Hi, I’m Shirley.
I have a story to tell here, but it’s not just my story. It’s OUR story. It’s OUR ongoing story of living with chronic illness. It’s OUR story of heartbreak. It’s OUR story of frustration. It’s OUR story of anger. But, it’s also OUR story of daily victories, OUR story of winning against all odds, and OUR story of strength and survival.
This is OUR collaboration of HOPE. This is a sanctuary, a resource, a place to find yourself, and connect with others like you, who are battling chronic illness, and understand exactly what you are going through.
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Early on
My chronic illness began for me on September 11, 2001, a day that changed the entire world. As the towers fell, my life was altered forever by the introduction of, an unknown to me, staph infection. I had no idea that this seemingly innocuous infection would not only take over the next 18 years of my life, but literally almost take my life 3 times. After years of battling multiple, horrific, mystery infections, I got really tired of the lack of answers I was getting and the constant barrage of antibiotic prescriptions. I began researching anything and everything I could get my hands on. The information available to me was vague, confusing, and depressing. Why was it so difficult to find answers? Why was this happening? I became my own health advocate and a TORNADO of a patient. I was laser-focused and did not let anything slide. I assembled my dream team of doctors who actually listened to me and partnered with me. It wasn’t easy and it didn’t happen overnight, but one by one, I finally got ahead of my symptoms. Then, I worked to find the underlying culprit. It was a sleuthing task like no other, but by the end of 2019, I said goodbye to 18 years of illness. My indicator numbers had closed in on “normal” for the first time in 5 years of tracking them. I couldn’t stop the tears of joy running down my face at my doctor’s office. It was magnificent. I need to share that story. I need you to share your stories. Together, we may be able help someone find their answers and their tears of joy.
Current
My journey to wellness continues today. I still try new things, new recipes, new exercises, new ways of living. I believe that improvement, even in tiny increments, is still improvement. My journey to wellness also continues, unfortunately, due to new health challenges. Like many out there, I recently contracted Covid-19. I had a relatively mild case. Thankfully, I had gotten ahead of my autoimmune disease just prior to Covid. I know I would not have survived the virus otherwise. My body fought Covid-19 like a warrior and won, but today, my body continues to fight. It thinks we are still at war and the inflammation is big, and it’s real, and it’s painful. My focus now is on researching what some are calling Covid “Long Haulers’ Syndrome”. This inflammatory response includes a long string of horrible symptoms that have no real rhyme or reason. They magically seem to appear just after Covid. Soooo, my battle does continue, but this time, however, I’m way better prepared and I’ve created a support network to rival an army. I’m going to share everything I learn along the way. I’m going to ask more and more and more questions until we have answers. I’m going to ask all of you to join me. WE are going to be a TORNADO. Together, nothing is impossible. We’ve got this!
