Finding Hope In The Unpredictable By Emily Ann Hupe

I would like to introduce you to my friend and fellow mobileWOMAN, Karen Fiera. Karen and I live in the same town and for a time, attended the same church, however, we met online in 2011, not in person.  We instantly bonded over the shared journey of living and parenting, through a chronic illness and disability. We have shared the ups and downs of a journey that we never expected to take. We pray for one another when one of us is in the hospital or having a setback, and we praise together when we experience the rare, precious moments of "normal". When those Facebook memory posts appear, clearly showing the "before", we cry together at everything we have lost.  We "get" each other, we have given up so many of the same things and we lessen the hurt they cause through our prayers and friendship. Karen has graciously allowed me to share her story here.

Karen and her husband Anthony, were living a quiet life raising their 2 children and enjoying an active Southern California lifestyle. Life as Karen knew it, changed in 2009. The plans and dreams that she thought she could count on, were much different than the life she felt God had planned for her.  After successfully completing the breast cancer 3 Day Walk in San Diego, in 2008, Karen was eager to participate again in 2009! The first day of the walk, she sustained injuries to her hip, knee and shins. As the walk went on, Karen began experiencing extreme pain. She continued the walk, willing her body to push past the pain. Karen remarked to her husband that she was just injured a little and it wouldn’t kill her. They kept walking, hand in hand for 60 miles, Karen completed the walk.

Following the walk, Karen's injuries did not improve and she began seeing doctors and seeking answers. It would take months to find them. Even when the doctors had an answer, it only seemed to lead to more questions. Karen finally had a muscle biopsy done in August of 2010, the results would change her life forever.

Karen was diagnosed with a rare genetic disorder called Mitochondrial Myopathy, a form of Mitochondrial Disease. Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells. Mitochondria convert the energy of food molecules into the ATP that powers most cell functions.

This disease affects every system of the body, causing a slow decline in function. The symptoms Karen experiences are: muscle weakness and muscle fatigue, this has lead to her use of a power wheelchair, migraines, slurred speech, Raynaud Syndrome, vertigo and vestibular weakness, complications with the endocrine system, breathing and heart problems, autonomic dysfunction which causes blood pressure and body temperature problems. Because Karen is not able to regulate her body temperature, she and her family have had to give up their vacations in Lake Havasu, Arizona. Karen shared with me that this has been one of the hardest things to accept.

To read more of Karen's Journey with Mitochondrial Myopathy please go to:

Posted by Sparky on Jan 9, 2018 11:55 AM America/New_York