Jenna's Story

Headaches and exhaustion are just part of the game when you are a single mother working crazy hours. Losing your balance and tripping over things that aren't even there is just getting older and not being as nimble as we once were. Scatter brained thoughts and sleepless nights are the norm when you live and breathe a medical world both at work and at home. 15 years of signs, 15 years of ignoring them. 

Gentle tingling in my hands and arms, blurred vision, achy and stiff joints and muscles, stress, surely... right?? Ok, so the tingling in my hands and arms became a slight concern that got an amazing doctor friend curious. Labs and research and tests and I soon found myself with as many doctors and medications as Bouga... with one slight difference. We knew WHAT was wrong with Bouga.  A million labs and tests and medications and two wrong diagnosises later, I was ready to settle for my original theory- I am a stressed single mother stretching myself too thin and this was all in my head. A year with that theory and I had adjusted to the tingling and clumsiness and wierd visual shifts but when the gentle tingling spread to all parts of my body and became painful pins and needles and all tests and exams came back normal and negative for whatever each one was testing for, I was sent to MRI. Prepared for another test to be normal, I never gave the MRI a second thought. It was going to be one more "nope, this is not what is wrong with you" moment.

Even with all of my medical knowledge, even with all of my experiences with Will and his journey where I learned the ins and outs of being on the patient side of the medical world instead of the caregiver side, I was not prepared for the phone call that came next. "Remember when you said you were starting to think this is all in your head? Well, it is. LITERALLY." A Chiari 1 Malformation with a Syrinx was found on the the MRI by accident and neurosurgery needed to care for me. A narrowing in the bottom of my skull that essentially is shoving the bottom of my brain into the top of my spinal canal and forcing spinal fluid into the spinal cord itself. I had to look at the phone, look at the clock on the wall with the date showing brightly, and ask the voice on the other end of the phone if it had the right patient. After three years of not knowing who should be caring for me, not having answers, and not knowing what was coming next, I had an answer, and someone to take care of me.

Not much could have shaken me, 5 years ago we were taken to hell and back with Will and we had built a seemingly indestructible world and conquered what we had been told we would not, but THIS shoke me. So, almost exactly 5 years from when I began musing and typing out my thoughts, experiences, and emotions so that all of you could come along with me on the journey as a special needs mom, I begin musing and typing out my thoughts, experiences, and emotions so that all of you can come along with me on the journey as a patient.

Although prayers and support are most welcome, sympathy and pity are not. I open our life in effort to acknowledge and respect the amazing web of family and friends we have accumulated over the years, to help others understand, and to find understanding myself. No matter if you join us as a co-worker, an online friend, a networking Super Family, a personal friend, or a caring stranger- welcome to our family, and my journey.