Evil under the sun: true lupus envy

I got a good dose of lupus envy about a week ago. Our 12-year station wagon needed a tune up, and the dealership kindly gave us a loaner while the car was in the shop. Check out the sweet ride they let us  borrow:

Now, normally, the cars the dealership lends us don't pull at my heartstrings (or is that purse strings)? But this car was a blast. The girls and I had such fun driving around town in our convertible loaner. Yes, the sun was shining down on all of us, but our trips were limited, and we all wore protective eye-wear. Plenty of sunscreen came along for the ride, too.

Basking in the sun (even for just a few short days) immediately brought me back to my pre-lupus days. One of the first cars I had after college was a white VW Cabrio, complete with a convertible top. I loved that car - and had plans to keep it for a long time - but then I was diagnosed with lupus. My sun-filled commutes to the office, joy rides on weekends, and every sunny trip in between had to come to an end. I sold the car, and moved on to the next phase of my life, which included tinted windows, long sleeves, and umbrellas.

But this recent trip down memory lane was fun. The car was super cool and very fun to drive, and our family of four enjoyed pulling up to our regular hangouts in a brand, spanking new convertible. And I have to admit, I would have accepted that car in a heartbeat. But, given the fact that I've spent the last 11 1/2 years trying to avoid the sun as much as possible - I think I'm going to have to pass for now.

Oh well. At least we have pictures to prove how super cool we really are, don't we girls?

Calming my to-do lists...with color

As you know, I (compulsively) make to-do lists - but I've never given much thought to the type of paper I use to create my lists.

Okay - that's not entirely true. I know I prefer unlined paper to lined paper, and I like pieces of paper that are bigger than square post-it notes but smaller than 8 1/2" x 11.

But I've never thought about the color of the paper before. I typically write my all-encompassing to-do list in a little notebook that I carry in my purse. And for the daily to-do lists that get written every three days or so, I just use whatever scrap paper we have around - typically white, pale yellow or blue, because the printing company Johnny uses for his business uses yellow and blue separator sheets. So up until now - my to-do lists have only known those three colors.

But things took a turn last week - a turn in the shade of hot pink - and I'm not sure I'm a fan. I found myself out of scrap paper last week, and scrounged up a hot pink, lined post it pad (large and rectangular, not small and square), and decided to keep it in the kitchen for my daily to-do's. And ugh! It's really not working.

Every time I pass by the kitchen counter where I keep the list, I feel my to-do list screaming at me. Even when I'm working in another part of the kitchen (which granted, isn't that big), I catch a glimpse of that bright fuschia out of the corner of my eye, and it makes me anxious. (Not really anxious, but at least cognizant of the list being in the same room as I am.) I'm amazed at the presence this little pink pad has - but it's too much presence for me. My to-do lists are important - but for someone who knows what she has to do and knows when she plans to to do - I don't need a constant flash of color to remind me.

So the pink pad has been filed...not in the circular file, but in a file. I've found my pleasing-to-the-eye plain white paper again, and order has been restored.

The point? Sometimes, the slightest change can make the biggest difference. I've found that to be true time and again with lupus. Whether it's making a slight change to medication, altering the way you  wear your hair to mask hair loss, or swapping out a clunky plastic pill box for a cute little pillbag, living well doesn't always require monumental effort. It doesn't have to be some herculean task that sets you on the path to living well. It's finding the little stuff in your everyday life that can make life with lupus that much more manageable. It's empowering when you make small, incremental changes like these - I remember specifically feeling like a rock star (literally and figuratively) when my doctor and I would decide to tweak my prednisone a couple of milligrams. Sometimes I was on 2 milligrams too many, other times it was just an extra 2mg I needed to stay ahead of the pain. It wasn't a big change, but it sure made a difference.

So I encourage you to make one small change in your daily routine today to try and make life with lupus a little bit easier. Maybe you've been meaning to buy an easy-to-use utensil for the kitchen, maybe you owe your doctor a phone call about a nagging situation you should have called about weeks ago, or maybe you could stop on the way home and pick up a prepared dinner. Whatever it is, make sure you treat yourself to an emotional or physical pick me up today!

The project of all projects - Abledis.com

A few months ago, I was approached via email by Marissa, a lovely lady who wanted to do a lupus feature on her blog - part of a project she calls the "12-12-12 Project". In her own words, "educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition." So, she's committed to exploring 12 different conditions over the course of the year, featuring one person each month afflicted with that condition, and building awareness and understanding every step of the way. 


I'll let you read the inspiration for her project here, and you can see all the work she's done to educate herself on lupus here. Marissa and I will be talking later this week, and our conversation will be posted shortly after that. I'm looking forward to chatting, and while I know she wants to learn about me...I'd like to learn more about someone who takes on such a amazing project like this one.


You should  also check out her past projects which are truly captivating - each one more inspirational than the last. I'm honored to be included in the line-up, and my pillbags were excited to receive such a ringing endorsement, too!

The Pillbag takes a field trip...to the Gala!

Last week, I had the chance to attend the Lupus Butterfly Gala in Washington D.C., put on by the Lupus Foundation of America. It was a spectacular evening. Here I am with my girlfriends - can you see my pillfold in the picture?

Probably not...because it's tucked away inside my tiny white handbag. That's how small and convenient pills can be, when a Pillbag's involved!

Interestingly, I ran across an article written by Christine Miserandino (the spoon theory lady) about a year ago, lamenting the fact that she couldn't find a way to stylishly carry her pills during an evening out...my sentiments exactly! The article goes on to offer great advice for and the importance of keeping track of medication, regardless of whether it's stylish or not. Of course, that's the beauty of the Pillbags. You can adhere to your medication regimen, AND do it with a dose of style™!

So what pillbag did I choose to take with me that night? The Pillfold Cambridge™ seen below.

And no, I didn't intend to match my dress (I promise!), but every time I brought out my pillfold, people mistook it for my evening handbag. Guess what? That's the point!

I met a ton of great people, dedicated to making life with lupus a whole lot better. Big whigs and small whigs, doctors, policy makers, and patient-advocates, along with a few patients, just like me. It was a wonderfully inspiring evening. I hope to do it again!

Moment of panic - lupus and the sun

Every few months, I experience a moment of panic - a moment when I realize that the perfect, "works-for-me"  lupus routine that my girls and I have going won't last. I had such a moment about a year ago...when I suddenly realized that the girls weren't going to take naps forever (unlike their mother.) I panicked (unnecessarily), thinking about how I was ever going to manage to get a nap if my girls didn't take one. Could they play safely on their own? Would they be patient enough to wait out my rest time? Of course, before I worried too long, several DL readers came to the rescue, and reminded me that eventually, the girls will go to school. Oh, right. That! And once they're in school, I'll be able to nap whenever I want. No doubt, there will be a short period of time when the girls stop napping but aren't in school full time, but I can handle that. Anything temporary, I can manage.

I had another moment of panic just recently, when I was driving to a pillbag/book signing event. It was a gorgeous day out - the sun was shining and spring was in full force - and I was thinking to myself how great life is. How things really couldn't get any better - with Johnny and the girls, with my ventures, with life in general. And then I glanced out the window, and I saw a mom, standing in the middle of an empty baseball field with her young son. From the gear they had with them, it seemed they were waiting for practice or a game to start - and there wasn't a shade tree in sight, the sun was glaring down on both of them. And I got a queasy feeling in my stomach, and in fact I was almost brought to tears...just thinking about the difficulty of standing in the sunlight for hours on end, watching whatever little game the girls might have going on.

Now, before I get too far down this road, I have to stop myself. Because not only have I blogged about photosensitivity and the many ways to avoid exposure but still enjoy life outdoors, I've traveled to two different countries to give talks where I specifically talk about dealing with the sun and learning not to feel guilty about it. I've even cited examples about kids and outdoor activities, encouraging other moms to let go of the guilt they feel about not being able to be out on the field from morning to night, and instead going out for only the early morning games, or taking an umbrella, or taking breaks in the car every once in awhile.

I'm not saying it's going to be easy, and I'm not saying we're not entitled to feel bummed out by the fact that long doses of sun and our bodies don't mix. But now that I've had a moment to grieve, (see Chapter 1 of Despite Lupus), I need to remind myself that living well, despite lupus requires strategy. It requires forethought, and it demands that I think outside the box a bit - realizing that while I may have some limitations that other mom's don't have, I have the ability to craft a life worth living. I just have to choose to do so, rather than let the disease get the best of me.

So what if Johnny has to man the sidelines while I watch from under the shade tree on the other side of the parking lot? What if I do the school plays and the (indoor) swim meets, while Johnny is the soccer dad? I don't know how it's all going to shake out...but I'm sure my experienced DL readers will tell me. Until then, worrying unnecessarily is a waste of energy. Energy that the mom of a 1-year old and a 3-year old DEFINITELY needs to conserve!

Facebook Chat with the Experts at HSS

Here's another chance to get your burning lupus medication questions answered! The doctors at Hospital for Special Surgery (HSS) have signed on for an hour of questions and answers this Wednesday, May 16th from 5:30 to 6:30pm EST. Topic of discussion? Lupus and medications. Join the conversation with some of the nation's top rheumatologists from the Mary Kirkland Center for Lupus Research.


Just go to HSS’s Facebook page, "like" their page and join the conversation. Who are the rheumatologists from HSS that you'll be chatting with?

Michael Lockshin, MD - Adult Rheumatologist
Jane Salmon, MD - Adult Rheumatologist
Monica Richey, NP - Rheumatology Nurse Practitioner
Emma MacDermott, MD - Pediatric Rheumatologist

I had the chance to speak at HSS last fall at a lupus workshop. It's an impressive place with a great lupus network. You don't want to miss the opportunity!

Pillbags at a gift shop near you!

The Pillbags are making their way to retail shops around the country - and we're thrilled to see them on the shelves! We've started out with a bang here in the Washington D.C. area - with lovely shops in No. Virginia and Maryland carrying the bags. I'll highlight the stores throughout the coming weeks - just in case you prefer to pick out your favorite pillbag in person!

One of the first shops to carry the pillbags was the Maris Elaine Gallery at the National Harbor in Oxen Hill, Maryland. The Gallery carries exquisite, one of a kind finds that owner Terri Hartwell Easter handpicks. She's a one of a kind herself, and if you're lucky enough to stop into the store when she's there, you'll have an even more enjoyable shopping experience, hearing first-hand how she collected each and every piece. When I was in just recently, I couldn't take my eyes off of a cowhide black and white square ottoman...but I didn't act fast enough. It boasts a "sold" sign now...but I'm sure something equally as wonderful will take its place.

You can read more about The Gallery here, and if you have a minute, stop by the National Harbor, pop your head into the Maris Elaine Gallery, and tell Terri I said hello. Oh, and pick up a pillbag while you're there!