Pretty Flakey

Welcome to Pretty Flakey, thanks for stopping by!  My name is Tami, and I have psoriasis and psoriatic arthritis (PsA).  I was diagnosed with psoriasis in 1996, and with PsA in 2008.  You can read more about these diseases by clicking the tabs dedicated to them.  I am an advocate for creating awareness for this painful, incurable, debilitating disease.

Please take a look around the site, check out the blogs, and see what's new.  Tell me what you think of the site, what you've learned, and what you would like to see in the future.  

Tipping The Scales on Psoriasis:

Leap Day-Leaping For a Cure

Join us on February 29th, 2020 for The 4th Annual Tipping the Scales on Psoriasis: Leap Day-Leaping For a Cure! 

This family friendly even features fun for kids and adults alike!  The kids will have a great time playing carnival games, while the adults check out the items on our always fabulous Chinese Auction, play Cash Bingo, and enjoy a variety of Small Games of Chan

Our always popular $5 dinners will tempt your taste buds! Cash bar, free non-alcoholic drinks, the famous Pittsbugh Cookie Table, Door Prizes and fun await you!! This is a family friendly event, complete with fun and games for kids of all ages!!

And, as always, we feature some of the hottest live entertainment around!!  Get back to the beginning of one of Beaver County’s hottest bands with the original Drunk Uncles, a 2 piece band that started at a garden party in Cranberry, PA, took over the acoustic mic at Key West’s Captain Tony’s, (bringing the house down with their version of a Kenny Loggins favorite), and crowd favorite at the Pittsburgh Parrothead Club’s 2018 Buffett Tailgate Party!!  Then, see what those Drunk Uncles did that turned them into the Funky Uncles, whose covers of your favorite funk, rock and the best in “Skating Rink Rock” will get your boogie shoes moving!  Emcee for the day is our great friend Ralph Cananzi, of Frank’s Original Grill and Spyn Doctor’s DJ Service.

My Story: In just under 4 years, I have moved from hiding my Psoriasis and Psoriatic Arthritis to finding my passion in advocacy, mentoring and fundraising!  I love the mission statement: “The NPF is a non-profit organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected”.   After more than 20 years of psoriasis, and over 10 with psoriatic arthritis, a dozen failed medications, 2 joint replacements, permanent disability and countless procedures, the strides in understanding and treating my disease, while amazing, aren’t yet a cure. 

All proceeds from Tipping the Scales on Psoriasis will benefit the NPF.  As the leading non-profit organization championing for the care and cure of psoriatic disease, NPF is unparalleled in its offerings for patients and practitioners. From community volunteers, to one to one peer mentoring, to local, state and federal advocacy, NPF not only funds research and development for diagnostic tools, treatment and cure of psoriatic disease (over $15 million in 2018 alone), but also works to add common sense patient protections for medical treatment and to lower out of pocket drug costs. NPF also offers free webinars and programs for medical practitioners and patients, as well as patient assistance and support through the Patient Navigation Center, where trained staff are available to help those who suffer from psoriatic disease find a doctor, file for disability, obtain assistance with accessing medications, and so much more.

Get your tickets for the best Leap Day gig around, the gig that has won an NPF award, THE place to be!!

 

TIPPING THE SCALES

ON PSORIASIS 2020

 

DETAILS

 

SATURDAY, FEBRUARY 29, 2020

1PM-9PM

CENTER TOWNSHIP VFW POST 1821

144 BUNKER HILL ROAD

ALIQUIPPA, PA 15001

$15.00 ADULTS AND KIDS 10 AND OVER

KIDS UNDER 10 FREE

GAMES FOR KIDS, GAMES OF CHANCE FOR ADULTS

 

CASH BINGO, PULL TABS, COMPLIMENTARY COOKIE TABLE, SNACKS AND AND NON-ALCOHOLIC BEVERAGES, $5 DINNERS, WINE PULL, CASH BAR, DOOR PRIZES, 50/50

 

EMCEE-DJ RALPH OF THE SPYN DOCTORS

LIVE MUSIC WITH THE

DRUNK UNCLES

FUNKY UNCLES

FOR TICKETS AND DONATIONS, CLICK LINK BELOW!

What the heck is a Spoonie, anyways???

The Spoon Theory is a visual  way to describe what it is like living with a chronic illness.  It was created by a woman named Christine Miserandino in a 2003 essay, describing how she showed a friend what it's like to live with Lupus.

Fatigue is a huge concern for people with many autoimmune diseases, many times pairing with chronic insomnia to make energy regeneration even more difficult.  Psoriatic Disease is no exception.  In fact, the physical symptoms of itching, burning and flaking can seriously aggravate fatigue due to the fact that symptoms don't stop at night.  Reports of waking with bloody sheets, pillowcases and nightclothes caused by sleep scratching to the point of bleeding are incredibly common.  Fatigue is a long way from "being tired".  It is a full body exhaustion, and what I personally describe is 'trying to walk through quicksand, while balancing an elephant on your shoulders".  It is also described as a living thing, a monster, living underwater  and all encompassing.  We wake up tired.  We are tired all day, and we go to sleep tired. 

So, with the Spoon Theory, spoons are used to signify units of energy.  1 spoon=1 unit of energy.  You then show how energy is used in the healthy versus the chronically ill by each lining up 12 spoons in front of you.  You then take away a spoon for every activity you perform, from getting out of bed, taking a shower, getting dressed, preparing and/or eating breakfast, doing dishes etc.  A chronically ill person can run out of spoons before noon.  If that happens, they will either have to rest or take from the next days' spoons, putting them chronically behind.  Add in the trouble sleeping, and you are in big trouble! 

So, now you know the Spoon Theory.  Those of us with chronic illnesses that use up our spoons are called Spoonies.  And now you know!

Probably not what you thought it was, huh?

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