As I sit in the waiting room of the infusion center, I am struck by how comfortable I’ve become in the waiting room of a doctor’s office, especially this doctor’s office. I’m one of the lucky Crohn’s patients whose doctor runs an infusion center with a nurse for every three patients receiving an infusion. Many have to go to the hospital chemo center and spend the entire day there.
Remicade is an immune suppressant medication administered via an I.V. drip. The traditional modern medical community is very comfortable with these immune suppressant medications. Although patients see varying results, I’ve been told again and again, the risks from the medication are less than allowing the gut to be inflamed for long periods of time.
I was very resistant to starting Remicade. When the pamphlet lists “death” alongside a seemingly endless list of potential side effects, I think any reasonable person would take pause. But eventually, my symptoms were so bad I could hardly function and starting Remicade felt like an emergency. I experienced big improvements in the first couple days and weeks. This took the edge off which I was extremely grateful for but then progress plateaued. I didn’t get worse but I also wasn’t continuing to get better. I was still in pain constantly.
While sparing you the gory details, I will tell you it was miserable. I started thinking my symptoms were just part of my new life. I had already tried every diet possible which all helped (some helped significantly) but none took away the pain. The decision came down to accepting the pain or digging deep to learn to listen to my body and let it guide me to the next step. With nothing to lose, I decided to put in the effort and learn to listen. Challenge accepted.
It took a good 6 months before I could even discern anything my body was telling me. Slowly, I came to the conclusion that I needed to change my relationship with stress and my skewed and dangerous lens that working to the point of pure exhaustion is the “right thing to do.” This recognition came with a whole lot of fear.
I had always operated that way and truth be told, it had served me well! Or at least that was what I thought. It was time to stop trying harder in the same way I always have and start trying different.
Today, I sit in a very different place than I did one year ago. In minimal pain, starting a new business and with a changed view of myself in the world. It may sound like a linear path. It wasn’t. It still isn’t. Not even close. I still get flares and have bad days. It’s more like a ton of effort, a bunch of frustration and confusion then slowly but surely coming out the other side with marginal progress, repeat.
That’s why I started this blog. As I learn, I want the readers to learn with me. Many chronic diseases are invisible from the outside but I am continually surprised that almost everyone knows someone in their inner circle that is battling a chronic disease. Let’s help each other!
Coming full circle back to Remicade, I am now faced with a big decision. Do I stay on Remicade where my GI doctor is comfortable? Or do I listen to the inner voice I’ve cultivated that says, “you’ve taken a 180 with your lifestyle and you have the tools, supplements and support to try stopping the infusion, give it a try!”
How do you make nuanced decisions where the pros and cons list is nearly impossible to know for sure until you’ve already walked down the path?