I can feel myself shutting down. Everything feels like “too much”. Watching TV, reading a book–everything but going to bed feels like “too much”. When my alarm goes off in the morning, I count down the hours until I’m allowed to sleep again.
I know I’ve worked too hard wrestling my Crohn’s disease into perspective to let it all be erased by a scary lung CT. I know it’s petulant to wonder what I’ve done to deserve such bad luck. And I know I have no right to complain when others are suffering much worse.
I was able to find a pulmonologist who would see me before the end of November. She said that although she couldn’t “rule out cancer”, it was unlikely. Her concern, she explained, was that I was suffering from an atypical infection that invades the lungs of immunosuppressed patients like me. Not Tuberculosis but like Tuberculosis.
She explained that immunosuppressed patients don’t necessarily develop fevers but do experience night sweats and fatigue. I suffer from both, but don’t know if I’m waking up soaked due to Crohn’s or because my lungs are all blurry with white, flowing patches that have no name.
On October 1, I had a follow-up appointment with my gastroenterologist. He’s very nice and funny, but I couldn’t unfreeze my face. This has happened to me before, leading one inflammatory bowel disease surgeon to write in my medical record that I had a “flat affect” (and every time I read that, I still want to punch his face).
I remember the day that prompted this new surgeon to write that I had a “severe reduction in emotional expressiveness”. It was my first appointment with him to discuss a third small bowel resection that I really didn’t want to have. Instead of introducing himself, he forced me to explain my entire history to a resident, letting me believe that this resident was my surgeon. After the resident left, the real surgeon entered the room and forced me to explain my entire history to him again. I was under the impression that this appointment was to schedule the surgery, but he decided to order a series of meaningless tests before operating, costing my family an additional five thousand dollars.
I was told that this man was my only hope to make my third surgery a success and the thought was so angering that I couldn’t breathe. I knew I had to go through with it for my kids–to make their mom “less sick”. I appeared emotionless only because I was trying hard–so hard–not to cry.
I knew that my current GI didn’t deserve to not see my feelings and would worry if I didn’t tell him what I was thinking. So when he mentioned a fourth small bowel resection to correct narrowing that’s giving me daily symptoms, I told him that I felt trapped and overwhelmed. I started to cry as I explained that I couldn’t face another surgery now that I’ve gone back to work and my lungs were rebelling. He agreed immediately and said that he would always support me and would be there to see me through these new challenges no matter what.
The next day I had my bronchoscopy–adding another scope to my name. I woke up coughing violently and didn’t get to see my pulmonologist to ask the million questions I’d stored up for that moment. She told my husband that my airways were clear–which is good news–but that parts of both lungs appear to be infected. She’d “washed my lungs“, injecting saline and suctioning it back out to collect samples to culture. I wouldn’t get to ask her any questions but would once again, be forced to wait.
And here I am, waiting. Wondering. Hoping. Wishing. I’m still dealing with my Crohn’s disease and putting the challenges of “living sick” in its proper place. I’m not ready for another rocky, twisting, and unknown journey.
I’m not ready to add another disease to my name.