About Jamie

Hello!  My name is Jamie.  I am from Iowa.  I am blessed to have an amazing husband, Patrick, and four beautiful daughters; Seeri, Jaelyn, Linden, and Myah.  I am a PE teacher at the local high school and love being active.  I really value my time with my family and friends.

On October 25, 2013 I suffered a stroke in the Pons area of my brain stem at the age of 32 while 15 weeks pregnant with our fourth daughter.  I was in the best physical condition of my life, my blood work was exceptional, and my blood pressure and heart rate were very low.  Before this incident, I was completely healthy.  Needless to say, the stroke came as complete shock to me, my family, my friends, and my doctors.  The first MRI did not reveal the cause of my bleed because the great amount of blood impeded the view of what was behind it.  So my doctors had to wait until my follow-up MRI to get a closer look.

On December 26, 2013, I found out that my stroke was caused by a cavernous malformation cavernoma (CM) located in the Pons of my brain stem.  CM's are more commonly called popcorn lesions.  They are a vascular abnormality of the central nervous system which consists of a cluster of abnormal, dilated vessels.  CM's can be genetic and a person can have many in their brain.   They can remain stagnant (no bleeding) or they can bleed many times.  They can also bleed and not cause the individual to experience any symptoms at all.  CM's can be removed through surgery depending on the location in the brain and the aggressiveness of the surgeon.

My case is very rare because my CM is located in my brain stem.  The brain stem is the control center of the brain and very hard to reach and navigate through without damaging healthy brain tissue in the process.  My bleed was nearly 2 cm in size which was very large and filled most of the Pons.  My MRI scan also showed evidence of old blood, so more than likely it had bled before without producing symptoms.  It was the only CM I had; the rest of my brain is "clean," and as a result my doctor did not believe it to be genetic or familial.   After extensive research in to my and my family's medical history, it is believed that my CM is a result of my "shitty luck."  By the time I had hit my three month anniversary, much of the blood from my initial bleed had reabsorbed back in to my brain and healthy brain tissue had begun form around my CM. 

Patrick and I decided not to have surgery to remove my CM after my first bleed.  The rarity of my CM, the location of it, my current pregnancy, and the uncertainty of my quality of life afterwards were all determining factors in our decision at that time.  The chances of it bleeding again were low; 20% the first three months, 10% after the first year, and 3% after the second year.  If it were to bleed again, the blood would push the healthy tissue away from my CM providing a much clearer and safer look and path to my CM for my surgeon to remove it.  Another bleed and surgery both present many unknowns.  Not to mention, all of the doctors we consulted with told us it would be easier and safer to do surgery closely after another stroke. We decided to roll the dice and pray that I would not have another stroke.

After my stroke, I took to Facebook to journal updates about my condition to my friends and family.  My first post was a simple thank you to all who had prayed for us and stepped up to help us in our time of need.  I mentioned in my post that everyone who had helped us had motivated me to “Do Better.  Be Better.”  That personal slogan of mine resonated with many and has since "stuck," hence the name of my blog.

My second post was written in response to people inquiring about my progress.  The response I received from my original two posts was so incredibly positive, encouraging, motivating, and uplifting.  I very quickly realized that sharing my journey on Facebook was going to play a significant role in my recovery.  I continued to journal on Facebook to express my thoughts, feelings, fears, struggles, and accomplishments.  I always felt so much better and refocused after I wrote.  I was able to "let go" of my thoughts and be comforted by the comments and messages that people would post.  

Family and friends eventually started to encourage me to write a book or a blog.  After much consideration, I decided to begin a blog.  It was the perfect way to express my thoughts, keep a journal that my family and I would have forever, and possibly reach others who have a condition like mine.  My blog chronicles my recovery from my first CavMal bleed on October 25, 2013.  Unfortunately, my CM bled again on February 15, 2016.  I had Ponteen brain surgery in Arizona on March 4, 2016.  I was in the hospital for twelve days before returning home.  I have recovered miraculously and I now focus my efforts on paying forward all the kindness that was extended to us during our time of need.... which leads me to one of my great loves.

In January of 2015, Patrick and I created to the Do Better. Be Better. Organization.  In May 2016, we became an official 501c(3) Non Profit.  With the help of our Do Better. Be Better. army, we organize fundraisers to help those suffering from medical emergencies..  We also award scholarships to a senior from Cedar Falls High School (where I work) and Dunkerton High School, my alma mater.  The scholarship is awarded to a senior who has overcome personal adversity or strives to make a positive impact in their communities through volunteer work. To date, we have helped 72 families  and awarded 8 scholarships.

In this blog, I try to be as honest as I can about my symptoms, my recovery, and my feelings throughout this crazy journey I have been on.  Please do not hesitate to leave comments or ask questions as you read along.  Please pass my blog on to others who you think may benefit from it.

Thank you for reading!
Jamie