Cold Blooded

Bundled up to prevent exposure. It hurts out there

I have Cold Urticaria.

Mine comes in the form of Chronic Idiopathic Urticaria, with ‘cold’ as one of my main triggers. CHU means I’m allergic to lots of things and they don’t know exactly why. This is the same for thousands of us who have this form of urticaria.  I won’t list all my triggers, as you probably won’t believe it and you’ll truly think I’ve gone stark raving cuckoo. Today I’ll focus on the cold aspect.

This is my hand in the summer time, these hurt and really sting
This is my hand in the summer time, these hurt and really sting

I’m not writing this information for my own purposes. I’m a grown ass woman who is used to all this and let’s face it, not many will care what’s goin on in the inner working of ‘moi’. I don’t say this in a mean way, I’m more acknowledging that everybody is busy with their own lives…and that’s ok. I am offering this article as insight into what your child may be feeling, if they have CU especially if they are too young too express what they are feeling. Keeping in mind, that even though we all have different levels of CU (and may react differently). Many of us CUers walk a very similar path, symptom wise.

Let’s start off with a general definition for the non CUers in the room. Mayo clinic defines cold urticaria as;

‘Cold urticaria (ur-tih-KAR-e-uh) is a skin reaction to cold that appears within minutes after cold exposure. Affected skin develops itchy welts (hives).

People with cold urticaria experience widely different symptoms. Some have minor reactions to the cold, while others have severe reactions. For some people with this condition, swimming in cold water could lead to very low blood pressure, fainting or shock.’

Yes, you’re reading that right. It means I am allergic to the cold. – Cold air, cold surfaces, cold drinks. – Anything cold.

Edges insulated to protect from cold touches
Edges insulated to protect from cold touches

You’ve also gotta realize, that cold to a CUer isn’t the same as cold to a person without CU. In my kitchen, I have strips of foam around the edges of my marble countertop, even in summer time.  The countertop that is slightly cool to your touch, can be equated to the opposite of a hot iron or poker for me.  A dagger of ice that stings and burns right through the layers of my clothes.

That ice cube in my drink is enough to send me into a coughing fit and start my throat swelling.

That ocean breeze that refreshes you on a hot summer day, or the air conditioning in the grocery store, is enough to send me into epi-pen territory and off to the nearest ER department.

A cool day to you, feels like this to me.
A cool day to you, feels like this to me.

It was a real puzzler when I was a kid. I could never figure out why all the other kids liked being outside in the winter. It really hurt out there and if out there for any amount of time, I felt downright woozy, – When there are too many hives, the blood is taken from vital organs to the site of the hive (by histamines) causing low blood pressure—and weird. It was years later as an adult when I finally realized that not all people felt this way with cold. I was a rare bird.

As a school age child, I remember trying to have a discussion with mom and explain what I was feeling.

“Mom, my legs get all itchy when I’m outside”

Her explanation was that I was probably allergic to the snow water. She was close, but it wasn’t the water atall.  At about that same stage, I tried having the same conversation with my GP and got shoulder shrugs. Looking back on it now, they really didn’t know what this was…and in current day, they are still learning.

So, we learn as we go and slowly…very slowly, connect the dots.

summer time dots...on my legs
summer time dots...on my legs

My lightbulb moment came after I woke, one winter morning. I had been experiencing hives and couldn’t pinpoint the troublemaker. I had gone through the usual litany of offenders: was it a new laundry detergent? A new soap or dish liquid? There were no connectable dots.

That morning as I lay in our cool bedroom snuggled up in bed, I realized that most of my body was fine, but the small corner of shoulder that was outside the warm blankets was covered in hives. The light became glaringly bright with realization. This couldn’t be a reaction to cold, could it? I mean, that CAN’T be a thing?!?

Later that week, we met with my (I had moved and now used the services of a new Doc) GP for a chat. We did the ice cube test and confirmed the suspicion. It was cold urticaria.

Positive ice cube test note the drips
Positive ice cube test note the drips

Since that day, it’s taken a LOT to figure all this out. What was presented to me, way back when as ‘just hives from cold’ is so much more. For example, the cold exposure that I had yesterday, will give me nausea and a headache tomorrow. (Years of school-age tummy aches and mystery headaches just explained, right there) The stinging and burning eyeballs, are usually a cool breeze from the outside air, or (not even joking) looking too closely into the refrigerator.

The ice cube in your drink, that cool toilet seat, that bowl of ice cream, the cold jar of pickles, the swimming pool, the night air, the floor tiles, the freezer…are all places and things of horror for a CUer. All things you folks don’t even think about…. or never have to worry about.

zipper is a icy shard that hurts
zipper is a icy shard that hurts

This ‘invisible illness’ really is more than meets the eye. I am the person who runs across the parking lot from my ‘disability’ stickered car, to try to make it inside without getting anaphylaxis. I am the person who gets confronted because ‘how dare I, able bodied as I am, use a disability sticker when I was clearly fit and able’. FML.

Even in the CU community, many don’t realize that this is not ‘just hives’ on the skin, especially the mommas with newly diagnosed kids. Like anything these days, there are social media forums where our people gather. The benefit of this is it allows us to understand that we are not the only one…

We try our best to break the news of what their wee ones are most likely feeling. Its NOT JUST a spot on their skin.

more than skin deep

These forums also do a great job of showing us that even though this was rare way back when, the autoimmune condition known as Cold Urticaria is getting more and more prevalent. Our kids are getting sick.  As our diets change, further away from natural real food and more into processed products, our immune systems are rearing up and complaining. Fiercely.

Our bodies were not meant to consume the packages of chemical laden products that line the shelves of our grocery stores. We were meant to eat fresh veg, and fruit, and eat meat… like our ancestors. Real food, not products.

Products HAVE ingredient lists. Foods ARE ingredients. There is a difference.

Choose food with no ingredients list
Choose food with no ingredients list

We’re back at the parking lot and buddy is furious at me. I patiently wait for him to finish and gracefully bow out. He’s not worth my time or my explanation. The words in my mind are unspoken, but I write them here for you.

Sure, buddy…it’s completely normal that the Nor’Easterly (cold winter breeze) that’s blowin’ a gale, can possibly put me in hospital or make me die, right? I mean, that happens to you too…right?

base camp thermals meanty for polar expeditions, normal house wear
base camp thermals meant for polar expeditions, normal house wear

Move along…nothing to see here. Pass me an extra blanket on the way out, will you.

That’s it for this time! Thanks for joining me for another East Coast Keto Life Lesson. There’s still a lot to learn and we’re glad you’re along for the ride!

Keep Keto-ing with one foot in front of the other. Keto seconds lead to keto moments, Keto moments lead to keto days. Keto days will take you on a successful keto journey life time. We’ll meet you THERE!!

Our before and after
Our before and after

9 thoughts on “Cold Blooded”

  1. Oh Bobbi I had no idea. I’m a nurse and work in rare disease and treat patients with CIU. I know keto treats inflammatory conditions. Do you notice improvement? This is all so fascinating.
    Thank you for sharing your story.

    1. Keto definitely helps, its a big part of why I started down the path to be as healthy as I could. With cold being my main trigger, its hard. Winter sucks

  2. Great article. I’ve learned over the years not to assume that those individuals using handicapped cards, but look perfectly normal, don’t have a disability. All handicaps aren’t visable.
    My motto—be generous, be kind.

  3. Wow! So interesting.
    I was a nurse for 36 years and never heard of this.
    I cannot even imagine how this affects your day to day life. I love winter and the cold….I am blessed to be able to tolerate it.

  4. I remember you looking for mittens in summer at craft fairs. I had no idea it was like this though! Love that you push through it all.
    Xoxo my strong amazing friend!

  5. I was so interested in your story, as my daughter had this when is was young. As soon as she was exposed to the colder temperatures, her little cheeks and her bottom, thighs were all effected. Any spot that had any soft , fatty tissues, would have the giant hives. She still has allergies, and carries her epi-pen, as she now has severe allergies to nuts.
    You look amazing and so healthy, as you continue your Keto life style. Giving serious thought to the Keto life as well.
    Thankyou for your time.

    Loretta Tibbo

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