June 25 2017
One of the hardest parts of having a chronic illness is figuring out when to say something and when to let it play out. Weird symptoms are kind of like the sun in the sky; they might be dulled by clouds, but you can always expect them. Sometimes stomach pain is just that, other times it ends up being a surgical issue. These symptoms can be the lightning before the storm or a wave in an ocean of them.
My recent flair has been a little all-consuming. My PA said that if things didn’t start to get better, we were going to run the full gamut: CT Scans, colonoscopy, blood work, you name it. I think she meant it to be reassuring, a “we will heal you” statement. However, feeling like nothing is healing has sort of made it a warning of the horror to come.
The fissure is still there and still painful, but I have sort of backed off of that issue for now. After much internal debate and a long conversation with Jon, I sent a message to my Digestive Health team. I explained that I recently completed a Prednisone taper, that I have been having daily headaches, stomach pain, sleeping more than normal and still waking up exhausted, that deep bone weary exhaustion. I also mentioned my moodiness.
The LPN checking the messages referred me to my PA, who recommended I get my cortisol levels checked. You know, it is never the answer you think it will be! My PA had to get approval from my head nurse, some other acronym MN-ARNP (Masters in Nursing, Advanced Registered Nurse Practitioner, I will admit…I had to look this one up!) who finally solidified the need to get a blood test done. In her words, urgently.
I am still awaiting results, but I can tell you…I wish that I had handled things a little differently. Usually news like this openly freaks me out. This time, without really seeing it, I turned to anger to mask the fear. Anger at the doctors for thinking that I can just drop everything to get a blood test on a whim. Angry at the looming co-pay. Angry that I was facing a new problem after killing myself to resolve the last few. Angry that the world kept going. Just, angry.
I often feel like I am alone in a giant field full of people who have vowed to practice Monastic Silence. Nothing I do, say, feel, fear, touch, or smell, can sway them from their belief. I am just there, screaming into an ocean of silent faces, wishing someone, anyone would hear me. See me. Help me.