Next Level Extreme Fitness

How I am learning to "Do Better. Be Better." after the cavernoma malformation in the pons of my brainstem bled.

Sunday, February 23, 2014

I Will Not Accept Failure

Therapy continued to be challenging, but it was going so much better now that I had my eye patch.  I started noticing little improvements everyday.  I was starting to feel less tingly and just stiff instead.  I was also noticing the temperature of things, like the water temperature in the shower, with my left side more.  Movement was becoming more natural especially in my head.  I would actually turn to look at objects rather than just look straight ahead.  I also wasn't completely terrified to touch the base of my skull or neck.  That was definitely due to the decreased nausea.

The functioning in my left hand was improving ever so slowly but surely.  I was gaining more gross motor function.  I was able to pick up larger objects more easily and hold on to them for a good amount of time before I dropped them.  I also noticed that I could control my thumb and pointer finger, meaning I could move them separate of one another.  However, it was still a struggle to get them to straighten or bend when I needed them to and grasp things.  For example, there was a handicap bar in my bathroom that ran perpendicular to the floor.  I had to use extreme focus to get my hand to slip between the wall and the bar and then grasp on to it.  It was challenging because I couldn't get all five of my fingers to listen to the same cue.  Two of them would straighten and the other three would stay bent.  I literally had to send a signal to each finger to get it to do what I wanted.  It would take about 20 seconds to grip the bar every time I went to the bathroom.  It was hard with my sensory deficit to know how hard I was gripping something or if I was gripping something at all.  If I had my eyes closed and someone were to put something in my hand or on my fingertips, I would have never known.  My middle finger, ring finger, and pinky all still had a mind of their own too.  They moved as one and rarely listened to me.  It reminded me of my kiddos!  ;-)

My balance was improving greatly.  It helped that I didn't see a zillion images and could move my head to see objects.  I was also starting to trust my leg and relearn how to use it.  Like with everything I did in therapy, it took so much focus.  Seriously, I would sweat because I was thinking so hard!

This is also about the time where I really fatigued and got exhausted quickly.  In PT I would have to take about a minute break for every 30 seconds to a minute of work I did.  That was so embarrassing but I had too.  I would literally be out of breath from it.  Plus, when I got tired my left side from head to toe would tingle and become more stiff because I was sending so many impulses through my body at once.  It was like mt left side was connected to a stem machine that didn't take breaks!

OT would mentally exhaust me.  About a month before my stroke there was a man that walked across the Grand Canyon on a tight rope holding a bar.  I am positive that it took an immense amount of mental focus to complete that walk.  I will not hesitate to tell you that it took me that much mental focus to pick up a pen.  If I would lose it for a second, I would drop it or my fingers would go out of position and I wouldn't be able to pick it up.

I would get done with a session of therapy and instantly fall into a deep sleep for 20 minutes before my next session.  I had a two hour lunch break now that my therapy schedule was changed.  I would sleep for all of it except for the 30 minutes I ate.  I was sleeping every night by at least 8 pm.  My body was just done.  It was like I went out and ran a marathon every other half an hour!

Facebook post from Patrick on November 6, 2013
Extremely proud of her today and this entire week. I have had the pleasure of cheering her on, giving her that nudge of encouragement in times of frustration, and been able to watch consistent daily progress in all areas of her therapy. Jamie Smith, you amaze and inspire me.

I continue to pray for her, our daughters, and for all of you helping to lift us up in this time.of need. I said to a friend tonight that the support we have received is humbling. People we don't even know bringing meals to our home, incredible friends taking our kids to and from school, and family staying during the day/overnight to care for Seeri, Jaelyn, and Linden.

All of you, Thank you. So many of you say, "its no big deal" or "you would do it for us", please know how very much we appreciate all you are doing. Please continue to keep us in your prayers. God Bless.

I also started excepting a few visitors outside of family members.  I was reluctant at first.  First of all, I was so tired.  When people came I felt obligated to visit which only made me more tired.  Plus I was embarrassed of how I looked.  I hated showing people that I was sick and weak.  I wanted to be normal.  I wanted to be strong.  I realize now that I was so stupid for thinking that.  I had just survived a 2cm brain bleed in the Pons of my brain stem.  Are you kidding me?  I was STRONG.  I wasn't the old Jamie, the "normal" one, but a "better" Jamie.  I was Jamie 2.0 and I was killing it.  

But, with visitors, came questions and reliving it over and over.  So, I sent out this post on Facebook.  Whenever I posted, I always tried to be as honest as I could about what I was experiencing and feeling.  The post below was no exception.

Facebook post on November 7, 2013
I wanted to say thank you to anyone who has sent me an email, message, a card, and a gift. All of your kind words give me peace and inspiration to keep working hard. I have quickly figured out that I must talk about food, especially my food vices, very often. Nearly every care package I receive contains Doritos, Milky Ways, and Lemon Heads.

People always ask me two questions when they come to visit. 1). Do I remember October 25th and 2) Do the doctors know why this happened?

I remember every minute of it. It was one of those situations where I didn't dare fall asleep for fear I wouldn't awake. So instead I cuddled myself up into the fetal position, closed my eyes, and thought of every possible thing I could. I just tried to focus on staying calm for the baby. Strangely, I felt strong and at peace inside. I remember as my family members came into the ICU room to see me that they were all trying to be strong for me, but I could hear their sniffles and hear the anguish in their voices. I instantly made a choice that I wasn't going to be a victim. I started to set goals and I work hard every day to meet them. The first time I feel asleep was after I had my MRI revealing that the bleeding had stopped and I didn't seem to have a tumor. Patrick told me the news, laid down by me in my ICU bed and whispered to me,"you never have permission to do this again". I finally felt safe and fell fast asleep.

At this time, my doctors aren't 100 percent sure why this happened. More will be revealed in my next MRI on Dec 26th. By then a lot of the blood will be re-absorbed and they will be able to get a clearer picture of affected area. Their best guess is that the vessels in my brain stem are laced together instead of separated and it was probably something I was born with. They think that I could have had smaller bleeds previous to this and the symptoms didn't manifest themselves. For example, last year when I had the flu four times it may have not been the actual flu. Apparently, 32 year old pregnant women in above average health don't usually have strokes so I guess that if I'm going to have one I might as well do it with style.

It's been almost two weeks since my stroke, but Iowa City already seems like a lifetime ago. Surprisingly I miss being in my own Greys Anatomy episode. It  was somewhat flattering to be the case that all the doctors and their students wanted to see and learn from. I sometimes get the feeling that I am the medical mystery that keeps on giving.

Sometimes when I wake up I just want to drown myself in my fears and anger. Then I feel Patrick brush his finger tips across my cheek and say "Good Morning" and I think there is no better day than today. There is no better day than today to Do Better. Be Better.

I've made a lot of progress over the last week. I have gone from not being able to pick up a wooden block to picking up popcorn seeds. At first I couldn't step over a yard stick on the floor without losing my balance now, stepping over six inch cones seems too easy. I am very proud of my progress, but when my daughters come to visit reality sets in. The whole time they are here all I think about is how would I do that? How would I help them? How am I going to do the eight million things I used to do in a matter of minutes when it takes me four minutes and two seconds to pick up nine pegs, put them in a peg board and take them back out. When I think about going home it makes me both excited and terrified.

It is human nature to be scared and concerned. I want to reassure all of you that even though I express my fears that I am still positive about the outcome of my condition. I am strong. I am focused. I will not accept failure.

I selfishly ask that you specifically pray for my vision to be restored and for my parents to find peace with the path that God has chosen for me.

I thank you for all you have done and God Bless,

Jamie and Patrick

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