Good morning! Thursday evening, while my youngest was held captive and forced to take weird pictures of his Mom acting like a gigantimous dork-a-saurus, the seed of what to pontificate about today was planted. (Pontificate. Now THAT’S a fun word to say! Pon-tif-i-ma-cate. *pauses for a fit of giggles*)
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| Notice the freaky color difference between the elbow and the foot? Yeah, thanks Ra-na's! |
Me: “How are they (the pictures) coming out? Anything useable?”
The Boy: “I guess. I just keep getting this weird glare on your feet.”
Me: “Glare? Oh! I guess it’s chillier out here than I thought. Huh!”
It would seem that the EXTREMELY pleasant 72 degree weather was too cold for my glitched out bod to spend time outside in a tank top and barefooted, since Raynaud’s had made an appearance in my feet-sies.
OK, I do not possess the ability to properly pronounce this word. Sorry, no matter how many times I look it up, I ALWAYS manage to garble it, so from this sentence forward I shall refer to it as Ra-na’s. It’s just simpler that way and I look like I’m being an idiot on purpose, which is much preferred to appearing that way by accident.
Ra-na’s is this awesome glitch that makes the blood vessels in your extremities shrivel up like a naked man’s Daddy-dangels in a snow storm. *again with the fit of immature giggles* The result is that things turn snow white and tissue damage ensues.
In more serious cases, you can get these wonderful ulcers from the “dead” tissue, which if not taken care of can lead to gangrene and amputation. (DOUBLE YUCK!)
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| See the mottled appearance? I held an ice cube for less than 30 seconds. The shriveled look to my fingers? Because of the reduced blood flow...HELP! I'm deflating! (And yes, I did tissue damage to myself JUST for you! You're welcome) |
When it first made its appearance in my life, my wonderful Nurse Practitioner (that I STILL miss like the dickens) assumed it was Primary Ra-na’s, just a minor annoyance I needed to keep an eye on. Now, we know it was a harbinger of a deeper auto immune problem. (Primary Ra-na’s, usually making its appearance in your late teens to early 20’s, is just that. It’s a Lone Wolf and causes mischief by itself. Secondary Ra-na’s, usually hitting later in life, is a red flag that you’re sicker than you thought and someone REALLY needs to do a Rheumatoid Blood Panel on your arse.)
At first I kinda viewed it as a party trick, holding ice cubes to freak people out with my hand’s mood ring behavior. THEN I found out I was doing minor tissue damage every time I did that. BRILLIANT!
Earlier this year I met Karen, a woman who has lived with Ra-na’s for over 20 years as a part of her Sclero Experience. (Like the Jimmy Hendricks’s Experience, only you can’t dance to it.) She introduced me to what can happen when you’re engaging in dumb-assery, even by accident or from lack of knowledge. (Warning! Before you click on this link, know that there are pics involved that could be viewed as seriously ICKY!)
She also clued me into “the rules.” (Here’s a link to a series of articles she’s written on the care and handling of Ra-na’s. Enjoy!)
1) Keep your core warm. Yep, there is more than my TOTALLT AWESOME sense of style behind my wide selection of hoodies. I always layer, tank top or T-shirt and hoodie, to keep my stupid core warm. It helps keep the blood circulating to the outlying parts.
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| Yep! Just like the hoodies, I have a wide selection of gloves, including my Zombie-hand and Skeleton. |
2) If you’re going out, think ahead. This translates to taking gloves with me EVERYWHERE I go, YEAR ‘ROUND! Why? Because stores like cooler temps to keep the spread of germies down and grocery stores aren’t friggin’ playing when it comes to keeping their cold aisles COLD! This is also why I didn’t get to wear sandals much this year. Five minutes grocery shopping and my feet looked like they were made of wax!
3) Check for wounds and treat appropriately. That’s right, Ra-na’s likes to make mountains out of mole hills when it comes to the areas it calls home. Primo example…Scooter, our loveable doggie, jumped on my feet Thursday night and accidently scratched me. After much cussing, I thought I was just bruised. That was until Friday morning when I noticed the ouchies… the ouchies that by Friday night were infected. (I DID wash them and wear socks all day! I SWEAR!)
Stupid reduced blood flow means my stupid white blood cells get caught in a stupid traffic jam and can’t get to the scene of the accident on time to stop infection from starting. (Stupid Ra-na’s!)
4) Talk to your Doc. Make sure he knows if the party tricks are getting worse, since every last time things go white it’s causing cell death equaling tissue damage.(And it doesn’t hit just fingeres and toes. On various lists of “possibles” I’ve seen things listed that made me quake [and giggle] in astonishment. Things like tips of nose, ears, nipples, Daddy-dangles, and I’ve even seen a picture of a chick with Ra-na’s affecting her tongue!)
So there you have it, my pontification for a laid back Saturday morning. Just remember, there are always exceptions to anything. Even though Primary Ra-na’s tends to start in late teens or early 20’s, Karen was diagnosed with Sclero in her early 20’s. If her Doc had kept insisting it was only Primary, her diagnosis could have been missed longer than it was, allowing more damage to occur before treatment was started.
So ALWAYS do your research, know your facts, and don’t turn your hands white with ice cubes to freak other people out because you think it’s hilarious. Just sayin…
