Fair to say I’ve had my share of loss in life. Like, that’s enough, thank you. But there was another little loss surprise waiting for me. I call it the icing on my loss cake.
The kids had just finished up another epic round of who-has-the-lice-and-will-I-get-it-next at daycare. Luckily we all managed to avoid it unscathed (or should I say unscabied). But you know when you hear about lice, ants, or any other creepy crawly, you can’t help but feel like they’re on you, and you start to itch? Well that was me. Just a tiny itch on my scalp here and there – at first.
Fast forward to a few months later. After asking my husband to do several inspections for lice, and coming up clear, I’d resolved to being a crazy lady, and accept the occasional scratching. But it was a little more frequent than it had been months earlier.
It all finally came to a head (pun intended), at work one day, when my scalp officially felt on fire. The itching was pretty intense. I got up from my desk and walked into the bathroom. My scalp was so red. I believe “on fire” wouldn’t be an off base term to use at this moment. Yes, thank you, I’m sure my scratching wasn’t helping, but something wasn’t right here.
I called my dermatologist to make an appointment. Luckily there was a cancellation and they could take me a few days later. In the days waiting for my appointment I would stare at my head in the mirror. Ok, more than stare. I would comb through my hairs, examining the redness and noticing that my hair follicles looked angry. They were slightly raised and a little red around the base of each one. If I pulled on one of the hairs, it would easily come out. I couldn’t even feel a slight tug. They would just come out.
My dermatologist office took one look (maybe a few), and informed me that I have scarring Alopecia. Lichen Planopilaris. Frontal Fibrosing Alopecia, to be exact. An autoimmune disease.
They gave me a regimen of topical solution (Clobetasol) and some medications that have been shown to help. The medications were originally found to treat malaria, but it had been discovered that they were helpful with inflammation. I was told not to be alarmed when my pee turned orange or I cried orange tears. Uh, what?
I went and got a second opinion. Which I now highly recommend. I’m usually not one to rock the boat (more of a weakness than a strength), but I feel like this was one of those times where well, I didn’t have a lot of time. Once the hair falls out, the follicle closes up, and the opportunity to grow hair back also closes up. I assumed doctors wouldn’t be that helpful once the hair was actually gone.
It’s been several years since I found out I have scarring Alopecia. I’ve gone through several medications and as with many autoimmune conditions, it’s trial and error. I have a great doctor at UCLA that specializes in hair loss and I get regular six month check-ups to track progress. Some visits are better than others. Sometimes there is new growth (yay for baby hairs) and sometimes there is more loss (boooooooo). The itching comes and goes too, which to be honest, is actually the most frustrating part. I start to itch right when I wake up. It’s Alopecia’s way of reminding me it’s still here. Awesome.
So, let’s go back to that part about this being the icing on my loss cake. I’ve been through worse. I mean, it’s just hair, right? But us ladies get pretty attached to our hair. New haircuts make us feel good, and a good hair day will literally part the clouds. So while sometimes I feel like I should just shut-up about it, true confession, it’s also made me cry.
People can’t see child loss. I won’t walk into a room and hear whispers “Oh look, she has a child in Heaven.” But they might be able to notice this.
So, no, this isn’t the worst thing to happen, but it’s got me a little anxious and bummed out. Which, if you believe in the connection of mind and body, I don’t think my feelings about it are helping ease the inflammation. And it’s taken me awhile to give myself permission to have feelings about it. Openly anyway.
Is there something you haven’t given yourself permission to feel, because you’re worried about what others will say? I’d love to hear about it.
Can I just say, YOU are beautiful!!!
No YOU are 😉
So for your loss. I will tell you that it’s your personality that counts yet it’s so hard to believe at times. Us women are identified to this thing called beauty and not the beauty within but the outside beauty that gives us confidence.
I was diagnosed with 2 autoimmune diseases, how did i get so lucky?! Well the first thing was weight gain which i can try to cover with clothes, then came the hair loss. It kept me from social events and secluded. Which in turn didn’t allow my personality to shine. I got sick n tired of being sick n tired. Until i took the courage to buy a wig. Me a wig? Could people tell i had one on? Ugh, it took some trial n error. But now i don’t know how to identify myself without them, i’m like Dolly Parton. It allowed me to be who i know i am. I love my wigs more than i loved my own hair. Hell, i know its only gonna take ten minutes to do my hair and comes out perfert everytime!! I have gotten so many compliments others with a full head of hair have bought them now.
When we are down n out, sometimes it’s hard to see the Silverlining. I hope my story helps. If you need a wig partner, i would gladly help you shop.
Thank you sooo much Veronica! I have been thinking about buying a topper one of these days. It sounds like I’m feeling the way you once did (wondering so much about if people will notice, will it look silly, will it be too hard to figure out and just be frustrating, will it make my head too hot, etc. Can you tell I think waaaay too much). So for now I just follow Instagram accounts of women putting them on. They make it look so easy…and fun! I love that you are having so much fun with it too 🙂 I agree, it’s just important that we feel good and that we don’t deprive ourselves of living a life definitely worth living). I’ll keep everyone updated and I’m so glad to know I have a shopper in my corner 😉
I was diagnosed almost exactly a year ago with lichen Planopilaris . Devastating. The itching & burning has been unbearable- I so understand your pain!! I’ve been on Clobetasol, Pioglitazine, and Minoxidil and I do feel they are helping. Good luck- praying for success with your journey. It’s different for all of is, with the same diagnosis.