My mom says I was born with eczema on my thumb, but I don’t know if that is true or if it was an exaggeration. Eczema is a misunderstood disease, and we are kind of in a transitional place in history with it. The generation that came before us saw it as a skin disorder, and the generation now sees it as an immune disorder. It’s pretty unpredictable and literally different for everybody and every BODY. Some triggers are diet, other triggers are things that come into contact with the skin like allergens. Stress is major trigger, it all just varies greatly.
So for me, I always had a patch here or there. On my hands, face, arms, or legs… it never failed I had a patch somewhere. I’d go to the dermatologist periodically and get the latest and greatest topical steroid out there and it would clear up and then when the seasons changed it would resurface somewhere else.
I didn’t really understand about topical steroids as a kid, teen or young adult, I just thought I was supposed to do what the doctor and my mom said to do. So after 20 years of intermittent topical steroid use, when pregnancy hormones hit my veins, something happened and eczema took over. I began what I believe to be Topical Steroid Withdrawal (TSW)– there are some telltale signs of it (eczema sleeves and mask on the face… I had both of these) and it was just exacerbated by pregnancy and breastfeeding and my immune system being on overdrive.
I saw a few different doctors and dermatologists but the consensus was “use more topical steroids” and after researching TSW and Red Skin Syndrome I decided that if TS wasn’t safe for me breastfeeding, it wasn’t safe for me at all. So, I stopped cold turkey and the eczema exploded.
It was a dark season. I don’t really care to elaborate more, I honestly don’t know how to describe it without sounding super dramatic and dark, but it was one of the most hopeless times of my life. I thought about death often. The literal pain and just the mental strain of the disease was unbearable most days. No one could tell me what was causing it or why. There was no cure and there was no indication on when I would be healed. I was disfigured, hurting and a brand new first time mom. It was not the best of times.
I don’t ever want to go through that again. I don’t want any other person to ever have to go through that. Especially my kids. So, awareness is important. Awareness of options for treatment is important. Awareness of whole body health is important. Awareness of what we put on and in our bodies is so important.
We can’t passively sit by and rely on physicians who don’t know us and the FDA to make decisions for us and our bodies– we have to research. We have to understand. We have to be aware.
Over the next month I’ll be sharing more about my experience with TSW, what I did to make it through, what happened after I had a baby again and the current treatment plan I’m on and why. I’ll also be sharing some practical tips for living, traveling and raising kids with eczema because I’ve learned SO much over the past four years!
If you are a fellow warrior– do not give up. You are not to blame. God is in it with you and you’re becoming stronger day by day– you will look back at your strength in awe.
Keep on, warriors.