Monday, May 23, 2016

New Yoga for Lupus class in Maryland!


Over the past few years, I've had the pleasure of getting to know Lorena Lues, owner of Utopia Wellnes Health Coaching and Yoga. She and I have served on patient panels together, and I always appreciate the calm, holistic approach she brings to life with an autoimmune disease. 


She is now offering a series of local yoga classes in Maryland, specifically geared to people with lupus. Find out more about Lorena, her yoga classes, and Utopia Wellness here!

Click here for more information on the class!




Wednesday, May 18, 2016

Additional lupus FB chats coming up soon! Thanks, Lupus Pennsylvania, LRI, and Lupus LA for hosting!

Missed today's Lupus Facebook chat? Don't worry! There are more opportunities to get your questions answered, offered as part of Lupus Reseach Institute's new LEAP initiative. Here are the upcoming chats:

HOST: @TheLupusFoundation 

May 25, 2016 7 - 8 PM EST 
Experts: Rheumatologists from Geisinger Medical Center
Author of Lupus 365 Tips for Living Well, Jessica Rowshandel, LCSW


HOST: @Lupus LA

May 20, 2016 12 – 1 PM PST 
Experts: Rheumatologists from University of California, Irvine (UCI)
Author of Lupus 365 Tips for Living Well, Jessica Rowshandel, LCSW

June 7, 2016  6 – 7 PM PST 

Experts: Rheumatologists from University of California, Irvine (UCI)
Author of Lupus 365 Tips for Living Well, Jessica Rowshandel, LCSW


HOST: @LupusResearchInstitute


June 14, 2016 12 – 1 PM EST 

Experts: Rheumatologists from Harlem Hospital and Columbia University Medical Center


You’re welcome to join any and all of the following chats, no matter where you live.  

How to Join: It’s easy! Just visit the host’s Facebook page on the date and time listed, and ask your questions as comments in the chat post. 

Tuesday, May 17, 2016

Lupus Pennsylvania Facebook Chat - Despite Lupus will be answering questions LIVE tomorrow from 12-1pm. Tune in!

I hope you can join me for the Lupus Pennsylvania's FIRST LIVE FB CHAT (perhaps MY first facebook chat, too) TOMORROW Wednesday 5/18, from 12 noon - 1pm!

The Lupus Foundation of PA, in conjunction with the Lupus Research Institute, is pleased to announce their first online facebook chat. Professionals from Geisinger Health Systems (as well as yours truly) will be on hand to answer your questions.

Join us on The Lupus Foundation facebook page. Look for the "Welcome" post and type in your questions. The chat will only last an hour, so be sure to log on between 12-1pm on Wednesday!

WHEN: May 18, 2016, 12 – 1 PM EST

WHO: Experts from Geisinger Medical Center, Dr. Alicia Meadows and Dr. Christina Downey, and Sara Gorman,  Author and Blogger, "Despite Lupus"

WHERE: Lupus PA Facebook page




Friday, May 13, 2016

LFA DMV Lupus Everyday Heroes. Got lupus? Then you're a hero in my book!

Thanks to the Lupus Foundation for their Everyday Lupus Heroes Series. I'm honored to be included!



Check out this  @LupusDMV's Tweet and follow them to see all of their Lupus Heroes!

Tuesday, May 10, 2016

Exagen Lupus Test: Looks like somebody's hard work paid off!


Exagen Diagnostics, a rheumatology specialty laboratory, has developed a groundbreaking diagnostic test for lupus, and a fresh new study has found that it works. How exciting!

Read details from the Press Release here:

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Because the symptoms of lupus mimic other rheumatic diseases, it has historically been difficult to arrive at a correct diagnosis. 51% of patients with suspected autoimmune or immune disorders are initially misdiagnosed.

Marketed as Avise CTD, the diagnostic tool has recently been proven in studies to be a significant improvement over traditional lab tests. It is the only validated lupus test available incorporating scientifically proven CB-CAPS technology, and it is having a big impact with doctors and their patients.

The test, which requires only one blood draw is helping physicians distinguish between overlapping symptoms and aid them in the differential diagnosis of several systemic autoimmune rheumatic diseases, including the difficult-to-diagnose lupus. It took the company and collaborators over five years to validate the test.

 A study recently published in the on-line journal Lupus Science & Medicine proves its effectiveness. “The results showed that this test is highly specific for SLE,” he says, “approaching 100% in the differentiation of SLE versus primary fibromyalgia.”

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You can read the official press release here, and feel free to do celebratory cartwheels in your living room! 

Monday, May 9, 2016

A trip to the lab for lupus: a urinalysis collection is always an adventure.

A few months ago, my daughters accompanied me on a series of errands, one of which was a trip to Quest Diagnostics, our friendly, neighborhood routine test lab. This quick visit included a sample drop-off, and you can imagine the giggling from the back seat when they learned that "the orange jug in the back contains Mommy's tinkle." (GIGGLE, GIGGLE, SNORT, GIGGLE, SNORT.) It was an uneventful trip (which is, frankly, what you want when you're transporting 24 hours worth of you-know-what), but, boy, were there questions. And questions for those questions.

Truthfully, I welcome the opportunity to talk to my girls about lupus, and everything that goes with it. It gives me the chance to explain, enlighten, but also to reassure. They see me juggle medications and doctor appointments, and hear me talk about my blog topics and lupus concerns. They live with my daily nap, my avoidance of too much sun, and watch me adhere to a healthy lifestyle. I do those things to stay as well as possible. But it's when I do tests like these that I can confirm that my hard work is paying off. And even if a test comes back a little off,  the doctor can find out right away, so that we have the chance to fix it.

Once the girls had asked all they could about the intricacies of the medical component of the test, they turned their sights to the aesthetic. Specifically, they wanted to know why the windows of the laboratory were tinted? What didn't they want people to see? What was so secretive about what happens inside?

To these questions, I smiled. For two reasons:

One, because apparently, given all the open, lupus discussions we have as a family, often over the dinner table, my girls find no shame, discomfort, or reason to hide any aspect of my life with lupus. It is not a word that is whispered in our household. It is something to be embraced, and my girls do that with much grace.

And two, because in answering their question, I was reminded of the primary issue that led me to design and develop the pillbags: privacy.

Why should the outside world have to know what our lupus business is, in or outside a lab?  Why shouldn't we be able to tend to our disease unobserved? Isn't it nice, in this age of Facebook, Snapchat, and Twitter, to be a little discreet once in awhile?

Who knew an innocent trip to the lab would reaffirm a value on which my business was built. Medical privacy and discretion is a patient right, and our pills (and how we carry them) deserve the chance to be included in that freedom, too!

In honor of lupus awareness month, be sure to check out our custom-designed Fabulupus pillfold, now available on Amazon! 








Monday, May 2, 2016

Mother's Day gift giving made easy. Brighten her day with a pillfold!



There's still time to send the perfect gift for Mother's Day! Be sure to check out the Pillfold website today for all of our in-stock patterns and designs. Featured pillfold patterns above: the green Sanibel, the black and white Hastings, and the navy Bordeaux.