As Erica Rimlinger said
With my annual physical physics in spring 2002, my blood test was not entirely right. “Your liver function is not great,” said the doctor. “We will give it for another year and if it is not yet over, we will do something about it.” I didn’t think much about it. I had no symptoms worth mentioning. Of course I was tired, but not most people?
Next year, when my blood test looked suspicious again, my doctor called and left me a message at work and said he wanted to test me for hepatitis. I was surprised and more than a little confused: I had no risk factors. I was sure that my doctor was wrong.
A few months later I changed jobs. I had to wait for my new health insurance to start and I didn’t have enough sick time to take myself from work to go to the doctor.
However, health problems do not always take care of your insurance or your health availability. One day with my new job I had a stomach attack that kept me in the bathroom for 45 minutes. There was so much blood that I thought I had to be bleeding internally.
When I composed enough to return to my desk and call my doctor, I had to ask my new, all male employees: “Can someone go to the hospital?” Panic followed. After discussing the key discussions in which hospital I went in and who would call my parents, a colleague screamed his car to the front of the building and went to the hospital quickly and sometimes in the wrong direction. I tried to stay calm in the middle of the chaos, but panicked inside.
In the hospital, the tests showed no evidence of the source of the attack. I was instructed to make an appointment with a gastroenterologist, a GI doctor. I saw him the week before Christmas and he told me he thought I had a primary biliary cholangitis or PBC. As part of the diagnosis, the doctor ordered a liver biopsy to confirm this and said that in his 30 years of medical practicing he had only seen another person with this disease.
What was PBC? My mother and I sat in front of the doctor’s office in the car and searched on the Internet on our telephones. I read that I could need a liver transplant and that PBC could shorten my service life. I didn’t know if I would live or how long. We didn’t tell anyone, except my husband until after the holidays. I didn’t want to ruin Christmas.
The biopsy confirmed that I had PBC and I started taking a medication that provides me with the only PBC treatment for many years.
Some people have symptoms that lead to their PBC diagnosis, but I haven’t done it. However, after I was diagnosed, I had a serious diarrhea, which made my normal daily activities impossible. A memorable event found me crouched under an umbrella in the pouring rain on the side of a highway. With the help of my husband and my family, I completed myself and finally developed systems and tools to get through. In the hope of improving my health, I had a stomach operation in 2007 and believed -unrealistic -that weight loss would help with all my liver problems. It didn’t.
2022
I stopped investing my energy in wishful thinking and found that I had to live with my illnesses and not just had to survive. I started reunion with my upcoming high school. In the high school I was a wall flower: I did not take part in activities and keep myself. But today it became clear to me that this person had to change. I volunteered to plan reunification and the Reunion Committee issued a new award this year: the Butterfly Award. I won it because I had finally come from my Chrysalis. I knew I was on the right track.
I started the Advocacy work that I continue to do today. Every February I go to Capitol Hill to work for rare diseases. My goal is to knock on every door every year until there are no rare diseases to heal.
After a while, the PBC medication, which I had taken for many years, heard as well as working, and my bloodwork showed that my liver function got worse. My gastroenterologist retired, but through networking with other people with PBC I found a doctor who put me on a new medication that fits me as good for me.
Then the FDA took some steps that affected my ability to maintain medicine. My newly discovered advocacy and lobbying came to rescue when I later said in front of the FDA on behalf of the medication. After the hearing, the FDA took steps that make the medication available. I was heard.
My experience with a rare chronic illness taught me to find something good out of every bad thing. Today I have hope for new developments that will have an improved understanding of the disease. I wish more people with PBC knew that they have treatment options. There is no healing – that’s true – but you can make plans.
You can live a life and be a whole person, no statistics. I have PBC, but I’m not a PBC and I’m not defeated. Dealing with a rare chronic illness helped me to discover a belief in myself. I never knew I had it.
This educational resource was created with the support of Gilead.
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