CW: Discussion of medical trauma
My name is Giselle, I’m 34, married, and a proud mom of two miracle children, both born after high-risk pregnancies that defied the odds. My medical journey began at 21, battling debilitating GI issues that led to a diagnosis of Colonic Inertia. After years of being dismissed, I underwent major surgery to remove my colon and rectum and received a J-Pouch. That was just the beginning. Complications followed: multiple ileostomies, eight intestinal surgeries, and septic shock that left me in the ICU while my son was just two.
Amid all that, I was diagnosed with Congestive Heart Failure. I now live with a defibrillator/pacemaker under my arm, my second implant after a faulty lead, and have endured shocks, cardiac ablations, and intense recovery periods. I’ve also been diagnosed with a long list of chronic conditions: Trigeminal Neuralgia, Occipital Neuralgia, Chronic Migraines, Endometriosis, Fibromyalgia, POTS, Spinal Stenosis, and arthritis in multiple joints. Add in a total of 16 surgeries and counting, a daily medication regimen just to manage the pain, and it’s safe to say my body’s been through it.
Recently, I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). I fight every day, for my kids, for answers, and for visibility. I hope sharing my story helps others feel seen and reminds them they’re not alone! – Giselle
Giselle is taking on the Light it Up Challenge this May and has submitted requests to have the Empire State Building and the Governor Mario M. Cuomo Bridge lit up orange on May 4 (fingers crossed!). Click here to take part in the Light it Up Challenge or to check out all of the Acts of Awareness Challenges for EDS and HSD Awareness Month here.
