Monday, November 28, 2011

Upgrading for the sake of lupus

It's about time.

That's what my sister said when I told her I'd finally gotten a smartphone. And she was probably right. I'd been holding on to my handy dandy flip phone (that wasn't all that handy OR dandy) for all too long, and it was time for an upgrade. I was reluctant for a couple of reasons - the biggest one being that I simply didn't need to use my phone for anything other than calling people. Or so I thought.

Turns out, having a phone that can email, surf the web, take pictures, and run credit cards (for book signings and pillbag shows) is pretty darn handy. That final reason is the one that prompted me to switch, but what I didn't know was how helpful the phone would be in my life with lupus.

I didn't realize that being able to check email on the run would eliminate that frantic 20 -30 minutes I took to check email after I put the girls down for a nap, most often pushing my nap back later than necessary.

I didn't realize it would allow me to run errands faster and more efficiently - because instead of having to wake up early from a nap in order to search, find, and print a recipe before heading out to the grocery store, I could just look up the recipe on the phone once I was at the store. The ingredients I needed would be right at my fingertips.

I didn't realize that I could get a lot more pillbag business done on the fly, rather than set aside time early in the morning or late at night to tackle my manufacturing to-do list - times for me that were definitely best spent sleeping.

And lastly, I didn't realize how much extra time it took to enter in sales transactions from book events (and now, from pillbag shows) after the fact. Now, I no longer have to set aside time to manually enter in the information after the fact - I process the credit card right then and there, eliminating a ton of of extra work. 

Wow. Aren't I glad I wised up? 

And though I hadn't anticipated any of the great benefits of a smartphone, I had thought through one concern -  and that was ease of use. Some smartphones out there simply weren't finger-friendly to me, one reason I'd held off for so long. It seems the angle that's required to type on the keyboard of, say, my husband's Blackberry, makes my fingers ache. Thus, I knew that when I got a phone, I wanted a touchphone. So a touchphone it was.

And it's perfect. My new phone and I are really getting to know one another - and there are no achy fingers, no frantic pre-nap emailing, no late-nights trying to catch up. The phone is a life-saver, and I can't believe I waited so long.

So, yes, big sister, you were dead right.

It was about time.

Friday, November 18, 2011

Managing your lupus expectations – yours and everyone else's.

Now that I’m in the world of manufacturing (eek!), I’m learning the lingo pretty quickly. And there’s a phrase that keeps popping up – mostly in regard to my suppliers:

Overpromise and underdeliver

Now don’t get me wrong – my suppliers have been fabulous. My materials have, for the most part, all arrived when they said they would, and most of them, thank goodness, have arrived in the manner in which they said they would. But with more than a dozen “parts” coming from more than a dozen companies, it’s been a little tough to achieve that 100% perfect rating.

And the worst thing is to have a supplier overpromise, and then underdeliver.

If a part is supposed to arrive on a certain day, and then it arrives three days late, that’s underdelivering.

If a part is supposed to arrive in a batch of 500 (yards, units, what have you), and they arrive in a batch of half that amount, that’s underdelivering.

Of course, the best thing I can do to prevent that from happening is to check, double check, and then check again after the order is processed. But even that isn’t foolproof.

So I’ve realized I just have to manage my expectations. Which brings me back to how I find it best to work with lupus.

The worst thing for me – one of the things that frustrated me the most about lupus – was overpromising on what I could do, and then under delivering on that promise. And it usually wasn’t with other people – it was usually just a standard or expectation I’d set for myself. But the underdelivering part – ugh! That felt awful! I felt like a failure, and it made me hate the limitations of lupus even more.

So now, I’ve realized that managing my expectations is the best way to manage my disease. I know I have to take a nap everyday, I know I can’t stay up until after midnight night after night. I know that I can only handle so many tasks in one day before I just implode. So if I plan for those things – and give myself the leeway I need to stay healthy, mentally and physically, I’m not going underdeliver…because I haven’t overpromised.

Now applying this to my manufacturing woes has been hard. After all – when you ask for something, you expect it to happen.  And even the most diligent follow-up regimen hasn’t produced perfect results. But I guess if I learn to factor in time, money and energy to allow for the mistakes…then when those mistakes happen, I’ll be better prepared to deal with them. Thus, making me a happier, calmer, more easy going customer.

Hmmm. Wonder what my suppliers would say about that?

Wednesday, November 16, 2011

The Pillbags next appearance - this Saturday in Old Town!

The PILLFOLD and PILLPOUCH made quite a splash at last weekend's Holiday Marketplace...what fun to design a product that makes you feel sassy about taking your meds!

This weekend is sure to offer more of the same, this time in Old Town, Alexandria. The PILLBAGS will be front and center at the St. Mary's Bazaar this Saturday, from 10-4pm. Details are as follows. You'll have to come by on Saturday to see all of the fabrics available. See you there!


Saint Mary's Christmas Bazaar
Saturday, November 19th, 10-4pm
400 Green St., Alexandria, Virginia 22314



Monday, November 14, 2011

Tracking the triggers of lupus - basking in the benefits

A couple of weeks ago, I wrote about my latest trials with Bernadette's eczema. We were drowning in lotions and creams, and tracking every possible food allergy we could. And while my little munchkin wasn't allowing her newly developed skin condition to upset her pleasant demeanor, her itchy skin was making it difficult for her to fall asleep at night.

Until her momma made a discovery. With the help of my trusty sidekick, Paola, we've discovered the primary culprit. And now I have just one word for you.


Turns out, my sweet little baby girl is allergic to wool. But put her in long pants or tights and a long sleeve shirt, limit her time on the wool rugs we have in the house, and encourage her to walk instead of crawl, and voila! Her eczema improves ten fold.

We were closing in on our hunch that it was some sort of contact allergy - bath soap, detergent, maybe some new clothes she was wearing - when Johnny scooped her up one afternoon, and held her for about 20 minutes. And by the end, she was covered in red patches. And what was Johnny covered in? A cashmere sweater!

Interesting thing is that while he was holding her, he was talking to a business associate who had stopped by the house. He noticed little Bernie's skin turning red right before his eyes, and asked if she had eczema. We talked skin conditions for awhile, and he convinced us to take another look at her food allergies. His granddaughter's eczema had been transformed by cutting out a few things from her diet. And yet, lo and behold, the reason for Bernie's sudden outbreak was right there before our eyes!

So - Johnny ditched his cashmere sweater for the evening, I lathered Bernie up with cream, and her skin settled down within a few hours. Good news is that we are now armed with information, and we can take steps to limit her outbreaks.

Before we made the discovery, I'd logged a considerable amount of time trying to educate myself and uncover the triggers - tracking her diet in a food diary, taking note of what she came into contact with, and doing some research online. I was jotting everything down in a pad, kind of a mini-version of my chronic control spreadsheet. And it worked! Sure, I was coming up with a bunch of negatives - no dairy allergy, no egg allergy, etc. - but I was eliminating culprits by the handful. Most importantly, I felt like I was doing something to help Bernie's cause. I wasn't just sitting back, watching those red patches spread. How wonderful to be informed, enlightened, and engaged!

And that's the beauty of the chronic control spreadsheet. I devote an entire chapter to it in my book - and it's the chapter I hear about most from my readers. It seems that the idea of tracking symptoms, medications, and lifestyle factors really does help. It provides clarity, gives you a little something to focus on, and can provide a helpful discussion tool for you and your doctor. Of course, too much of anything isn't ever good - so just make sure you don't go overboard on tracking. If you find yourself inundated, just flip to the second half of the Chronic Control chapter, and you'll find a few suggestions on ways to disengage - even if just for a few minutes. Sometimes, a mental break from our chronic illness concerns is just what the doctor ordered!

So while we haven't found a cure-all for her condition, we are making serious headway. I still use lotion several times a day, and because I can't limit her exposure to wool completely, we still have a bit of patchiness here and there to contend with, but overall, life with eczema is good.

Well, let's not get too far ahead of ourselves. Why don't we just say, "pleasantly bearable?"

Can you say the same about lupus?

Friday, November 11, 2011

S.L.E. Foundation's event of the year in NYC - don't miss it!

The S.L.E. Foundation of NYC has quite the event coming up this month. Check out the line up below - a great night for a great cause!

Here are the details - tickets are steep, but maybe your company or a big client is looking for a way to get involved with your oh-so-special cause. It never hurts to ask!

Monday, November 21, 2011
“Life Without Lupus Gala 2011: A Night at the Museum”
Honoring U.S. Senator Frank Lautenberg; Mrs. Bonnie Englebardt Lautenberg, and Daniel J. Wallace, MD, Founder, Lupus LA. Grammy Award winning singer, songwriter and activist Carole King to Perform

More than 600 members of New York City’s philanthropic, business and health care communities will join forces at the S.L.E. Lupus Foundation Life Without Lupus Gala 2011 on Monday, November 21, 2011 at The American Museum of Natural History. Aptly named “A Night at the Museum,” this year’s black tie gala, co-hosted by Willie Geist, Co-Host of MSNBC’s Morning Joe and Natalie Morales, News Anchor at NBC’s Today Show, will herald the quantum leap taking place in lupus research.

U.S. Senator Frank R. Lautenberg and Mrs. Bonnie Englebardt Lautenberg will be honored for their help in making lupus a national priority. Mrs. Lautenberg’s sister and S.L.E. Lupus Foundation Board member, Carol Weisman, was diagnosed with lupus at age 19. Daniel J. Wallace (MD, FACP, FACR), founder of Lupus LA, will be presented with the Foundation’s Medical Leadership Award.

Grammy Award winning singer, songwriter and activist Carole King will perform a tapestry of songs in honor of all women living with lupus. A live auction conducted by Jamie Niven, renowned auctioneer of Sotheby’s, will allow participants to support specific cutting-edge research at many world-renowned renowned institutions. Guests will enjoy a full program and sumptuous dinner served by Caterer Restaurant Associates, the official caterer for the Museum.

WHERE: American Museum of Natural History -- Central Park West at 79th Street, New York
WHEN: Monday, November 21, 2011 -- 6:30 p.m. to 10:00 p.m.

TICKETS: For information, visit or call Anita Cruso at 1-212-685.4118 x. 29 Individual tickets start at: $1,000

About S.L.E. Lupus Foundation: The S.L.E. Lupus Foundation is the country’s preeminent organization delivering direct patient services, public education and novel research at a national level. Founded 40 years ago in New York City by lupus patients and their families as the first nonprofit to serve the lupus community, it remains the cornerstone of comprehensive care in all five boroughs in the continuous battle for a Life Without Lupus.

Wednesday, November 9, 2011

PILLBAGS unveiled - Friday, Nov 11th in Alexandria!

When I was diagnosed with lupus almost 11 years ago, I realized three things very quickly:

One - whether I liked it or not, I had been initiated into the world of pharmaceuticals.
Two - I was going to be on a first-name basis with my pharmacist for a very, very long time.
Three - I needed to figure out a way to organize all of my medication, and it certainly wasn't going to be by using an ugly, plastic, sterile-looking pill box. (See exhibit A):

Nope - this young, energetic, fashionable gal wasn't going to succumb to "Big Blue". So I resisted, and resisted some more. But after missing a dose here and a dose there, struggling to renew my prescriptions on time, and flat out losing track of what pills I'd taken and when, I broke down and started using the box.

And I hated it. It made me feel old and decrepit, it never stayed closed, and it certainly didn't go with my bedroom decor. (And if they're not out where you can see them, forget about remembering to take them, right?)

So I decided to do something about it. Enter into the marketplace Sara Gorman's new line of PILLBAGS - fun, fashionable bags designed to carry medication. The bags are designed to bring a dose of style to your daily routine - featuring fresh, funky fabrics and cool, shiny hardware. Think sassy little handbag with a purpose. Like, a real purpose: making it easy and fun to take your medication so you stay healthy!

You'll no longer have to hide your pills when guests come over, and you won't struggle to figure out if you've taken your morning meds or not. The separate morning and evening clear compartments of the PILLFOLD make it easy to see your "pill" activity. Featuring 8 separate zippered compartments (7 days of the week, plus a "junk drawer" for extras), your daily medications will be right at your fingertips. And with easy to grip zipper pulls, a hook to hang the bag, and an easy magnetic closure, taking your pills will be a cinch. AND you'll look great doing it!

The second bag, the PILLPOUCH, makes traveling with your medicine bottles a breeze. Featuring 6  bands and a special-drawstring design, this cute little number is just the thing to keep your prescription bottles organized. Just throw it in your suitcase and go! No more pills spilling into the bottom of your purse, and no more little plastic baggies, as the PILLFOLD and PILLPOUCH are both safe, secure, and convenient. Goodbye plastic, hello style!

The PILLFOLD and PILLPOUCH will be available soon at Look for a new website coming soon!

Can't wait for the website? Just have to check out the PILLBAGS now? If you're in the Washington D.C. metro area, stop by my first "show" - St. Aidan's Holiday Marketplace this Friday from 9-1pm, or again from 7-9pm. I'll be there with my book AND my bag samples. Hope to see you there!

Orders placed on Friday will be shipped before Christmas - order the perfect gift for that special someone now!

St. Aidan's Holiday Marketplace
8531 Riverside Dr.
Alexandria, VA 22308

Hours - 9am to 1pm, 7-9pm.
Cash, check, Visa, MasterCard, American Express accepted.

Monday, November 7, 2011

Lupus and malware - the festering champions of the world

I promise I won't make a habit of these malware/lupus comparison posts, even though I could probably come up with a dozen more ways to compare the two evils. Having dealt with threats and alerts on my site practically every day for the last three or four weeks, I feel like I have a pretty good handle on how this malware stuff works. It's sneaky for one - and it festers, even when you don't think it's festering, it is. And the more time you wait to do something about it - the worse it gets. Like, exponentially worse. The site gets so overwrought with infection, that it's hard to get things under control. It's even hard to know where to start.

Sound a little familiar?

I realized that I fell prey to optimism once again. I just kept thinking that the malware issue would go away, that it wasn't as serious as it looked, and that I should just carry on as usual, and the problem would fall by the way side. I didn't actually ignore it - I just don't think I gave it the attention it deserved early on. I didn't bring in the big guns (the malware experts at until it was almost too late. Sure, I was on top of my web guys to keep after it - making sure they followed up on every hint of stray code. But that wasn't really addressing the issue - that was just treating the symptom.

Again, sound familiar?

I think it's only natural that we try to just keep plugging along, even when the obstacles in our path threaten to side track us or drag us down. That's how we're able to get things done, right? Head down, full speed ahead. But sometimes, the issues that we're trying so hard to ignore point to a bigger problem that really does need to be addressed. And the longer we wait to address it, the worse it gets. It festers, and soon enough, we find ourselves (and our websites) debilitated from head to toe.

So the next time you say to yourself, "I should probably call the doctor about this", just do it. Don't wait for your instincts to just "push through" kick in, and don't let that optimism convince you that the problem will just go away. That increase in joint pain, the fever that won't go away, that pesky rash that keeps surfacing - don't just brush them aside. The sooner you make that appointment, the sooner you'll address the issue at hand, and the closer you will be to having a clean bill of health. 

And oh, what a fabulous feeling that is!