Friday, November 30, 2012

Outta time...but at least the Pillbags are tagged and ready!

Once again, I found myself with too little time last night to put together a proper post for today. I had a Pillbag show to prepare for today, and I just couldn't put it off another night. If you have a chance to come by St. Aidan's in Alexandria today or tomorrow, you'll be able to see the fruits of my labor. Click here for more info!

And re: my posts - never you worry. I have plenty of blog posts brewing in this little lupus head of mine. Topics like travel insurance (which I never get but probably should), indestructible manicures (which I just discovered), and the trial and error nature of lupus (don't we know it!) are sure to make an appearance in the coming week or two. Throw in a Raynaud's incident, a hiccup or two with the girls, and a trip to the doctor with...drumroll, please...my dad, you have a lot to look forward to!

Enjoy the weekend - and be sure to take advantage of the 20% off Pillbag Sale ending today!

(And one last day to donate to the Indiana Chapter of the Lupus Foundation, November's Charity of the Month!)


Wednesday, November 28, 2012

Cruel Mystery Tour - LFA getting lupus some serious attention!

Looks like the Lupus Foundation of America is stepping it up when it comes to lupus awareness!



The LFA has just launched a national program that will literally tour the country, in a 45 foot bus covered in lupus facts, featuring eight interactive exhibits and displays where visitors can experience what it is like to face lupus. This bus is sure to provide the much needed lupus information and education to people around the nation. Here's a description of what they're doing: 

"The Help Us Solve the Cruel MysteryNational Tour is a national education and awareness program launched by the Lupus Foundation of America to address this urgent national public health issue. This first-of-its-kind program includes a tour bus with interactive exhibits to help you learn about lupus through the experiences of people who live with lupus. It also includes an education program for people with lupus and their families, and a state-of-the-science continuing medical education (CME) program for healthcare professionals. Register for an event and  click here to find a city near you! "

Here's a sample agenda from the LFA's FREE Lupus: Learning and Living™ educational program. Looks like a fabulous opportunity to learn more about lupus!

Agenda

Registration
12:30 pm - 1 pm
Welcome and Introduction
1 pm - 1:05 pm
Advances in Our Understanding of Lupus: What we now know
1:05 pm - 1:45 pm
Pathogenesis, genetics
Outcomes: Bones, heart, cancer featured
State of Lupus Treatment and Care
1:45 pm - 2:30 pm
Advances in therapeutics
On the horizon: lupus treatment and clinical trials participation
Break – light refreshments 
2:30 pm - 2:45 pm
Living and Coping Strategies
2:45 pm - 3:30 pm
Q and A
3:30 pm - 4:00 pm


Tuesday, November 27, 2012

20% PILLBAG savings extended through the end of November!

Now you can use discount code "SANTA" through November 30th, and still save 20% on your Pillbag purchase! Stock up on your favorite Pillbag print today - only one Cambridge Pillfold left in stock. Order today! 

Monday, November 26, 2012

Good, level-headed decisions does not a tired lupite make...usually!

Last week, I promised you details of my recent trip to California, but the holiday festivities got in the way. But now I'm ready to talk turkey (I couldn't resist), so here goes:

Our five-day trip to the west coast was fabulously uneventful. The girls were great, the wedding we attended was a blast, and the 3-hour time change didn't make life too difficult. When we travel through several time zones, we typically stay on our time (e.g. east coast time), particularly when the trip is as short as it was. We managed to inch our way to about a 2-hour time difference by day five, but it's actually worked in our favor upon our return home. We're getting a little extra rest in the morning...which is always a plus!

Since we were getting up so early California-time, we found ourselves quite productive in the morning. We figured as long as it "felt" like 8:30 am, it didn't really matter what the clock said (e.g.,5:30 am). Of course, because we were up that early, by 11am, we were ready for afternoon naps. We pushed it an hour or two here and there, but the girls and I managed to do pretty well.

I did have a "despite lupus" moment one of our last mornings there, however - one with which I'm sure you can identify. We'd been up since before 6 am, and had plans to meet up with family around 11 am, with a wedding ceremony scheduled for 3 pm that afternoon. Johnny and I responsibly decided that Bernadette and I would stay behind from the family get-together so that she and I could get in a nap between 12-2 pm, and be ready to go for the afternoon wedding. We would drop Johnny and Deirdre off at the family meet-up around 11 am, and then we'd have the car to run errands until 12 pm. Sounded good to me, because I could think of a dozen things in which to fill the time! I needed shoes for an upcoming wedding, a fancy wrap for another occasion, snacks for the girls for the flight home the next day, etc. etc. I had that hour planned out to the minute, and I was so excited about the opportunity to get a few things accomplished. Or so I thought.

By the time we were ready to walk out the door (just 15-20 minutes later), I was starting to lose steam. Fatigue was setting in (as it always does about 5-6 hours after I wake), and while I tried to deny it, the thought of driving a car, in areas I wasn't familiar, to then go shopping, seemed like a really bad idea. If I was tired now, in what condition would I be in 30 minutes? How about after an hour, when Bernie and I would both be overdue for a nap?

But those errands! How desperately I wanted to get a little shopping done. It would make life so much easier once we returned home. In fact, I thought of a handful of really good reasons why I should just push through...but as I tried to justify why I should go, it became more difficult to reason the whole thing out. That fatigue just kept creeping into the picture.

And that made me mad. I was mad that my body couldn't handle it. I was mad that I couldn't go shopping. I was mad that I couldn't get anything "accomplished." I was mad that lupus made me tired. I was mad that I had to make sacrifices. And I was mad because I was getting tired.

Which is the whole point, right?

(Note that I only get mad (or cry) when I'm tired - it's like an instant give-away, and for once, I caught my own "tell". Johnny could see it coming a mile away, of course, but he was very patient, and let me come to the decision on my own.)

Because I knew the right thing to do was to stay put, and because I knew I would put my health and possibly my daughter's safety in danger if I didn't, I tossed the keys to Johnny. They could take the car on their own, and Bernie and I would resign ourselves to walking across the street to get lunch at the local grocery store. Big whoop.

But you know what? Bernie and I had a great time at the local grocery store. We were able to buy snacks for the return flight (crossing one thing off the list!), enjoyed a picnic lunch in our hotel room, courtesy of the grocery deli, and took two gloriously long two-hour naps, which paved the way for a great evening out that night after the wedding. It also allowed for a very smooth flight home the next day. Because I hadn't pushed it the day before, I wasn't working at a deficit the following day.

And I'm no longer mad. Particularly because I'm no longer tired!

Thursday, November 22, 2012

Sara Gorman's Pillbags - BLACK FRIDAY THROUGH CYBER MONDAY - 20% off. Use discount code "SANTA" during checkout!!

Check out our two newest Pillbag designs, the Trocadero™ and the Brighton™. Sophisticated and stylish, the black and creamy white fabrics are sure to make your Christmas List! 


Pillfold Trocadero™

Pillpouch Trocadero™
Pillfold Brighton™


Pillpouch Brighton™

Wednesday, November 21, 2012

Recurring Infection? Lupus could be playing a role...

A girlfriend from my lupus support group passed on this article from the Washington Post - which apparently made their "Medical Mystery" column this week. Lupus is THE medical mystery of the century, so it's no wonder that nasty little disease was involved. Here's the article, and a snippet to get you going:

***
Medical Mystery: A woman endures multiple surgeries when a wound will not heal
The question reflected Kristrinah Ayala’s increasing desperation, and her attempt to make sense of her 18-month ordeal. “I’m a therapist,” she told the Washington rheumatologist who began treating her in the fall of 2011. “Is it possible that this problem is all in my head?”
Ayala’s anguish and the nature of her question took Victoria Shanmugam, an assistant professor at Georgetown University Medical Center, aback.
Shanmugam says she quickly reassured Ayala that the painful, five-inch-long open wound at the back of her knee was not a product of her psyche but the manifestation of a serious physical problem that a team of specialists at Georgetown were struggling to diagnose.
After 10 failed surgeries, no one knew whether Ayala’s wound, which had refused to heal for more than a year, was caused by her lupus — an underlying autoimmune disorder that can impede healing — or an infection. And if it was an infection, why had multiple tests failed to identify a bacterial culprit?
“It felt like a nightmare that I couldn’t wake up from,” Ayala, 57, recalled. “That wound was just sapping my existence.”

***
Some of that sounds pretty familiar, huh? Be sure to read the entire article here, and thanks for sharing, Hannah! 

Monday, November 19, 2012

Flying a significant distance? Consider all the options for getting your rest!

We had a great time in California this past weekend (traveling for five days total), and just returned late last night. Since I was tuckered out after the long flight home, I took a pass on writing an elaborate post for today. I figured the best thing to do was to catch up on some sleep and fill you in on the trip on Wednesday. In the meantime, I'll share with you one little snippet from our trip, because it was a bit of a lupus coup, in fact!

Typically, when we travel as a family, Johnny, the girls and I always try to sit together on flights, no matter where we go. Nine times out of ten, we're able to book it as such, but on the flight back from California yesterday, Johnny was inadvertently switched to a lone seat about 20 rows up from the girls and me. At first, we agreed that that just wouldn't do. We would try negotiating with the passenger sitting next to me, with plans to ask him to switch with Johnny. But as we were making our way down the jetway, I started thinking. What if we actually kept that lone seat? What if I took the first shift with the ladies, and then a few hours in, when I was ready for a nap, we switched spots? Could I actually get some quiet time away from the gals, which would enable me to fit in my afternoon nap? Wouldn't Johnny enjoy that scenario, too?  I looked at Johnny, and I could tell he was thinking the same thing. In the end, we kept the lone seat (in Economy Plus, no less!), and sure enough - Johnny got a little nap, and so did I. Of course, the girls were wide awake the entire flight, but they couldn't have been better travelers. No complaints at all - and a strategic last minute move on our part made it that much better!

Friday, November 16, 2012

Changing strategies - it's hard, but somebody has to do it.

One of the first things I do in the morning, just like millions of other people in the world, is check my email. I do this morning ritual via my smart phone now, which I keep in the kitchen, charging overnight. I wake up (usually because at the other end of the house, a little girl is calling "Mommy, Mommy!" ever so sweetly), put in my contacts, brush my teeth, go get the girls, and then check my email. It's become my primary mode of communication - at least between the family, friends, customers, business associates, and hundreds of other people I deal with who don't live within my zip code. In fact, email has become an integral part of my relationship with almost everyone I interact with - our architect, the contractor, Deirdre's teacher, our babysitters, my bank, our credit card companies, etc, etc - and I assumed (incorrectly) that my manufacturer would be just as reliant on email as the rest of the world.

But it turns out, he's not. Sending an email to my account guy is one of the most ineffective things I could do during the course of any given day. I almost never, ever get a response, and no matter how explicit my emails are, action is almost never taken. It doesn't depend on whether my emails are short or long, to the point or long and explicit, funny or not funny - my emails to him go nowhere. Maybe my account guy's inbox is bombarded with messages, maybe my messages go into a spam folder, or perhaps he sees my email address pop up and simply hits "delete". Or maybe I've been out of the working world long enough that we've boomeranged back to the point where the phone is better than email.

Because in order to get anything accomplished - whether it's a shipment of bags, a change to my bill, or an inventory update - I almost always have to put in a phone call. And when I do, I almost always get what I need. I must, right? Otherwise, I'd be out of business.

But this is somewhat bothersome to me. Finding a quiet moment to make a business phone call in a household with a two year old, a four year old, a husband who works out of the house, and a dog can be a challenge. Not to mention losing all the conveniences of being able to send an email from anywhere while doing just about anything, anytime.

So while I want email to be my preferred method of communication with said manufacturer, it simply isn't. If an email yields nothing, but a phone call does, I need to change my strategy.

But how hard is that to do sometimes?

Whether it's changing the way I deal with my manufacturer, the way I adjust to life with lupus, or the way I adapt to just about anything -   I almost always bang my head against the wall way too many times before I give in. All too often, I think of changing the way I do things as a resignation, as if I'm throwing in the towel by adapting. But that's simply not true - particularly when that change yields a more effective use of my time, a more efficient use of my energy, or an improved sense of emotional or physical well being. Bottom line - the sooner we adjust, the sooner we can get on with living well.

I pick up the phone, I get my manufacturing needs addressed.
I take a nap, I sidestep an entire afternoon of debilitating fatigue.
I go to bed early, I can function normally the next day.
I hire a babysitter to make sure I don't overdo, I keep my lupus symptoms at a minimum, making me a better mom, wife, and lupite.

Isn't about time you stopped banging your head against the wall, too?








Wednesday, November 14, 2012

Adjusting to life in the rental...


Adjustments. Life is just one big series of adjustments, don’t you think? Thankfully, our latest adjustment, moving into a rental house so that our renovation can begin, has been pretty darn easy. The girls have been troopers – just like I thought they’d be – embracing our new digs and enjoying the newness of our little adventure. And the rental house is just perfect for what we need. Quite a bit smaller than our other house, but it will suffice for the six or seven months we’ll be living here. Because it is smaller, there have been a few changes to our routine that I’ve had to make…but everyday, the changes get easier to negotiate.  

1) A New Napping spot – Johnny’s home office (which he works out of full-time) now occupies half of our master bedroom. Sure, it’s not ideal, but we’re lucky that the room is big enough to accommodate what we needed to bring, and Johnny’s a good sport about making it work. The only issue that arises is that of my afternoon nap between 2-4pm. I have to take it, but Johnny still has to work, so napping in my bed isn’t an option most afternoons. I anticipated that this might happen before we moved, so instead of bringing Deirdre’s loft bed to the rental, we brought a trundle day bed that has two mattresses. She thinks her new “bed away from home” is super cool, and since it has the second mattress, I use it during my nap. (Dee doesn’t nap  - she just has quiet time – so her quiet time is now in the family room.)  The first day, I thought it was too complicated to pull out the second mattress, so I just slept on Dee’s bed. The second day, I pulled out the second bed, but didn’t use a pillow or sheets. By day three, I had a spare pillow stashed in Dee’s closet, an extra set of sheets in her dresser, and a little sweater if  I get cold. It works perfectly, and Darwin and I are consistently enjoying our new napping get-away.

2) No Kitchen after Dark – The kitchen is in close proximity to the girls' bedrooms, so close, in fact, that after the girls go to bed, working in the kitchen is pretty much off limits. What does this mean? It means we have to do our after-dinner dishes “after dinner”, instead of our typical 2 hours later. And my semi-nightly baking has to be done before they go to bed, too. I used to look forward to an hour or so after they went to bed when I could relax and bake a batch of something sweet. But it just isn’t worth the risk of waking them up. While it's been challenging to shift my baking time, it's actually been a good thing. Since I can no longer fuss about in the kitchen after 8pm, it paves the way for an on-time bedtime!

3) Bruises – This is actually what got me to thinking about writing this post in the first place! Since we’ve moved, I have managed to rack up bruises everywhere. With a new floor plan and a new configuration of furniture to maneuver around, there are plenty of opportunities for clumsy old me to bump into things and bruise myself. And you know it doesn’t take much for this thinned-skin lupite to bruise. Thankfully, I'm starting to learn where all of the new corners are, and the bruises are beginning to fade. Just in time for our trip to California!

4) Wall oven – Oh, how heavenly this has been. The rental kitchen has a wall oven that sits right at eye level, and reminds me why I insisted on making room for a double wall oven in my to-be-renovated kitchen. It is super convenient - checking on food requires a lot less effort, and taking dishes in and out is a cinch compared to a lower oven. I'm so glad I get a trial run and am thoroughly convinced!

I’m sure there will be more adjustments to come, but for now, I’m quite pleased with the way we’re settling in. Bumps, bruises and all!

Monday, November 12, 2012

It's back to the Hoosier state for Pillbag donations!

The month of November is moving right along, and so are the charitable donations for the Pillbags. Note that for every Pillbag sold this month, 5% of the sale will go back to my home state of Indiana and the Lupus Foundation of America Indiana Chapter. Be sure to stock up on your Pillbags today!


Next Pillbag Sighting - This Saturday in Alexandria!

The Pillbags will make their next appearance this coming weekend at the St. Mary's School Annual Christmas Bazaar in Alexandria, VA. Last year was the first year I participated in the event, and wow! I was so impressed with the event from start to finish. Great vendors, great food, and a great turnout. I'm looking forward to another great weekend.

Details are below - and while I wish I could say I'll "see you there", I'm going to have to pass the baton to my oh-so-wonderful sister who has volunteered to work my table while I'm out of town for a wedding. So be sure to stop by and say hello to my sis - she'll be so happy you did!


St. Mary’s School Annual Christmas Bazaar Set for Nov. 16 & 17


And if you're really looking for an enjoyable evening out, be sure to get tickets for Friday evening's Quite the Stir! Preview Party on Friday, November 16, from 7PM -9 PM. You'll get to see all of the great stuff first!

Friday, November 9, 2012

Z Chemists and Zitomer in NYC + Country Classics in IL = A Pillbag Retailer near you!

While October came and went faster than I can say, "October", last month proved to be a great one for  adding Pillbag retailers. We've added three new stores to the list, one in Illinois and two more in New York, and I expect to add a few more within the next few weeks. Hooray!

Here are the three new Pillbag retailers. Be sure to stop by and see the new Fall designs they're carrying, coming to www.pillfold.com soon!



Zitomer Pharmacy


969 Madison Avenue  

New York, NY 10021

Phone (212) 737-5560

***






40 West 57th Street
New York, NY 10019-4001

Phone (212) 956.6000      

***









Shop Country Classics

1405 Waukegan Rd.

Glenview, IL 60025
Phone: (847) 998-4644      


Be sure to check out this great article about Shop Country Classics here. Don't let the name fool you - I'm glad I didn't! 

Thursday, November 8, 2012

Holiday Bazaar Season is upon us...

and so is the opportunity to snag a Pillbag for that perfect someone this Christmas season!

Wouldn't you want to get a swanky little bag (that's functional, too!) in your stocking this year? The perfect gift for Mom/Aunt/Mom-in-law, or for that hard-to-buy-for lovely lady in your life. The new Fall designs, to be unveiled this weekend, are sure to fit the bill!



 Look for my bright pink tablecloth among the sea of great vendors. I'll look forward to seeing you there!

Wednesday, November 7, 2012

Sun exposure and lupus - uncovering the "why?"


While we know many lupus patients are sensitive to the sun, recent discoveries are making it possible to  understand exactly why sunlight causes irritation. According to the Science Daily: 

"The biological mechanism of sunburn -- the reddish, painful, protective immune response from ultraviolet (UV) radiation -- is a consequence of RNA damage to skin cells, report researchers at the University of California, San Diego School of Medicine and elsewhere in the Advance Online Publication of Nature MedicineThe findings open the way to perhaps eventually blocking the inflammatory process, the scientists said, and have implications for a range of medical conditions and treatments." 


Translated, this means that researches found that UV radiation can impact RNA (regulatory molecules within the cell), which is what triggers inflammation, which can contribute to a lupus flare. Per the article, "Some people have excess sensitivity to UV light, patients with lupus, for example. We are exploring if we can help them by blocking the pathway we discovered." Wouldn't that be fabulous? 

The Lupus Foundation does a great job of covering photosensitivity here, and there's a good article about the RNA breakthroughs here, which is where the selections above was taken. 

Monday, November 5, 2012

Order outside, mess inside. Yup...that sounds like lupus!

Moving is a bear. There's no other way to say it. (Well, there is, but this is a family-friendly blog, so I'm going to just keep it at that.) Packing up practically everything we own, putting half of it in storage, moving the remaining stuff to a rental house two miles down the road, and unpacking it in a space half the size was a challenge. But thankfully, the worst is behinds us. We're beginning to see the light (or should I say the floor) in our new place. And we're all safe, and sound...and happy.

The move gave me the opportunity to become intimately familiar with all the stuff we've collected over the years. Emptying every closet, drawer, and cabinet provided me the chance to personally reacquaint myself with our belongings. Boy - do we have a lot of stuff! And we're not even pack rats. In fact, we purge frequently, had nothing in the attic or crawl space, have no basement, and some of our closets weren't being used. So in reality, we didn't have ALL that much stuff. But having just packed it all up and moved it, we had plenty.

And I realized as I rifled through closets and dug into drawers, that on the outside, it appeared that my house was pretty darn organized. Johnny and I both prefer order to chaos, so we like to keep things tidy - a place for everything and everything in its place, if you will. But upon closer inspection, I realized those so-called "places" weren't quite as neat and tidy as they could have been. I've always prided myself in not having a junk drawer (just my own personal issue...), but as I went through my house collecting, sorting, and packing, it seems that my "junk" was just sprinkled throughout the house.

Closets were in disarray, drawers were a mishmash of items, and in every room, there was a cabinet of something that didn't belong there. The rooms weren't outwardly messy - to the contrary, most of them looked neat as a pin. But peel back the buttoned-up exterior, and there, you'll find the mess.

I suppose that's the way many of us function, particularly those of us with lupus when we're in a flare. We take great pains to make it seem like we have it together on the outside, but on the inside, there's a heap of a mess going on. Joint pain, organ involvement, pain, suffering - the list of invisible symptoms goes on for miles. I specifically remember looking in the mirror one day, years ago, and thinking that my insides could be falling out, but as long as I looked good, I was going to keep plugging along.

What a messy way to make a go of it! I vowed to do away with this mentality - and I'm so glad I did. Now, reports of protein in my urine or skewed complement levels get just as much attention from me as do hair loss or skin rashes. My doctor's always been attuned to these things, but I learned the hard way that I need to pay attention to these things, too. I can't ignore them, and they're not just going to go away, simply because I can't see them. Living well means being well inside and out...emotionally and physically...behind closed doors and out in the open.

So as my house renovation gets underway, I'm going to try and apply the same rules. I'll do my best to keep myself organized and in check, inside and out. Yes, I'm going to take advantage of the fact that in a smaller house, we need less and have less to keep track of (a quarter of the toys...yes!!!!) But I'm also going to keep close tabs on my levels of anxiety and frustration, which are surely going to mount as the process moves forward. Just because my handy-dandy renovation notebook looks organized, doesn't mean its creator isn't feeling a little scattered with all of the decisions being made.

Look for more posts to come regarding our home away from home...and life with lupus during a renovation. I'm sure the challenges await me!


Thursday, November 1, 2012

25th Annual Maryland Lupus Summit – Saturday, 11/3 – see you there!


Want a chance to bone up on lupus and snag a Pillbag for you or someone you love? Join me this Saturday at LFA’s Annual Maryland Lupus Summit in Baltimore for a great day of lupus education. Don’t miss this opportunity to hear Dr. Michelle Petri, one of the best lupologists in the world, along with a slew of other great lupus educators.

You can also get some early Christmas shopping done while you’re at it – save on shipping, get a Pillfold at a special “show price”, and cross another thing off your list!

Details are below – see you there!     

WHAT: 25th Annual Maryland Lupus Summit
WHERE: Turner Auditorium, Johns Hopkins Medical Campus,
720 Rutland Avenue Baltimore, MD.
WHEN: Saturday, November 3rd, 9am – 3:30pm

Note: Parking available at the Washington Garage located at 701 N. Washington St. A bus will be available for transportation between the auditorium and garage.  The Johns Hopkins Metro center stop and commuter bus are also accessible.