May 11 2017

Who I want to be today

Today is day seven on the higher Remicade dose and day six on pills. It’s been a wave pool of emotions. First few days started great, life felt different. Then as the pills started to take effect, I could feel the adversary in them. We have a saying in the sick world — “Sometimes the symptoms are worse than the disease.” Now, I won’t go so far as to say that, but it seems the new dose of medication is triggering some of my other dormant symptoms; namely my Fibromyalgia. The joint pain is excruciating. I feel brittle and weak. Everyone is trying their best to tiptoe on eggshells around me, but I hate it. Love it. Appreciate it. Hate it. I am trying to pick up the pieces that have been fractured the last few months, establish a routine, and be alive in the moment. The challenging part is trying not to let everyone down, which is crazy because I know the person pushing me so hard, is me. I wake up, look in the mirror and I have to pep talk myself.
I have to decide who I want to be today.
I woke up with the wind fluttering through my open window and the sound of rain falling on the branches in the trees. I knew today could be anything I wanted. I decided to take the boys grocery shopping (a task I have been putting off), preferring peanut butter and banana sandwiches to actual cooked lunches. It was a family affair, and though it had its moments, it was everything I needed. Going to the store is not a difficult task, but sometimes even the easiest of things can seem hard. Trying to navigate around the store with a giant cart for kids, maintaining the kids and their prying hands while also searching the aisles for items on my list, yeah…it is enough to stress out anyone. But especially so when out of nowhere the pain comes. One of those quick, unexpected, right-in-the-gut, hold-onto-anything-and-pray-you-don’t-double-over, or let-out-a-yelp pains. Thankfully for me, Jon was there. I grabbed his jacket and he just knew, he turned to me and let me grip his hand with all my might.
Not sure when it started happening, but somewhere in our years together I just knew to take his hand. Steady comfort, like I can divert the pain, or maybe it’s just knowing that someone is there. That I am not alone. So there I am, standing in front of the cream cheese, gripping Jon’s hand with the strength of a mom pushing a car off her child, fighting back tears while trying to suck in deep breaths. I avoid eye contact with people around me, turn my back from the kids and hope they see it as mom and dad just embracing in the store. The thing with these unexpected attacks? Sometimes they go on endlessly like a Celine Dion song, and other times they are quick like lightning. For me, they always happen in slow motion. I can feel my heart rate speed up, I can feel the sting of tears and the pain stabbing like a dagger, but I can also feel the warmth of Jon’s hand, the pressure of his returned grip, the love emanating from him as he intertwines our limbs in a hug.
The attack fades and we go on about our day. I don’t like talking about these moments. They make me feel weak and betrayed. Jon says the pain will never go away, but he will always be there to help take away as much of the hurt as he can.

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Posted May 11, 2017 by in category "Crohn's Disease

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