My mystery rash reappeared the day after Christmas, 20 months after my last outbreak. I recognized the sensations immediately: the tingly feelings in my hands and feet, the itchiness on unmarked skin. I tried to be positive, but after the girls fell asleep I curled up in my husband’s arms and cried. The next day a cluster of itchy bumps appeared by my knee. The day after that swollen blotches of reds, pinks, and purples paint-balled my arms and legs, the palms of my hands, the soles of my feet, and even my joints. I was covered. Walking was difficult. Sleeping, impossible.
I knew I needed to get a biopsy before taking any medications, because the only medication that would offer relief was a steroid that changed the make-up of whatever it was. But it was the week between Christmas and New Year’s. My dermatologist was out of town. The doctor at Johns Hopkins who gave me her bat line was no longer at the hospital, and my doctor’s office didn’t perform biopsies. I was sure I could find a way to get a biopsy if I really pushed it, but my girls were home all week. The pain and itchiness was all consuming, and since it was all over my body, I quickly sunk into a sense of helplessness. There was no way I’d make it without relief.
Physical mess aside, I struggled with finding the balance between being honest with my girls about what I was going through, and not scaring them. I mean, it wasn’t cancer or anything. I wasn’t dying. The medication would eventually suppress my skin into submission. But it was really scary to look at, and I couldn’t go two steps without itching some part of my body. Plus the woman in me wanted to be Super Mom. To meet all the needs and hide the hideousness of my skin. I’d hidden it before, while my mom or husband played Need Meeter, but the girls were older now. And not blind.
So I let them in. Not all the way, but far enough that they’d understand why I looked the way I did and why I couldn’t spend much time with them. They watched as I was examined at the doctor’s office, and witnessed yet another professional’s eyes bulge out at the sight of my skin, and heard her apologize for having no answers. ONE saw my shoulders sag as I was handed the name of another doctor to see, and piped in with some of her own disgnoses: maybe she’s allergic to something at Christmas. Or maybe she accidentally rolled around in the pink stuff hanging from the ceiling in our attic. Doesn’t that make you itch? When we got home the girls each said little prayers for me, and then entertained themselves while I spent my afternoon numbing my hands and feet in ice water.
In the middle of this TWO wandered into the room. She stood several feet away and watched me. I smiled at her.
ME: I look pretty scary, huh?
She nodded her head. Tears filled her eyes as she took in my arms and legs. I looked down at my skin and tried to imagine how I would’ve felt if I’d seen my mom looking like that when I was four. When I lifted my head again she was standing next to me. She looked right into my eyes, took my hands, kissed my speckled fingertips, and rested her cheek in my swollen palms.
TWO: You are the most beautiful mommy in the world.
I don’t know if it was the conviction in her small, sweet voice, or how much I needed to be told that I wasn’t the monster I felt like, but I started to cry. I thanked her in whispers as she climbed into my lap and wrapped my stained arms around her. She turned her little face up to me and smiled. “You are my beautiful mommy.” And even though I could see my skin in the periphery, and I could feel the burning and itching radiating through my body, I was grateful that I’d let her see me this time. Because in being honest, her eyes were able to locate the part of my heart lost inside my skin. And in that moment I felt her words. I clung to them. I believed them.
I was beautiful.
©2012 CEK. ALL RIGHTS RESERVED.
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{ 20 comments }
There is nothing better than that. Nothing.
Oh the beauty of TWO. And you.
Oh my! What a wonderful and compassionate daughter you are raising.
Thank you! Her little heart constantly reminds me how blessed I am.
Honestly…you have the sweetest girls! this totally made me cry at my desk and made my ovaries ache!!
You are truly blessed and I will be praying for a quick and full healing for you!
OH! Man, I cried. What a gorgeous child you are raising. Hope you feel better soon. Big hugs! *easy hugs*
I am well aware of itching to death. 5 years and finally, a name for it. Dermagraphia. And in my case, acute dramatic dermagraphia. I am still effected at times. Temp. change. pressure, sweat, some fibers… all cause me to itch like a crazy person. I welt up like a cat attached me. I can write my name on my arm and it shows up! I hope they figure it out for you. It’s awful not knowing…
Oh wow. That sounds horrible. I’m so glad they figured out what it is because you’re right. Not knowing is the worst.
What an angel your child is! She made me cry. Hope you get relief soon.
Tears in my eyes. Beautiful.
Stop. Making. Me. Cry.
I know. You should see how much I cry around her on a regular basis. Sometimes I think she has some secret plan to make me weep (publicly) as often as possible. And I was never a crier either! (Until I gave birth, that is.)
A little Momma lovin’ …and I’m a BIG cry baby.
You are raising the most beautiful daughters (inside and out) and that comes from having a mom who is beautiful (inside and out).
((hugs))
Thank you, Dawn!
I’m so sorry to read about your rash but your daughters are just wonderful. Your doing a great job as a mother. Hopefully you find out what’s causing all this. I wish you good luck and don’t give up, keep trying.
From a girl who’s battled mysterious rashes her entire life: I am so, so sorry to hear you’re going through this. The referral chains from specialist to specialist get more and more maddening as they grow longer without an end in sight, no? Food and environmental sensitivities have turned out to be some of the primary causes for me, and holidays tend to bring new exposures (potlucks, more outings, more contact with others in different homes, etc.). I hope someone finds answers for you soon so that you no longer have to be restricted to treating symptoms and can tackle the cause.
I teared up reading about TWO. She’s all heart and I love her for it.
Powerful. And wonderful that the two of you can share the same compliment. Hope you feel better. xoxo
Gosh I am wishing you some answers right now. At least you are beautiful and you have your daughter to tell you.
HOW did I not see this post before? Oh, CK, I’m so sorry.
Except that moment might have been worth all the pain and itchiness. How are your girls so awesome? Oh, right. Nature and nurture.
Hope you feel better. Hope they never come back again.
A friend of mine has a similar condition – spontaneous hives and welts; sometimes lasting a few hours…..sometimes weeks to months. Itchy, painful and leaving her with an all over sick feeling and fatigue. She has been through a battery of tests from a multitude of specialists, and unfortunately steroids to control her symptoms have been all they’ve come up with so far as well. Is it an immune response? An allergy? (they’ve even questioned a histamine reaction to temperature fluctuations). For both of you – all who are suffering with this horrible discomfort – I hope the come up with answers instead of always more questions.