Sometimes life-altering events happen so quietly we don’t even know exactly when they happen. No matter how often we retrace past events, we can’t point to exactly when things changed. All we know is somewhere along the way, between “then” and “now”, our world changed forever. One of those quiet, unnoticed, life-altering changes happened last summer.
It started with red dots. Small little dots all over my shins that sprung up right after shaving. I can’t remember the exact day I noticed it. It didn’t seem important. Sometime in the first week in June is the best I can pinpoint a date. I’d had razor burn before, but this was by far the worst case I’ve ever had. I mean I know they call it razor burn for a reason, but WOW does this burn.
In the past, razor burn cleared up in a couple of days for me. But this was now going on a week with no relief yet. I Googled “how long does razor burn last” and the answer made my stomach drop. 3-4 weeks. Wow. Remind me again why I ever started using cheap razors without shaving cream?
It was a bit embarrassing going out in shorts with unshaven razor burned legs, but I didn’t really have much choice. Shaving my legs right now would just further aggravate them and set back my healing. And having any clothing touching my legs was unbearable.
I looked up home remedies for razor burn: apple cider vinegar, tea tree oil, witch hazel, or an oatmeal bath. I had plenty of witch hazel; I use it as a daily toner for my face. So I tried it on my legs. And instantly regretted it. My skin burned worse after putting it on. As the day went on, it got itchier and itchier. As a rule, I never scratch any itchy red mark on my skin. My parents had drilled into my head from a young age that scratching only made things worse. Anytime I would even think about putting my hand on an ant bite, mosquito bite or poison ivy rash, they would yell out “don’t touch it!”
“Why?” I had no problem following the rules, but I wanted to know the why behind them.
“It will make it worse”
Fair enough, but I wanted to know why it would make it worse.
Turns out scratching an itch triggers mild pain in the skin, distracting from the itch and giving some relief. The nerves temporarily send pain signals to the brain instead of itch signals. But while that area of the body is temporary itch-free, another part of the body might start itching in its place. The body secretes serotonin in response to the pain of scratching. In addition to dulling the pain, serotonin activates itch receptors, intensifying the itching. With more itching, we feel an urge to create more pain to counteract it, making us want to scratch harder, which releases more serotonin making us itch more, which makes us want to scratch harder and… you get the idea. It’s a vicious cycle. I didn’t know all that as a kid, but based on my experience it made sense not to scratch. I could see for myself that scratching made the red bumps redder and bigger and more itchy and painful. After a few times of trying it for myself, I believed my parents and never scratched over a rash again. I would often scratch ~around~ the rash (that seemed to help), but never ~on~ it. No matter how itchy or miserable I was, I refused to scratch and make it worse. Not even the time when I had about a hundred chigger bites all over my legs (yes, I counted every single bite). I couldn’t even walk; any movement inflamed the bites and made them unbearably itchy. Or the times when poison ivy rashes would keep me up at night. No matter how bad the rash, I resisted every urge to scratch.
But this was the one time I broke my rule. I did it without giving it a second thought. I scratched furiously all over my shins, all over the hundreds of angry red dots. It was exactly as I described the itch-scratch-itch cycle in the last paragraph — the more I scratched the more I itched. I had never felt this level of itchiness before. It was uncontrollable unbearable burning itching. I could feel that scratching the rash was only making it worse but my hands were like a magnet stuck to my shins. I started whimpering, summoning all my willpower to slow my hands down. After a few more scratches I pressed down firmly on my shins, held them there for a moment, gently patted my legs, then pulled my hands off and sat on them. The battle was won for a moment, but it wasn’t long before I stopped sitting on my hands and started scratching again.
Have you ever had that one strand of hair that’s out of place hitting your forehead, nose or mouth? (only those with long hair can relate) Or how about that itch in your back you couldn’t reach? Think about that feeling but imagine thousands of those feelings all at once all over. That gives you an idea of how it felt not to scratch. If I wasn’t scratching, it was all- and I mean ALL- I could think about.
As the days went on, the dots disappeared but something more ominous took their place. Patches of hardened skin sprung up along my shins. It looked the same as normal skin but it felt hard and unnatural. I’ve had a year to think of the words to describe it and I still don’t exactly know how to explain to you what it felt like. The best I can say is it felt like alien skin. (alien in the sense of “foreign and unnatural”. Not green and slimy). It was kind of like having a thick layer of plastic stuck below my skin. Imagine a disease that makes your skin slowly turn into plastic over time. That’s probably the closest to how it felt. As the days went on, more and more of my skin hardened. It felt like at first it was deep below the surface, but over time the top layers of skin hardened too.
Everything in me was telling me “this isn’t natural and needs to be removed RIGHT NOW.” I had the intense urge to scratch my skin off- and I mean scratch it ALL off until my skin bled. But scratching did nothing.
As the days went on, I noticed a pattern. One area of my leg would harden up and then would erupt in a rash the next day. It looked a lot like poison ivy, but itched much worse. It got to the point where I would get a sinking feeling in my stomach with every new spot I felt hardened up on my skin. It meant more unbearable itching by the next day.
I called up my sister Cecilia. The only place I could think that I would have gotten it is at my parents’ house out in the country. I was out in the fields playing with her two kids, Bernadette (5) and Mireille (3).
“I think I have poison ivy. Did any of your kids get it?”
“No, the girls don’t have anything. I think they might be immune to it though- I’m pretty sure we have some poison ivy here at our house that they’ve gotten into before. And that would make sense since both Eric and I never get rashes either.”
“Well I’m glad they don’t have anything! I would have felt so bad if they did. I wonder if maybe the girls got into the poison ivy and then spread it to me. I’m always so careful about looking out for poison ivy and I was sure that I hadn’t stepped in any of it.”
“Yeah that makes sense! Or maybe the dog got it. I mean it’s on your shins- maybe he rubbed against your legs?”
“Yeah that does make sense. I didn’t think about Alto spreading it. Oh well, at least it will go away in a few days.”
“Feel better Colie!”
My dad called me a bit later, “I heard you got into some poison ivy out at our house.”
“Yeah, I think maybe Alto got into it and brushed against me”
“I’m sorry to hear that. Come on over- I have some medicine for it the doctor gave me last time I had poison ivy.”
I was so desperate for relief, I didn’t think about the morality or prudence in using my dad’s prescription drug. I wish I had before taking it because it’s something I regret doing. In hindsight I wish I had just gone to the doctor immediately. But at the time my mindset was I had a bad case of poison ivy and would take anything and try anything that promised relief. I was in too much pain to think clearly about the consequences or best plan of action. I looked at the tube- “triamcinolone acetonide” – a mid-grade topical steroid. I slathered it on- instant relief. About 30 minutes later it would start itching again. The tube said apply no more than three times a day. I didn’t count how many times I applied the steroid that day, but it was probably in the double digits. As long as I kept applying the steroid, the itching was controlled. The rash didn’t go away, but at least the unbearable itching had.
Aside from the itching, my shins were red hot with pain and hot to the touch. I wasn’t sure what it would do, but I suddenly had the idea to try an ice pack to cool down my skin. Instant relief. It was like a crowd of a thousand angry voices had been silenced. Dead silence.
I realized the key was keeping cool. Not the easiest thing to do in June in Dallas! I kept my apartment at 68˚ and limited my movements. Even walking around caused my legs to warm up to the point where they would itch uncomfortably. I spent most days laying on the couch with ice packs covering my legs. I rarely ever watch TV, but I couldn’t move much and I was too tired and in too much pain to focus on reading, writing, or working. I started watching Stranger Things.
I thought it was funny that of all the shows I could have picked, I picked one where I could so strongly identify with the characters. I felt like Will when the monster invades his body. It crawls under his skin and gets angry when it’s too hot. He has to stay in ice baths to keep the monster clam. I couldn’t come up with a better way to describe how my condition felt. The feeling that there is a monster below my skin that needs to get out- crawling and scratching under my skin. And the hotter it gets, the angrier it gets. Strangely, it helped me feel less alone in it- that I could watch someone else suffer through a similar thing with bravery and acceptance inspired me to do the same.
It took about a week with the triamcinolone, but the rash eventually went away completely. But then came back just a few days later. I had thought up until now that was poison ivy (which is why I hadn’t seen a doctor), but now I was wondering if maybe it was a food allergy, bed-bug, or some kind of contact dermatitis. So I got a new mattress protector (my old one was pretty rough- and I wonder if maybe my legs were rubbing against the hard plastic and getting irritated) and my microfiber sheet was thread-bare. So I got new cotton sheets and got rid of my box spring. I was so hopeful that I had finally found the solution to my rash. But my rash was only getting worse. The itching was so strong and persistent I was running on little sleep. I collapsed in my bed, preparing for another night of tossing and turning. I needed to try and get some sleep because I had a dermatologist appointment the next morning. It was just a routine screening for moles- I wasn’t even planning on telling her about my rash. I figured there was nothing she could do about it- that she would tell me it’s contact dermatitis and I needed to find the source of the irritant in my house.
But it was the first thing she noticed at the appointment. Her reaction made me realize this was something I should have seen her about right away.
“I thought at first this rash was razor burn… then it got worse, so I figured it was poison ivy. But it never went away. And it moves around a bit throughout the day, so I thought it was some sort of allergic reaction.
I stopped taking my multi-vitamin and probiotics just in case that was triggering it. Then I went through everything in my diet that could be causing an allergic reaction. I narrowed it down to cheese, and it seemed to be getting better for some time- but then it came back.
So then all I could think of was maybe it was something on my bed. So I threw out my box spring, got a new mattress protector and sheets. I was so certain that I had finally figured it out… but that night was the worst night yet, then itching was so intense I couldn’t sleep at all. And it’s only gotten worse since then- sleeping has been very difficult. It feels like something is crawling under my skin”
“Does anything help?”
“Only ice. That’s pretty much the only thing that relieves the itching for a bit. And heat just intensifies the itching, so I’ve been avoiding the outdoors. On a bad day, even walking around inside can be too painful. Any movement, any heat just makes the itching/burning unbearable. So I lay down with ice bags, then I can get up and do things for a few hours while my legs stay cold, but once they warm up, I have to reapply ice.”
At this point, the doctor turns to her PA. “What’s your differential?”
I offer “it kind of feels that way- it definitely feels like there’s these layers of skin that need to come off”
“It’s not psoriasis.” Turning back to her PA, “What typically presents on the tibial area?”
“I’m not sure…”
Turning to me “You have a cutaneous form of amyloidosis- most likely lichen amyloidosis. It’s a rare disease where the body makes misshapen proteins. It can happen anywhere. For example, when it happens in the brain it’s called Alzheimer’s. In your case, the bad proteins clumped together under your skin, causing irritation. Hence the feeling of something crawling under your skin. Cutaneous amyloidosis generally doesn’t become systemic and stays contained in the skin.
Unfortunately we really don’t have great treatment options for it. No matter what we try, there’s a high chance it will come back. But we will start with the highest-strength steroid and see how it responds. We’ll order a biopsy and meet back in a couple weeks.”
The doctor leaves and the PA turns to me, “Do you have any questions?”
“What did she say I had again?” I caught the last part she said- amyloidosis. That was the rare disease in House, MD, whereonce Dr. House made that diagnosis he would go home, leaving the patient to die in the hospital because there was nothing else for him to do. I knew that was systemic amyloidosis and I had localized, but it still sounded like a very grim disease.
And the first part- did they say lichen? As in the algae-fungal composite? Was this a fungal infection?
She looks at me, seeing that I’m not taking the news well, puts her hand on my shoulder and says “Oh honey, it’s nothing you did. These things just happen and we don’t know why. We’ll do everything we can to beat this.”
My eyes fill up with tears but I keep it in until I get into my car. I immediately take out my phone and start Googling lichen amyloidosis. Information is scant. I searched YouTube, finding several videos on systemic amyloidosis, but only a few on lichen amyloidosis. When my dermatologist told me it was very rare, she really meant it.
The videos aren’t that helpful. As I’m watching one guy is detailing his exfoliation routine to help reduce itching and skin buildup, I scroll down the comments and see “help please my body is crumbling before my eyes and I can’t take it anymore. Suicide is the only thing that makes sense.” I take a deep breath turn off the video. That’s enough researching for today.
That night, as the rash had spread to my forearms, waist, and forehead, and I lay on the couch covered in ice bags, I start thinking about the future. Is this every day of my life going to be like this now? I pray I don’t think I can suffer every day like this for the rest of my life.
Immediately, I feel God reminding me that He gives grace day-by-day. We don’t get a lifetime’s worth of grace all at once. The things I’m worried about in the future haven’t happened yet. I had no way of knowing what the future would be like. I certainly would never have dreamed even a few weeks ago that I would be dealing with something like this. I calm down, confident that every day won’t be this bad.