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For the last week or so, I haven’t been able to feel a few of my toes. Well, except for when I shower; then it feels like someone has covered those toes with gasoline and set them on fire. They’re a funny color, too — a mottled bluish-white that gradually fades back to normal flesh color where toes meet foot. It happens to my fingers, too, though not as badly; I can wear gloves and be just fine. But my toes — lately I’ve been wearing two pairs of socks plus thick wool slippers, and I still can’t feel my feet.
Twenty-eight million of you can relate. We have a condition called Raynaud’s Syndrome. It’s a phenomenon where fingers and toes turn delightfully colorful shades of freezing white, then numb blue, and then painful red in the cold, during emotional stress, or just for fun. Essentially, blood vessels in our extremities start to spasm for some reason, cutting off circulation and leaving us more susceptible to frostbite, swelling, pain, and even ulcerations and gangrene. Air conditioning, stress, even just holding a cold glass can trigger a Raynaud's attack. In the middle of summer, Frosties (as we call ourselves) sometimes have to wear gloves and two pairs of socks just to keep our blood vessels under control.
This most recent episode is the longest I’ve ever experienced. Normally the feeling comes back after a few hours, but I’ve been alternating between numb and shocking pain for a week now.
You can imagine that deciding what to wear with this syndrome is generally a nightmare. Even when it’s 85 degrees out, I have to be aware of where I’m going and what I’ll be doing. Will the breeze at the beach be chilly or warm? How many layers do I need to wear if someone’s heat isn’t high enough in the winter? And what if I need to take my shoes off to enter their home — how many pairs of socks will fit into my boots?
Shopping, too, is a frustrating experience. If a store has its AC blasting because it’s the summer, I usually can’t try on shoes. And if a shop is just a little hotter than normal in the winter, I can’t stay — I’m used to being chilled and the “excessive” heat makes me feel awful. Deciding to go to the store sends me into temperature-based turmoil.
When I do go, I look at clothes through a lens of excess, always buying more than a normal person should because I actually need it. I look for thin long-sleeved shirts that I can wear all year, light gloves that can be layered depending on the severity of my Raynaud’s attack (current or expected), cardigans to go over tank tops because I can’t just wear a tank top, thick wool socks that won’t overheat me. And I never, ever wear shorts. Not because I don’t like how I look in them, but because I need to have my legs covered, either by jeans or tights or leggings or tall boots or something, because otherwise it could trigger an attack.
Getting dressed in the morning is a similar ordeal. People sometimes tease me because by the time I figure out what to wear, almost all my clothes are strewn about the room or on a heap on the bed. I try on probably 10 outfits before deciding on one. There’s just too much to consider. It has a negative affect emotionally on me, too. I want to feel comfortable in my clothes; I want to feel like I look decent when I go out. But I have an entire closet of jeans, T-shirts, and hoodies. I feel frumpy and gross, and weirdly half-sweaty and half-freezing. I’m in a constant state of heavy sweatshirts, two pairs of socks, and light gloves. Of looking like I don’t care how I look, to myself or anyone. Granted, I think not caring how someone perceives you or your clothing is a great mindset to have. Sometimes, though, I just want to feel confident in classy clothes — but I have to suffer to do so.
As far as treatment, my options are limited. My doctor prescribed calcium channel blockers that made me start to lose my hearing, so I stopped taking them on his advice. Closing my eyes and imagining myself somewhere warm does little to help. Supposedly magnesium supplements are an option, but that has mixed results. So for now, I’m going to stick with my routine: wearing layers and several pairs of socks, and continuing to buy winter gloves all year long.