Musings from the Surgical Center Waiting Room
I am shaking a little bit with nervous tension. It's only been five minutes since I've tucked myself in to a corner of the waiting room. I keep thinking about the look on my daughters face as they wheeled her into the operating room. This look of terror and anticipation and relief. This surgery was a long time coming, but nevertheless , surgery is surgery, as her concierge doctor reminded me this morning, when he motioned me in to the hallway to discuss the past few days.
My daughter has this weird disease called Dysautonomia. It took a long time to diagnose. She is constantly bombarded with horrible symptoms, from tachycardia, to syncope, to horrifying migraines, to gastroparesis. One of the crazy symptoms, which we haven't gotten clarification on , is the spontaneous lyses of adhesions that she developed, and now develops after each surgery ,that cause excruciating abdominal pain.
Throughout all of her medical woes, my daughter works full time, and got married last year to her high school sweetheart , and takes care of her poodle.
Everyone who knows her, loves her. She would give you her last ounce of strength (which we call spoons) to help you.
No one knows the pain that she suffers, except other people that have her disease. No diet, no alternative therapy, no course of treatment , has been able to give her any long lasting relief. It hops from one autonomic system to another.
Last night I read in our Facebook group that a young woman with her condition died.
Because doctors are so used to complaints, they sometimes miss things like blood clots, or aneurysms, or a heart attack, or a ruptured appendix. That's because the day to day pain level hovers around 7 or above. Most doctors have never heard of this condition , and have to be educated in the emergency room.
I spoke with the anesthesiologist before the surgery and asked him if he was familiar with the disease. He said he had looked it up that morning. Instilling confidence in me. Not much.
I look around the waiting room at the faces of the other people. I am alone, but not alone. Waiting is the hardest part.
Carri Levy is an Accidental Advocate.
Creative Director, Healthcare
8 年I too am an Accidental Advocate. My daughter has a rare disease called Transverse Myelitis, which has left her paralyzed. Being a parent of a child with a rare disease is pain beyond words--and difficult for others to understand. Your daughter sounds incredibly brave and brilliant, and you do as well. My heart is with you and your family, and others who are dealing with a rare disease. Together, we must do all we can do to get the word out about rare diseases to everyone, and galvanize action. Please let me know how I can help.
Private Genetic Researcher
8 年You are so very brave and far from being all alone..... I Promise You. : )