When I was 15 my legs were itchy. I couldn’t sleep. I writhed in agony, with no rash or bumps or any other symptoms. I went to my pediatrician, urgent cares when I couldn’t stand it, and even the emergency room once. No one could figure it out. I had a whole cabinet full of lotions and creams to numb and soothe. Eventually I got a referral to a dermatologist with a 2 month wait before her next appointment. When I finally saw her, she told me about another over-the-counter lotion and sent me away to come back in 2 weeks. Still no relief. When I went back she found a few goosebump sized bumps on the back of my thigh and she squeezed them until I cried to see what would come out. The best she could figure was that it was some sort of keratosis. She prescribed Triamcinolone acetonide cream- basically what I now know to be the steroid cream of choice for itchy skin. She didn’t just give me the little toothpaste sized tube either. She gave me a 1 lb. tub with two refills on it. I was instructed to rub it all over my legs and butt at night and anytime after I showered.
I followed the instructions; I got less itchy. And then it went away all together. I forgot all about the cream when I quit itching and then the itching would come back, so I used it again every night. The tubs of lotion lasted about six months and I used all of them, along with OTC CeraVe. With three tubs of triamcinolone, I did this for about 2 years. When I got to the end of my last thing of lotion, I went back to see the dermatologist. She gave me another refill and I left. Somewhere after this I started to get deep, purple striae on my legs. They were slight at first, then bigger and bigger. “Finally,” I naively thought, “I have a rash that she can see and get rid of!”
I got an appointment. She looked at my legs and frowned.
“Oh no,” she said, “I am so so sorry.”
She asked me how long I had been on triamcinolone.
“Almost three years,” I said, now age 18.
She asked me where I had been applying it, who prescribed it, how often I used it. These are all questions she should have known the answer to. She then explained to me how I slipped between the cracks for proper treatment. That steroid cream is only used to treat the symptoms for a short time and that I never should have used it that long without us searching for a solid diagnosis and treatment.
I had about six long, purple, shiny trenches on each leg.
Turns out that long term steroid use causes skin atrophy. Skin atrophy from steroids can look different on different people and even be more severe than what I have. Basically, I have skin atrophy much like what happens in stretch marks.
“I’m sorry pretty girl,” she said on my way out. “I like to keep my young girls with beautiful skin.”
I don’t know what happened. I don’t know if the refill number on my script got misread by the pharmacy. I don’t know if she was distracted and forgot to order me a follow-up appointment. Maybe my insurance wouldn’t pay for a biopsy and she forgot to revisit a solution. Maybe everything happened at once. I was ignorant and didn’t know to call and bother her office until a permanent solution was found.
I have since grown out of whatever caused me to itch, and I have never seen another doctor prescribe triamcinolone in excess. I now believe myself to have had keratosis pilaris– a relatively common and straightforward diagnosis. It doesn’t really matter what it was though. It won’t make the marks on my legs go away.
Mine is a cautionary tale of the power of medicine in both its healing and harming, and of the health care system’s shortcomings. Several things went terribly wrong in my care; placing the blame on her alone wouldn’t do anyone any good. It could be a lot worse. I still have my quality of life and no function was lost. I know others who get lost in the system aren’t always so lucky. Though there are steps the doctor could have taken to give me better care, I don’t blame her. I’ve seen her waiting room; I would forget some things too, with that many patients in a day. Having perspective from both patient and provider helps me to be more forgiving too.
The scars have since faded to a light pink, but they are still there- thin-skinned, ugly, and obvious whenever I wear shorts.
My nieces have all asked me about them at various ages. Their age doesn’t really matter because they are still too young to understand this medical mishap. Just the other day Addie asked me what happened when she was sitting in my lap. “Do you have an ow-ie?” The shock of the scars’ size was on her face, worried for me.
“It’s okay, they don’t hurt Addie. Some medicine did it to me.”
When I first got them, my older nieces asked me about them, I didn’t know how to explain it. I told them a bedtime story about how I happened upon a lion, and got scratched as I struggled to outrun and escape it. Then they started telling people their aunt got scratched by a lion.
I’ve seen articles where new mommies affectionately refer to their stretch marks as tiger stripes. Paying homage to their battle wounds from carrying a baby; owning them proudly instead of hiding them away. The scars remind them of the sacrifices they made to bring a life in this world. They will never forget why they are there. I haven’t brought any baby into the world, but my lion scratches still mean something to me. I won’t ever forget why they’re there, and though I’m still not fond of them, they remind me of how I fell between the cracks in an overworked, red-taped, short-on-time health care system- and how I, the patient, ultimately paid the price. Every time I look at them, they tell me never to let a patient of mine have the same kind of consequence in any form- cosmetic or otherwise.
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