Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
It all began on December 14th. While nursing Aspen, I twisted my neck in a funny way and a shock of electricity shot up the back of my neck into my head. Within hours, I started spasming on the left side of my face, shoulder and neck. (If you’ve ever seen anyone with Bell’s Palsy, the movement is similar.) I had an intense migraine and I was very disoriented. We rushed to the ER because we thought I was having a stroke. Luckily, I was not having a stroke. CT scan and MRI were clear.
Symptoms include a facial spasm, shoulder spasm, a "split" with pain on the left side of my body, migraines, light sensitivity (causes facial spasm), insomnia, weakness in my left arm and leg, difficulty speaking, memory lapses and muscle pain.
In March, I finally got a diagnosis that explains all my symptoms. I have a Functional Neurological Disorder (FND). Luckily, this diagnosis was made early. On average, people wait 9 years before getting an accurate diagnosis-during which time, symptoms typically intensify. Treatment involves moving to the Front Range for the month of May to receive treatment at UCHealth Anschutz in Aurora as well as an online course. The prognosis is very good.
Since December, Devon has been able to work only here and there because we don’t have reliable childcare. We have been unable to find childcare (other than my wonderful parents) in Crested Butte. We have exhausted all of Devon’s sick leave, vacation days and unpaid FMLA. Moving forward, Devon is required to work a minimum of 20hrs/week in order to keep our medical benefits.
My parents' oldest friends, Jake and Emily, have a home in Boulder which will be vacant for the month of May and they have graciously offered for us to live there. Devon’s sister lives in Loveland and has graciously offered to help watch our kids. The FND prevents me from driving most days, so I plan to take a Lyft to my appointments and use the time to be alone and meditate.
All the offers from friends and family have been so generous it frequently brings me to tears. I struggle with overwhelm so I’m sorry if I haven’t returned your texts, written the thank you card or picked up the phone…yet
This website is a way to organize help. Anything you can do would be greatly appreciated. If you want a physical address, call my mom at (303)589-3709.