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It's Been A Journey

Updated: Dec 2, 2019

In 2006, I was working at an ad agency, running marathons, & competed in fitness competitions. I was 26 and living my best life. I was doing fitness modeling & felt pressure to be “more sexy”, so I used my bonus from work to get breast implants. Long story short, I got sick immediately after the surgery (nobody knows if it was the trauma of the surgery or the implant chemicals, or both), & I’ve been fighting for my life ever since.  I got them removed after 3 weeks, but still suffered from 2 more surgeries, a seizure, a coma, losing my mind & my life, becoming completely reliant on family to function, had intense chemotherapy treatment that was even worse but was supposed to treat vasculitis, which is what they thought I had. I had extreme anxiety, obsession and depression because my mind didn’t work, I lived in an altered state of consciousness and hell where I didn't know who I was and couldn't understand anything around me. I was catatonic. From the outside you would say I looked hollow, like I was in a daze and I then I would violently tremor and feel like my brain was shutting down. On the inside, my brain was on fire, it was attacking me or being attacked by my immune system, and I was in a constant state of obsession and fear and helplessness, like a nightmare I could never wake up from. I took a trip to the Mayo Clinic in MN, where I finally got a diagnosis in 2015 of Hashimoto's Encephalitis, or Steroid Responsive Encephalitis Autoimmune Thyroiditis, or Autoimmune Encephalitis. I received mega doses of IV steroids afterwards, poking & prodding me for years like a lab rat, lots of crazy drugs tried & failed & I still didn't have anything that was helping me STAY better.  In 2017 I met a new doctor who was willing to let me try Plasmapheresis. A Hickman catheter was installed in my chest (and caused a blood clot & hospitalization in Jan), later removed, and now I am able to do the treatment in my arms. I finally have an amazing team of doctors from my Neurologist, to my Endocrinologist, to my Psychiatrist, my Primary Care Physician, and Dr. Mom that selflessly took me to every appointment, and "carried" me when I could not fight alone. I’m hoping to keep weaning off oral steroids as the Plasmapheresis cleans my blood of harmful antibodies and I am on #20 of my monthly treatments. I have to raise the oral steroids if I am going through a lot of regular illness or trauma and pray that the symptoms don't come flooding back in. They have caused me to gain weight, have weak bones, 2 cataract surgeries, food allergies, and more, but they also have saved my life.  I am almost 40 now, and this monster has not killed me but certainly come so close so many times. It has changed me to the core. I am not the same. I try to listen to my body now, slow down, I appreciate life, appreciate my family and friends and I count my blessings from GOD. It has been a JOURNEY, but I am glad I never gave up. I have been at the very rock bottom SO many times, begging for help, for hope, and I am here to tell you that if you or someone you love are suffering from this, or ANY other chronic illness, you are not alone.
by Gretchen Cannon

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