“There was something wrong with my body. I was told my illness was all in my head. Was I really crazy? Something deep down inside of me knew I wasn’t.”
‘I went into anaphylactic shock and had to be given adrenaline to keep me from dying. My body turned red and I started to pass out. She had to speak to me through the doorway.’
‘You are a 13-year-old girl with a sick dad, you must just want attention.’ I was heartbroken, betrayed by my best friends. There were YEARS of doctors saying, ‘We don’t have an answer why she’s in pain.’
“Can you imagine being 15 with a cane in high school? I was called ‘the blue cripple’ because my cane was aqua blue. My Spanish teacher saw my cane for the first time and yelled, ‘YOU HAVE A WALKING STICK? OH MY GOD!’”
‘Mommy am I going to get so sick that I die?’ These words tumbled from his lips, my heart broke into a million pieces. All I could do was hold him close as tears ran down my face.’
“I spent many a night convincing myself the diagnosis was wrong. I mean doctors mess up test results all the time, right? At first the guilt of knowing we passed on the gene for this condition was all-consuming. Even though we had no idea, we still blamed ourselves.”
‘When I was 19 I woke up screaming in pain, as if I was in labor. A million knives were stabbing my stomach. I tried to get to the bathroom, but I couldn’t stand. It became a regular occurrence.’
“I was told it was ‘just the pill’ or ‘just a bad period’ and it was ‘nothing to worry about.’ One doctor told me it was ‘just arthritis’ in my back from being a dancer. I’d never have another boyfriend because one guy had already gotten angry at me for bleeding on his bed sheets.”
‘I blurt out, ‘I want the surgery.’ I’ll never forget the look on his face. What kind of patient asks for a major life changing surgery? I kept replaying the conversation my mother and I had.’
“My mother was my best friend and I couldn’t accept she would be gone soon. I refused to discuss it with her until one day she said to me ‘You can ask me anything you want.’ That was all it took.”
‘My sister arrived to find me trying to clean up another bladder accident. She pulled out a pack of Depends. ‘Well I guess you WILL be needing these!’ I reluctantly took the pack from her, and put on the adult diaper.’
“I’m scared of finding out what’s really wrong with me; I’m scared of how fast my health is declining; I’m scared I won’t be able to be the super mom and wife I have been; I’m scared because I’m not able to work; I’m just scared!”
‘The doctors were so shocked by what they saw in the first scan, they ordered another to ensure a mistake hadn’t been made. He told me he had never seen anything like it before.’
“I asked myself a million times ‘Why me? Why is this happening to me?’ I was in so much pain and my stay in the hospital felt never ending. It was a difficult mental space to get out of.”
‘A car of teenage boys drove past and yelled out, ‘Ugly, bald b***h.’ I pushed myself back to work. I didn’t want to let anyone down.’
“I started to master the fake smile and the ‘I’m fine’ answer to people’s questions. My body needed a break. And then the cutting began. Kitchen scissors were used.”
‘I was struggling so bad mentally my doctor wanted to admit me to a mental health facility. But at one of my routine lab draws, we found out I was pregnant. I was absolutely terrified. I was in no place to have a baby.’
“Watching him leave was one of the most difficult times in my life. He got on the bus and headed off and I bawled my eyes out as I watched the bus drive off. I missed school the next couple days because I was so upset about watching him leave, knowing I wouldn’t have any contact with him.”
‘I’m sure it’s just stress.’ I heard these words from doctors who over 15 years couldn’t figure out what was wrong with me.’
“All of these doctors told me they didn’t know what was going on but I could take strong prescription meds to deal with the symptoms. I didn’t just want to deal with the symptoms. I wanted to know the cause!”
