home is where my story begins...

I don’t have any pretty pictures to go with this post, except the iphone photo I took of the view from my hospital room.

You read the title of this post correctly.  I had a stroke at 44 years old. My stroke wasn’t the typical stroke that our grandparents had.  Specifically, I had a Cerebellar stroke with vertebral artery dissection.  In the hospital, they told me that this makes up 1% of all strokes.  Basically, I won the stroke lottery!

Here’s a little of the backstory first:

***Disclaimer:  It’s really hard for me to read, write, and type.  I’m hoping this makes sense and I didn’t make too many spelling or grammatical errors!  I’m just putting this out there and asking for grace.***

A few years ago, I had back/neck surgery to fix a herniated disc.  They inserted a cadaver bone between C5 and C6, in my spine, and fused them all together.  It fixed most of my intense neck pain, but I had come to the realization that I would always live with some pain.  A few weeks before my stroke, my neck pain really intensified.  I waited it out, hoping it would go away, but it just got worse.  Luckily, I had an upcoming appointment with my neurologist for Botox injections related to my migraines.  In addition, I had about 10 days in a row of headaches before my appointment.  I told my neurologist about my 10 days of headaches but we attributed it to the fact that the Botox had worn off.  She was also convinced that if we focused a bit more of the injections into my neck and shoulder, the pain in my surgery area would subside.  I had about 40 Botox injections in my scalp, neck, and shoulders, and she sent me on my way.  That was on a Thursday.

By the following Monday, I couldn’t stand the pain anymore.  I made an appointment with the spine specialist I had seen many times before, but they couldn’t get me in until Friday.  I  also went to the walk-in clinic after work.  They read up on my history of back problems and the doctor said, “I know you have a very long history of back problems, so what are you hoping that I can do today to make this better?”  I told him that I’d really like him to schedule at MRI so that I could get some answers on my Friday visit.  That request was a no-go because he was sure the other doctor would want specific images that he didn’t know to request.  I also said that I needed to do something about the pain so I could make it to Friday.  They gave me some pain meds and an anti-inflammatory, which worked fairly well and I could make it through the day of teaching before collapsing onto the couch.

This was a SUPER exciting week for me because I was going to a three day workshop in Seattle.  This wasn’t any workshop.  This is my DREAM workshop about Reggio Emilia inspired early childhood education.  To most people, I know this doesn’t sound like an exciting topic, but this is #1 on my list of learning I’d like to do.  The conference was Thursday, Friday, and Saturday from 9-5.  I paid over $500 out of my own pocket to attend and had to use my “personal days” that our district gives us.  Thursday was great and I made a few new friends from Wisconsin to have lunch with.  I was going to be a little late to Friday’s conference because of my appointment with the spine doctor, but I planned to be in Seattle before the tours of early childhood centers and the 100 Languages of Children exhibit took place. (Ha!  Little did I know!)

Now, here’s the stroke story:

I woke up feeling pretty decent.  My back wasn’t throbbing and I didn’t feel like crying because of the pain… that makes it a good day in my book!  I got in the shower and turned the heat of the water up a bit to loosen my neck muscles.  I had just put some conditioner in my hair (this is an important part of the story) and started tipping my head to the right and left to see where the pain was the worst.

BAM!!! I’m telling you friends, when I say I got a little dizzy, I really mean that it felt like a 10.0 earthquake hit my house and I was spinning in circles.  This dizzy spell was not like any other dizzy spell I’d ever had in my life.  I leaned up against the wall because I thought I might fall through the glass shower doors.  When the wall didn’t even feel like it could hold me up, I sat down on the bench in the shower.  At that point, I stared dry heaving (another thing that I’ve never experienced).  I still thought I might fall over, so I got down to the floor of the shower.  At this point, I was thinking, “No!! There is no way my husband is going to let me go to my conference now!” I was still spinning and dry heaving but I had knocked the shampoo bottles over in my dizziness.  I was worried that I actually would throw up, so I started trying to put shampoo bottles back so I wouldn’t throw up on them. (Seriously?  Who tries to clean as they are having a stroke?)  At that point, I decided that I could use the shampoo bottles to try and get my husband’s attention.  He was working downstairs in the office.  I started pounding the shampoo bottles on the walls of the shower, but he didn’t hear me.  (He says, hindsight, it sounded like I was trying to get my makeup out of a bottle and was banging it on the counter.)  Somewhere along the way, I had turned the shower off.  I knew I needed to call 911 but I couldn’t even crawl out of the shower.  There was no way I could make it to the phone.  I kept banging and finally I tried yelling for my husband.  I felt like I barely even spoke his name, but apparently it was loud enough for him to hear me.

My husband came upstairs and I was still in a puddle on the floor of the shower.  I told him to call 911 because I had a really bad dizzy spell.  You know when you have those times when you are thinking, “Should I, or shouldn’t I, go to the doctor?  I feel pretty bad, but maybe I’ll be ok.”  Well, this wasn’t one of those times.  This was big and I could tell.  The whole time I was on the floor of that shower, all I could think was that I needed to get to a hospital and make this stop.  My husband told me that they were on their way and he helped me crawl out of the shower, onto the bathroom floor, and got some towels for me so I could warm up.  This was the point where I yelled, “Oh, my gosh!  Get me some clothes!”  I had just had a stroke but, I was going to get my bra and underwear on, darn it!!  Come on, now, you all know you are with me on this!

I was still flat on the bathroom floor (with bra and underwear on… phew) when the paramedics got there.  They knew they didn’t want to move my neck, but I tried really hard to convince them that I could put on yoga pants and a sweatshirt without hurting my neck.  After multiple attempts, I decided that this was not going to happen.  Then, I realized that I still had conditioner in my hair.  Do you know how gross that would be if I didn’t get it out?  I was really hoping that they would let me rinse my hair when I said, “Oh, no.  I didn’t rinse the conditioner out of my hair.”  The nice paramedic got a towel, put water on it, and started trying to get the conditioner out.  Not only that, but he also started talking in a French accent and was telling me I was at the spa.  I think this was the only point I laughed during the whole ordeal.  It lightened up a tense situation.  I convinced them that I could walk down the stairs and didn’t need to be carried.  They let me put a robe on, and I was on my way to the hospital in the back of an ambulance.

Thank God for medicine, because in the ambulance they gave me morphine for the horrible pain that had started in my head, anti-nausea, and anti-dizzy shots.  I’m still not sure how they managed to get an IV going in my arm, while in the back of a moving ambulance.  Those guys are amazing.  I got to the hospital and they put me in a room in the ER.  I knew this place VERY well because my mom had been in and out of that same hospital for the 4 weeks just before.  (That’s another VERY long story.)  I swear my husband beat the ambulance to the hospital, but I must have fallen asleep, because he told me he didn’t.  They gave me something for anxiety and told me that I was going to the MRI waiting area.  That area was so great because Winnie the Pooh and Friends appeared on the wall!  (You know you’re a kindergarten teacher when you hallucinate storybook characters.)  My husband said I was gone for 2 hours.  I remember nothing else, but Winnie the Pooh and Friends, and then waking up back in the room with my husband.  MRI’s are very loud and tight.  You’d think I would remember having an MRI on my head and neck, but nope.

We waited a bit longer and the doctor came back in.  He said that when people come in with dizzy spells, they always have to check this one area of the brain.  He said that it never comes back showing that someone has had a stroke, but it’s protocol for them to check.  He said, surprisingly, my MRI showed I had a stroke.  This type of stroke is so uncommon that it makes up only 1% of all strokes.  I looked at my husband and said, “We can just chalk this up to the fact that I get really weird stuff.”  If you’ve known me for any amount of time, you know that I get anything and everything that comes along when it comes to injury and illness.  Sometimes, I wonder if people think I’m a hypochondriac.  But, then I go to the doctor and they tell me I have Swine Flu, Strep (again), a gene mutation that makes me sick, a herniated disc, or mold growing in my sinuses causing a massive breathing condition.  You name it, I’ll come down with it.  It’s how I’ve been for my whole life.

Once I was admitted, the tests started.  They needed to figure out why the stroke happened and if I was at risk for this to happen again.  They told me that the stroke was in the Cerebellar region of the brain.  That’s the back part of the brain, close to your neck, that is in charge of balance, coordination, and movement. They told me that I had earned at least 48 hours in the hospital.  I tried watching tv to pass the time between tests, but I couldn’t concentrate that long.  I couldn’t focus on magazines either.  They came in every 4 hours, night and day, to do mental and physical tests with me.  Many of the tests were the same tests they do for people with DUI’s (so they told me… I’ve never been in that situation).  They had me touch my nose and then touch their finger.  My right side was fine, but my left side was a bit sloppy.  I could never actually touch their finger and always missed by about an inch.  They had me read out loud, which was really hard for me.  The word ‘know’ was always a challenge and the words didn’t make sense to me.  They had me do mental math problems which I totally nailed, except for the multi-step problems that they were giving me at 2am.  At that point I said, “It’s 2am! Nobody does mental math at 2am!”  When the occupational/physical therapist came in, I got to go for a little walk.  I was a bit wobbly, but did ok.  If I walked and turned to look over my left shoulder, I’d get really dizzy and start to sway.  I did ok on stairs.  Basically, walking, reading, and moving my head were my issues.

After a few more tests, they saw a vertebral artery dissection.  They told me that at some point, an artery in my neck got a tiny tear.  That can happen by picking up the garbage to go out, grabbing a heavy purse wrong, lifting a box, a car accident, or any other thing that happens every day and we think nothing about. They think that my neck pain was totally different and not related to my stroke, but when I was rolling my neck around in the shower, the blood clot on that artery came off and caused a stroke.  I told the doctor that I had been suffering with 10 days of headaches but he didn’t think it was related.  I had fallen and sprained my ankle two weeks before, but he didn’t think that was related either.  One really weird thing, they also told me wasn’t related but I don’t believe them, was that I was having a twitching problem for several months.  Any time I sat with my eyes closed, I would jerk.  It was kind of like that feeling you get when you fall asleep but then you dream that you are falling off a cliff, but mine happened every 10-15 seconds. My husband said it happened all night long too. I had talked to many doctors about it, but they all said it was normal.  I’m telling you, this was not normal.  It would happen every 15 seconds and start immediately after closing my eyes, even when I wasn’t tired or trying to fall asleep.  Well, here’s the weird part.  After my stroke, they disappeared.

So, where am I now?  When I left the hospital, the neurologist told me that I was not allowed to do ANYTHING for several months. No dishes, no vacuuming, no changing the laundry, no cooking, no gardening, no activities that get my heart rate going, and if a paper fell on the ground I was not allowed to pick it up.  I was allowed to do self-care and after a week I could stroll like a grandma, outside, with supervision. There was one teensy tiny problem.  We had booked a vacation for Palm Spring and were scheduled to leave exactly one week after my stroke.  I explained that this was a relaxing vacation and not a sight seeing vacation.  I promised to do nothing but sit by the pool and relax.  He gave me the ok, with many rules to follow, and I did get to enjoy a week doing nothing by the pool.  Let me tell you, doing nothing in the sun is MUCH better than doing nothing in the Seattle rain.  We got home last weekend and I’m doing ok.  I need a lot more sleep than usual, I get headaches, and still get dizzy spells.  Walking for any length of time is a trigger for headaches and dizziness.  My left side is still clumsy, but not nearly as bad.  Typing, pushing buttons with my left hand (that’s really hard for me), and playing guitar are my prescription for therapy.  Reading is still hard.  Sometimes I forget my words as I’m talking or the wrong words come out of my mouth. I can watch a full tv show at home but I can’t go to a movie.  I tried that in Palm Springs and I spiraled downhill pretty fast afterward.  They told me I will never be able to go to a chiropractor and will never be able to put my head in the shampoo bowl at the hair salon.  I will be taking aspirin for life.  I am wearing a soft neck collar, right now, to remind me not to move my neck in any direction.  The artery needs to heal and any movement can cause progress to go backward or even another stroke.  My personal neurologist was much nicer than my hospital neurologist.  My neurologist told me that I needed a full month of doing absolutely nothing and then we could revisit my orders.  The other guy had told me “several” months.  I’ll be out of work for two more weeks, but if I’m being honest, I think they’ll probably tell me I need to stay out a bit longer because of the headaches and dizzy spells.  Who knows, maybe I’ll be as good as new in two weeks and ready for a class full of kindergartners!  I’ve been pretty amazed by my progress so far.  The brain and its ability to heal is fascinating.

When things like this happen, you are really reminded how much people care.  I got cards, flowers, and well-wishes from people I hadn’t seen in years as well as close friends and family.  Facebook was flooded with prayers and people just reaching out to say they were thinking of me.  I can’t say it was worth having a stroke for, but I really do appreciate people reaching out.   I’m on the mend, and that feels like a really good thing!  My husband and kids are picking up all of the slack while I’m on do-nothing-orders.  I know it probably drives them all crazy, but I love them for it.

Thanks for reading!  I’ll be here doing nothing but thinking happy thoughts!