I have had to convince Ayden that the store is no longer carrying Nutella for his morning waffles. Zandyr was disappointed that the chips in the cabinet were not salt and vinegar Pringles. The remaining snacks which I have deemed the “off limits zone” are nestled into one shelf in our pantry cabinet and they are quickly being devoured by my teenage boys who feel like they are going to miss out on some snacking adventure.
Ayden has started eating veggies at dinner again, with some protest but also said that the mashed cauliflower I made the other night is a “do again”. He also isn’t living off of fruit snacks and gluten free mac and cheese.
Zandyr isn’t living off of protein bars and all the carbs he can find.
We have gone for a walk after dinner the last 3 nights. I have been able to just walk out the door and enjoy the company of my husband and boys, and our insanely unsocialized dogs on our nightly walks.
I have used cooking the evening dinner as a decompression time from a busy day at work. I have also had enough energy to workout twice this week. Last night we had a few errands to run so we stuck to our nightly walk.
A week ago I was suffering. I had a rash that covered a lot of my body. My ulcerative colitis was starting to flare up which causes internal bleeding, pains, frequent and urgent bathroom stops. I had brain fog, was exhausted. Not the “I had a long day” kind of exhausted but the “‘my body is attacking itself from the inside” kind of exhausted. My hair was breaking and falling out in an alarming Craft spell kind of way and nightly my joints and swollen ankles reminded me that I needed to sit down and put my feet up. It has been a solid few weeks of not listening to the signs, of just pushing forward waiting for my infusion medicine to kick in.
Two weeks ago we planned a family road trip for the summer. A little over two weeks cruising around the continental US. I honestly was a little worried that I would make the trip miserable. That the only experiences we would have would be seeing all the rest stops and convenience store bathrooms across the good ‘ole USA.
After getting a little bit of a gut check as I read “Food Saved Me” by Danielle Walker, someone who also has been battling and surviving with Ulcerative Colitis, I knew I needed to do something. Not only do I want to be a good road trip buddy, but I want to have my quality of life back. I am tired of letting Ulcerative Colitis steal time away from me, my family and life.
My infusion medication does help with some of the symptoms, and I have seen a lot of improvement over the past 8 months of taking it. But as you read above it wasn’t kicking my UC in the butt, UC still had control.
On Saturday we cleaned the kitchen out, with the exception of the final items in the “off limits” cabinet. I bought all organic body washes and deodorants hoping that maybe the rash was due to gluten being in the previous products. I began meal planning, cooking and diving back into Paleo. The hardest part was throwing away all the amazing sugar free coffee syrups that I had gathered, but one look at the ingredients list and there was a good chance that was causing my morning extended grumpy tummy time in the bathroom, my inability to leave the house after going 6 or so times. So I made paleo pumpkin spice creamer – and damn is it good!
It is hard work, it takes time in the kitchen, and making things taste good to teenage boys is challenging all on its own. Something that Danielle said in her book that really stuck with me (well lots of things really) was that the time in the kitchen beats the time in the bathroom or hospitals.
Five full days of paleo. There is less internal bleeding, almost none. No more stomach pain. My joints are not sore, well except workout kind of sore. My ankles have not swollen. I don’t have brain fog or the same fatigue. The rash is gone. My hair is breaking less and the shower doesn’t feel like a scene from a movie.
Most important, I have gone for walks with my family after dinner.
I know that it will take time to completely heal. I am supporting my body and letting the infusion medicine work to its full capacity. I am optimistic I will be a good travel buddy come summer… one day at a time.
I post food as a way to hold myself accountable and share my story. I am posting this as a way to remind myself to stick with it.
I don’t want the list of symptoms to outweigh the positives. One day at a time. #ulcerativecolitisfighter
escapingcrazy 