Amanda Maldonado

First post: May 8, 2020
Welcome to my page and thank you for visiting. I got sick about four years ago. I started losing weight without trying, and was constantly nauseated and sick. No one seemed to know what was wrong, most doctors thought I was making it up or that it was all in my head. They started taking me seriously when my weight dipped below 100 pounds and I started showing signs of being malnourished. Then it got much worse. I started having flare up where I would experience extreme pain and intractable (non-stop) vomiting. These flare ups started occurring every two weeks to a month. When they happen, my condition quickly becomes life threatening. I often have to be admitted to the hospital to manage these flare ups. When I’m sick like that, I lose potassium which puts me at a higher risk for cardiac arrest. It also becomes nearly impossible to manage my blood sugar, as I am also a Type 1 Diabetic. After extensive testing, I was found to be suffering from Gastroparesis. Basically, my stomach is mostly paralyzed so I cannot digest my food. Due to the severity of my condition, it became necessary to place a feeding tube. On June 26, 2019, I was admitted to UF/Shands Gainesville for surgery. They placed a surgical J-tube. The Jejunostomy tube delivers a calorie dense formula directly into my small intestines where nutrients are absorbed. While it does help keep me from becoming severely malnourished again, it doesn’t stop the pain and nausea. I’m sick almost everyday. Some days are better than others, but I require a lot of medications to help me feel somewhat ok. Unfortunately my good days are few and far between. Flare ups, on the other hand, are not. They still occur every two-four weeks and put me at risk. During this crisis I was also clinically diagnosed with Ehlers-Danlos syndrome. EDS is a genetic connective tissue disease. It causes chronic pain and several comorbidities such as POTS (Postural Orthostatic tachycardia syndrome). POTS causes my heart to beat abnormally fast, mostly when I stand or walk or engage in physical activity. In addition to these conditions, I also struggle with a pituitary tumor, and a rare condition known as Idiopathic Intracranial Hypertension. This disorder causes a build up of cerebrospinal fluid on my brain. Cerebrospinal fluid flows through your spine and into your brain. It is meant to protect the brain. A normal persons body will drain the fluid. Mine will not drain properly. It causes severe headaches and can result in blindness if not properly managed.
I fight every day of my life to survive. There have been more than a times that I nearly lost that battle. I’ve come to terms with the fact that I might not have as much time as I had hoped for, but my biggest fear is leaving my daughters. I’m also a single mother of the sweetest 10 and 12 year old girls. I have been blessed to have very well behaved children (don’t take my word for it, just ask anyone who knows them). They are so patient with me and understanding. They don’t ask me for expensive things or get upset when I can’t do things for them. Despite all of my health issues, I consider myself truly blessed to have them as daughters. They make this crazy battle worth fighting.
Thank you for taking the time to read my story. I will be posting updates here as I get them. Love you all. Xoxo