I strive to appreciate life and generally don’t like to focus on the negative. However, I feel compelled to write about this topic because I know there are many people that feel alone in what they are going through. My intention and hope in sharing these personal details is that they reach anyone who feels alone or stuck with their health issues. If that is you, please know you aren’t the only one. You don’t have to believe everything doctors tell you and you don’t have to blindly accept what’s been handed to you. You can take charge of your own health.
I am one of many people who has been told they have an illness for which there is no cure and there is no other option than to sit back and wait. I refuse to accept this fate.
I have found great support in blogs, Facebook groups, books and internet forums focused on natural health. They provide valuable tools, inspiration and suggestions. I have learned so much through these resources that I joke with friends that I’m practically a doctor now. This is just a joke of course.
In November 2014 I posted my personal health story here. At the time it was too painful to get into the details of primary sclerosing cholangitis (PSC). But time has since passed and I am eager to connect with a support network about this condition.
PSC is an autoimmune disease of the liver. Autoimmune diseases occur when the body attacks itself. In my case, my body is attacking the bile ducts in my liver. The purpose of the bile ducts is to drain bile (and toxins) out. When they are damaged the liver is not able to flush out toxins. This can cause a buildup and damage the liver. PSC usually results in a liver transplant.
I’ve known that I have PSC since 2005ish. As I wrote in my personal health story, it was a shock at first, but since then I have been living symptom-free so it was something that did not affect my everyday life.
This past October I had a routine MRI test. The next day my doctor scheduled an appointment for me to meet with a surgeon. They found new damage to my liver and suspected the possibility of cancer. This rocked me to my core.
After two visits to new specialists and a procedure where a tube with a camera was placed down my throat to inspect the area, it was determined that it is probably not cancer, but the natural progression of the disease.
I asked my gastro doctor about a diet to reduce inflammation. He suggested a vegan diet. I asked the liver specialist about natural remedies. The only thing he suggested was to stay a healthy weight. I contacted a naturopathic who suggested a gluten free diet.
I’ve scoured the internet for alternative treatments for PSC, but haven’t found much. This is what I’ve got thus far:
The Liver Doctor: Dr. Sandra Cabot
Survivor of “incurable” cancer Kris Carr
Blogger and PSC transplant survivor Emily from She Chooses Joy
Another blogger with PSC: Journeys into Wild Health
PSC isn’t common and I’ve never met another person that has it. For the person that’s just been diagnosed, I want to share that it is possible to live a healthy, full life with PSC. For the person struggling with unpleasant symptoms, there is a whole world of possibility with holistic health (in conjunction with traditional doctors). In less than four months I was able to wean off prescription drugs (for ulcerative colitis) that I had been taking for ten years by following the GAPS diet. Don’t try it without checking with your doctor first. Mine was apprehensive but gave me his blessing to move slowly. When I asked my doc about high strength probiotics he told me they haven’t been scientifically proven enough for him to verify their use but that he doesn’t believe that taking them could hurt me.
As I’ve started eating sugar and non-gluten carbs, I’ve noticed some colitis symptoms return. I am slowly beginning to realize that I have to listen to my own body more. I’ve read and followed a lot of information, but I need to pay attention to the cues my body sends me. It is a learning process.
Today I have the courage to share my story because I feel supported and loved by my family and community. It’s still not easy to be vulnerable, but I believe in the power of authenticity.
Are you living with a chronic illness? How have you taken charge of your own health? Where do you find support and connection?
Making kale chips with Max