I was diagnosed in December 2010 and that summer I had lost a lot of weight, became jaundiced, and eventually by fall had such excruciating joint pain that I could no longer walk. I was bedridden; even turning my neck slightly hurt and my joints were very swollen.

My rheumatologist basically called me a hypochondriac. I pushed the subject though, I was angry, sick, and barely able to walk the final time I saw him. I had been seeing him for two years, had been on and off steroids several times, and wanted an answer other than "you are making this up." or "I don't know." After I broke down in tears, he agreed to a blood test to check my organs. When the results came back he asked if I drank because my numbers were incredibly high (basically accusing me of being an alcoholic), but I had given up drinking two years before and never drank very much. Probably the worst doctor I've ever met.

Anyway, that is just something I had to get off my chest. So, he then referred me over to a gastroenterologist. The gastroenterologist was shocked at the numbers and was able to get me in for a biopsy that week. He confirmed his diagnoses in two weeks after he took more blood and everything was processed. I was then put on steroids again, but this time for eight months, it was a rather high dose and I was not happy about the affects mentally, physically, and emotionally. I hated all the weight I started gaining, but was happy that I was feeling better!

I was told I have stage three liver damage and that I can't have another big upset, but the Azathioprine will help to keep things under control and as long as I stay on it the rest of my life, I will have a normal life span. Liver transplant or death may be something in my future, but I have accepted that.

I went off the steroids late in the summer of 2011. I still felt off though. I started school at Cornish College of the arts and took a full credit load. I was fatigued almost constantly and by February of 2012, I came to the conclusion that I had chronic fatigue syndrome (somehow not considering how fatigued autoimmune hepatitis can make me.) I barely made it through the school year. I even had to present my compositions (I'm a music major) to the jazz faculty because I missed the day I was supposed to present in front of the classical faculty.

I was so fatigued! By summer I thought, "If I just push through and start exercising more, I'll be fine!" So I started running more and working out: yoga, pilates, crunches, running, and long walks. Nothing seemed to help. I even ate as healthy as I could making use of energy boosting foods and eating lots of fruits and veggies. I would sleep for most of the day and 12 hours at night. I would only really get up to eat, go to the bathroom, or force myself to workout. Then I began having joint pain again.

Slowly the joint pain began to spread and by July I moved to my parent's house so they could help take care of me. I was bedridden for about six months. I went to a new rheumatologist who figured it was just that I needed to up the dose of the azithioprine, but of course you have to do that very carefully, as there are many risks with taking that medication, including cancer.

The good new is, it is 2013 and I am starting the year healthy, able to walk, and free of joint pain! I've started to walk two hours every other day and began yoga, but it hurt a little too much. I am just going to ease back into my life, which I know, realistically may take years.

I look back at the last four years and feel two things:

1. Sadness. I wish that things could have been different. My life was interrupted and the goals I had for it had to be set aside. It was so frustrating to lay in bed unable to move; to be trapped in my body. I wanted to scream and crawl outside of it somehow.

2. With gratefulness. I think about the time I nearly died in 2010. If it weren't for that gastroenterologist who believed me, I wouldn't have made it. I remember lying there face to face with death. I felt a cold hand on my back, but nothing was there. I could barely move, so I just let the cold hand press into my back. I thought, "This is it. And you know what? I accept that. I am ready to go." Now that I am better I have such a different view on life. I am less rigid and more open to opinions and new experiences. I value each moment and take advantage of everything good in life. I don't take things that used to really upset me as seriously anymore. I don't care if people like me or not, I'm going to be me! YOLO, you only live once. I realize that all I want in life is to do what I am passionate about. I create everyday, play music, listen to music, stay active, enjoy the company of my family and friends, and generally feel excited to be alive. Not many people go through such a life changing experience, do they!

hollowlight hollowlight
Jan 18, 2013