A Humble Newcomer: Wegener’s & MaryAnn
Reflecting on my journey as a newbie, I find myself immersed in a state of genuine humility. It's ironic how life unfolds, isn't it?
Allow me to provide a brief introduction to myself, a prelude, if you will: I am an ardent dreamer, my imagination soaring to outlandish heights, often seeking solace in the belief that anything is possible, even before the day has had its fill of tea. As a devoted admirer of Alice in Wonderland, I find solace in its whimsical wisdom, using it as a guide to navigate the complexities of existence.
Beyond the realm of wonder, I am a 39-year-old mother of two, both now in their late teens and early twenties. I have been blessed with a blissful marriage to my best friend for the past 10 years, and my heartfelt wish is to cherish countless more years together. Gardening provides me with a sense of grounding, reminding me that life finds clarity when my hands are immersed in the earth. I find joy in baking, cooking, and, on my good days, excelling in my role as a homemaker. Yet, I must admit, on my worst days, I can be quite a handful. Ah, the delicate dance of balance.
A few years ago, my life took an unexpected turn as recurring sinus infections plagued me for months on end, necessitating multiple prescriptions of steroids and Levaquin to subside. Then, in October 2019, I noticed an unsettling whistle-like sound accompanying my breath. Alas, there was a minuscule hole in my septum, barely discernible. Seeking guidance, I approached my general practitioner, who recommended a local ENT specialist. At this point, the tiny hole had expanded to a sizeable 2-3 centimeters. Initially skeptical of the specialist's referral to a more renowned professional at MUSC, I soon realized my misjudgment. To my pleasant surprise, the ENT specialist at MUSC proved to be the epitome of expertise, swiftly identifying Granulomatosis with Polyangiitis (GPA) as the underlying cause. He then connected me with a rheumatologist, also affiliated with MUSC, expanding my roster of specialists to six or seven, all diligently working to address various aspects of my condition.
Thus began my treatment journey, commencing in February 2020 with Methotrexate and prednisone. Gradually, I scaled up to 25MTX while concurrently tapering down to a 5mg dosage of prednisone. As my symptoms persisted, I recently transitioned to the injection method, albeit not the most glamorous experience. Subsequently, my rheumatologist proposed trying Immuran, although both she and I approached this with caution, considering the possibility of coexisting Rheumatoid Arthritis (special thanks to Jack, a fellow member, who reminded us that one ailment does not preclude the presence of additional challenges). As it stands, the current plan involves Rituxin, administered in two 1000mg doses, two weeks apart, every six months over the course of the next year. This summarizes my ongoing medical journey.
Throughout this process, I have gleaned invaluable knowledge from many of you within this community. Even when unbeknownst to you, your support and shared experiences have provided me with solace and comfort. I extend my heartfelt gratitude to all those who step forward, share their stories, and offer support. Witnessing the flicker of hope, kindled by each of you, fuels my own reservoir of optimism.
With Blessings,
Mary Ann