroke because of a neck injury, a vertebral artery dissection. However, having the stroke destroyed my level of fitness. (I finally worked on that a couple years later when I moved into this home and started a walking program. But for a couple years, I was pretty out of shape.)
They automatically put me on statins in the hospital as soon as I had the stroke, before they’d figured out why. A few months later, after my cholesterol tested to be super low, I quit taking them. My stroke didn’t happen because of high cholesterol. Protocol for “regular” strokes didn’t fit my case.
Cerebellar strokes only make up 3% of all strokes that happen. Honestly? I don’t think the medical community knows a whole lot about them. (And a lot of them don’t get diagnosed in the first place.) I was evaluated in the hospital, and they decided I didn’t need physical or occupational therapy. I could walk a straight line, and was doing fine. Or so I thought.
But there were two problems I was up against. One was dead brain cells in my cerebellum. The other was a blocked vertebral artery – which later healed to be a teeny-tiny vertebral artery. Some blood does get through. We have two vertebral arteries, so they generally don’t intervene in a case of vertebral artery dissection – the blood goes around the other way. I was on Coumadin for six months to keep from getting any more clots. After six months, they figure however much healing you got – that’s your new normal.
It did hurt to turn my head to the right for a good year after my stroke. Though it gradually got less and less and now it’s fine. For a long time, I noticed it when I drove and tended to turn my whole body if I wanted to look right. It also hurt for a few months to hold a telephone with my right shoulder while typing on the computer. Something I used to do automatically.
I don’t know why my neurologist kept trying to find other explanations for my neck pain, like arthritis in my neck. Really? When you know full well I had a neck injury and still have a teeny-tiny right vertebral artery, and the pain is only on my right side, and precisely where the right vertebral artery is? Anyway, since about a year after the injury, that pain when turning my head is completely gone. Ummm, it wasn’t arthritis.
I still to this day will occasionally wake up with neck pain if I have been sleeping with my right side up. What I think is happening is that I’m lying so the blood can’t really get through the left vertebral artery and wants to go through the right one – and that artery is too small. Whether or not my theory’s true, usually if I readjust how I’m lying down so that the left side of my neck is on top and unobstructed, the pain goes away. (Though it does freak me out if the pain is strong or if it lasts through the day, like it did a couple weeks ago.)
I do get far more right side headaches than left side ones, since the stroke. If the pain is centered in my neck, behind my right ear, I do start to freak out.
The damage to my cerebellum has been a little harder to recover from. The cerebellum is the center of balance. That summer, if I stood for more than a few minutes, I’d start to feel woozy. It wasn’t dizziness like the room-spinning that happened when the first stroke hit. But “dizziness” was the best word I could come up with to describe it. Generally feeling off-balance. I didn’t like to call it “light-headed,” but “heavy-headed” fit well.
Basically, I think my brain needed to make some new connections for keeping my balance to replace some that had been lost.
I do remember that it was much worse shortly after the stroke than it is now. I was working with the babies in the church nursery, and I was holding a baby when I stepped over the side of a play fence – and almost lost my balance and fell. (I took a break from working in the church nursery.) But my sense of balance slowly recovered.
I think it’s interesting, though – to this day I can’t stand and sing in church, in an auditorium with a slanted floor, without holding onto the seat in front of me to get extra balance cues. I can do it – but I will get really dizzy. Also, I don’t close my eyes during the singing, because that’s a bad idea, too. (I definitely wish they’d let us do more singing from our seats.)
And after I’d gone back to work, I would get some dizzy spells that really scared me. I’d get a sudden wave of severe dizziness – and then I’d have that wooziness and feel awful. I went into the ER quite a few times about episodes like that. The fact that the hospital had missed my first stroke made me extra jittery. But I couldn’t get them to take me seriously when I clearly wasn’t having a current stroke.
Finally – months later – I went to see a top neurologist at Johns Hopkins. He told me that my migraines had changed to vestibular migraines. I was a little skeptical at first – but as I watched how it worked, that totally fit. An initial wave of dizziness was a new kind of aura – and then that weird sick wooziness was replacing the headache. The pain level wasn’t nearly as bad as a regular migraine, but it really did act like a migraine – just with dizziness instead of pain.
Unfortunately, Maxalt didn’t work well for vestibular migraines, so I did get some super long ones at times. But fortunately, Zoloft did help prevent them – once I was basically healed from the stroke. And in 2017, menopause seems to have mostly cured both my regular migraines and my vestibular migraines – though just last week, I made myself carsick by not paying attention when I was driving a winding and hilly road – and started a days-long vestibular migraine.
In general, I get motion sickness much more easily now, and it hardly takes any alcohol for me to feel tipsy. In fact, that may be a good description of this “dizziness” I get – how your head feels when you’ve had a little too much to drink. But now even the slightest bit of alcohol can set off a vestibular migraine for me. (And a doctor I mentioned this to said it makes sense, because alcohol affects your cerebellum. And I’ve already got a deficit in my cerebellum.)
Though I do remember that one thing that helped the dizziness get better that first summer after the stroke was when I stopped taking blood pressure medicine. If your blood pressure is too low, it can cause dizziness. Well, mine without medicine is slightly elevated – but I was getting dizzy a whole lot less than on the medicine. My theory is that it takes a little extra pressure to get the blood through my teeny-tiny artery. I don’t know if I’m correct, I just know I feel better when I’m not taking blood pressure medication, and my blood pressure isn’t super high anyway.
Oh, the other weird thing I discovered after the stroke was I started getting double vision – but only when I look up and to the right. At first my neurologist thought that meant I’d had another stroke. But when I saw a neuro-ophthalmologist, he said it was Brown syndrome, which is generally thought to have other causes. I’m a little skeptical. It’s the eye on the side that would have been affected by the stroke, and the nerves to the eye are super close to the area where I had the stroke. But anyway, I can solve the problem by either closing one eye or turning my whole body to the right so that my left eye doesn’t have to turn. This is why I try to always sit on the right side in an auditorium – so I’m looking to the left. I also prefer to talk to people to the left of me. It’s possible to have surgery that sometimes works to correct this problem – but I might as well just close one eye.
At the same time I noticed that, I noticed that I see halos around lights. But it turned out that’s truly not from the stroke – no, I have a genetic progressive eye disease, Fuchs’ syndrome. But here’s hoping it will progress slowly enough that I won’t need surgery for it. I guess I was now hyperaware of how my body was working.
Anyway, I slowly started back to work. On my first week back, in fact, we had an earthquake! And I was super-relieved when people started milling around and I knew that the building was moving for them, too. For a second, I’d thought I was having another stroke! That’s what it was the last time I’d seen the building move. As a California girl, I was very proud of myself for getting under the table by the stairs (and away from the shelves, where I’d been heading to get a book for a customer). I didn’t tell anyone to join me – I just got under the table and thought about how I was doing it right and everyone heading for the exit was doing it wrong.
It was months, though, before I made it a whole pay period where I worked the entire pay period. Many months.
But first, when I thought I should be back to work – it was time to go to Oregon for my brother Robert’s wedding. ALL my siblings were going to be there! And I’d get to see Jade! (Then called Josh.) Josh and Peter and Josh’s girlfriend Sunny had all moved to Portland while I was in the hospital. They were rooming together. My youngest sister Melanie had moved to Oregon at the same time, for a job with Intel. And Robert had moved there the year before to be near Laura, his bride.
And I got to stay at Grandma’s House! My Aunt Susie still lived there, and let Tim and me stay. Oh my, it brought back old memories! And Aunt Susie was kind enough to let me do a lot of resting on that vacation.
It was great to see Josh! And for the first time, I visited Powell’s City of Books in Portland.
Tim and I took a day trip up into Washington State, near Seattle, to visit Evergreen State College, and I got another flood of nostalgia. I remembered the road from Oregon to Seattle – at least those green bridges – from 40 years before!
We saw a deer on campus, which would have been enough to hook me!
Forest in Washington State fits my idea – formed in childhood – of what a forest should be.
Later, a bunch of siblings and cousins and an aunt went hiking with us at Silver Creek Falls.
Here’s my brother Randy and his wife Vickey.
Marcy and her husband John:
Tim and me:
And here I am with all of my sisters!
Finally, Robert and Laura’s wedding was so beautiful!
Here’s my whole family with our new member, Laura!
All my siblings:
And here we are in order, from oldest to youngest!
I love this picture of Mom and Dad. Mom seemed to pretty much know what was going on at this time.
Here’s the whole family with the children and spouses who were able to come to the wedding.
My sweet kids!
With Dad and Wendy:
Robert and Laura had a Disney “Tangled” theme, which could have been hokey, but turned out magnificent. This picture shows off their great outfits.
All my brothers:
All of us siblings:
All of us sisters:
Becky, Wendy, and Abby being especially charming!
So – Year 47 started with something to thoroughly get my mind off Steve, then a forced rest time and quality time with my son. Then I had a wonderful vacation to thoroughly refresh and reset myself. I was ready for a surprisingly excellent year….