I just knew something was off, this was 2018. I would swell so badly, the intense pressure in my lower belly, barely eating but gaining weight…I went to the Dr for over a year once it became too painful to have intercourse with my now ex-husband. No tests, a pap here and there, with “pre-cancerous lesions, but nothing to worry about, just work on losing some weight and it’s probably bad case of endometriosis “. I went back 4 more times. Even to the ER. Fast forward to 2020…I’m bleeding so badly, I do what to do, so I go to the health department. She listened when she went to give me a pap and there was so much blood nurses were grabbing 5-gallon buckets to catch it as I lay there in stirrups scared to death. I had to wait another two months to get into see the gyno specialist in my area, small town life, and there he sent me for an transvaginal ultrasound. I knew immediately something was wrong. Two weeks later, I have a LEEP, D&C, Cone Biopsy, and a vaginal lithotripsy. Countless tests, including the Natera Genetic testing, (I would end up positive for three mutations). There it is, “right adnexal mass, CYLD gene mutation, mass discovered incidentally 4.5 x 2.5 x 2.3 / 13.4 in volume. Trace fluid and left ovary not visualized due to size.” Markey Cancer Center at University of Kentucky became my home. Due to the rarity of the pathogenic gene mutation, I then find out I have what are mini tumors, hundreds, along my nerve line which has kickstarted front temporal dementia, or, you guessed it, ALS. I feel like a lab rat at that point or even the bearded lady at the circus. My care plan is a mile long at this point and my patience, not so much. Nothing seemed to work for me. In that time frame, it took absolutely everything from me. I got to where I couldn’t look in the mirror because I didn’t know who I was anymore. I became so mad at my own body for turning on me. I distanced myself from everything and everyone. I was dumped and left homeless living in my car. The bills just poured in while everything in me seemed to pour out. I had never felt so alone in my life. My mental health took a nosedive this past October. I know what’s coming, I’ve accepted it, but it doesn’t hurt any less grieving a life you will never get to have that you had planned for all because this relentless beast decided to invade my life.