Ten Years Since My Stroke

Me and my sister, Cherie.  2010. 

Showing off my lopsided grin. 

This is when my left side still didn't work well.

 2020 marks 10 years! 10 years ago I had my stroke. I have learned so much during this journey. I have come a long way.  My biggest lesson has been that I can keep improving. I can keep getting stronger and find a little bit more of the old me. Never think that a stroke has defined your abilities.

My biggest improvement is with my physical stamina and my left leg and arm strength. This year I started going on walks which led to hiking again for the first time post stroke. It hasn't been super far and the ground has to be fairly smooth, but I am hiking! I walk about 3-5 miles each time. My daughter, Tiffany, says that she thinks I am the fittest she has ever seen me.  What a wonderful compliment! 

I am also getting stronger with my balance. I have focused on yoga to help with this.

More improvements include: I am driving a little farther on my own. I'm getting a little braver. I can wear a little a bit of jewelry now. I've learned more coping techniques to deal with my sensory overloading. 

My daughter-in-law, Brianna, has told me that she can no longer tell that I had a stroke and she definitely could when she first met me 6 years ago. I no longer explain to people that I have had a stroke. My stroke does not define me.

I still have things to work on. Some things may never improve, like my arm. My focus is on what I can improve. I tell people: I am the turtle, not the hare. And like the turtle, I keep moving forward.

2020 has been a hard year in a lot of ways, but I am grateful for the quiet time, the personal time I have had to focus a little more on my healing.

My mother-in-law, Nancy, and me with our 2010 injuries:

She had a partial leg amputation. 

I had a stroke and starting wearing a glove and jacket to keep my arm warm. 

The warmth takes the edge off the pain.

2020: Me learning yoga.

2020: Me on a walk in Southern Utah.

Yep, still wearing the glove. It's become part of my fashion.

And I started wearing a watch this year. 

On the right arm, but I'm wearing a watch!

Chapter 18: A Child's Insight

I love kids.  I love their perspective on things.  And they can always make me smile.  Things are not quite so hard after you’ve talked to a child.

This last Sunday while walking in the church hallway, a little girl asked me,  “Why are you wearing a glove?”

“My hand has a problem.  It doesn’t work right.  And the glove helps it feel better,” I replied.

She looked at me, and you could see her thinking about this.  Then she gave me a big smile.  And said, “Like Elsa!”

I couldn’t help but smile back at her clever idea.  “Yes, like Elsa.”

Thanks, my unknown little friend.  Thanks “Frozen.”  Thanks Disney.  

I now have a new and much funner reason to be wearing a glove.

Chapter 17: Challenges, Part 2

Earlier, I mentioned that there are two main challenges I face from my stroke.  I talked about the emotional anxiety and just dealing with sensory overload all too often.  After months of putting it off, I am ready to share my other elephant.

A couple weeks after I had my stroke, I started noticing pain in my left arm.  It goes from my fingertips to my shoulder.  The best way I can describe the pain is an intense stinging feeling and it penetrates and becomes a deep ache all the way to the bone. 

I would compare the stinging to what you feel when your fingers start to warm up after being outside in the winter.  In fact, my arm and hand feel cold to me all the time! But, if you touch my arm, it really isn’t cold to the touch. 

At first, I thought it was my arm “waking up” from the stroke.  It was the part of my body hardest hit.  I couldn’t lift my arm.  I couldn’t use my hands.  It just hung there.  So when I started feeling something, I was excited.

I mentioned my pain to my Occupational Therapists.  They didn’t have any answers.  It wasn’t because my arm was waking up.  They did try several heat treatments with warm paraffin or a mud clay wrap.  These eased the intensity of the pain, but weren’t cures.

As the months of therapy went on and I regained a lot of the use of my arm and hand, the pain didn’t ease at all.  I mentioned my pain to my neurologist.  He wasn’t sure what it was, but started prescribing different medications to try to help with the pain.  We would try one thing…no good.  Then try another.  Some, like pills for nerve damage, just made the pain more intense!  I think it was because my nerves are fine, it’s my brain that’s messed up.

I was frustrated by the lack of help from my doctor. I was in so much pain and just wanted someone to give me some answers.  So Larry started searching online for some answers.  He typed in my symptoms and linked them to strokes and then to hemorrhagic strokes and finally found a diagnosis!

He had me read the article on Chronic Post-stroke Pain (CPSP) or Thalamic Syndrome.  As I read, I soon discovered what an elite group I'm in!  Hemorrhagic strokes account for 13% of all strokes.  So, not too many people get bleeding strokes.  Only 8-10% of stroke victims suffer from CPSP.  I’m in a small group within an even smaller group of people. (No wonder my doctor didn’t know what was wrong.)  I read that you are more likely to get CPSP if your stroke was on the right side.  Yes, that’s me!  CPSP occurs if you damaged your thalamus, the sensory area of your brain.  Yep, another check!

Then, I read the symptoms: burning, aching, and prickling.  Constant pain.  Aggravated by temperature changes.  Feels more pain when emotionally stressed or cold.  This was also true for me.

I had found my diagnosis!  Sadly, as I went on to read that there isn’t a cure for this.  No medication really helps because the problem is with my brain.  It has a big hole in it and it is misinterpreting messages.  My brain thinks there is something wrong with my arm when in reality, physically my arm is fine.  I guess you could compare it to amputees who can still feel the “ghost” arm.  And with CPSP, my brain could send even more messed up messages down the road and make the pain feel get worse! 

As I am trying to find the blessings in this challenge, here is one… thankfully my pain seems to be staying the same and not getting worse.  And I’m thankful to know what it is.  It’s amazing how comforting it is just to have an answer to what I am facing.

My challenge with this facet of my stroke is learning coping techniques and coming to terms with knowing it’s probably here to stay.

My biggest help with this is staying warm.  I have learned that warmth takes the edge off the pain.  It is still there, but not as intense.  

I now take baths to soak my arm every day and often more than once a day depending on the pain.  So I'm very clean. ;-)

I have started my own little fashion trend. (Okay, Michael Jackson started it, and I am continuing it.) I wear a glove on my left hand all day!  Yes, even in the summer. 

After much experimenting, I discovered that the best gloves for me are cashmere.  For one, they are very warm.  Two, I can find them in longer lengths and it’s my whole arm that needs help, not just my hand. And then, I also had to address the sensory part of my stroke.  Other gloves felt too tight, I was aware of them and so they drove me nuts!  I am slowly getting quite a collection of gloves in all colors.  Who knew they would become my new accessory? 

Some of my new fashion accessories.

I bought two electric blankets.  One is a throw to wrap around my arm while I am watching TV or trying to work on the computer downstairs. The other is for my bed to help me sleep at night.  I’m most aware of the pain at night; I think because there are no distractions.  So I often lay in bed with my blanket wrapped around my arm waiting for the sleepiness to overcome the pain awareness.  It’s quite the battle sometimes.

I don’t know why this challenge in my stroke is so hard to write about.  It has nothing to do with emotions and anxiety, really.  But, I guess because it makes me cry.  It never shuts off and wears me down; some days I just can’t deal with it.  It’s hard facing something that you know won’t go away.  

So that is another coping technique: 
Don’t look at how long you have to deal with it, just deal with it one day at a time.

Our photographer caught a picture of me in my glove as Larry carried me to our next photo site.

Another picture of me and my matching glove.

Chapter 16: Re-train Your Brain...maybe

Since my stroke, as I learned how to walk again, as I learned how to use my arm again, as I learned how to live in my new life, I was often told we are re-training your brain.  The pathways that knew how to do these activities had been severed.  So we needed to make new pathways. 

For the most part, this training has worked.  But, I guess after 46 years of sending messages through one pathway, my brain sometimes forgets about the new pathways.  This mostly happens when I am tired, either physically or emotionally.

If I ever wake up at night needing to go to the bathroom, my brain is half awake. I find myself staggering like a drunk, trying not to fall because my left leg has forgotten how to walk.  It has taken the wrong pathway.  Since my stroke, I usually wake up to go to the bathroom almost every night.  So you would think that my brain would remember.  But, no, it’s too tired to make the new connections.

Another example is when I get emotionally overwhelmed and cry too much.  When we went to the comedy concert, as I mentioned I got way overwhelmed.  So, when the concert was over and it was time to leave, my body did not want to cooperate!  My leg dragged, my face sagged, my arm hung limply by my side.  I just wanted to get out of there and my brain had short-circuited.

One experience took me completely by surprise.  Larry and I had gone to a movie.  There was one short scene that scared me and I jumped in my seat with a little squeal.  Luckily, it was short and I recovered quickly.  So I was very surprised that at the end of the movie when I went to stand…I couldn’t!  My leg totally gave out on me.  I had to lean on Larry as I limped out to the car.  Weird.

Thankfully, these episodes are short.  My brain just needs to rest recharge and remember that, yes it has been re-trained.

Chapter 15: Bizarre Experience

I mentioned earlier that since the stroke, I get overwhelmed easily.  Sensory overload. But, I also continue to try to not give up on things I enjoy.  Keep on trying, right?               

This lead to an experience I won’t try again for a while.

Larry and Devin got tickets to go to see Brian Regan’s comedy concert.  Devin invited his girlfriend, Lisa, and Larry wanted me to go.  I really wanted to go, too.  I enjoy Brian Regan, who doesn’t?  He’s hilarious and no potty mouth.  And I wanted to spend time with my family.

I decided that I wanted to give it a try.  It wasn’t music.  It wasn’t spiritual.  It wasn’t going to be deeply touching.  I kept telling myself that humor would be different.

Right off, it was overwhelming…big concert hall, lots of people.  But, I had considered this.  I waited in the hallway, away from the crowds, until the performance began.  When the lights dimmed and the warm-up act was introduced, I slipped in.

The opening comedian was good and I chuckled and smiled.  I started to relax.  Then Brian came on.  He was hysterical!  Everyone laughed and laughed, including me.

But here is where the bizarre came in…I was laughing and sobbing AT THE SAME TIME!  Who knew you could do that? The more I laughed, the harder I bawled.  I soon was very grateful that everyone was laughing so much, so they couldn’t hear me.

There was one girl sitting on the other side of Larry who noticed what was happening.  I think she watched me almost as much as she watched Brian.  Two entertainers at one time!

I didn’t leave.  I didn’t want the family to not enjoy their experience.  And finally I got to the point that I was so exhausted, that my body just shut down.  I felt a little catatonic.  It was time for my body to sleep and re-boot.

So, now I know, loud laughter is not my friend. Humor and strokes make for an odd mix.

Chapter 14: Sleep and Then Sleep Some More

After having my stroke, I was told the best healer for a stroke was sleep.  They told me to sleep often.  This in my opinion felt more like giving approval to sleep tons because I sure wasn’t struggling to get to sleep. 

Those first few weeks, make that months, after my stroke I was asleep more than I was awake.  Slowly it tapered off to a long afternoon nap and a very long night’s sleep.

I thought by now I would not need a nap, but no.  I am still napping, still sleeping the night away.  

I don’t know if this means my brain is still healing…I hope!   
But if I don’t get my sleep, I am in more pain.  I get overwhelmed easier.  I cry more. I'm no fun to be around.  I don't even want to be around me.

So I guess I just keep sleeping.  Just call me Sleeping Beauty. :-)

Chapter 13: The Stroke Diet

I may not be as active since my stroke, but with my new stroke diet I am staying slim.

My sense of smell and taste has been tweaked.  It is now slightly off.  

I can no longer trust my sense of smell.  I sometimes think something smells sour or spoiled.  At first, I used to throw those things away.  But one time I had something that I thought smelled burnt and Larry walks up to me as I’m taking it out of the oven and tells me that it smells delicious.  Delicious?  Really?

That got me to thinking that maybe it’s me, not the food.  So I often let my family decide if something is spoiled.  But, if it smells bad to me, I’m not going to eat it.

My taste has changed too!  So many foods no longer taste good to me.  My body is definitely better off for it; most of the foods that I don’t like anymore are not really good for me anyway.  I miss having those yummies.  But, why eat fattening food if it tastes gross?

For example, I used to love French fries.  The first time I had a French fry after my stroke was supposed to be a treat for me.  I took a bite, with a smile on my face and was shocked to realize it tasted horrible! 

I still remember loving French fries.  They still look delicious, so I’ll have one every now and then hoping... and, yuck!  Nasty!  Sadness!  I miss my French fries.

Another feature of this diet is poor memory.  I struggle to follow the directions I read.  If I get interrupted, that’s it.  Did I put in the salt?  Did I add all the sugar?  I can’t tell.  It’s all white!  I can’t remember what I just did.  Frustrating.  I find myself bursting into tears and give up. 

So are there any cookies in our house?  Brownies?  Very rarely.  

I can still make main dishes.  You just look at your pan and see, “Oh, I forgot the carrots.”  It’s really hard to figure out what is missing when it’s all white stuff.

I do still try from time to time.  I had an assignment to bring a dessert for a family gathering.  So I focused, kept my finger on the recipe, and made them when no one was home.  No distractions.

I took them to the dinner with my fingers crossed.  I tried one and thought, “Darn it, not very good.  I must have done something wrong.”  But Larry tried them and told me they were good.  I guess he was right.  They got all gobbled up!

So there you have it.  My new diet.  All you have to do is have a stroke or some other brain injury, find that food no longer smells or tastes good and that cooking desserts is not that fun.