Monday, April 22, 2013

A little lupus perspective: life isn't all that bad

Last week was a tough one. Everything seemed to go wrong. Nothing went my way. And I was mad about it. Let me set the stage for my little pity party:

On the Homefront: The washer in our rental house went kaput a week earlier. We replaced it temporarily with our magnificent 2 1/2 year old washer which was sitting in storage. The water filter cracked somewhere along the way (in transit or when the guy was hooking up the valves), and it fried the motherboard, rendering it financially irreparable. Thus, we've been without a washing machine for over two weeks, AND we ruined our fabulous washer. Ugh.

In Renovation news: I learned that our cabinets are running behind schedule, potentially pushing our move-in date by a month, our choices of specialty paint colors are going to cause extra fees, and the roof of our carport has to be rebuilt. Double ugh.

In the land of Pillbags: My back-up manufacturer promised to deliver a slew of Pillbags to supplement my dwindling inventory (which is, in fact, a good thing!), but he didn't come through. After a week of difficult conversations, begging, and pleading (some of which took place during my sacred nap hours of 2-4pm),  the bags still aren't here. Triple Ugh.

Add to that some back and forth with my attorneys regarding my patents, hauling my laundry back and forth from my sister's, and the normal shenanigans the girls threw at me, and by the end of the week, I was toast. I'd reached my limit of things that weren't going my way, and I was feeling sorry for myself.

So late Friday afternoon, at 4:30pm, I found myself on the phone with my manufacturer. I was simply calling to confirm that my overdue Pillbags were going to ship that evening, but based upon the length of time I'd been on hold, I was sure things weren't going as planned. As frustration gave way to anger, I decided to distract myself. While I listened to "hold" music in the background, I picked up a book from my bedside table. (In the small rental house, my "desk" is my bed...which is another reason the cabinet delay is upsetting.) The book, "Little Princes", is my book club's choice for this month. It's a wonderful story, about a guy who stops in Nepal along a trip around the world, realizes there's a need for intervention in the world of child trafficking, and decides to return to Nepal to open up a children's home. A fabulous story, with a great ending, but not without heart-wrenching stories in between. I was in the middle of one of those stories when I picked up the book. In the midst of the week-long pity party going on in my mind, here's what I read:

(Note: The author, Conor, has just walked into a room of a "house" where trafficked children are being held, in deplorable living conditions.)

"It was dark. A moldy smell washed over us as we stepped carefully inside...At first it looked to be an empty room. Then shapes began to distinguish themselves...a shape appeared, dimly lit by the light from the doorway. It was a child. He must have been seven or eight years old, but he was dangerously thin and clutching a handful of rice...soon more children were coming out, boys and girls. Most were bald, their heads clumsily shaven to banish lice. There were more than thirty of them."

(The author has come to this house in search of seven children in particular, who have recently disappeared. When it's confirmed that none of those seven are in this house, the guide he's with, Gyan, a Nepalese government advocate for trafficked children, declares that they must leave. Here's the conversation:

Conor: "Wait! What about these - are you just going to leave these kids here? They're starving!"
Gyan: "I can see that, Conor sir. What would you like me to do?"
Conor: "Take them with us, put them in a home!"
Gyan: "Which home, Conor sir? Your home?"
Conor: "I don't have a home yet, Gyan, you know that. I mean a government home."
Gyan: "We do not have a home, either, Conor sir, not one with room. Nobody has homes for these children...I know this is difficult. This is not like your country. We do not have solutions as you do."
Conor: "So we are going to leave them here...with so little food, living in a hole?
Gyan: "This is Nepal, Conor, sir. There are thousands of children like this. But now we must continue to search for your seven children. We cannot give up, no?"
Conor: "No, we cannot give them up."
Gyan: "Then we must go. I hope I may come back for them. But this woman ["in charge" of the children] knows I am watching her. She will not let them expire. This visit has scared her. The children will eat better tonight."

The author then writes: "Leaving that house was one of the most difficult things I'd ever had to do in my life."
*** can imagine how my pity party, along with the anger and frustration I was about to unleash on my manufacturer, dissolved after I read that selection. As if my issues with pillbags, washing machines, and paint colors weren't insignificant already, with a little perspective, they seemed absolutely ridiculous.

I read a few more sentences, and then my manufacturer returned to the line. As expected, he hadn't been able to finish the bags, and nothing was scheduled to ship that night. I was disappointed, yes. But was I angry? Irrational? Was I going to really let him have it? No. In comparison, my issues were manageable. This wasn't an issue of life and death. This was business. And at that moment, I was thankful that I even had business to conduct.

As I go about my affairs this week, I hope I can remember to keep my blessings at the forefront...for I truly am blessed, lupus and all.

Friday, April 19, 2013

Good decision making - let the habit begin!

We've been working on making "good decisions" in our household lately. Deirdre, unfortunately, has been dabbling in the world of bad decision-making, including, but not limited to, coloring on furniture with crayons. She tends to have an accomplice during her escapades - her 4-year cousin - and the two of them can cook up trouble faster than you can believe. But, they both seem committed to rehabilitating themselves. A bit reluctantly, perhaps, but they are only four. We'll give them a little time.

Dee's recent errors in judgment have encouraged me to look at my actions, to make sure I'm making good decisions, particularly when it comes to taking care of myself. I put myself to the test just last week, when Johnny made plans for an afternoon at the ballpark. We had a babysitter scheduled for that morning, but I hadn't planned on having her stay all day. I figured I could just tough it out during nap time: I'd get Deirdre set with a movie, put Bernie down for a nap, and just pray that everyone did what they were supposed to do for an hour and a half. That isn't always enough of a rest for me, but I'd decided to just deal with it for one day.

And then I thought of Deirdre.

The best way to hold her to good decision-making is to make a few good ones myself. So that's what I did. I put pride (and money) aside, and asked my babysitter to stay for an extra few hours. I DESPISE doing that - because not only am I paying someone while I nap, it just makes me feel like I'm not capable of taking care of my girls. (I know, I know. But let me finish.)

But it was a small price to pay. I got in a great nap, Deirdre got to play outside instead of being cooped up with a movie, and Bernie awoke to find a babysitter who was ready and willing to play, rather than a mom who was longing for more rest.

The day ended well - and having gained momentum with that good decision, I decided to ask my sitter to come back THIS weekend to help me again. Johnny has another afternoon away, and while I toyed with the idea of just pushing through...I decided I'd rather have a repeat performance from last week.

I guess good decisions can be habit-forming. Let's just hope Deirdre and her cousin agree!

Monday, April 15, 2013

Introducing the Pink Ladies - the new Spring Pillfolds of 2013!

Believe it or not, pink is not my favorite color, but you sure can't tell it from my new Pillbags! My daughter Deirdre will tell you that, in fact, "Blue is Mommy's favorite color", but I decided to bring the signature pink of the inside of the Pillbag to the outside this Spring. Enjoy the fresh, fun, springy colors. And know that they go great with the Pillpouch Peabody™ I introduced a little over a week ago. Pairing the two together, you'll be toting your pills in style for sure!

Pillfold Amelia

Pillfold Winchester

Pillfold Colina

To order your new pink lady today, click here! 

Friday, April 12, 2013

The Lupus Endeavor - Meet Jessica Mathews!

Every once in awhile, you run across an impressive, talented young lady who completely restores your faith in the younger generation. I had the opportunity to meet such a young lady when I was in Memphis, TN in February. Jessica Mathews asked me to participate in a project for The Lupus Endeavor, a non-profit organization she created that's dedicated to raising awareness for Lupus, but most importantly, raising money for a cure. After learning a little bit more about Jessica, and understanding the inspiration behind the organization, I couldn't say no.

Jessica's mom, Kim, an equally lovely and impressive lady, was diagnosed with lupus in 2012. For nearly 5 years before she received a diagnosis, Kim went from one doctor to another, searching for answers, and coming up empty. Jessica saw the pain her mom experienced, the changes in lifestyle and emotion, and the struggle to find answers, and decided to do something about it. Thus, the idea for the Lupus Endeavor was born.

Sixteen-year-old Jessica has masterminded the entire project, creating a website filled with valuable content about the project, about lupus, and a fundraising page where 100% of your donation goes to lupus research. She features videos detailing personal stories from people with lupus, and I am honored to be one of those stories.

I invite you to take a look at her website, explore the photos, media, links, and blog posts she's included, and share her site, videos, and her project with everyone you can. And consider helping Jessica in her quest to raise awareness and funds for a cure. For her mom. For me. And for yourself.

I blogged a few weeks ago about the pertinent question Jessica asked me when I was being interviewed, "What would my life look like with a cure?", and I invite you, too, to consider the question. You have the opportunity to post your response here on her site. Let your voice be heard. Let awareness begin. Let a cure be found! 

(I know I was supposed to unveil the rest of the 2013 Spring line of Pillbags this week...but The Lupus Endeavor trumped my post. That's how remarkable Jessica and her endeavor truly are! Stay tuned for Monday's post - where I promise to reveal!)

Wednesday, April 10, 2013

Despite Lupus goes back to the Hoosier State - Thursday, May 2nd, 2013

I'm pleased to be returning to the Living with Lupus Symposium in Crown Point, Indiana on Thursday, May 2nd, 2013. It's always a treat to get back to my home state of Indiana...and I'm looking forward to connecting with the lupus patients in Northern Indiana. I'll give a presentation about Living Well, Despite Lupus, and my books and Pillbags will also be available. I hope to see you there. Information on the event can be found here!

Monday, April 8, 2013

The Pillbags on You Tube!

I'm pleased to be able to share the following videos with you - the first is an endorsement from a doctor in Tennessee who's adopted the Sara Gorman's Pillbag method for organizing his vitamins, supplements, and medication. Although it sounds like SGP may need to expand to include a men's version, I'm glad he's willing to use the attractive Pillfold Montego™. Thanks, Dr. Laurence, for the great video!!

(Note: You should consult your doctor before following this or any medical advice.)

Of course, Dr. Laurence prompted me to recruit my own sales team to do a short promotional video, too. Niece Emma and my daughters Deirdre and Bernadette jumped at the chance to record the promo...I guess they've heard their mom pitch the Pillfold a few times!


Friday, April 5, 2013

The new 2013 Spring line of Pillbags - introducing the Pillpouch Peabody™!

It's time to unveil my new spring line of Pillbags. Hooray!

Pillpouch Peabody

To Menagerie Collection
A larger shot of
the Peabody fabric. Fun, huh? 

Although I won't be introducing the new Pillfolds in this Spring line until next week, the new Pillpouch design is up and ready for your order. It's as cute as can be - in fact, I think I might start carrying the Pillpouch Peabody myself!

Here I am at a recent show where two of my new designs (one of them being the Peabody™) were made available. They sold immediately. Gotta love pink and grey!

Wednesday, April 3, 2013

REM Runner talks dating with a chronic illness

A friend, fellow author and blogger, Julie Flygare, wrote a great post recently on her blog, REM Runner. I thought I'd share, as she touches on so many great points about dating with a chronic illness - hers being narcolepsy. (And if you're looking for a good read this spring, check out her memoir, "Wide Awake and Dreaming", available here. It's fabulous!)

Here's a snippet of her blog post on dating with a chronic illness:

Disclosing narcolepsy on a date can be intimidating. Do you announce it right away? Wait until it comes up in conversation? Hold off for the second or third date? Avoid the topic altogether?

I’ve tried all the above and here’s what I’ve learned: presentation is everything. When I present my narcolepsy like “I have this terrible illness that I’m uncomfortable with” (either in my words or body-language), the recipient responds that yes, narcolepsy is terrible and uncomfortable to talk about.

Alternatively, when I present it like this, “I have narcolepsy, it’s a serious condition but I’m proud to have overcome so much adversity and now write a blog to help others…” Then the recipient generally agrees that it is something to be proud of.  I say “generally” because there are always outliers. 

She goes on to describe a recent date at a restaurant with one of the "outliers" - a guy who clearly didn't "get it":

We were only at the bread basket stage when the conversation led me to disclose my narcolepsy. We were discussing careers and I explained, “I work as an independent copywriter but I’m also a narcolepsy spokesperson and was actually in Marie Claire Magazine last month. I’m writing a memoir about my journey with narcolepsy – from the beginning symptoms to ultimately running the Boston Marathon.”

I stopped there – proudly knowing I’d presented my narcolepsy better than ever before. I felt like a car salesman on the verge of making a big sale.

My date stared blankly and asked, “Is there anything else wrong with you I should know about now?”

Speechless, I fidgeted with my napkin in my lap and finally responded, “Wrong with me? – I said I’m a spokesperson for narcolepsy, writing a book and recently ran the Boston Marathon.”

He went on to boast (at length) about not having read an entire book since high school. By the time our entrees arrived, I tuned out. Maybe I was quick to give him the boot, but living with narcolepsy, I must prioritize my time carefully. I knew I would’ve rather gone yoga or taken a nice long evening nap than go on a second date with him, so I trusted my gut and moved on.


You can read the entire post here. I so often hear lupus patients voice their concerns about how to broach the subject of their chronic illness with potential suitors. From what I hear, the dating scene and lupus can be a tough one to navigate - and it's a subject that I can't speak about. I was diagnosed with lupus only after I was married. My suitor didn't know what he was in for when he married me, but he soon found out!

Monday, April 1, 2013

Rhyming for the sake of the nap

We've had a terrible run of interruptions during our afternoon naps lately. First, it was the FedEx guy with his cursory knock to let us know we had a package (thanks for telling me, but "ugh!").  Next, we had the landscaping guys who were working next door inquire about trimming our trees (no thanks...we're just renting). Follow that with a couple of painters offering their services, and a random knocker I can't identify, and Bernadette, Darwin and I have been a bit starved for a good, solid nap. I know these guys mean well...but a nap is a nap. And it certainly ISN'T a nap if you're not sleeping!

As I was desperately trying to go back to sleep after having been awakened once again a few days ago, I found myself too frustrated to sleep. Instead, my mind wandered into "poet mode" as I contemplated ways to fend off visitors. Here are few of the slogans I came up with for my front door. It was actually a good diversion that put a smile on my face - which is often what you need in times of desperation, don't you think?

Feel free to cast your vote for your favorite one, or maybe you have your own little jingle to contribute. Have fun with it - it's my front door, after all!

Right now, our household is napping
So thanks for not banging or tapping.

In this house, we sleep from two to four o'clock
So during that time, we'd appreciate not hearing a knock.

Every afternoon from 2-4 we sleep.
We thank you in advance for not making a peep.

We're unable to come to the door,
As some of us are taking a rest.
Feel free to leave a card or note
But thanks for not bothering our nest.

We nap from 2-4
And we'd rather not be disturbed.
For if you wake us up
We're bound to be perturbed.