What Did it Feel Like When You Realized that You Forgot?
To be honest, I completely forgot.
I forgot what it was like to live a life that didn’t look like this.
Labs and infusions and pills - so many pills.
Appointment after appointment. Doctors on speed dial. Lists of symptoms. Deficiencies. Allergies. Medications. Supplements. Side effects.
I forgot that this isn’t normal for most people
Let me rewind.
Last week, I spent several hours at my infusion center to receive my routine remicade infusion through a port in my chest. During that time, I watched Netflix, did some work, wrote a little, and texted with a friend. A healthy friend. A friend I love very much, but a friend who is not entirely familiar with the ins and outs of what I lovingly refer to as “the chronic life.”
She asked me what it was like to feel something flowing into my veins. She told me that she’s never had an IV before. In that moment, I was so glad that we were texting, because if we had been on the phone or face to face, she would’ve seen me literally stop in my tracks. When I paused to think about her question, I realized something that felt significant to me.
My friend meant nothing by asking me this question. She didn’t mean to upset me, to make me think, or even to serve as a comparison between her life and my own. She cared about me, and she just wanted to try to understand more than a basic explanation of how Crohn’s Disease affects my life from day to day.
In that moment, I remembered that what has become my routine is entirely unfamiliar to many others
When I got home that night from my infusion, I made a list of all of the things that I have long since stopped thinking about related to my life with IBD. I was surprised to see on paper all of the things that have become second nature to me. Here’s just a few, in no particular order.
- Running to Walgreens to pick up prescription refills
- Setting time aside each week to fill my am/pm pillboxes
- Routine appointments for medication related lab work
- Scheduling life around trips to the infusion center
- Becoming used to needles - for blood draws, peripheral IVs and to access my portacath
- Stocking my cabinets with Drip Drop packets, especially during the summer
- Never leaving the house without a water bottle, medications, wipes, calmoseptine and an extra pair of underwear
- Pre-screening restaurants to ensure they have something safe on the menu
- Knowing where there is a bathroom, regardless of where I go
- Regularly using the apps DrugStars, MyChart, Walgreens, Blue Cross Blue Shield and SitOrSquat
I reached a point where I stopped writing, and began to really think about everything I had written down.
I expected to feel sad
I began experiencing symptoms of IBD 9 years ago, and although there were short bursts of “normal” in the beginning, the routines from my old life have long since faded away. After coming to this realization, I expected to feel sad.
Instead, I was distracted by the feeling of gratitude
Sure, the daily normal I live now is different than I once could have imagined; but in a way, I feel like it has set me up for success. I almost never feel unprepared, whether that’s having the right things in my house, in my purse, or as a resource in my phone. When my family or my friends have medical questions, especially if they involve the GI tract or medication reactions, they know they can call or text me at any time of the day or night.
As I begin to walk through the In-Vitro Fertilization (IVF) experience, I am not afraid of the injections, the blood draws, or the surgical procedures. I’m not worried about being a mother when my child gets sick, because I know I will always be able to empathize with their pain. I even realize that I have become thankful for the quiet and the boring days, because if I am not dramatically ill, there are things to be grateful for.
In truth, I’m not entirely sure when I forgot that my normal with Crohn’s Disease wasn’t just my normal, but I’m glad that I did.
What about you? Did a certain moment, friendship or experience make you realize that you’d forgotten about your IBD adjustments? I’d love to hear your stories below!
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