July 11, 2016
On June 26th for my 47th birthday, I was given the BRAVE Key by one of my dearest friends, Jennifer M. She lost her son, Jake, at age 9 on April 28th 2014, to a rare disease.
Receiving the BRAVE Key was meaningful beyond words.
BRAVE is not a word that comes to mind regarding myself.
I have no memory of ever living in a healthy physical body even though my faith in God and soul is strong. So, my many daily medical routines are what my normal is.
At age 13, I was diagnosed with type-one diabetes (T1D), which began a vigorous routine of countless finger sticks, insulin injections, meal planning and timing, and a rollercoaster of fluctuating blood sugars. I went on the insulin pump at age 17 and on a continuous glucose monitor 10 years ago. I’ve always viewed living with T1D as a life adjuster, not a life changer. Throughout my life, T1D has not slowed me down.
I’m a proud Mom of two healthy teenagers; have a successful interior decorating business; am actively involved with JDRF; and to date, remain free from diabetic complications.
In June of 2011, I was diagnosed with an extremely rare disease, Stiff Person Syndrome (SPS). SPS is a progressive neurological illness that affects less than one person per million. The result is muscle rigidity, stiffness, spasms, chronic pain, and eventually, impaired mobility. To slow the progression of SPS, I undergo IVIG, or immunotherapy, 2 full days every 3 weeks and take 32 pills per day to relieve the symptoms. I'm thankful that SPS has only slowed me a little. I'm an advocate for rare diseases, am active in my church, continue to work, and am thankful for my family and friends.
I'm giving a BRAVE Key to my loving friend, Vicki, to help her get through the month of July. On July 20th 2015, she lost her youngest son, Brian, in a motorcycle accident. For any parent to lose a child is unimaginable. When I think of the word "BRAVE" I admire Vicki’s bravery, love, and unwavering faith.