Hello World!

Welcome to my blog! If your life’s journey or that of someone you love includes any autoimmune disease or other chronic illness, you’re in the right place. My first autoimmune diagnosis came 37 years ago, and if there’s one thing I’ve learned, it’s that each new day is an experiment. On some days, everything seems to be okay, and positive strength triumphs, but on others, I want to escape to a peaceful place where good health prevails. While I am not offering medical advice (that’s up to your doctor), I will be sharing my story, the physical and mental aspects that create the autoimmune experiment. I’ll dive a little deeper into daily life including such topics as family, friendship, career, and gluten-free living, knowing the journey will never be perfect, but hoping to connect with all of you with a goal of making this daily experiment a bit easier for everyone. So who am I and what makes me qualified to guide you through these trials?

My name is Victoria. I’m the woman sitting in the locker room after my workout, feasting on jelly beans and consuming every calorie I just burned off so I don’t pass out. Even after 37 years as a type 1 diabetic, I can’t perfect my workout insulin changes. However, I can make some pretty good predictions on the amount of recovery candy I’ll need.

Breathing? I once took that for granted. Then came the abnormal chest images, additional scans that showed lesions on my liver, spleen, and bone marrow, plus some crazy neurological symptoms. After doctors told me I had cancer, a biopsy proved them wrong and led to a sarcoidosis diagnosis.

“Don’t worry,” they said. “Take a few months of prednisone; in most patients this disease is not a huge problem.”

A personality change, 20 plus pounds and a moon face later, I could breathe again, at least for a little while. I, unfortunately, am not most patients. I’m now on my second round of weekly immunosuppressant injections that I’ll take for the next two years. After that, my specialist says, “We’ll have to see what happens.”

Constant trips to the bathroom that sometimes last for several days. I thought I mastered the gluten-free diet, but gluten hides and celiac disease is always right there waiting to catch it in the most unforgiving ways. At the age of 30, I lost 27 pounds and could barely move by the time the doctors figured out this one.

I wake up feeling exhausted, as if I didn’t sleep all night. What is it this time? I’ll bet my money on my Hashimotos thyroiditis…but it could be sarcoidosis…or maybe diabetes…or possibly celiac disease; I’m not always sure which one to blame. Yet, I will climb out of bed and fight it because I realize by now that life is an experiment when living with four autoimmune diseases.

I go through the day not knowing which effects I’ll feel. When an itchy rash overtakes my shoulder or pain has me curled up in my bed crying, I may have no idea where it’s coming from, but I go through the trials, trying to find the most positive outcomes in each situation. Life is definitely about the blessings.

If you can relate to my experiences, the statistics show we are not alone. Millions of people around the world suffer from at least one autoimmune disease, and the number of victims is on the rise. Navigating life’s journey with chronic illness and managing the obstacles thrown our way is not an easy task. Therefore, if stories of My Autoimmune Experiment and the trials it brings each day can help even just one other person to find comfort and connection or even to smile or laugh, my intentions will be fulfilled.