According to a recent health.com article, some women live for 15 to 20 years in pain with an auto immune disorder before the right diagnosis and treatment. I’m one of those women. One of 22 million – a number absolutely staggering. And many of us think we’re crazy, are told we’re hypochondriacs and to just wait as the symptoms may go away. They don’t.
Having moved from Boston to Louisville, KY in midlife I had many stressful events that clearly added on to symptoms I was living with for years. The first doctor said I had Multiple Sclerosis. I knew this was wrong – I lived, ate and breathed MS my entire lifetime as my Dad was a quadriplegic from the time I could walk from it until six years ago. Doctor after doctor – from Lupus, Lyme Disease, Rheumatoid Arthritis and Fibromyalgia – the tests were endless.
I spent all of my energy focused on working and then collapse in the evening at home to regenerate. We just lost my sister at 53 to cancer, and I didn’t want to burden my family with how sick I really was. I also knew I couldn’t live my life this way. Looking back to the way my father was able to keep himself alive for so many years, with the help of a health circle – those around him to manage the various needs. His will to live was unbelievably strong – even when my Mom died 23 years ago. His intake of food each day was based on the nutrients he needed – no cheating. This was done without complaint. When his doctor said he needed to lose some weight – he cut out red meat and off came 20 pounds. This is for a man who cannot move, walk or exercise. When the MS further constricted his eating as his swallow muscles began to go, his food was cut and mashed. Still no complaint. Dad had a plan. He was going to live and the system around him was built to make that happen.
He inspired me to find the answers to my puzzle. I pulled out my baby books and receipts throughout my lifetime and mapped out every symptoms, shot and hospitalization. I work on Insights in a large health organization and used the process I created – to gather seemingly unrelated information to develop deeper meaning – Insight – into the problem. Then at the grocery check out I read an article that hit me between the eyes – I found my diagnosis.
Heading back to the doctor with my health map and he was amazed. “What are aliens” he asked, which started showing up in my 20s. I was afraid he would ask that. But once I switched from that white zinfandel wine (ugh) to bud light, every Saturday morning was spent in the bathroom. And the aliens would come out every so often with things I’d eat, but there didn’t seem to be a rhyme or reason. Symptom after symptom – starting since I was six years old and rushed to the hospital for what they believed to be appendicitis and ended up as gastroenteritis. Ah, gassy girl. Pretty.
The doctor diagnosed me with Celiac Disease and over the past five months I’ve been detoxing from gluten. I have my life back and when they say you don’t realize how sick you were until you get better – I understand. It seems to me that with complicated diseases we need better tools to help people. Like the ones developed to diagnose me, what we used to keep my father alive for so many years, and a way to help people manage their health and communicate better. Thus, I’m writing a book on the lifetime lessons from caring for people and myself – essentially project managing your health. I’m a blessed person and hope to help others figure out the system to live a better life.