The Spoonie Life:An Update

It feels like the semester that will never end. My last final is this Tuesday. My symptoms have been flaring. Brain fog is heavy. I frequently forget what I am doing. Or just become confused for a few seconds. At times, my thinking is slower with pain or fevers. It is hard to let go of perfection; to accept doing my best with school. I know I have put in a lot of effort.

Frustration with the spoonie life, specifically with doctors is setting in…again. At times, I feel like I am screaming yet no one  can hear me. I present with scary symptoms. Everyone agrees I am sick yet no one will help me. Sorry Doc, feel better doesn’t cut it. I know I am not a typical case, it is going to take some extra work and I am sorry, but it is out of my control. I would love to be a cookie cutter patient, but that is not my reality.

I have three doctors with three different options and no real plan currently. Last week I had several frustrating conversations. The ‘head’ doctor for my abdominal issues called me yet he was not quiet long enough for me to speak. He wanted to do a scope. I hesitated. I have had over half a dozen scopes in a few short years. I had questions. I firmly believe as a patient you should have a say in what medical testing you have and you should have all the information up front. I explained to my other two doctors that if I absolutely need a scope that is fine, after Christmas. Monday, the one doctor told me it is unsafe to do a scope due to my pain (I don’t think that is a legit reason. I’ve had scopes while in more pain). For now, I have a CT with barium and contrast in a few days, nothing fancy. I am praying it will give them what they want in order to move forward with treatment.

Sometimes, I want to jump off of steroids as fast as I can, like ripping off a band-aid. I’d like to think it would make things simpler. But my body freaks out and that makes me nervous. I want to be off. No one has a plan of action or anything in the event that my liver go nuts and my body begins to shut down…again. Being stuck is frustrating.

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Author: Victoria

Welcome, it is an honor you dropped by. I am Victoria. A twenty-something-year-old battling multiple chronic illnesses while learning how to thrive. Chronically Hopeful was designed to educate others and to provide support to those who are chronically ill. Proving encouragement to others is essential to me. I share my health on here. My major illnesses are Lupus, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, EDS, Mast Cell, Endo, and Ulcerative Colitis. I want to share my story with you hoping you will experience support; that someone else understands your pain, struggles, and frustrations. God has chosen not to heal me but to hold me. The more intense the pain the closer his embrace”. My faith, as a Christian has sustained me through the stormy waters of the past few chapters of my life. I desire to grow closer to God and lead others closer to Him. I help lead two online women’s Bible studies. I also post devotionals. I am pursuing my bachelor’s degree through Liberty University’s online program. Despite my illnesses, I have thrived in school. I am a member of Phi Theta Kappa Honor Society, Psi Chi the International Honor Society, and Tau Sigma Honor Society. Abby is my service dog in training. I also have three cats Gracey, Fluffy, and Sadie Rose. I am looking forward to hearing your precious story. Sending hugs, prayers, and spoons. Have an amazing day!

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