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Jaci: MCTD and Autoimmune Hepatitis

What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors.

Pink and Yellow Flowers by Shelley Ensz My name is Jacqueline. I am forty-one years old now, but my illness started at the age of twenty-two. My first symptoms were swollen joints. My wrists would swell, my fingers became swollen, my skin became very itchy and blotchy. Sometimes the itch would drive me crazy and keep me awake all night. I also became extremely tired.

Sometimes just showering would take all my energy and I would have to lie on the bathroom floor for twenty minutes or so just to gain the energy to get dressed. I became tearful and anxious wondering what was happening to me.

I visited my doctor on a few occasions, but blood tests showed nothing unusual. Eventually I was told I must be depressed, and these symptoms were caused by depression. I knew I was depressed because I did not feel normal anymore. While all my friends were out having fun, I was at home in pain, tired, and feeling more like a ninety-year-old.

Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors. I started to wonder if it was all in my mind.

Years went by, and I tried different things to help myself: meditation, avoiding stress, better eating habits. Sometimes I would improve for a while, then the symptoms would all come back again. It was a very stressful time. Sometimes I felt like ending my life, as I could not understand what was happening to me. The illness was so strange, it affected so many parts of my body, even my mind. I would get brain fog, and forget things. I felt like I was going senile.

At times of desperation I would go back to the doctors, almost pleading for help. Fortunately my doctor never gave up on me and sent me to a specialist in gastroenterology and hepatology as I was having stomach problems and would often be sick. I also lost weight.

My hospital visit was successful in the fact that I finally had a diagnoses of autoimmune hepatitis, a rare liver disease. I was put on steroids. In that time, I felt a little better, but I was still feeling unwell, tired and my body often ached.

Eventually I was sent to an immunologist who first diagnosed lupus, then two years later diagnosed mixed connective tissue disease, MCTD.

In the last year I have had kidney problems. My potassium levels were dangerously low, causing irregular heart beat. This was finally diagnosed as renal tubular acidosis, then a few months after that my colon ruptured. I spent three weeks in the hospital very ill with a major infection.

This year I have had breathing problems, which come and go. I have had them in the past but they seem to be getting worse. I am having heart and lung tests next month.

Through all this I have had very little support from my family. A lot of people I have spoken to with this illness have the same problem, because we don't particularly look sick so we must be alright. Usually these people will not even read about the illness, so they do not know how tiring and debilitating it can be living with a chronic illness.

To Contact the Author

Email: [email protected]
Story edited 04-17-08 JTD
Story posted 04-30-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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