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Nikki’s Story (Autoimmune Hepatitis)

Nikki's Story Autoimmune HepatitisIn 2010, my world was flipped upside down, and life as I knew it changed. I was 27 years old, living away from my home state of Connecticut for the first time ever in Seattle’s hip Capitol Hill neighborhood, going to graduate school full-time, and enjoying life with my husband. We were young and free, going out with friends, exploring the city and the nearby nature of Puget Sound, dancing on weekends and just having fun, like normal 20-somethings.

I started to notice pains in my legs when I would walk. I chalked it up to sitting for endless hours on my couch doing graduate school work. I insisted that I needed a proper desk. I got the desk, but the pain didn’t stop. In fact, I started to experience other ailments. My joints started to swell and ache, I gained pea size lumps on my temples, my throat closed one day out of nowhere, I had fevers and nausea and most of all I was extremely exhausted. Arthritis runs in my family, and my mother has sarcoidosis, which affects her joints, so I figured I was heading down that road too. I went to the Rheumatologist but didn’t expect to hear what I was told. The doctor told me that my liver enzymes were off and that she was referring me to a gastroenterologist. I thought, “What does arthritis have to do with elevated liver enzymes?”

After meeting with the gastro and having multiple blood tests, X-rays and ultrasounds, I was finally diagnosed with autoimmune hepatitis.
Ever heard of it? Neither had I or anyone else I spoke to. Most doctors don’t even know what it is. It’s a rare and chronic autoimmune disease that basically means your body is attacking your liver. What was happening to me was that my body had attacked my liver, and it was impairing its own functioning, leading to severe scarring. As a result, my doctor started talking to me about liver transplants. “Yikes! How did I go from potential arthritis to transplants?” was what was going on in my mind (expletives omitted here).

I had to face this new reality and let it settle in. Even though I was 27 years old and fairly active before my diagnosis, I could now barely move. I was completely zapped of my energy, couldn’t walk, and slept for 20 hours each day. The ensuing medicine regime was not a cake walk. Prednisone sucks and comes with many side effects, and I was on it for years. The other meds they tried on me didn’t decrease my inflammation or scarring, but they did make me sick to my stomach. The newer meds they tried were chemo drugs with a potential side effect of lymphoma. Never mind the weekly blood tests to monitor my levels. Oh, and did I tell you I hated needles and would pass out?

I finally started to see the light when I realized that I had to take whatever tiny control I had over this disease. All that I could think of to control was my attitude about it. So, I started exploring positive psychology, spirituality, holistic health, meditation, yoga, energy healing, therapy, and a life coach, and tried various other healing modalities to complement my medical care. It’s only when I started exploring this alternative and additional path to healing that I felt I started to heal physically, emotionally and spiritually.

I know now that it takes loving attention and awareness in all of these areas to get to a place of healing. I’ve also learned that healing is a continuous process of acceptance and surrender. This illness has been a gift because I came to discover my calling, which is life coach and energy healer. I now use my knowledge and expertise to help others dealing with disease and illness get to a place of wholeness and well-being.

It’s still not easy. I’ve had multiple flare-ups since diagnosis, including the worst one that I’m in right now. I’m severely jaundiced, itching all over because of it, and completely drained of my energy. I’m back on high doses of prednisone and will probably have to start testing new drugs again soon. This is a setback for me because I’m now 33 years old and want to eventually have a baby. With some of these meds, it’s not possible to. So it’s another reminder to focus my attention on loving myself in all the areas of my life and focusing on what’s most important. Right now, it’s taking meds, going to the doctor, and doing the blood work and other testing to ensure I’m out of the danger zone.

As I mentioned before, this is a continuous process for me–of self-love, extreme self-care, acceptance and surrender. It helps to know that I am not suffering alone. I have my wonderful husband, my family, friends, and other support networks like Fight Like a Girl Club to encourage, inspire and uplift me.

I’m really thankful to have a community like this where I can go and find comfort in other’s stories. I truly believe there is healing there. It gives me hope and warms my heart. Thanks for letting me have this opportunity to heal and share my story.

Lots of love,

Nikki
Massachusetts
Submitted 01/18/2016

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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2 comments

  1. Rebecca Betancourt

    Thank you so much for sharing your personal story. I can relate with you in the sense that I was healthy and very active and one year out of nowhere I started getting really sick. It was brushed off as PostPartum and then as Allergies and before I knew it, I had rapid weight loss and was fainting behind the wheel. Two months later, I was diagnosed with Advanced Hodgkins Lymphoma. That was the toughest week of my life. But here I am, alive and well nine years later.

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