A little but of me
My name’s Marylucy, I’m currently undiagnosed but suffer from “general das autonomy” basically all my organs are shutting down one by one. First, the intestines where I’m diagnosed with Crohn's disease and had to have emergency surgery leaving me with an ileostomy, but also it doesn’t move properly so I can’t have any food down there without having pain and bloating so I’m stuck with TPN. I also have gastroparesis so I have a J tube for meds and sometimes formula to keep a stimulus in the intestines and try to avoid infections bc bacteria from my intestines sometimes have to leave the bloodstream causing me terrible sepsis episodes. I also have neuropathy, it’s painful and makes me unable to move so I’m stuck in a wheelchair and taking physical therapy to regain a bit of movement and strength because my muscles are also deteriorating. Last February my heart decided to give up too causing me heart failure and perimiocarditis, I ended up on UTI with tube ventilation and hoped I passed the night. I did even recover in fewer days than expected; doctors called it a miracle: I’m a miracle! But everything comes back negative, they just know it’s an autoimmune disease but are not exactly sure what I have. I call it the big interrogation “what does Lucy have?” I have a lot of medical experts working on my case, everyone is determined to not give up until we have an answer and get me back on track to finish my career. I want to be a medical doctor (I’m just missing my social service) and I can’t wait to have my license to help a lot of people like me. I live in pain, everything hurts and pain is my companion in this journey but I don’t let it win. Even on the hardest day, I wake up, stand up and keep fighting this battle, even when it’s unbearable pain and even breathing hurts those days are when I’m at my strongest. As long as I have oxygen in my lungs and my heart continues beating I have faith I will get better, accomplish my dreams and get my life back to as normal as possible.
