Wednesday, October 1, 2014

Great interview from the world of lupus research - broadening the lupus diagnoses net!

I'm pleased to share a link to an interview, featuring one of my favorite lupus experts, Dr. Susan Manzi. Dr. Manzi always has something interesting to say, and a great way of saying it, and this interview is no exception.

Here, Dr. Manzi elaborates on the new diagnostic criteria that will ideally help people get a more accurate diagnosis of lupus faster. This new criteria allows for a broader, yet equally as specific diagnosis of systemic lupus by catching more versions of the bio-markers that have historically indicated a diagnosis of lupus. (For example - instead of the malar (butterfly) rash being the only rash that is an official bio marker of the disease, the broader criteria allows for several other forms of rashes (that are perhaps more common) to be bio markers. (Interestingly, in my 14 years, I've never had the malar rash, but I've had plenty of other rashes along the way. While I certainly don't need any more proof that I have SLE, it's good to know that one of those might count toward a diagnosis!)

Dr. Manzi goes on to say that historically, a positive ANA has been considered "the lupus test", and is typically a pre-cursor to exploring whether or not someone has lupus. But she points out that it's estimated that nearly 32 million people have a positive ANA, while only 1.5 million actually have lupus. That alone tells you how mistakenly broad the old "lupus test" has been!

Watch the video below, you'll learn a ton! As always, thanks to Dr. Manzi for putting the latest and greatest lupus developments into layman's terms.

VIDEO: New diagnostic criteria catch systemic lupus earlier : Family Practice News

Friday, September 26, 2014

Book ending the week with Cancer Awareness. Mesothelioma Awareness Day is today!

Earlier this week, I made a plug for the upcoming Rock, Paper, Cocktails! shopping event that benefits below-the-belt cancers. (An event started by a real dynamo, Jennie McGihon.)  A few days before my post, I got an email from Heather Von St. James, who was diagnosed with mesothelioma; a rare and preventable cancer caused only by exposure to asbestos. When she was diagnosed at the age of 36 , she had just given birth to her daughter and was given 15 months to live. After a life saving surgery that included the removal of her left lung, she's made it her life's mission to spread awareness about mesothelioma and the dangers of asbestos. (A fellow passionista. I love it!) 

September 26th, 2014 marks the 10th anniversary of Mesothelioma Awareness Day, and it has been the driving force behind the movement to bring more attention and funding to this kind of cancer. Thus, I thought it fitting to start and end the week by spreading cancer awareness. To hear more about Heather and her story, click here. Here are some facts that blew me away about this kind of cancer: 

Mesothelioma commonly sits dormant
in the body for 20-50 years after
initial exposure to asbestos.

Between 2,500 and 3,000 new cases
of mesothelioma are diagnosed
each year. On average,
they are given 10 months to live.

Mesotheliom incidence in women is on
the rise because many women
experienced second hand exposure
from parents or spouses who worked
closely with asbestos.

This latter fact was the case with Heather. She had never worked with asbestos, but her father did, and secondhand exposure as a child was enough to make her sick decades later. Be sure to read through the Mesothelioma fact sheet below, and click here for more info. 


Wednesday, September 24, 2014

Talking lupus symptoms with your kids. I tend to share, so that they share back!

Earlier this summer, I realized it was time to renew my passport, which involved getting a new passport photo.  It was due to expire at the end of September, so the timing wasn't that great - given that my moss/thinning strands/curly cue hair ordeal was going to be in full force. But the last time I renewed my passport, I'd just finished losing more than 50% of my hair, and was sporting a hairdo that was of the G.I. Jane anything was going to be an improvement.

I debated when to get the picture taken. I wanted to send the paperwork and photo off by the 10th of September. Did I take the photo at the beginning of August, when I had more strands, but less moss and more bald spots? Or should I wait until the beginning of September, assuming that I'd have fewer strands (because they would have fallen out), but more moss, providing that valuable ground coverage that masks the baldness?

My family took a vote - Bernie even drawing a picture of what it would like as my hair grew back in, and we decided that it was better to go with a known quantity. At the time of the debate, I knew what I was dealing with: I knew how best to style my thinning hair; I knew the workarounds; I knew the troubled spots. But come September, what would I have to work with? It could be better. But it could also be worse. A lot worse. Who could really know for sure?

So off I went to the drugstore to have my photo taken...making sure that I fluffed over my ears and made no sudden movements to dislodge the strategically placed strands right before the photo was snapped. And my newly issued passport arrived in the mail this week, and I'm happy to say the photo turned out just fine. My strands behaved.

Some might question the way I involve my kids in my journey with lupus (and hair loss, and all the rest.) But an open approach really does work for us. Having support from my two little girls - who seem to love their dear old mom so very much - really makes the lupus pill a lot easier to swallow.

While I don't overwhelm them with gory details, the fact that, for instance, they know I'm dealing with hair loss makes conversations a lot more genuine. I'd recently taken a picture of my bald spots on my phone, just so I could see what I was dealing with up top. I hadn't intended for anyone to see the photo (although I should have learned my lesson from the recent celebrity photo leaks, eh?), and my girls happened upon the picture as they were scrolling through my photos. Deirdre said, "Hey look, it's Mommy's hair. It's growing back!"  And Bernadette let out a big, "Hooray! Hooray!". Here, was photographing the bald spots. And all they saw was growth. It was so sweet and loving - and just the encouragement I needed to hear.

In fact, for about a week after that, every time Bee would draw a picture of me, she'd draw me with long, thick hair. And she'd say, "I drew it long because it's really growing back, Mommy." Sweet, loving gal. I could just eat them both up!

Deirdre has also been known to take my hands in hers when she spies an attack of Raynaud's - rubbing them vigorously, or blowing on them. I tease her by dipping my cold fingers into the back of her shirt...which she likens to taking the ALS Ice Bucket Challenge!

And just a month ago, little Bernadette happened to be eye-level with one of my hands - which, I suppose, looked a little humble with its knobbiness and hues of purple. She gently took my hand in hers, kissing and caressing it lightly, saying, "Oh, Mommy. Your joints look like they hurt. Let me make them feel all better with some kissies." Now, who can argue that compassion like that isn't mutually beneficially?

And here's a picture Deirdre drew during church last week. I look pretty darn happy, despite a diagnosis with lupus, don't you think? Just the way it should be!

Monday, September 22, 2014

Rock, Paper, Cocktails! 2014: Monday, Sept 29th, Old Town Alexandria. See you there!

I'm pleased to be supporting the cause once again by participating in the annual Rock, Paper, Cocktails shopping benefit. The event, which raises money for below-the-belt cancers, will be held next Monday, September 29th, in the swanky Hotel Monaco in Old Town, Alexandria. Come shop for the cause, and you can check out the brand new Fall Pillfold designs in person. That is, IF they last...  :)

Details for the fun event are below, and you can buy advance tickets here:

Rock, Paper, Cocktails! 2014

Monday, September 29, 2014 

6:00 PM to 10:00 PM (PDT)

Hotel Monaco, A Kimpton Hotel

480 King Street

Alexandria, VA

Please join the 2014 RPC Host Committee 
at the SIXTH annual Rock, Paper, Cocktails! 
A shopping benefit to defeat women's "below-the-belt" cancers
supporting the mission of the Inova Women's Hospital...
 and help Jennie McGihon celebrate her five-year cancer cure!

VIP Reception 6 p.m. | General Admission at 7 p.m. | First Raffle Drawing at 7:30 p.m. | Live Auction at 8:30 p.m. | Event Concludes at 10:00 p.m. 
VIP tickets $47, includes one complimentary cocktail + champagne toast to a cure.
Regular admission tickets $37, includes champagne toast to a cure.
Complimentary hors d'oeuvres and sweet treats available with ticket purchase.
Discounted cash bar with complimentary non-alcoholic beverages.
Only advance ticket sales for purchase. 
Cash, checks, and credit accepted by all vendors. 
Over a dozen local fine gift vendors will be on hand!

Friday, September 19, 2014

Introducing the New Pillbag Runway Series: Fall 2014 #pillorganizersrock

New Season. New Colors. New Pillfolds! 
This fall, I'm excited to launch a new line of Pillbags – the Pillbag Runway Series.

With the Pillbag Runway Series, we’ll release three new exclusive Pillbag designs at the start of every season, each in limited quantities. You won’t have long to snap up one of our latest designs, but more options equals more fun. And when it comes to keeping your pills stylish and secure, adding a little excitement to the mix just makes sense!

The carefully selected fabrics for the Runway Series are of the highest quality, featuring crisp color combinations and fashion forward designs. They use the finest Made in the USA 100% cotton.  Although the exterior fabric of the Runway Series won’t be water resistant (as our traditional Pillfolds are), the vast assortment of stylish fabrics from which we choose our Runway Series Pillbags enables us to bring you more fashionable pillbags more often. The Pillbag Runway Series will continue to live up to the highest standard of quality for which Sara Gorman's Pillbags is known, protecting your pills with our strong vinyl interior, and secure zippered pouches. You’ll simply be getting an extra dose of style with this contemporary line of Pillbag designs.

First up in the Pillfold Runway Series for Fall 2014 are the Pillfold Varsity, the Pillfold Zoe, and the Pillfold Hastings .
Click here to see all of our stylish Pillbag options! 

And remember, Rosie O'Donnell, co-host of "The View" calls her pillfold the "Best Pill Organizer. Ever." (She's a proud owner of the popular Pillfold Bordeaux!) 

Wednesday, September 17, 2014

Lupus hair loss: making the most of the moss

I am thrilled to say that the hair I've lost due to last year's flare is growing back. Hurray!

I have a very nice layer of hair all over my head - a layer that I affectionately refer to as "moss." It's fuzzy, thick, and a little curly - all the makings of world class ground coverage. Thus, my days of masking my bald spots and hiding my oh-so-white scalp between strands is officially over.

Now, it's time to embrace the moss stage - appreciating the girth that it adds to my head, while creating new strategies for dealing with my evolving head of hair.  I keep thinking I should pay a visit to my hair dresser, but I've decided that I'm not ready for that. The significant length and fullness I still have in the back has been paramount for masking - and I think I want to leave myself with options. Once the moss really takes off, and sprouts turn into strands, then I think I'll find myself seeking outside assistance. Until then, I'll stick with my amateur, yet comfortable approach to hair styling in spite of hair loss.

In celebration of my significant hair growth, here's what I'm thankful for:

a) Inconspicuous hair loss: I have to be honest. I was lucky this time. You really haven't been able to tell that I've lost a ton of hair. Although my family knows differently - from both the strands of hair that appear EVERYWHERE, and the fact that we scrutinize my incremental hair growth often - most people probably wouldn't know. They might suspect something is amiss - simply because I haven't had a good hair day in months. And the fact that I don't really have a style at all. It's just kind of...there. Most of it hanging on for dear life, in fact. My friends and neighbors might also wonder why I've been wearing my hair in an up do every day for such long time, but that's okay. The fact that I maintained comb-over strands over the top of my head during this time kept the secret safe. The baldness wasn't all that noticeable, and with the arrival of the moss, I'd say I'm home free.

b) Natural hair color: I was worried about this one. As I continue to age (and why hasn't someone done something about that, by the way?), I know the grays are coming. I consider myself lucky that I haven't started coloring my hair, but I know it's around the corner. I figured with this latest round of hair loss, my body just might move up the clock on that one. So I prepared myself for my hair to grow back lighter, or even completely gray. But so far so good. The moss is my natural dark brown color - which makes these stages of growth all the more manageable.

c) Hair accessories: One really can't complain when it comes to options for adorning your hair. They really do have everything out there - from my favorite baby clips to headbands to jeweled barrettes. I continue to move with the times -  and thus my choice of hair accessory changes bi-weekly. After the middle of the summer, I was losing so much on the sides, those baby clips weren't working. So I switched to sweeping it up in the back with a little claw clip. And now that the moss is thickening up and fuzzing out, the up do is less than flattering. (Up close, the loose curly cues look pretty ridiculous!)  So although the baby side clips still don't have anything to grasp onto up high, I've started pulling my sides straight back, behind my ears. Eh, voila! A cute new way to wear my hair...until the moss is on the move.

I can hardly wait. Can you?

Friday, September 12, 2014

Book Review: "The Lupus Encyclopedia", by Dr. Donald E. Thomas Jr.

Since the LFA DMV's Annual Maryland Summit is tomorrow, I thought it would be a perfect time to share my glowing review of Dr. Donald Thomas' new book, “The Lupus Encyclopedia”. Dr. Thomas is a presenter at tomorrow's event, and if you're attending the summit, be sure to stop by and pick up a signed copy of his book. I plan on having him sign my copy - and I might even ask to snap a photo with the famous author, too!

Having known Dr. Thomas for several years, I had high expectations for his book. I knew it would be a thorough and accurate account of what lupus is, but I was hopeful that Dr. Thomas' all-encompassing goal of making life better for lupus patients would set this book apart from the rest. I’m thrilled to say that the book has exceeded my expectations, and Dr. Thomas has succeeded in publishing the ultimate lupus resource book. It is designed to educate, inform, and enlighten – and it gets the job done!

The Lupus Encyclopedia is a book that that every lupus patient should have in their home library. It's the most comprehensive lupus book out there, and is a valuable resource for anyone searching for a detailed and in-depth explanation of this complicated and mysterious disease.

The all-inclusive book runs over 900 pages, and offers a vivid account of the history, causes, symptoms, side effects, medications, treatments, and complications of the disease. Because of the breadth of information provided within the book, you actually begin to understand why lupus is so difficult to diagnose, treat, and manage. The Lupus Encyclopedia actually demystifies the disease in such a way that you, as a lupus patient, grasp just how complex your disease is. Your symptoms aren't crazy, abnormal, or figments of your imagination. You simply have a complicated, multi-layered disease called lupus. 

Here are three reasons why The Lupus Encyclopedia (TLE) is a valuable and much-needed resource:

1) TLE is easy to read: Even though the book runs 900 pages, it is organized into small, easy to digest sections. This subdivided format allows the reader to absorb two to three pages at a time, without becoming overwhelmed with information. At the end of each section, Dr. Thomas has included a handy, itemized list of the key points of each section, ultimately providing his own cliff notes to the text.

2) TLE is comprehensive: This will be your one-stop shop for all things lupus-related. Of course, it’s not a book that you read cover to cover. Rather, it’s a book that you consult and reference whenever you need a better, more complete understanding of the disease.  I even put TLE to the test. I had three specific, yet disparate lupus questions that I had lingering from a recent doctor’s appointment: what role does protein play in hair loss, is there a connection between gluten and auto-immune, and what are some joint-sparing adjustments that I can make in my daily routine? I looked to TLE, and within 15 minutes, I had my answers.  By consulting the detailed index, scanning the text, and perusing the key points at the end of each section, I quickly and efficiently found everything that I was looking for. It could have taken 30 - 45 min to track down that varied information online. And even then, I would have been bombarded with extraneous information that I didn’t need or want.

3) TLE is written by someone who cares: This is probably the driving factor behind the comprehensive, detailed nature of this book. It was written by a doctor who goes above and beyond in helping his patients become more educated and informed about their disease. In publishing this book, he’s allowed his passion for enabling patients to improve their lives with lupus to spread to the lupus community around the world. TLE includes practical advice and applicable coping strategies you don’t often hear from a doctor. As you read the text, and take note of the patient-directed inclusions on practically each page, it becomes clear that the author is knowledgeable, yet understanding. Direct, yet gentle. Dr. Thomas is just the kind of doctor we’d want to write a lupus book. I’m so glad he did!