May 16, 2014 Latest post:
Nov 22, 2018
So much has happened in the last year-and-a-half and my life has changed dramatically. While I wholeheartedly agree and am thankful that God is in charge and has a plan ("The Perfect Plan"), I have to admit that the path I find myself stumbling down is anything but expected. It’s really not a bad path, but it most definitely hasn't been easy to navigate.
I’m now 47 years old and recently retired after working at SWOSU for 25 years. I have always looked forward to retirement with dreams of fishing, hiking, and "picking/selling" while spending some time volunteering. When you tell people that you’re retired and are still halfway young, many respond with a tinge of jealously and talk about how much you must be enjoying it. Truth be told, I want to work still and I am not "enjoying" retirement yet as this wasn’t really a part of my plan.
Most know that I have struggled for years with joint problems that have resulted in over 25 surgeries and countless hours in physical therapy and appointments with doctors of all specialties. If you knew me when I was younger, you may have been privileged to witness a few of my "stupid human tricks" like playing games with my legs tucked behind my neck or bending my fingers in unusual directions. Friends have told me more and more that my feats were, in fact, not normal but still cool.
After years of surgeries physical therapy and injections I began looking for a common cause for my problems. After many "OK Google Inquiries", I traveled to the Mayo Clinic in 2013 where I was that all but diagnosed with Ehlers-Danlos Syndrome. At that time, I met all of the diagnosis criteria except for one and had actually dealt with many of the other criteria years earlier. I now had one piece of the puzzle almost in place. Several joint surgeries later and an ambulance ride to a Level 1 Trauma Center in 2016 where they ran stroke protocol, my drive to find answers grew stronger as my quality of life continued to deteriorate.
I have met a lot of very smart people over the last year-and-a-half at UT Southwestern, Johns Hopkins, and ultimately Cedar Sinai in California. So, I’ve actually gone Coast to Coast searching for answers and help. The "answer" begins with two diagnose: Ehlers-Danlos Syndrome and a CSF leak with intracranial hypotension. I have included information about each of the diagnoses journal section.
I’m now headed back to California to meet with the doctor who is considered to be a Pioneer in treating people like me. Beginning Monday evening, I will have several diagnostic tests performed, meet with the doctor and am scheduled to have a procedure of Friday (to be determine after a BIG test on Thursday that involves BIG needles).
I will update as we go through the week. Thanks for all of your prayers and support. God is REAL...God is GOOD....ALL THE TIME (PERIOD)!!!!!!