WELCOME! My name is Tamara and I am starting this blog as both a place to share my personal experiences with complex chronic illness as well as a place to share stories of Hope and provide tools for others struggling with similar situations, in their own lives and as caregivers.
The background to my story will unfold in my blog entries. But, how to summarize it? Hmmm… I’ll give it a try! I was a healthy, active, professional woman throughout my twenties. My husband and I loved outdoor adventures from backwoods camping to canoeing for hours on end. I worked as a director of a large child care center in Boston. And although it was a demanding job, I loved it!
At 28, we returned to our hometown of Rochester, NY and I continued my career now as a training and development specialist for early childhood educators. At 30, my life came to a screeching halt! I very suddenly became sick and was hospitalized with severe asthma (first time!), high fevers and infection and muscle and joint pain and weakness. My early thirties were filled with trying to balance work with an ever increasingly disabled body, and trying to navigate a health care system that has yet to catch up with the needs of women struggling with autoimmune conditions (the “silent illnesses”).
During the winter of my 34th year, I both finally received a diagnosis of a rare autoimmune condition, Relapsing Polychondritis (on top of the Fibromyalgia, Raynauds, Migraines, Interstitial Cysitis, Arthritis, Severs Asthma and Allerigies, etc!) and I found myself waking up in a Boston ICU after my colon ruptured, I had been septic for 2 weeks, and given a 10% chance of living. Now I was 34 with an ostomy bag to boot! The next 5 years were filled with 100’s of days in the hospital, multiple severe surgeries, and a serious decline of my over-all well-being.
YET… in the midst of all this, I found HOPE: hidden in small places, in interactions with others, in the beauty of nature, in the love of my husband (and kitty!), and in my own inner will to survive. I had two near death experiences where I was gifted a third sight that few are ever able to see. The outer world was stripped away, and I experienced everything on its most natural, rawest of levels. I could see people’s energy and the way they increased and decreased depending on their interactions with others. I found that when my energy was most depleted, was when I had to give it away to someone else. It would then return to me tenfold, igniting and fueling my inner life source, that which I have coined our Soul Beacons.
I invite you to join me on my journeys… my hope is that some of you will find a little piece of peace and acceptance here; some strength to power on; and validation for your everyday struggles. You are a one of a kind beautiful being of light! It’s time to let your own Soul Beacon shine!