hot and COLD, part 1

It may sound like a Katy Perry song, but it’s actually the day to day life of my hands and feet. Just a fun little treat I deal with among all of the other delectable sweets that make up my health.

Today’s fun ailment you may be more familiar with. “Oh yeah, my best friend’s cousin’s grandma has that!” Or maybe even you have it. It’s called Raynaud’s phenomenon/syndrome/disease. Call it what you want…it sucks. I first started showing symptoms when I was 12. My finger nail beds started turning purple often and my parents started worrying my fingers were going to fall off. They figured I might need them in the future, so off I went to a specialist, where we learn that I have Raynaud’s. They did a bunch of blood work to make sure it’s not secondary to any really awful diseases like lupus (it’s never lupus…House fans?? anyone?? nevermind) or scleroderma and when they found out that it’s not, they tell us there’s not much they can do for it. Yay. So I went with the purple finger nails. It wasn’t too bad at first. Cool looking manicure. And some of my friends called me Hyper colors, which I thought was kind of fun. Remember those shirts?! I loved those! Can those make a come back? I would totally buy one! Woops, sorry, off track. (but seriously, I want one)

Problem is that as time went on, it got a lot worse.

  • First, purple nail beds
  • Then, purple and very cold finger tips
  • Then, purple and very cold, painful fingers and toes and sometimes even my lips (of course toes are rare and lips are super rare. Go me for being a special snowflake :/ )
  • Then, purple and blue very cold, painful fingers and purple or black very cold, numb toes
  • And finally, for the last few years, any variation of purple/blue/white/red, (as the blood flow starts to return…I often look very patriotic!) cold, numb, and EXTREMELY painful fingers and finger tips, AND dark purple or black, numb, and EXTREMELY painful toes.

It gets worse every year. More painful. The numbness and pain lasts longer. It gets harder to warm them up. My husband, always the engineer…the eternal fixer, has bought me countless warming devices. Some of them have worked better than others, but none are great. The one he really hates is his stomach or his back!! LOL. But honestly, skin is the best one. I’ve had to do it to myself many times. And trust me, when you’re already cold and numb, sticking your icicle hands on your own stomach is one of the most horrible things you can do to yourself! I much prefer the other, grosser, but pretty equally effective method of sticking all of my fingers in my mouth. You may not want to shake my hand right afterwards, but it does the trick in a pinch! You can also often see me driving down the road in the winter with my hands INSIDE the heat vents.

So what sets these crap attacks off? Preeeeeeeety much anything. It’s not even just the winter either. A 65 degree day can set it off. Or peeling an orange. Or eating cold grapes. Or holding a glass of ice water. Or grabbing something out of the freezer. Or the air conditioning being a little too low. Oh and did I mention nervousness????!! Yeah!!!! Isn’t that amazing! So if I’m really nervous about something, I get an attack, so then my hands and feet go all wiggy, which then actually makes me cold. So now I’m nervous and shivering because I’m freezing. A.W.E.S.O.M.E. So you can imagine how great that works out for me during a job interview or a speech or something equally nerve wracking and important. Teeth chattering, legs shaking, fingers the color of the American flag. It’s a hot mess. Or should I say cold mess.

So here’s my Raynaud’s in all it’s glory. (this is nowhere near it being at its worst)

15230642_10211489414611857_5035191479760984545_n

And this is more like what it feels like.

ice_hand

Maybe it’s cool now. I’m mother friggin’ Elsa.

elsa

Stay tuned for my next installment, when you learn about Raynaud’s bastard step sister, Erythromelalgia. (say that 3 times fast. Heck I can’t even say it once!) You won’t want to miss it. If today I’m Elsa. Tomorrow I’ll be Te Kā from Moana.

6 thoughts on “hot and COLD, part 1

  1. ooh – poor you! That sounds terrible! I have a friend who claims to have Raynauds, but after reading this my hunch that he’s exaggerating is confirmed – his hands get cold in the winter… that’s about it – nothing at all compared to your poor extremities!

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