Wednesday, June 26, 2013

Being late equals being anxious. But now I've seen the light...

A few months ago, my sister and I took our annual weekend getaway with our girlfriends. The trip was fabulous, as it always is, but it was the start of the trip that really set the tone for the entire weekend. What did we do differently? We left...drumroll, please...early for our outbound flight. That's right - this chronically late gal gave in to big sister's whim and left extremely early for our flight out of Baltimore, which is an hour away. Our flight left at 10:15am, and my sister requested that we leave the house at 7am. Yikes! Normally, I would have begged and pleaded to leave later. But this time, I was willing to accommodate. I knew we might run into some traffic, but more than that, I just didn't feel like arguing.

And leaving early turned out to be the best decision I've made in a long, long time. As predicted, we ran into traffic. But did we panic? Not all. We had plenty of time. When we arrived at the airport, we ran into a backup in security. But we did we panic? Not for one moment. We still had plenty of time. The lack of anxiety during that travel day was remarkable - and I took notice. It made a difference in my overall demeanor for the rest of the day, and my fatigue level was much less than what I thought it should be. Walking out the door, dressed and ready to go by 7am should have necessitated a late-morning siesta. But I think because I was so relaxed and unstressed, I wasn't depleting my energy reserves unnecessarily. I felt great until my normal nap time that afternoon, and all weekend long.

It's been way too long since I've felt that way on a travel day. Normally, the girls and I are dashing out the door, one shoe on, the other in hand, bags half open, with Johnny ushering us into the car. We race out of our driveway, at least 15 minutes late...usually more. I follow my own advice of packing the night before, and packing the girls two nights before, but when it comes to actually leaving on time, I struggle.

But I never considered the toll that being late has on my health. I know stress contributes to my symptoms, but I hadn't put the anxiousness of being late into the "stress" category before. Having experienced the joys of being punctual, let's hope this weekend with my sister serves as the catalyst that will make me chronically early. Time will tell!

Monday, June 24, 2013

Friday Affair at Hollin Hall - this Friday, June 28th from 12-4pm.

Join me this Friday afternoon in Alexandria, VA for a new brand new event - The Friday Affair at Hollin Hall! I'm excited to help launch this event - the first of its kind in the Mount Vernon area.  Admission is free, and vendors from all over the area will be set up, offering drinks, food, jewelry, and, you guessed it, Pillbags! I'll be there from 12-2pm, and then my trusty side-kick of a husband will take over from 2-4pm, while I return home for a much-anticipated nap. Come by, grab a snack, pick up a bouquet of flowers for the weekend, and check out the unique vendors lining the venue.  Johnny and I hope to see you out there! 

WHERE: Hollin Hall Mansion, 1909 Windmill Lane, Alexandria, VA  22307
WHEN: Friday, June 28th, 12-4pm
WHAT: Friday Afternoon Marketplace




Friday, June 21, 2013

Certain about how good life with lupus can be? Now I am!

The year I was writing my book (2008), I heard a bible verse read at mass, and I immediately knew it would find a place somewhere within the pages of "Despite Lupus". It ended up in Chapter 1, called "Choose Wisely", and here's the excerpt surrounding the verse:
 

Good choices inspire, heal and empower. The specific choices that we will be discussing in this book will change the way you look and feel; the way you view yourself and the world around you. You’ll be a changed person, a different person, a better person. You’ll feel good about who you are and the possibilities before you, allowing you to become a better spouse, parent, child, co-worker, or peer. You’ll reach a new level of understanding and have the opportunity to expand your horizons, growing as an individual. You’ll have found the inner peace that allows you to become the person
you’re truly capable of becoming, and nothing less than the best. Up until now, lupus has squashed all signs of that good life. But when you choose to have hope, you’ll be able to see and believe that life can and will be manageable, fulfilling, and worth living.
 
"Affliction produces endurance, and endurance, proven character,
and proven character, hope, and hope does not disappoint."
Romans 5: 3-5
  
Think back to the hardships you’ve encountered up to this point. Beyond the physical torment caused by joint pain, fevers, swelling, skin rashes, poor circulation, chest pain, headaches, sore throat, swollen glands, photosensitivity, heartburn, mysterious lumps and bruises, dizziness, nausea, infections, kidney, heart and lung problems, you have tolerated enormous mental trauma including: the embarrassment of hair loss, memory problems, and cloudy thinking; the inconsistent and inexplicable nature of your symptoms; the sacrificed activities, the missed little moments and forgone milestones. Consider the effort that lupus has demanded from you to attend to the never-ending doctor’s visits, medical tests, and health questionnaires. (Admit it: those hospital admittance papers and new patient forms can be a major pain, especially when you’re checking off every single box under “Symptoms experienced in the last three months.” You even have to write in a few that they’ve left off the sheet, don’t you?) By anyone’s standards, you’ve done your time with hardship, and you’re an expert at enduring. Now let’s turn to the future. It’s time to strive for more. It’s time to strive to be well.

***

This past Sunday, I heard the verse read again, after almost 5 years. I instantly recognized it, of course, but just as quickly, I realized how much I had changed since I heard it last.

Back then, the physical pain and emotional heartache of lupus was fresh in my mind, thus the concept of "affliction" was all too real. I had definitely "endured" my fair share of trauma, and I remember thinking how accurately the verse was structured, with each part bleeding and building into the next. I remember thinking the phrase "proven character" was such a nice way of describing the maturity I'd witnessed in myself - merely a by-product of all that I'd experienced at a young age. Lastly, I remember feeling hopeful -  sure that life with lupus would continue to improve. I was optimistic about the future - but looking back, I now know that I had no idea how good it could be.  Back then, I was confident, but not certain. I was hopeful, but perhaps not convinced. 

Today - I know that I should expect life to be good. There's nothing to fear, as long as I keep up my end of the bargain of trying to live well, despite lupus. (See Chapters 2-8 of D.L. for details!)  I now have evidence that my life with lupus can be one worth living, and I have faith that it will continue to be so. That feeling of certainty is a wonderful, wonderful thing.  

 

 
 


Wednesday, June 19, 2013

The origin of the Pillbags

In the beginning, there was a Pillbox. A small, dainty, Parisian-inspired metal pillbox, just big enough for my mid-day doses of medication.

One of my best friends from college sent it to me upon hearing that I'd been diagnosed with lupus more than 12 years ago. It was one of the only things that kept me going during those first few months with the disease. Every morning before work, I'd count out the pills I needed to take with me - to be administered at 12 noon. This cherished little box has seen many pills over the years - including but not limited to plenty of Prednisone, Cellcept, and Plaquenil - all of which have worked in their own mysterious ways over the years.

I remember grasping onto this box, almost with a sense of pride. In the face of a disease that was robbing me of my vitality and mobility, this sweet little box somehow made me feel dignified, almost sophisticated. At the time, it was shiny and new, and the emblem on the top reminded me of my care-free days living in France during a semester in college.

Most importantly, carrying this pillbox made me feel loved. My good friend had sent it as a gesture of concern - for me, my health, and my well being. Upon its arrival, it appeared empty, but I knew it was filled with big doses of compassion, hopefulness, and love - just what I needed at the time.

Over the years, I've thought a lot about what this Pillbox meant to me, and how significant it was to have something that I considered lovely in my possession. As ugly as lupus made me feel inside and out, my beautiful Parisian pillbox did everything in its power to combat that.

And that is my hope with the Pillbags. Despite the dozens of pills they're meant to carry, despite all of the symptoms and side-effects, complications and limitations that may accompany its use, the bright, cheery fabrics, and shiny, chic hardware are meant to be a bright spot in the daily routines of the millions of medicine-dependent people in the world today.

A friend of mine framed it perfectly. I was telling him that I was stumped when a customer recently said to me, "This Pillbag would be perfect for my mother-in-law, but I guess it's not very fun to get her something for her pills." And my friend quipped back, "Well, isn't that the point? Taking something that's not much fun at all, and turning it into something that is."





Monday, June 17, 2013

New Bookseller and a Pillbag Retailer - Davis-Kidd Booksellers and Decorium Gift and Home

We've been busy at Gorman Headquarters - setting up new retailers for the both the book and Pillbags. I have several new stores with whom I'm working, and I'll highlight two this week and another two next week. Who knows? Maybe I'll have another pair by the following week!

First, the new bookseller: I'm pleased to announce that David-Kidd Booksellers at Laurelwood in Memphis, Tennessee has found shelf space for Despite Lupus. Davis-Kidd kindly opened their doors to The Lupus Endeavor video that we shot back in February. And subsequently, they were interested in carrying the book. Hooray!

 Here's a link to the video - scroll down to the third video for the one featuring the book signing at Davis-Kidd. Chris, the videographer, got some great shots of the store!


And I'm thrilled that the Pillbags have found a beautiful new home at one of my favorite stores in the whole world - Decorium Gift and Home in Old Town, Alexandria, VA. Jeff Albert, owner of Decorium, and David Chenault, lead interior designer, have truly embraced my Pillbag venture. They've featured the Pillbags in their weekly e-newsletter, and are spreading word of the Pillbags to clients everywhere. And the Pillbags are flying off the shelves! Hurry in to Decorium today to snap up one of the newest Pink Lady designs, or grab a classic navy Pillbag Bordeaux. And be sure to tell them I sent you!

Wednesday, June 12, 2013

Choosing Wisely: Putting my health above an agenda...again.

Per my post at the end of May, I thought I owed you a follow up to my Lupus Awareness Month to-do's. Why not take a moment to publicly celebrate a couple of  "cross-offs"?

1) That chest X-ray that I needed? DONE!

I found a radiology site within 2 miles of my house, confirmed they take my insurance, called for an appointment (only to learn they take walk-ins), and took an afternoon last week when my babysitter was working to get it done. In and out in less than an hour - so it wasn't too bad. But I'm certainly going to try to keep that nasty pleural effusion from ever coming back. Sitting in the waiting area, registering for the test, explaining to the admittance person why I was there in the first place - it took me back to when those test were all too regular. It made me feel sicker than I was...and no one needs that!

2) Second on my list - box up winter clothes for the move. ALMOST DONE!

I've gathered the clothes, mittens, scarves and boots - now I just have to grab a couple of empty boxes from a collection I started a month ago, toss in, and tape up. One down - 50 boxes to go.

3) Lastly - arrange for help. DONE!

As the world's greatest and most meticulous packer, my dad will be a godsend. He's arriving this weekend, and will have our whole place packed in no time. AND he'll have a smile on his face the whole time. But I'm going to have a hard time convincing him not to pack up everything. We have a few more weeks left, and I know he's going to want to finish the job while he's here. Don't pack baby Dar Dar, Papa!!

Now - while those three tasks are well on their way to being history, a new to-do has been added, and it's one with which I'm struggling. My task? To "Choose Wisely" in regard to our move date. Practically speaking, I know what I need to do. Emotionally, I'm resisting!

Here's the situation: our renovation is scheduled for Substantial Completion on July 7th. Hooray!  That means that by that date, our house will be ready and we can move back in. However, the contractor contractually has two weeks from that date to get to Final Completion, which will include fixing/finishing all of the little stuff that we find isn't up to snuff upon our walk through on July 7th. (This article addresses this distinction well.)

I just discovered that this two week period is a busy one. I thought we'd be able to move in on, say, July 8th, and the construction guys would casually be in and out of the house, working just a few hours a day. Turns out, that's not the case at all. They have every intention of coming to work at 7am and working until 3 or 4pm everyday during those two weeks. Not ideal living conditions for the Gormans!

But oh, the temptation to move in when I thought we could! My pride and the desire to get back into our house are really clouding my judgement. Add to that my penchant for schedules and order, and I've all but scheduled the moving company. BUT - I know how much I like my sleep. I know how mad I would be that first day, waking up at 7am, not getting a good nap, and having the girls experience the same. I'm not going to do it. But it IS tempting.

So here's to putting the health and comfort of me and my family at the forefront. I've had to do it plenty of times before with lupus - putting pregnancy, work, vacation, or life in general on hold while I waited patiently for my body to catch up.

Maybe I can just bury my face in the sand like Darwin and wake up at the end of July!!

Monday, June 10, 2013

Summer Pillbag Sale: Save 15% and tote your pills in style!

The summer is heating up, and vacations are right around the corner. How about toting your medications in style this time? No plastic allowed!


Now through Sunday, July 16th, take 15% off your Pillbag purchase at www.pillfold.com. Choose from one of our newest Pink Lady Pillfolds, like the Winchester Pillfold shown here.



Or cinch up in style with a best-selling Trocadero Pillpouch.



Use the discount code "SUMMERVACATION" during checkout. Type as one word, and you're sure to save!


Friday, June 7, 2013

39 big ones logged for this lupite

Well, I made it. I'm 39 today. Woohoo!

I certainly have a lot to celebrate and be thankful for - a wonderful family, good health, a thriving business that I love (my career coach sister tells me the "love" part is important), and a fabulous agenda for the future. I mean, look at these two - who wouldn't want to wake up to these two smiling faces for years to come?



While it's been a long time since I've thought about lupus and my longevity, I had a chance to do so when I came across a biography about Flannery O'Conner, American novelist and short story writer. She, too, had lupus, but grew up in a time in which the understanding and treatment of the disease wasn't at all what it is today.  In fact, born in 1925, she died just 39 short years later, in 1964, from complications of lupus. So while it may seem a bit macabre to mention her today, on my 39th birthday, I want to celebrate the fact that today, I'm alive and well, and thriving in the face of lupus.  There's nothing more I could ask for than that. Ten years ago, I wasn't sure I was going to make it to my 30th birthday. Today, I have every intention of living to my 100th!

Wednesday, June 5, 2013

Architect knows best

After working together for almost two years, my architect thinks he deserves his own label on my blog. Granted, we love our architect, we don't make a move without his approval, and hiring him was the best decision we've made regarding our house project. But he's just going to have to accept that the "Renovation" label encompasses him, too. (Sorry, Steven!)

He did, however, earn himself a post today. He has to share the glory with a few other professionals with whom I've been working lately...but on more than one occasion, he's steered us in the right direction with the following advice:

Take a day and think about it.

When we were contemplating the contractor to use for our renovation, Johnny and I weighed the options, came to a decision, and presented Steven with our choice. He replied, "Great. Now take a day and think about it." And you know what? It was worth it. While we were 90% sure we'd made the right choice, allowing our decision to sit for 24 hours made us absolutely, positively sure. And that's exactly the feeling you want when you're undertaking a major project like we were.

Most recently, we were deciding on the exterior colors for the house. We finally (and I mean, finally!) came up with the color scheme of our liking, and he said, "Okay. Now think about it for a day, and let me know your final selections tomorrow." And again, it was a good move. We had a night, without any pressure, to just let our choices be, and by the next day, we were 100% sure that we'd picked the right colors. Here they are, from left to right:

Benjamin Moore Enchanted Forest (lower 1/2 of house)
Benjamin Moore Dakota Shadow (trim on lower half of house)
Benjamin Moore Davenport Tan (trim on top half of house, which is covered in wood cedar shingles, also seen below)



 





Oer the past year, I've received the exact same "Wait a day" advice from my patent attorney regarding a decision I had to make on a trademark filing, and from my printer regarding the design for my Pillbag hangtags. Am I the only one out of the loop on this one?

Even so, it works. I plan on continuing to use it in future decision-making, too. In regard to lupus, it totally applies.

Considering a new medication, but aren't sure whether to actually take the plunge?
Make your decision, and then take a day and think about it.

Thinking about getting a second opinion, but not convinced that you should "cheat" on your doctor?
Make your choice, and then take a day and think about it.

Contemplating a change at work, an alteration in lifestyle, or a major shift in the way you do something, in order to accommodate your disease?
Decide on what to do, and then take a day and think about it.

I bet you'll find clarity that you didn't even know you needed in those 24 hours.

In an upcoming post, I'll pay tribute to my architect once again, and share with you his sound advice on the actual mechanics of decision-making. Oh, he's just full of handy information!


 
  
 

Monday, June 3, 2013

Pillbag Charity of the Summer - The Lupus Endeavor


I'm happy to announce that the Pillbag "Charity of the Month" Program has taken on a new 3-month twist for the summer. Instead of just one month, during all three months of summer (June, July and August), 5% of every Pillbag sold will go to The Lupus Endeavor, whose fundraising efforts go directly to the Johns Hopkins Lupus Center in Baltimore, MD. They're making tremendous strides in research and the treatment of lupus. I've heard Dr. Michelle Petri, renowned lupologist, Director of the Hopkins Lupus Cohort, and Co-Director of the Hopkins Lupus Pregnancy Center, speak at many a Lupus event...and I'm positive she's keeping them on task! 

I'm thrilled to be teaming up with such a worthwhile organization, and it appears that Jessica Mathews, TLE's President and Founder is, too. Here's her blog post announcing the fundraiser - thanks for the kind words, Jessica!

I've just added a page on the Pillbag website detailing the lupus organizations that have benefited from the purchases you've made from Sara Gorman's Pillbags and Despite Lupus. Thousands of dollars have been donated thus far. Let's keep up the trend - why not choose to tote your pills in style while supporting the cause with a Pillbag today!