Getting started…

This is my first attempt at blogging so y'all go easy on me. 😆 Happy to get started and to meet you all.

I've thought about doing this for a long time, but I wasn't sure what to say, or where to start. In the past few years, I have repeatedly found myself answering questions about my diagnoses, about treatments, managing my work schedule with appointments, and negotiating things like workplace accommodations that help me keep life as normal as possible. When I hear stories from other working women who have struggled with the same things I am, it's given me confidence to expect a happy and full life and career and to ask for what I need to make it possible.

So here we are, and I'm putting it out there. I'm 39 years old, a wife, and kind of your stereotypical working millennial dog mom. I have a corporate job, a little side business, a 1970's ranch house, three rescue dogs, three birds, a love of travel (when I get to) and a dream of owning a beach house in Costa Rica some day. I honestly have a pretty happy life.

I also have chronic pain and horrible anxiety (a panic disorder is how it was diagnosed.) The anxiety has always been there on some level, but it really came to a head when I was 28 years old and began having unexplained sudden, painful, disturbing neurological symptoms. Focal point seizures, trouble swallowing, difficulty speaking, dizziness, so much pain. Other things that are hard to describe.

This will all have to be their own posts to even begin to explain, so for now, let's fast forward past the impossible task of managing medical care when you don't have a diagnosis and don't know how to find a doctor interested to help you find one. You're working an hourly job through dizziness, pain, and panic. You're out of vacation time. No one cares. Probably no one even believes you.

I was diagnosed with Eagle's Syndrome first. It's a diagnosis that even ten years later, I've only had one specialist, apart from the ENT who diagnosed it, recognize when I explained it. Briefly (for now), it's a very rare disorder where your styloid, or your stylohyoid ligament, becomes elongated and calcified and causes all kinds of issues like a lump in the throat sensation, dizziness, and facial pain. It was actually featured on an episode of House (much to my amusement at the time.) It explained some of what I was experiencing, but not everything. The only treatment available was a very strange surgery that left me with unanswered questions, some lingering pain, some relief, and exactly one tonsil. Yep, I still have one. 🤷‍♀️

I was later diagnosed with another condition, this time neurological, called cervical dystonia. Also pretty rare, although not as unheard of as Eagle's syndrome. It's a neuromuscular condition that causes painful muscular contractions that affect my head and neck posture as well as my swallowing and, at times, my speech. Primary treatments are botox shots in my neck muscles every three months, muscle relaxers, and anti-inflammatory medications. It's not perfect, but it's so much better than it was.

So- briefly- how am I managing? Thankfully, I have found a supportive doctor who understands the issue and specializes in the treatment of movement disorders. She even knew what Eagle's Syndrome was. I have an awesome boss that advocates for work/life balance. I have an alternate work arrangement that allows me to work remotely and flex my work schedule with my appointments. I have a husband that has a sense of humor and a lot of patience. I have my three snuggly dogs that bring me a lot of comfort. And most nights I have a glass of wine. 🙃

I also have come a long way and have a lot to be thankful for. (I promise I'll share the fun stuff as well!)

Hopefully I'll have something helpful to contribute here, and I'll be glad to meet all of you and hear your stories.

Thanks for reading.

Birdie