My Back Story and Mission

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!

15 Comments

15 thoughts on “My Back Story and Mission

  1. Thank you for following my blog, I checked yours out and I think I like it here. I suffer with chronic illness which sometimes brings me to the depths of depression, reading your positive and hopeful words are encouraging. You’ve been through so much! Thank you again, blessed be.

    • I’m so glad I could bring you a little hope! I truly understand the frustration and pain of living with chronic autoimmune “crud”… especially not knowing what to expect from day to day! I bring everything down to the moment “I just need to make it through the next 10 mins, the next hours, this day.” It helps me in not becoming so overwhelmed by all the future fears chronic illness can bring. Keep in touch… it helps me feel connected (at not so alone!) to read your journey, too.
      Peacefully yours- tamara

  2. Your courage and your will to survive are more than encouraging. Thank you for finding me. I truly feel we can be of much help to each other on our journeys!

    • I agree. Your story equally inspired me and I celebrate your courage. I look forward to supporting each other through the coming days! Keep going one day at a time 🙂

  3. Oh Tamara – so much I can relate to … even becoming more intuitive/sensitive to energy. You have had your share — and as someone who truly understands… I wish you only good health and total wellness. Getting close to nature and creating have been my 2 very precious gifts through all of this. I know I’m not done with the medical interventions yet, as my hip won’t stay in its socket no matter how much I encourage it… but the blogging and knowing others like you who have such a shining surviving spirit offers so much inspiration and hope. Much Love and Blessings always, Robyn

    • What a blessing to have found you and to read about your experience, strength and hope! You are an inspiration; a positive force of light, love and energy. You are making a difference by sharing your story with others.
      I am so glad that you, too, got some benefit out of finding my page. I am openly embracing this new experience and all the amazing connections with kind souls such as yourself.
      Unfortunately, I don’t know where the “end” is for any of us facing constant physical battles. But I applaud your approach to life; discovering all the beauty and creativity lying in your path just waiting to be discovered. Sharing this is an inspiration to others who are struggling.
      That’s the one thing none of all conditions (and surgeries and pain) can take away from us… our Hope. Thank you for the blessings,; I am returning them to you tenfold. Much love & light ~ tamara

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