A little bit about
Livie…
I have spent most of my life in and out of medical offices for one thing or another. Most of the time the appointments have been for a few short minutes and before I sit down it is time to go.
Does this sound familiar?
When I was diagnosed with my first autoimmune disease, Endometriosis, I was fresh out of college and felt as if I was blindsided. My ability to have children was stolen from me. Since then, Celiac, Fibromyalgia, and Chronic Migraine disease with Aura. It wasn’t until recently that I learned more about migraine disease that I had been suffering with it my whole life, even as a child.
Now it is time to take a deep breath
before I continue…
In 2018 , I was diagnosed with PSC then in 2021 I realized from now seeing an excellent Hepatologist that I actually have PBC. Then later that year -Hypothyroidism and Hashimoto’s Thyroiditis, by the end of that year, Autoimmune Urticaria (hives) and Sjogrens. There are more but I don’t want to continue to overwhelm you.
I am still, to this very day, August of 2026, in the process of being tested for more medical diseases. There is one thing I have observed in my life that seems to link or connect all of this together, as a possible trigger or cause - a virus.
I am not a doctor.
I will share with you that I have had my tonsils removed 2 times. The first time when I was a child at 18 months. The second time when I was an adult in my thirties! Yup, odd because they grew back after a very stressful time of trauma when I was a passenger in a cab that was in an accident. That accident also triggered Celiac. The other connection is that I have had Epstein Barr virus 3 times, first was 26+ years ago when my gallbladder stopped working and the other 2 times within the past 2 years. Each time, within the past 2 years, my body, and my immune system were so attacked, weakened and stressed. I know the virus caused my immune system to be so confused that I broke out in hives all over my body for nearly a year. Additionally, I have had Shingles twice and was practically running to get the new vaccine when it came out several years ago. I just know that EBV, more recently, activated the Sjogren's disease that has turned me into a human raisin! Now my list is longer and has been added to my autoimmune diseases in my medical diagnostic diary.
“I would rather collect anything - handmade quilted blankets that tell stories, rather than collecting
autoimmune diseases!”
I want you to know that I am very aware that I am not alone with my crazy medical journey. I am sincerely interested in learning more about you and your journey. I also know that even though we haven’t met in person yet, we probably have more things in common than most people.
“I am annoyed and frustrated with of being sick and insanely fatigued! “
I am determined to figure out more about the causes or connections of autoimmune diseases. I also want to raise more awareness for -
PBC- Primary Biliary Cholangitis,
a rare, progressive
autoimmune liver disease.
My plan is to advocate for all of us so that we can have better communication during the testing and diagnosis process. I also want more research for the treatment options.
Most importantly, I want true care for our health, preventative care.
I want us to be proactive to start out healthy and keep us healthy.
Not to go to the medical clinic or ER because we are in a spiral of symptoms and in panic mode of what now?”
I hope for care for the entire
mind, body and spirt
=
mental health therapy, physical therapy, and emotional supportive therapies.
“I don’t think that is too much to hope for in life.”
Please know that
you are loved,
you are not alone
and I am right here with you!
Xo Livie
