I didn’t really notice that I had an eczema problem until my newborn son was about a month old. I only was vaguely aware that as each day went by I lost more dexterity in my fingers and the pain grew, but I hadn’t slept much or eaten much. When my son went to the emergency room with a staph infection and we spent a week in a quarantine room in Children’s Hospital I was preoccupied, but in the rare peaceful moments in that semi-dark room with all of the humming machines, when my baby wasn’t crying in pain and the doctors and their scary words like “cancer” and “white blood cell enzyme disorder” were off with other patients I would notice that my hands were itchy and hot. It wasn’t until we were home from the hospital and starting to fall into a rhythm of new parent life that I went to open the door to our bedroom one morning and realized that I couldn’t grasp the doorknob because my fingers were bright red, swollen to twice their normal size, and slashed at all of the joints with deep purple cracks that oozed blood.
That was 18 months ago. Today I am typing my first blog post in over a month because for the first time in several weeks I have fingertips that are not bleeding. I still don’t have all of my fingerprints back yet and my thumbnail on my right hand is still threatening to fall off where the eczema has crawled down into my nail bed. I could have written about this months ago but I avoid the topic because I don’t know how to make this long story short, and I don’t know how to organize my thoughts. The topic is deeply emotional for me.
Severe eczema is ugly, visible and contagious-looking. The red, scaly skin and open wounds spread from my hands, up my arms, to my face and mouth and eventually my eyes. Although it has been constant for 18 months, “flare ups”, where my symptoms get noticeably worse, come and go. Sometimes, after a particularly stressful week I develop something called dishidrotic eczema, where my skin will boil with large blisters filled with brown fluid that feel like cold sores. They are are so painful that if anything touches them I can’t keep myself from crying. For weeks I would sob every time I had to wash my hands after changing Søren’s diaper because water and soap sting and burn like fire on my raw skin. For months I dreaded any situation where I had to shake someone’s hand (like my first post-baby job interview), grasp a fork (I’m right handed, but I had to eat with my left sometimes, depending on which hand was in more pain), or touch food or animals (even touching the unbroken skin of a tomato would cause an angry red and itching flare up).
As I mentioned I also have this on my face, which kicked off a horrible cycle of anxiety and depression, which in turn caused the itching and inflammation to increase. Sometimes my eyes were so red and swollen and scaly that I wouldn’t leave the house. The eczema is not only around my eyes but also under my eyelids, so my eyes were bloodshot. It is inside my ears too.
I’m not here to complain, I am writing this to offer encouragement. Through the slow and aggravating process of misdiagnosis and treatment I struggled to find other women who experienced the same problem. Dermatologists only met my questions about postpartum hormone changes as a possible cause with blank stares and rehearsed lectures about keeping my hands out of water and not scratching. No one really seemed to understand what I was saying: that this was not a problem before I had a kid, and it was starting to have extremely scary consequences for me and my family. If you are a mom experiencing the same thing trust me, YOU ARE NOT ALONE.
More on this tomorrow.