Life As I Know It

It’s been weeks since you’ve heard from me. Mostly because it’s been weeks that I have functioned without some sort of challenge. Let’s see the last you heard from me I had received my first Remicade infusion treatment. That is when it all got rather…nutty, as Hippo would say. Within a couple of weeks of my Remicade infusion session I had a packed agenda. Hippo was graduating preschool, we were going to Washington D.C. for the CCFA Day on The Hill, I was being honored by the LA Chapter of CCFA during the Take Steps LA Walk and then my baby boy would be going to Texas to visit his father for about 6-7 weeks. Yes, my life was moving in a bunch of different directions and chock full of life changing, emotional, exciting activities.  The more I tried to plow through, the more nature and my body fought against me.

First Jax and I found ourselves fighting allergies, willing it to not turn into Asthma attacks, as we both have allergy induced asthma. And then suddenly the pain in my tummy and pouch became more and more painful and frequent. My sleep had abandoned me and I was surviving on water and little food. Something told me to call my gastro, who suggested I go into the ER. But the more I thought about driving myself, the more painful the cramp in my pouch got. So the next phone call was to my mother, who was unable to take me for a few hours. She asked me to hold tight. I told her, I could wait. But in reality, I felt like my pouch is about to explode. I was on the floor in my bedroom in tears, curled up in a ball. I had managed to get Jax looked after, so he never saw what was happening to me. By chance my mom was able to leave because her client was empathetic with my health situation. I was fortunate to get in touch with my brother who helped me down stairs to my mother’s awaiting car after I had fallen down a full flight when I lost my footing. I was diagnosed with pouchitis, dehydration and exhaustion. I was kept in the hospital for five days and in just enough time to make it to Hippo’s graduation with enough strength to get dressed up and FaceTime his father into the ceremony. But I was grounded. There would be no flying to DC or advocating on The Hill for me and Hippo. I wasn’t even sure I would make it to my walk.

But I did. I made it. I couldn’t exactly walk the full walk…actually, I had to stop after a few years from the start. But Jax led them out and I took to Instagram & Twitter to tell the story of all of those IBD patients and supporters that came out on that sunny Sunday in Santa Monica. We raised over $4k for Team Crazy Creole Mommy. I was not in Washington, but I was still raising my voice for change. But that night I had a hard time going to sleep because of the sore throat, tiny wheeze in my chest and watery eyes. Yes, Jax had gotten
and ear infection and I had just become a petrie dish of disease. I was feeling awful, sore and in pain…and my Hippo would be leaving a couple of days to be away from me longer than he ever had in his whole life. I was sick, snappy and emotional. I cried in the middle of the night and I tried to plow through my days. My arthritis was completely flared up and my heart was completely broken. I couldn’t even spend my last few days with Jax without the fog of illness. Then he was off to Texas for the entire summer until the time would come for him to start elementary school.

Yes, it’s been quite a struggle…but I’m back! Stay Tuned!