Let Me Reintroduce Myself Part II

In 2009, I welcomed my little Hippo. He was perfect. No complications. He was insured. My kid had health insurance, his father had health insurance…suddenly, I did not, again.  The bliss of having health insurance because of my high risk pregnancy, was taken away as quickly as I received it. Living as a fairly healthy person for about 7 months was taken away about 9 weeks post partum. And my life would never be the same.

When my first ulcerative colitis flare happened after I gave birth, I still did not have a great grasp on what was happening to my body. I started experiencing symptoms that I normally would not equate to a gut disease. So, I shrugged off the rapid weight loss, massive hair loss and joint pain as post partum life. My eye irritation was self diagnosed as pink eye. I found an excuse for every other symptom. I didn’t know, because I had no access to a GI, a Rheumotologist, an Opthamologist, a Dermatologist or an OB GYN because I had Inflammatory Bowel Disease which was a preexisting condition. And patients with pre-existing conditions couldn’t get health insurance coverage. With a new baby, my inability to work and the $600 I paid monthly in medication, I was doing nothing but self diagnosing. & deteriorating. In the most dramatic of moments, I found myself calling my disabled grandmother to come and help change my baby’s diaper as I sometimes found myself with fingers cramping in the middle of a diaper change. Or asking her to help heat bottles, fold clothes, tighten seals on breast milk storage bags and just about all of my stay at home mom duties. I spent my child’s first Easter lying on the couch watching him put plastic eggs in his mouth. My first mother’s day watching him crawl for the first time on my hospital bed. Sitting in a infusion center with my baby and sister, getting iron infusions while teaching Hippo his ABC’s. I attempted to work part time in a restaurant on the weekends after caring for a baby all week, just to help with the financial burden my life partner was forced to bear. But I was soon let go when I spent more time in the bathroom vomiting than delivering food.

I found myself finally stable over the summer, enough to work on an after school home and make the decision to move our entire family from Los Angeles to San Antonio. With hopes of new beginnings and the possibility of health insurance. But leaving the opportunity to attend one of the best IBD Centers in the country to begin seeing a GI who was not an IBD Specialist who didn’t believe in pain medication or biologics. I was told I was not eligible for surgery or anything outside of the medication I was clearly failing. The financial, physical and emotional strain rained over my household like a hurricane. And eventually our personal levees broke. I found myself on a plane with my toddler on my lap, my mother carrying my purse, heading back to the place of my birth with a broken heart, inflamed intestines and $200 in my bank account.

Seven months later, I was weighing in at 99lbs. My attempts to go back to work were futile. Trying to swallow anything larger than my spit, was nearly impossible. I was a ghost traveling through my own life. I was gaunt, gray and listless. On one particular day in March, my body spoke to me. As I got out of the shower, my body screamed at me to call an adult. Something was wrong. I called my grandmother and she rushed me to my GI. Before he walked into the room and stopped in the doorway. He asked my grandmother how long I had been this way. She said, “Since January. But she keeps telling her mom, she’s okay.” He told her to take me across the street to the ER and he would see us over there after he signed some paperwork for another patient. I was admitted. I didn’t leave until April 14th.

On April 5th, my case was forced on the board by my insistent surgeons and my mother’s influential friend. No one wanted to take a chance on a girl who had about a 30% chance of surviving the surgery and who didn’t have health insurance to pay for the surgery. Would taking my colon out even make a dent in my health issues. My body was so far gone. But the surgical fellow didn’t give up. He gave my mother every single way to get around the system and encouraged me to visit with my son. He sensed my fatigue of fighting against this disease. He said I needed motivation. They placed my baby in my lap, I tried to hold him close, but I was too weak to really put my arms around him like I wanted to. He talked and babbled, kissed and laughed…I prayed he would remember me when I was gone.

But I’m here. 6 years later, I’m here. I’m more here than I was before, if that makes any sense. I survived. More than that I am living. I’ve turned my story into a blog. I’ve turned my platform into advocacy. I’ve used my voice for change. The Crazy Creole Mommy Chronicles has expanded beyond my url and my story has found temporary homes in online & paper publications across the globe. I wear my IBD badge with honor.  My life is a series of wins and loses. But if I sit down, if I think about my life as a whole…I’m fortunate to say that I have more wins than loses. I’ve found purpose, love, life, friendship and courage through living with IBD. For that I’m grateful to IBD. I am also proud of myself. I’m a mom. I’m a survivor. I’m an advocate. I’m a citizen. I’m a daughter. I’m a sister. I’m an aunt. I’m a niece. I’m a cousin. I’m a friend. I’m here.