Confessions of a Stroke Survivor

Okay, it's been a while!  I apologize!  I have started a post a few times but have just never made it through it.  

 For some reason, my beautiful mind keeps telling my body that I should be just fine.  Yes I am fighting a mental battle with my mind and my body.  I AM getting stronger everyday.  I DO feel much better then I did!  I just want to be all better now.  I feel like a little kid throwing a fit.... screaming... yes kicking too... you know the kind when as a mom you know they are being unreasonable but they just don't see it that way.  Well that's where I am at.  I still get very fatigued easily.  It so strange, I hit a wall, then my body is TOTALLY done... not just kind of but all the way.  If I push it then (and this is also a weird out of body experience) I suddenly begin to cry.  Out of exhaustion.  Not heavy sobs but calm tears.  I am getting better at controlling it but at first there was not control, it just happens.

That being said, I am SO very THANKFUL that this is not permanent!  I seriously have a whole new respect and outlook at those who have physical struggles.  What an amazing group of people to have permanent handicaps and remain so strong. They are truly inspirational. 

So here are some of my stroke confessions

1.  When I am tired I eat ice cream and chocolate… which leads to the next one…

2.  I'm not as skinny as I was 5 weeks ago!  Most people think it's easy for skinny people to maintain their weight... NOT SO!  I am 2 LBS away from being categorized on the BMI as overweight!  Now I have a new goal!

3.  Everyday I pray for one more day.  I have prayed my whole life.  I am often thankful for my health and strength in those prayers, but now I am thankful for the day I have had and pray for one more.

4.  My body feels 15 years older then it was 5 weeks ago.

5.  I snuggle my kiddos more then I use to.  Little things they do make my heart leap for joy.  I guess I am treasuring them more intensely.  I am so amazed that John and I made such amazing little angels.

6.   I just want to hug every elderly person hobbling by me. 

7.  Completing a triathlon seems impossible.

8.  The almost 14 years I have been married to Johnny seem so short.  I need more time with him!  I so badly want him home with me everyday.  When he is near I am clinging to him. Every hug he gives I melt into him for a little bit longer.  Every time a song comes on and he grabs me to dance, I dance.  The time we spend together is more meaningful.  I am so thankful we are married for time and all eternity.  He is my soul mate! 

 8.  I want to rekindle old relationships and magnify new ones.  I want to know you all so much better.  I want to be a better friend!

 Thank you for all the prayers, love, support and friendship!  We are so much farther ahead of where we would have been without you. 

 "Friendship is unnecessary, like philosophy, like art... It has no survival value; rather is one of those things that give value to survival." 
- C. S. Lewis

Glimpse into My Emotional World

I know I need to finish telling you all the story, but there are so many thoughts and feelings racing through me.  So today you all get a glimpse inside my emotional world. 

The reality that at 33 I have had a stroke still doesn’t seem real.  Every morning and about 1000 times a day I try and convince myself that I must have imagined all of this.  It’s usually when I am sitting still… then I get up and my body tells my mind that it really did happen.  I am weak, but only on my left side.  I want to will my body to work normal again, it shall soon, but I want it now.  I am tired, more so then after I having a baby, or after a big race, or after a long night up with a sick child.

When the occupational and physical therapist came to visit me in the ICU a day after the event, I honestly thought I would bounce right back.  One of them asked me to do a very simple remedial task.  Touch your thumb to each finger starting at my pointer all the way to my pinkie then back.  Easy!  Or so I thought.  At that moment my world turn to slow motion.  I was looking at my hand, I knew what it needed to do, but my fingers weren’t moving.  It only took about 10 minutes of practice to get it down, but that moment hit me internally.   Then they got me out of bed to walk more then just 3 steps.  It was harder then I expected.  Okay so this is where I pause in my typing, I am struggling to get it out.   My fear is this, I want to be strong, I want to be independent, I want to be an example… I knew at this point that I would have to rely on others to help me through this.  That’s a hard thing to admit for someone who never wants to inconvenience anyone. 

 All of these intense feelings of discouragement and doubt that have raced through in the last week have been completely crushed and shattered into a million pieces as I have received the love, service, kindness and concern from all of you. 

 We all have insecurities and struggles in our lives that can bring us down or lift us up.  This trial has brought such deep love and charity into my life.  I am overwhelmed with the generosity and thoughtfulness.  I am strengthened by the encouragement, visits and hugs.  I am inspired by the concern and service shared.  I feel weak and worn down and tired.  But my soul feels lifted.  I will do more for others and love deeper and take from this unconditional love that has been extended to me and spread it as far as I can. 

I have had a stroke at 33 but it is just one stroke in my life painting.  It has become a bright vivid color on my canvas, reminding me that life is precious, relationships are a very significant part of this life and that Heavenly Father is very very real.   

The Story of my Stroke part 2

My mom had parked the car and was walking in right as they took me back.  Liz was my nurse.  (I asked her that after the TPA had been in my system a while.)  I sat down; age? “33.” There was a slight pause not because I was having a stroke, because I couldn’t remember if I was 33 or 34. What was I there for?  I don’t remember beginning to cry.  I think that I had just been weepy through the whole experience, once again all I could say was I don’t feel right.  Then I tried to explain it.  My arm was dead, my leg was weak, my neck was on fire, my head at this point was a very dull ache.   She began to assure me that everything was fine, probably just a headache and that they might talk about a stroke but she didn’t think I was having one.  I needed to stay calm.  (Apparently stress makes it worse.)  Then she yelled for the doctor.  He had me lift my arms up straight out in front of me and close my eyes.  10 seconds later a stroke code was being issued over the loud speakers throughout the entire hospital. 

 15 people were instantly in the nurse station.  Magically there was a gurney.  They took me to get some blood work drawn, they put me on a gurney and whisked me into a ct scan.  This whole time Liz was assuring me that everything was fine, not a stroke, just a headache.  I wanted to believe her, but honestly my head wasn’t hurting that bad.  From the CT Scan Dr. Will Neil stayed by my side until the TPA had been in my system for an hour.  He was soft spoken and very kind, tall.  They must have asked me a million times what my name was.  The CT scan was to see if I had bleeding on the brain.  Nope.  Turned out fine.  That meant that this was a clotting stroke.  There is a small 3 hour window in which they can treat a blood clot to the brain kind of stroke.   He checked my reflexes, I must have held my hands up and shut my eyes a thousand times, they poked me with a pin.  Touched me with ice, squirted water on my feet.  Can you feel this, can you feel that? Track this light with your eyes.  I couldn’t feel my toes, I couldn’t feel my arm.  Every time they would poke or ice me I would think, should I be able to feel that?  I really thought I was imagining everything but one arm had sensation and the other didn’t.  They were waiting for things to get better but they weren’t.  Finally he decided it was time to administer the TPA.  The danger with this drug is bleeding to the brain or internally.  It meant I wasn't going to be able to get out bed for 24 hours... well, at least that's what they said.  I am not that great at following rules.  Once again it was a bit chaotic as they administered it.  Sixty seconds for the first dose then a 1 hour drip for the second. 

 Within 15 minutes of the TPA drug, I did begin to feel somewhat of a clarity in my head.  Like I could think better finally.  I also began to feel ice on my toes!  It was working and hopefully not much damage had been done.  

This is the Story of My Stroke

(In Parts Because I Haven't written it all down yet :))

Part 1

I am a healthy 33 year old wife/mother of 4, I am a Mormon and I am an occasional triathlete.  These are the things that define the person I am.  I love to swim, I like to bike and I HATE running.  But that is another story for another day. 

When I was young I always dreamed of being a mother.  I wanted 12 kids, one husband, and a house that was filled with happiness and laughter.  When I was asked what I wanted to be when I grew up, MOM was always the answer.  I knew I needed to go to college but I could never pin point what I was going to college to become.  I wanted to be a mother. 

Just like any other goal you set and know you want, I found and married the most amazing man on October 16^th 1998.  It’s not a perfect marriage, but who wants a perfect marriage to start out with.  That leaves no opportunity to grow together.  Gives you no goals to work towards.  4 kids into our plan I found out that a genetic mutation in my DNA (Factor Five Leiden x2) made childbirth not the safest plan for us and we thanked the Lord as we counted 4 amazing miracles before us.

On March 15^th 2012 I had a stroke.  This is what happened. 

I woke up just not feeling right.  Like I hadn’t gotten enough sleep, groggy, and still tired.  Made lunches and got the kids ready for school, dropped them off, went for a 4 mile walk with a friend and headed home.  I puttered around the house then sat down at my computer to check my email.  Within 30 seconds a splitting, aching, dead pain went through the left side of my body.  I knew something was right.  I stood up to go into the kitchen to take an aspirin but my body wasn’t responding the way it should.  My left jaw was hurting my neck was hurting my arm and leg felt strange.  I just didn’t feel like I could lift and support it.   I made it into the kitchen took 325 of aspirin then thought a shower might help me feel better.  I made it into the bathroom and gently collapsed.  The phone was right there so I called my husband.  I was scared and knew something was not right and by the time he answered I was crying.  He asked me to calm down and speak clearly but I felt like I was speaking clearly.  My body was hurting and it wasn’t working.  That’s all I could say.  He tried to consule me.  Then I felt like I could manage a shower and told him that.  He asked me to call the neighbor and have her come over while I showered I thought I would be fine.  I hung up the phone and got into the shower.  After just a few moments I felt again that I might collapse.  That phone call to the neighbor was looking pretty good!  I got out and went and sat on my bed.  Something still wasn’t right.  My arm wasn’t working right, my left leg felt like it would collapse at any second.  I called my husband back and told him I needed to go to the doctors.  He insisted I call my mom because he didn’t want me driving.  I got off the phone and wondered for a minute or two not knowing what to do.  I finally called my mom and asked her to come and get me. She knew something was wrong and was over in 5 minutes.  

The drive down

It’s a strange feeling to have your mind answer or speak and not your mouth.  My mom talked the whole way down.  I did have comments I just couldn’t get them to come out.  Well, not couldn't, just didn't have the energy to get them out.  About three minutes before we arrived at Zion Hospital she got serious, “Mandy can you walk? I am going to drop you off at the door and you tell them EVERY symptom you have had this morning when you get to the front desk.”  Yes I could walk!  (I struggle not being able to do things on my own.)  I hobbled in.  Checked in and struggled with what they were asking me.  Name, address, whats wrong... all I could say was I didn’t feel right, my left side wasn’t working right.  They took me back immediately.  

What do you need to do your first Triathlon?