Friday, September 28, 2012

Magic Wand for Sale - another children's book about Lupus. Hooray!

Last February in Oviedo, Spain, Sweety London Books and Lupus Association in Asturias (note their website is in Spanish) introduced to the press and public the special edition (sponsored by Cajastur Bank) of "Magic Wand for Sale", a children's story about Lupus. Copies of this edition have already been distributed for free in all schools, libraries, and hospitals in Asturias. Here's a synopsis of the story - and the book is available on and on SweetyLondon's website. I haven't had a chance to get a copy yet, but let me know if you do!

Paula spends her afternoons reading the newspaper to her mother, who suffers from Lupus. One day, she finds an ad that says “Magic wand for sale”, and rushes to buy it. When she arrives at the address, she finds a Chinese restaurant. There, an old lady gives her a pair of magic chopsticks and tells her that they will grant her two, and only two, wishes. However, she warns the girl that before making her wishes she will have to master the use of the chopsticks until she is able to catch a butterfly by the wings without hurting it. 

Wednesday, September 26, 2012

Louboutin's very own Pillbag...I'm in such good company!

Looks as though designer Christian Louboutin has entered the Pillbag business. Of course, he's done it with all of the flair and style he's known for. And the interior of the bag is red! His "Pilule" bag retails for $6995.00  As Johnny says, at that price point, it's a tough pill to swallow! 
Christian Louboutin's "version" of the Pillbag. 
Here's how the swanky bag is described: 

Designer Christain Louboutin celebrates 20 years of iconic designs with a capsule collection compiled of favorite pieces from decades past. The "Pilule", constructed in 100% resin, returns with the capsule collection. Produced in very limited quantities, this is your daily dose of Louboutin and is just what the doctor ordered. 

So how about a DOSE of STYLE, at just $24.99 or $39.99, instead? 

Monday, September 24, 2012

The Pillbag's theme song: Born in the USA

Before I started manufacturing Pillbags, I had never really given the phrase "Made in the USA" the attention it deserved. It would have been nice if the clothes, shoes, bags, toys, etc. I like to buy were domestically manufactured. But most of the things I love aren't, so I allowed myself to dismiss the issue. But when the time  came to design, produce, and sell my own product, I actually had a choice to make. And given that opportunity, I decided to manufacture my product in the United States.

I'm not going to lie to you. I've had to work pretty darn hard to keep my production based here in America. It's cheaper (like, A LOT cheaper) to manufacture abroad, and sourcing my material abroad (instead of using American-made fabric as I currently do) would most likely open up a whole new world of options. My margins would be fabulous and the rate at which I could grow would increase dramatically.

So why do I do it? For a ton of reasons - to create jobs here in America, stimulate our economy, avoid overseas counterfeiting, discourage unacceptable working conditions abroad, and ensure that the Pillbags are of the highest and safest quality possible - just to name a few. I feel that at this stage in the Pillbag business, if I can make domestic-manufacturing work, I should.

And I feel that my efforts have paid off, as most of my customers and retailers appreciate and prefer Made in the USA products. I feel good about the bags I’m putting on the shelves, and there's no question they look and feel fabulous.

Plus, I get to talk directly with my manufacturers, rather than going through a middle-man, my bags can feasibly be shipped to me overnight, and the time frame within which my bags are produced from the moment I place my order is "weeks", rather than "months."

So I'm happy here in USA-made territory. And the Pillbags are, too. Let's hope my American manufacturers can keep it that way!

Friday, September 21, 2012

S.L.E. Lupus Foundation in the News!

The S.L.E. Lupus Foundation in NYC got some much deserved media coverage recently - and I thought I'd share the good news. Sounds like they're doing wonderful things for the lupus patients in the Big Apple.

In fact, I'm thrilled to be working with them in the coming months. We're teaming up to do a webinar in January (January 8th at 12:30pm, in fact, so mark your calendars!), and they'll be the featured Pillbag Charity of the Month during  December and January. Read about the good deeds their doing here, or you can check out their website for more information.

Wednesday, September 19, 2012

List-making for lupites - a 3-column approach

I probably mention the phrase “to-do list” on this blog more than I do "lupus". Okay…maybe a close second. But given my type-A personality, and the fact that since lupus, I’ve found it impossible to sort/organize/keep track of life's little details without the help of pen and paper, my to-do lists are big deals. They deserve all the attention they receive, particularly because my ever-demanding list of to-do’s is what most often challenges my lupus. That is, I always want to do everything on the list. I'm compelled to finish what I set out to accomplish. And I find that there are physical consequences (usually unwelcome ones) to marking everything off my list, yet emotional fallout (usually disappointment) to not finishing the things on my list. 

Yes - the limitations of my disease aren’t very accommodating when it comes to to-do list completion. Energy level, stress level, and rest requirements often stand in my way of running around like the Tasmanian Devil in order to achieve 100% completion. (And that's without the swellings, join pain, immobility and the like that I used to have to factor in years ago.) Of course, I’ve come to realize that this restriction is a good thing. Who wants to be side-swiped by Taz anyway? I used to take a good chunk out of anyone who got in my way, but I’m learning to take my lists nice and slow -  “learning” being the operative word here.

So while my expectations for completing tasks have been modified, I still rely heavily on lists- making them both on a daily and weekly basis. I recently revamped the way I write my to-do lists, and I thought my new approach was worthy of sharing. Partly because I just like talking "lists", but mostly because my new way of list-making makes the tasks seem less overwhelming and easier to prioritize for me. My new way to roll has even improved my time management - which is always a challenge for the perfectionist in me, who always wants to take just 15 minutes to finish "x".

So what's my new method? Here it is:

I divide up a small piece of paper into three columns. I prefer not to mark actual columns on the paper, but rather, I fold the paper into thirds lengthwise so the division between columns is subtle, while allowing me to view one column at a time, or all three at the same time, depending on how ambitious I'm feeling.

Across the top of  the columns, I write the following headings (we'll assume that I'm making this list today for the coming week):
First column: Wednesday/Thursday
Second column: By Sunday
Third column: By Next Friday

Then, I jot down my list of things to do under one of the three columns, choosing to do so according to their importance, due date, urgency, etc. It forces me to put some things at the forefront while pushing other things that could either distract me or cause unnecessary pressure to accomplish to next week. What's more, I can easily see if I'm piling on too much on a daily basis, thus encouraging me to sprinkle my less pressing to-do's throughout the week, rather than adding them unnecessarily to an earlier column. It also forces me to re-evaluate what I think is urgent vs. what really IS urgent, and allows me to see when it becomes clear that I'm going to need help getting those urgent items done in a timely fashion.

I've also tried these headings, which have achieved equally as positive results:

First column: To do today...
Second column: Working on...
Third column: To tackle/start/contact soon...

This way - I can easily separate those tasks that will be tackled immediately versus those that are longer-term to-do's. It's reassuring to see some of those big-picture to-do's come off "today's list" and go where they belong. Even though I know some of those biggies can't possibly be completed in a day, having them lurking about on "Today"'s list just doesn't sit well with me. An uncompleted task is an uncompleted task, after all. But this way, I don't feel bad about not getting to it or completing it, because it's not even "scheduled" to have been started yet. Know what I mean?

So there you go - a glimpse into the to-do lists of this high-achieving, accomplished-driven lupite.

And yes, I just marked "Wednesday's post" off my list. I couldn't help myself.

Monday, September 17, 2012

Latest Pillbag chatter: Pain Pathways Fall 2012

Thanks to the folks at Pain Pathways for including Sara Gorman's Pillbags in the 5th Anniversary Edition of their magazine. So happy to be a part of the updates - and the article they did on lupus last year (which was where I made my first appearance in the magazine) was fabulous!

Friday, September 14, 2012

A missed opportunity for a napping opportunity

Much to my dismay, I had to pass on a wonderful networking opportunity this past week. It would have been a fabulous chance to introduce myself to several people in the lupus community that I haven't had the chance to work with before, and I could have reconnected with a few others who are most likely unfamiliar with my pillbag venture, and even possibly my book. Alas, it wasn't meant to be, as the event was scheduled right in the middle of my naptime. I just couldn't see any way around it - so I had to decline.

I was very tempted, don't get me wrong. The event started at 12pm and I was convinced that if we could wrap things up by 2:30 (or at the latest 3pm), I could make it work. But it was scheduled to go even later, and my presence after 3pm would have been mandatory. And after 3pm, I might have physically been there, but mentally, I would have been checked out for sure. Add to that a 30-minute commute home, and my "I can stay until 3pm" declaration really was pushing it to begin with. (Not to mention the fact that professional photographers were scheduled, and pictures of me tired and bleary-eyed really wouldn't have benefited anyone!)

As is often the case after I decline an activity due to napping reasons, I always think long and hard about my rest time. Couldn't I cut it out of my routine? Couldn't I just get another hour or two of sleep at night? Wouldn't it be worth it to just push myself and see how productive I can be? Maybe my body just needs to adjust to being up for a full day, and I'll eventually get used to life with naps. Or maybe, instead of a nap, I can just read, or write, or watch a movie with Deirdre. Maybe it's just quiet time that I need. Yeah...maybe that's the ticket.

And then I pinch myself.

Actually, what happens is that I think so long and hard about this idea of not napping, that the day whizzes by and I find myself in the middle of the afternoon, right at 2pm, which is my witching hour. And the fatigue doesn't lie. As much as I want to hypothesize about not needing a nap, the exhaustion that washes over me every afternoon indicates something very different.

In fact, the very day that I declined the event, I had to delay my nap by about an hour due to Bee and Dee issues. And as I was dragging myself up the stairs at 3pm, weary and tired, I said a little prayer of thanksgiving - 1) for giving me the strength/wherewithal/foresight to decline the networking event, and 2) for offering up an example of just how tired I would have been had I accepted! In simply saying "No", I had sidestepped a disaster waiting to happen. I'm so relieved I don't have to muster up the "game face" to make it through the afternoon. What a waste of one of my nine lives!

So. I will continue to listen to the rest my body demands and respond accordingly. My naps will continue. It was fun to think otherwise, even if just for a few hours!

Wednesday, September 12, 2012

Lupus logistics - making the day work

Per my post two Fridays ago regarding my upcoming, packed fall schedule, I had some noodling to do. And I'm proud to say I noodled, and came out victorious. That is, I was able to objectively and constructively whittle away at my list of to-do's, to make for a more comfortable, do-able fall agenda. Much to my chagrin, I am going to have to pass on one of my trips to Philadelphia and a trip to New York, but I know it's for the best. Johnny, in fact, may make the trip to NYC to do the Pillfold sales call. He's practically a pro at this point - and he has the advantage of having plenty of energy to make one or two extra sales calls while he's in town. If I had made the trip - it would have been nap time by the time I was finished with the one visit. But Johnny? He can go the distance. Guess I should work him to the bone while I can!

As I was going through my list, strategically planning out the day of, the day before, and the day after each event, I realized that the logistics we, as lupites, have to consider might not be apparent to the world around us. I know for a fact that before I was diagnosed, I took for granted the carefree nature with which I undertook activities and endeavors. It takes some serious forethought to carry out even the simplest of plans. Here's an example of how I attack an event:

Take for instance the Rock, Paper, Cocktails event where I'll be setting up shop to sell my Pillbags. The event begins at 6:30pm, and vendors need to be there by 5pm. That means I need to leave by 4:30ish, with plans to pack the car by 4:15pm. That also means that I need to start getting dressed and ready at 3:45pm, which means my nap HAS to start before 2pm and there can't be any interruptions. (Note to self: make it a mandatory movie day for Dee, and schedule Johnny as backup just in case.)

This also means that while Deirdre will be in school from 9-12pm, I'll need to pare down on the running around that Bernie and I do that morning. We'll stick around the house rather than running errands, I'll reschedule the doctor's appointment I currently have, and we'll just ease into the afternoon. Conserving energy is key!

As far as prepping my products, in the good ole days, I wouldn't have carved out time to tag and label my bags; I would have simply relied on the wee hours of the night before to put the finishing touches on the bags. Pre-lupus, it used to be that 10-1am was prime catch up time. But not anymore. I've not only added lupus to the mix, I've also added two kids to the repertoire. And since they don't respect the "no movement before 9am" rule...I can't count on catching up on my morning zzz's. So I'll need to carve out a chunk of time during the weekend prior to make sure I get my stuff prepped.

While it will be a bit of a late night for me, I'll just plan on taking it easy again on Tuesday morning after the event. My mom will be in town, as mentioned in another post, and while my inclination is to make a fabulous baked good for breakfast, and do something fun and exciting for lunch, that won't be happening. Once again, we'll just ease into the morning and afternoon - taking time to recover and tying up loose ends from the evening before. And my mom is very good at "easing", so I think we'll be alright there!

So there you have it - one 3-hour event accounted for. I'm glad that planning session is over!

Friday, September 7, 2012

All-star parenting : it's still possible with lupus

A few weekends ago, I felt like an absolute all-star - an all-star parent, that is. It was a lovely Saturday afternoon, and Johnny had taken Deirdre out for a few hours. I put Bernadette down for a nap, walked into my bedroom for my nap, and promptly fell asleep. Two hours later, I woke up, Bernie still sawing logs in her room, and Johnny and Deirdre still out and about. Thirty-minutes later, Bernie woke up, and I anxiously went in to get her, as I was refreshed and ready to go. I felt like a million dollars - like a normal parent who rests when her kids do and gets up when her kids get up. I felt self-sufficient and capable, and it felt great to be able to take full responsibility for Bernie - rather than to rely on help from a babysitter.

Of course, Johnny was helping out tremendously with Deirdre, so essentially, I did have help. But I couldn't shake the fact that being able to independently care for at least one daughter gave me a boost. A feather in my cap, if you will.

So what does that mean? Does that mean that during the week, when I have a babysitter help with the girls while I finish my nap, that stellar feeling of self-sufficiency is decidedly absent?

Maybe yes, maybe no. But what it does tell me is that I need to remind myself that just because I have to nap, just because I need babysitting help, and just because there are some things I can't do for my kids as well I wish I could  - that doesn't make me any less of a mom. Not even for one moment.

Don't misunderstand me - I'm not consciously thinking these ill thoughts about my abilities to parent. But the fact that I felt so good about single-handedly taking care of Bernie made me realize that perhaps these thoughts do cross my mind, subconsciously.

So I'm nipping them in the bud - and I'm reminding every other mom out there to do the same. Just because we have lupus - with all of the limitations and accommodations that come with it - doesn't for one moment mean we can't be the best moms on the block. Yes, there are sacrifices, and yes, there are days when we do more snuggling than playing, but quality time is quality time. And as referenced on Wednesday, my girls are pretty darn happy just watching their nails change colors. Sounds pretty good to me, too!

Wednesday, September 5, 2012

Lupus may not be smelly, but it still takes some getting used to.

The girls and I have been on a nail polishing frenzy this summer. On several occasions, we've huddle into the bathroom for almost half an hour, picking polish and giggling over our pretty, glistening nails. It's been great fun, and I've loved sharing my mini girl retreats with my lovely little ladies.

Growing up with only a sister, we had spa-retreats galore in my house. We endlessly fussed over our nails, our hair, and our makeup - and never thought twice about the time spent or the smells generated. Granted, I can't smell, but hairspray, nail polish remover, and the like were just necessary primping tools, and I never gave it a second thought.

Of course, my husband is one of five - 1 girl and 4 boys - so you can imagine that spa-retreats weren't as plentiful in the Gorman household. In fact, while we were visiting my in-laws years ago, I came downstairs after painting my nails, and his brothers acted as if the smell of death had just wafted into the room. I know the smell is strong, but I guarantee a houseful of girls wouldn't have reacted like that. I bet an impromptu mani/pedi extravaganza might have even been set in motion!

It just goes to show that if you're not used to something, it can seem completely out of place and downright weird. It can even feel wrong, or, in the case above, smell bad. But, in fact, it's just different.

And that's the way living with lupus has evolved for me. At first, it was really weird to have to actually carve out time in my day for a nap, when I'd never (ever) had to do so in the past. It felt strange to monitor my exertion levels, limit my sun exposure, and track the hours I worked, when I used to be able to just let those things "happen" as necessary. And the first few (hundred) times I had to say, "No", it definitely felt like an out-of-body experience.

But then I started getting used to living with lupus. And I started seeing the benefit of making those lifestyle choices. And then those choices didn't seem out of place at all. In fact, they felt necessary, purposeful, even normal.  Life just started "happening", accommodations and all. I was no longer making choices - just living. And living well, in fact.

It's a great feeling to be this far along in my lupus evolution. But as you know from reading this blog, the challenges continue to surface, and I still get stumped now and again. But the basics, I feel like I have down pat. A good thing, too, because with Bernie and Deirdre already requesting to "do their nails", I think there may be obstacles ahead!

Monday, September 3, 2012

Charity of the Month: September goes to the LFA Indiana Chapter!

It's the start of another month here at Pillbag Central, and that means there's a new charity on the block. For the month of September, the charitable donations from every Pillbag sold goes to, drumroll, please...the Lupus Foundation of America Indiana Chapter. I'm so pleased to feature this chapter, because a) it's my home state, and b) they've been so good to me over the years. They've invited me time and again to speak at their events, and since my family still lives in Indiana, every time I've flown back for an event, it's an excuse to see my parents and extended family. What a treat!

So pick out your pillbag today, place an order, and know that 5% of your purchase is going to a great cause...the LFA chapter in my very own home state of Indiana!

Think your lupus charity would be interested in signing up for the "Charity of the Month" Pillbag program? Shoot me an email at The current year is filled, but next year looks fairly open!