Wednesday, May 30, 2012

Ain't misbehavin'...well, maybe just a little bit

A few Fridays ago, I had an unspoken directive from Johnny: whatever you do, take a nap. He had a special celebratory dinner planned for the evening at a fabulous restaurant in D.C. in honor of the launch of my new pillbag business, and he wanted to make sure I would be rested enough to enjoy it. It was a wonderful gesture - he's always so good at "celebrating" things -and he'd invited his mom and dad (who were in town) along with my sister and brother-in-law to join us. It was sure to be a wonderful evening...although a few hours before we left, things weren't looking so good.

I had intended to get a good nap - rest up and all that for an evening of fun, but it just didn't happen that way.  As I recall, I put the girls to sleep around 2:00pm, but then I chose to do a little work until almost 3:30pm. (Bad, bad, bad Sara.) I was counting on getting a good hour in from 3:30pm to 4:30 or 5pm, but of course, that's not the way it worked. Both girls woke up, and although Paola was in charge, Deirdre insisted on coming in to see Mama (which she never does), Bernie was inconsolable for a brief period of time (which she usually isn't), and all of a sudden, it was 5pm and I had logged only about 45 minutes of intermittent sleep. Uh-oh.

Johnny would not be pleased...because he knows how hard it is for me to put on a good show with less than an hour of sleep under my belt. Particularly because the reason I only had a measly forty-five minutes of sleep was because I'd chosen to work instead of sleep. Definitely a wrong decision.

But then...I made a right decision. I had an errand to run before 6pm, and Johnny offered to come with me, since Paola was still working. As we were driving, I said something about being a little tired, and he asked if I'd gotten a good nap. I said something to the effect of "no", and he asked why not. I told him about working instead of sleeping, and he wasn't happy. Actually, he was disappointed, which is even worse.

And then I just said what was on my mind, which was, "What I really want to do is to pull over, take a nap in this quiet, childless car, and go back to the house rested and relaxed." He asked if I was serious, and I said I was kind of serious. He looked at my weary, teary face (I cry when I'm tired) and decided we needed to be serious - so he immediately pulled over into the school parking lot around the corner from our house, parked, and told me to nap. And I agreed. I leaned back my seat, and slept for a good 20-30 minutes.

And he...just sat there. Yes, he had his Blackberry, and sure, he enjoyed some quiet time without Deirdre and Bernie asking him to play (or me jabbering in his ear), but he really is an all-star guy. He continues to keep me on the path to living matter how many times I stray from it.

I woke up, rested and ready for an evening of fine dining and enjoyment.

And enjoyable it was. We had a wonderful night, and I felt fabulous the whole time. I wasn't tired or weak in the least bit - and it was a great feeling to be rested enough to thoroughly enjoy my special evening out.  We even ran into my perinatologist at the restaurant. He kindly sent over a complimentary drink to the table, which prompted us to tell him why we were there in the first place (the pillbags). And because I was well-rested, I could talk intelligibly about my business, my plans, and all the rest. It was a perfect ending to a perfect evening.

And it will be a long time before I forget how almost un-perfect the evening could have been. Sleep first, work second. Always, always, always!

Monday, May 28, 2012

The next shop on the list - The Virginia Florist!

I'm happy to announce that another fabulous retail shop is carrying the pillbags  in my area  - The Virginia Florist in Hollin Hall, Alexandria, VA. (They also have a location in Belle View, also in Alexandria). The Virginia Florist has been a favorite of mine ever since I moved to the area almost 16 years ago - it's one of those stores that's guaranteed to have the perfect gift for the perfect someone, every time. It's an upscale gift shop that never disappoints, and they frequently change their eye-catching displays so that with each visit, I'm struck by the great new finds that I have yet to see anywhere else. And their selection of jewelry is phenomenal!  While I know their floral design department stays very busy with weddings and other events, their gift shop is what keeps me coming back. Hopefully, the pillbags will keep customers coming back, too!

In the area? Be sure to stop in to The Virginia Florist at Hollin Hall today!

Friday, May 25, 2012

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?

Wednesday, May 23, 2012

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!

Monday, May 21, 2012

The project of all projects -

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!

Friday, May 18, 2012

The Pillbag takes a field 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 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!

Wednesday, May 16, 2012

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!

Monday, May 14, 2012

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!

Friday, May 11, 2012

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!

Wednesday, May 9, 2012

Basil, sweet basil: the lupus accommodations we make.

I think I’m going to do it. I think I’m going to try some basil.

Years ago, when my random angioedema incidents were high and oh-so-annoying (you can read about them here and here), I tried everything to uncover the triggers. I had my trusty spreadsheet, of course, and I logged food, drink, exercise, weather, work, sleep, etc. etc. And, it turned out, that there seemed to be an uncanny amount of swellings on days when I would ingest…drumroll, please…fresh basil. In fact, it seemed that anytime I had fresh herbs – of the spinach, arugula, and basil variety, in particular – I would have an incidence of angioedema.

So once I made this connection, you can imagine how quickly I cut out all fresh herbs from my diet. And it made a difference. At least, I think it made a difference. My swellings went away, but I was also making a few other changes at the same time, like cutting out wine and most dairy from my diet, along with employing major stress-reducing tactics, as I think those three things were culprits, too.

While my dairy abstention didn’t last all that long, the zero tolerance for wine and fresh herbs made it for quite a long time. I still haven’t guzzled (or sipped, for that matter) a glass of wine, but I no longer shy away from food where a sauce is made with white or red wine. It doesn’t seem to have any effect in such small doses, so that’s one less thing I have to worry about when eating out.

As far as fresh herbs, I’ve slowly re-introduced most of them – but kept those major three (Spinach, Arugula, and Basil) as no-no’s. (I can do frozen spinach, but fresh has still been off limits.) For anyone who’s suffered at the hands of an angioedema incident, particularly in a prominent location like one’s face, you just aren’t willing to mess with success. Life without random swellings is a beautiful thing – fulfilling, enjoyable, and all that. I don’t feel like I’ve missed a thing without S.A.B. in my life...but now that I’ve been incident free for so very long, I’m starting to get curious (or is that cocky?)

So I'm considering trying some basil. It's not like I'll start with a triple-decker basil sandwich, but a little pesto might be interesting. We were at a friend's house for dinner just the other night, and she served a side of yummy-looking pesto pasta...and it made me think that it might just be time to experiment. 

Or maybe not. When I just typed the word "experiment", I got a not-so-funny feeling in my stomach. (But I guess at least it wasn't a swelling sensation in my lip.) Now that I've said it out loud, "experimenting" with anything that could mess with a currently-dormant symptom of lupus doesn't sound very appealing. 

Wow. That didn't take long. 

I guess I'm going to have to keep you posted on this one. I think my basil project might have just been temporarily postponed, due to poor word choice by the writer. 

Oh well. The good news is that, just like with other lupus accommodations, life will go on. The world hasn't gone to pieces every afternoon when I nap. Nor has anyone suffered terribly when I limit my sun exposure. So whether or not a fresh basil leaf sees the inside of the Gorman household this year is immaterial...I shall carry on living well...and angioedema-free! 

Monday, May 7, 2012

How much is too much? Calling out lupus and her symptoms.

A few weeks ago, I blogged about the phases of lupus, and the fact that life with the disease really can improve. It's hard to believe that when you're in the midst of a flare, but as most of us know (but sometimes forget), flares don't last forever.

That said, when I got to the end of the "Phases" post back in February, I felt like I had more to say on the subject. (Quell your jokes, please.) There was an essential piece of the puzzle that I didn't touch on, and that is the ability to know when a flare is lasting too long, and when it's time to speak up.

Okay - so first - you probably know by now that I think it's ALWAYS a good time to speak up. There should never be a moment when you leave a doctor's office thinking, "What did they just say?" If you don't know what the plan is, or what you should expect to happen (with your body, your medication, your test results) from one appointment to another, you should march right back in that office and ask. And once you've done that once or twice, you'll realize there's a huge benefit to asking  those questions BEFORE you leave the examining room.

But what if your ambiguity lies in the not-so-concrete world of lupus, or rather, the non-quantitative side of lupus symptoms? How much pain is abnormal? How much joint swelling is alarming? How do you know when enough is enough? Deciding that whatever level of symptoms you're experiencing is no longer acceptable is a tough one. Primarily because there's a lot at stake - pride, confidence, comfort level, disruption of routine. But if you can look at it as though your calling out the disease, rather than crumbling under pressure, it makes a world of difference. Look at it as though your disease has gotten out of control. It's not that you can't necessarily handle it's that lupus is unruly and undisciplined, and she needs to be dealt with. And by someone other than just you.

I say share the burden - let the doctor know the current treatment isn't sufficient, and brainstorm together on options moving forward. If you never say something, the doctor's never going to know to do something.

In my early years with lupus - I could never figure out how long to hold out, but now I know. Not that long.
If you feel like something's wrong, it probably is. And if you think you're at your breaking point, you probably are.

And as you muster up the courage to call out that disease to your doctor, feel free to brush up on Chapter 4 of Despite Lupus before doing so...learning from the error of my ways is sure to smooth the process!

Friday, May 4, 2012

Living in the USA equals a leg up on Benlysta.

While I have an upcoming post titled "Made in the USA", in which you can learn everything you ever wanted to know about manufacturing pill bags in the United States of America, I figured I should first do a post about LIVING in the USA, based up on this article that a friend forwarded me recently. Looks as though Benlysta wasn't welcomed with open arms in the UK as it was here in the US. 

It appears that Nice, the National Institute for Health and Clinical Excellence, and also the Scottish Medicines Consortium, has rejected Glaxo-Smith Kline's Benlysta, thus denying patients access to the drug. The reason? As Nice chief executive, Sir Andrew Dillon says, "...the evidence considered did not persuade the committee that belimumab (Benlysta) provided enough health benefit for patients in view of how much the NHS would need to pay for it compared to standard care, as the cost of the drug in relation to how well it works is very high," said Sir Andrew in a statement.

Simon Jose, general manager of GlaxoSmithKline UK, and also president of the Association of the British Pharmaceutical Industry, said he recognised that difficult funding decisions had to be made because the NHS had limited money. But Nice should not compare belimumab (Benlysta) to cheap, older medicines that are now out of patent. That, he said, "fails to recognise the benefit of this clinically proven medicine".
He said: "These are devastating decisions for patients with lupus whose disease is currently uncontrolled by existing therapies. By denying access to belimumab (Benlysta), which is the first treatment specifically developed and licensed for lupus in over 50 years, UK patients are being left behind those in other countries including the US, Germany and Spain who already have access to this medicine."
Click here to read the whole story, and let's hope that eventually our friends across the pond get approval for this and any future drugs for lupus. When I think about all of those wonderful lupus patients I met at the Living Well seminar I did in breaks my heart. Benlysta could be a lifesaver! 

Wednesday, May 2, 2012

The Beauty of the Contingency plan

When it comes to time management, I only wish I could set myself up to succeed!

I've referenced my lateness before - and while I'm always trying to retool the way I think about time - I think I just might have come up with something brilliant. My epiphany came recently - in the shower - as I was racing against time to shower, get ready, and leave within a 30-minute window of time. Oh, and did I mention I needed to send three emails, pack the girls some snacks, and press my pants before I left?

Yeah, see, that's my problem. I plan and allot time for various tasks that I need to complete before going somewhere, but the amount of time I allow is well, a little off. But I've actually improved since my early days, and, in my estimation, the example I gave above is a bit of an exaggeration. (My husband and sister would probably disagree...but this is my blog. Thankfully.)

But what I absolutely don't allow any time for is a contingency plan. I assume that nothing will go wrong, there won't be any children to waylay me, and that my tasks will fall into place as planned.

There's no padding on my list of tasks - if it takes me 10 minutes to shower, I allot 10 min to shower, and not a moment more.

But what if I drop the soap in the shower and it goes down the drain?

What if one of the girls comes in while I'm drying my hair and they need something urgently (e.g. to have their fairy wings fastened to their princess dress)?

What if the iron makes an unfavorable mark on my pants?

What if there's construction on the road?

These things happen...daily...and yet I never build in contingency time to account for these occurrences.

It's a similar mistake I used to make with lupus. I never allowed for a contingency plan, in the event that my disease started to act up - when I was going out, meeting up with others, or making commitments to myself.

But I learned that the best way to deal with both my unpredictable chronic illness and the high expectations I set for myself was to give myself an "out". During the time when lupus was at its worst, here were the ground rules I set for myself:

Going out: I would drive separately so I could come home early and not disrupt anyone else's plans. This didn't apply to my husband so much (because he was always shuttling me everywhere), but when I went out with friends or co-workers, it was always best to drive separately so I didn't feel guilty about leaving early.

People coming over: I forced myself to have a take-out option available. I would plan to make food for our guests, but if the day before or the day of I found that I felt really bad, I'd whip out the phone, or Johnny would make a stop at the store - the prepared foods section - and we'd be set. I didn't like doing it, but I learned to tolerate it.

Saying yes to plans: I would always mention the possibility that I might have to bail. Sometimes, I chalked this up to lupus, saying something like, "As long as I'm feeling well, I'm in!" Other times, I would just casually mention that, "In the event that I have to cancel, I'll be sure to give you as much notice as possible." That way, when it came to pass, I didn't feel like a heel.

And in the end, setting myself up to alter my plans, if necessary, gave me the ability to make plans in the first place. (See more on this in blog posts past.)

So here's to applying that same contingency-laden attitude to my current lifestyle. If it takes me 10 minutes to shower, I'm going to allow 20 minutes to get the job done.

Ugh. That almost hurt to type. But attempt, I will. And I'll be sure to keep you posted! (I estimate that future post to take 30 minutes...tops.)

Tuesday, May 1, 2012

The Pillbags have arrived!

Finally! May 1st has arrived, and so have Sara Gorman's Pillbags. The site is up and ready for orders - so take a moment to log onto, browse the site, pick your bags, and prepare yourself for a dose of style!

You can also get to the bags via ,
but I figured my loyal Despite Lupus fans deserved a short cut!

Thanks again for your patience while the pillbags were in production. Your encouraging comments and feedback kept me going!