I have recently (July 2019) been diagnosed with various autoimmune diseases. One of which they are now considering may have overlapped into a second autoimmune disease (AIH/PBC) both attacking my liver. I’ve been told I have Stage 2 Primary Biliary Cholangitis (with possible overlap syndrome) and Celiac Disease. I am currently taking Ursodiol and following a 100% gluten free diet.
Since my diagnosis, questioning my entire existence is a regular occurrence. I worry about my family and the impact that my illness will have on them. I’ve grieved for the changes I’ve already had to adapt too just in order to live. I’ve gone through far too many Kleenex boxes trying to understand, even a fraction of why this is happening. And I’ve decided to live. Regardless of the unknown, fear will not control the rest of my life. I will do everything in my power to fight this, regardless of whatever the statistics say.
My entire life has been devoted to taking care of others and I feel extremely passionate that there is a purpose for me and this disease and it’s my pleasure to grasp onto that feeling and turn it into tangible support for all of the people impacted by this unfortunate diagnosis.
This is the beginning of a lifelong journey I will now be on to bring awareness to PBC and help advocate not only for myself, but other patients affected by this. I haven’t decided fully the avenue that I am going to take as an advocate, but I’m actively brainstorming what I can do to make a difference. On behalf of all of us out here fighting, I must help. This is still in its infancy, but I believe it’s a new chapter to my purpose-driven endeavor to make a difference.
Traci’s words of wisdom to the newly diagnosed?
Ask questions! Do not be afraid to speak up for yourself. You are your best advocate. I keep a medical binder with all of my recent labs, radiology, and physician clinical summaries. I bring it to all of my appointments and share with new providers so they have an accurate and updated chart for me.
Last updated on July 11th, 2022 at 04:10 pm