Brave the dark!

It has been a while since I last posted about my journey with Hashimoto's Encephalopathy.  For those who have been following along, I thank you for taking this roller coaster ride with me!  If you are reading this blog because you, or a loved one, has been diagnosed...I am living proof that there are not enough answers, studies, or cases to map out the path you are taking. 

I am about to approach the three year mark from when I was officially diagnosed, but I had been treated for my thyroid disorder and given multiple rounds of steroids the prior year which treated the HE unknowingly.  During my first year of diagnosis, after it had been determined that my case was both relapsing and progressive, my team of doctors and I researched as many cases as we could find.  All of the studies were for only two years.  The overall prognosis was not good for any of those cases.  Most ended the study with a major stroke, coma, or death.  This is not a path that any of us were willing to accept. 

No matter what you face in life...divorce, loss of loved one, loss of job...you have to re-invent yourself.  You have to mourn the life you had, but you have a choice about who you are going to be from that point.  As a child and young woman, I experienced plenty of times where I either gave or had my power taken away from me.  At the darkest time in my life, I grasped at aspects of my life that I had control over, often to my detriment.  So, when I was given the diagnosis of HE and told that no one could tell me how it would end, but that I would need to battle...well...I didn't initially put on my armor.  I went through a bitter, angry phase.  I crawled into a dark, and lonely place.  I put on the face of denial and pretended my life wasn't different.  Every time I hit a hiccup or there was a change, I would start the mourning process all over again.  There were plenty of times that I was hard to like and I am sure even harder to love.  But by the Grace of God...I woke up and realized that I had the control of how I would walk, and I had the power to be my own advocate.  My doctors and I made a new treatment plan, I began to put my health ahead of my pride, and started to work towards getting stronger.  After struggling to take steps and use my hands, not being able to exercise because the steroids had made my bones brittle, after my brain started fighting with my heart, I now am at the gym 3 days a week.  I am able to run and lift weights.  I feel better than I have since being diagnosed. 

However, I did hit the therapeutic level of immune suppressants we were aiming for, and then came down with a couple of infections.  With my heart condition and suppressed bone marrow function, this could have stopped my treatment all together.  We backed off the suppression, started antibiotics, and prayed.  Then resumed treatment.  Yesterday, I received word that my body bounced back.  Infections are gone and my blood count is exactly where it should be.  My heart only acted up for a few days, but settled down after therapy resumed.  I am blessed and a testament to the fact that answers are not held by anyone other than God...and he occasionally lets you have some input:)  So whatever you face, brave the dark and let your little light shine!