The Cold REALLY Bothers Me Anyway: Life with Raynaud’s Disease

The Cold REALLY BOTHERS Me Anyway: Life with Raynaud’s Disease

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It’s funny that one of my favorite Disney characters is Elsa. The cold doesn’t bother her, but it sure as hell bothers me, and I can’t LET IT GO (but I wish I could).

Okay, that’s enough with the Frozen jokes. Sorry that this post isn’t book or library related, well, not entirely, anyway, but since the weather is getting colder, I wanted to share a little something about myself, which I briefly mentioned in Dewey Decimators: Slips, Trips, and Falls, and that is Raynaud’s Disease.

What is Raynaud’s Disease?

The TL;DR version is that it’s disorder of small blood vessels of different parts of the body, frequently fingers and toes, that reduces the flow of blood when exposed to cold temperatures, which can cause discoloration, numbness, tingling, throbbing, and/or pain.

Why am I Talking About This?

The weather is cold right now, and if you’re feeling discomfort/pain, and seeing parts of your body change colors from the cold then I want you to know that you’re not going crazy and you’re not alone. It could be Raynaud’s, and although there is no cure, it can be a relief to know what is going on.

I pretty much went the majority of my childhood assuming that the cold hurt everyone like it did me. Reaching into the freezer for a couple ice cubes turned my fingers white, red, then gray, and it hurt them like crazy. But I figured everyone was like that.

Or when I would come inside after playing outside in the summer. The cold blast of the air-conditioning should have been welcoming, but it hurt me instead.

Again, I figured everyone was like that. I didn’t say anything to my family because our motto was “tough” for any complaint, and I didn’t want to get in trouble for whining.

So I kept my mouth shut until I was about 17 or 18 when the pain was unbearable.

I was on acne medication for my cyst-prone skin. There were lists and lists of side effects, but little did I know that it would cause my body to really react poorly to the cold. My hands, fingers, wrists, knees, and toes ached and throbbed constantly. There were days I couldn’t pick up a pencil to do my homework and walking down the driveway was more effort than it ever should have been for a healthy teenage girl.

One day, after years of silence, I went to my mom and bawled and told her I couldn’t take the pain anymore.

She assumed it was a side effect of my skin medication, but took me to a hand doctor anyway, as I insisted the pain was especially bad in my fingers. Her fear was Rheumatoid Arthritis, which was what I thought it could be too.

The doctor ruled arthritis out pretty quickly after he asked if I had always felt pain in my fingers and such. I replied, “yes”. He asked if it was usually triggered in the cold weather or in air conditioning. “Yes”, again. He looked at the coloring of my fingers and after a moment declared: “Raynaud’s Disease”, and then he added that there was no cure.

The thing is, hearing the word “disease” is scary as hell. I was pretty much like:

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Panic and anxiety.

 

The advice he gave me was to stay warm, move somewhere warm, and note the things that triggered my attacks so I could prepare better for them.

The third bit of advice was the most helpful, because staying warm is impossible for me (I’m basically always cold and I’m in Ohio…. it’s pretty much always cold here), and to this day, I can’t afford to move somewhere warm. And living somewhere warm doesn’t solve the issue because, air-conditioning.

So, after I was finished with my acne medication, the Raynaud’s attacks went down considerably, basically back to how they were when I was a kid.

Yay! Except not really.

I’m in my 20’s and I’ve never really known a day without physical pain from Raynaud’s. Today at work was especially bad, and my coworker even commented on the weird white coloring of my fingers as I dragged our space heater closer to my desk.

Living with Raynaud’s

Everyone’s experience is different, I know. I told my coworker that I had Raynaud’s and he asked how I handle it. Honestly, I take it day by day, and I’ve learned to accept that some days will be better and easier than others. I enjoy the heat of the summer until I walk into an air conditioned building and gasp from the sudden shock. I love the idea of going ice skating until I immediately can’t feel my fingers and toes. It sucks sometimes. I’ve learned to dress in layers, always. Even on the warmest days, I bring cardigans with me when I run errands, because I know the air conditioning is gonna hurt me. I spend a lot of money on thick, warm socks for the fall and winter, and I’m known for wearing thermals under my work clothes. I also am working on learning to control my emotional reactions better because stress and strong emotions can also trigger a Raynaud’s attack.

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Elsa gets to throw her gloves aside, while I’m usually wearing two pairs outside.

I know that the right side of my body feels the pain more than the left side. It’s weird. It also makes me laugh.

While I joke about it a lot, I also get moody and frustrated because it is a constant source of pain/discomfort. It’s there when I wake up and when I go to bed. There’s no cure available, although I plan on talking to my doctor soon about possible medication options that could help with the issue.

My point of this post is that if you’re in pain or discomfort from the cold, don’t be afraid to talk to a doctor about it. I wish I had spoken up to my family when I was little, but like many people, I was afraid of being dismissed for “overreacting”.

I hope that there is a cure one day, but until then, especially during the colder months, I want to remind everyone to speak up if the cold really bothers you like this. While Raynaud’s Disease makes some of my days more difficult, I’m still usually able to do what I need to. It’s part of my life but it doesn’t define me by any means.

Want to learn more? Check out these links:

National Heart, Lung, and Blood Institute

Raynaud’s Association

And don’t forget that October is Raynaud’s Awareness Month! 

  • I’ll probably write another post in October.

 

And that’s it! Thank you so much for reading this!

Stay warm, friends!

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