Tuesday, November 29, 2016

St Aidan's Holiday Marketplace this Friday and Saturday. Don't miss it!

In the Alexandria area? Hope you can join me for one of my favorite events of the year!

Stop by St. Aidan's Holiday Marketplace on Riverside Drive this Friday and Saturday between 9-2pm, and get a jump on all of your holiday shopping. Can't wait to check out the new vendors, as well as shop the returning ones. See you there!

Sunday, November 27, 2016

Even your pills can be Merry and Bright! 
Take 15% off your next pillbag purchase. Use code "MERRYMONDAY". 
Hurry! Offer good Monday, 11/28 only! 

Tuesday, November 22, 2016

Healthline's Annual Best Health Blogs 2016 Contest. Thank you, thank you for the nomination!

Image result for healthlineI am so honored to have, once again, received a nomination in Healthline's Best Health Blogs Contest of 2016!

As a blogger and online health advocate, there is no greater honor than to be included.  It's not why I write, but it certainly keeps me writing! 

If you're so inclined, feel free to cast your vote for Despite Lupus. You can do so here. Simply click on the link, scroll down to the search bar on the Healthline website, type in Despite Lupus, and cast your vote.

And my sincere thanks for your support over the past eight years. I can't believe it's been that long. Your constant feedback in the way of comments, emails and social media sharing has made the time fly!

Happy Thanksgiving!

Thursday, November 17, 2016

Super excited about kicking off the holiday season with Bishop Ireton's Annual Marketplace! Hope to see you there. I'll be there in the morning, and Johnny (my husband) will be manning the booth in the afternoon. Gotta get my afternoon nap in. Can't start off the gift show season on too little sleep! 

Where: 201 Cambridge Rd, Alexandria, VA 22314
When: This Saturday, 9-2pm
What: Start your gift shopping early! 

This is from last year's BI event. Impromptu photo shoots are always fun! 

Wednesday, November 16, 2016

Guilty as charged. Yes, that's really jewelry in my pillfold. #theresalwaysadualpurpose #pillfold #organizer #jewelry #toiletrybag #travelorganizer #travelstyle #travelessentials #travelsmart #blog #packing #vacation

via Instagram http://ift.tt/2gh7yjv

The crew. Best supporters of lupus ever! And yes, my favorite part was having hair and makeup done. #lupus #patient #autoimmune #blog #healthcare #worktrip #womenshealth #healthtech #chronicillness #lupuswarrior

via Instagram http://ift.tt/2fXkzx4

Video shoot for lupus in Chicago. People care about our disease. Woohoo! #healthtech #healthcare #lupus #autoimmune #blog #patient #chronicillness #womenshealth #healthcareischanging

via Instagram http://ift.tt/2ggPAg0

A health tech company that wants to hear the lupus patient perspective? Yes, please! Loved going to Chicago for a video shoot. More details to come! #lupus #patient #healthtech #blog #healthcare #technology #chronicillness #womenshealth #autoimmune

via Instagram http://ift.tt/2fVkh7l

Monday, November 14, 2016

Love and Laughter, despite lupus. Why a lupus support system is essential!

I like to think Johnny and I have a fairly simple "No Food" policy in our bedroom.

There are really only three exceptions:

1) When I'm pregnant

2) When I'm in a lupus flare

3) When there's a dark chocolate emergency

The nausea of pregnancy is understood and expected. And chocolate is, well, chocolate.

But it's those flare-filled mornings when I can barely move that I'm most appreciative of a bed side snack. Thankfully, those days have been few in number over the past couple of years. But I remember all too clearly the days when I had to allow those heavy hitting medications (which must be taken with food), to kick in before I could get out of bed. I'd wake up 20 minutes early, take the meds with food, and then lie there in pain, waiting until they took effect. I literally couldn't move. It was painful enough just to move my jaw to chew and swallow. In fact, in the pre-Pillfold days, Johnny would set out my pills and snack the night before. Opening my bedside drawer and unscrewing a series of pill bottles were tasks too impossible to even consider.

As for the snacks I kept bedside, I could never go wrong with a couple of firm, crisp gingersnaps for the nausea. And for the medications that brought their own form of nausea, if taken on an empty stomach, a pack of peanut butter crackers usually did (and does) the trick.

But unbeknownst to little old me, both selections were extremely loud snacks. And apparently disruptive. And yes, even when nibbled quietly in one corner of the bed.

Or so I've been told.

It was one lazy Saturday morning, during my second pregnancy, when I discovered the truth about my ill-chosen snacks. As I did most mornings before Johnny woke up, I quietly slid open my bedside drawer, and pulled out my cookies. I innocently and oh-so slowly untwisted the crisp, crackly package of gingersnaps, and removed two or three from the sleeve, twisting and maneuvering the plastic as I went. I then proceeded to slowly nibble one cookie after another, cracking each sweet, rock-hard morsel against my teeth.

It was then that my husband took a stand.

Johnny woke up, and exchanged a few not-so-pleasant words with, not me, mind you, but with my gingersnaps. Aghast, I asked if he could hear my nibbling. He guffawed, and said unequivocally, yes. Incredulous, I asked if he could really hear me, even when I turned my head the other way. He smiled, and asked me to kindly hand him the sleeve of cookies. He then proceeded to demonstrate just what it sounds like to lie next to a person eating a gingersnap in bed. (It really is quite loud.)

Instantly, I had a bevy of questions for him: "Has it always been that loud? Has the plastic always crinkled so crisply? What about when I eat a gingersnap in one bite? Is it better? Was it this disruptive during my first pregnancy?"

And then I just kept going: "Are the peanut butter crackers as bad? Is the clear thin plastic as loud as the white thick plastic? Can you hear me chewing, even if I get under the covers, like this?"

He assured me that the answers to all of the above were yes, adding that those little packs of peanut butter crackers made more noise than an entire box of gingersnaps. (Who knew?)

I then said something like, "But, I don't understand. I've been doing this for so long...for like, 10 years." And he said, "I know." We then looked at each other, smiled, and burst out laughing. We laughed so hard we cried.

All of those mornings of nausea. All of those flares. All of those cookies and crackers.

These are the moments when I'm reminded why I've been able to withstand the crushing blows that lupus has dealt over the years, Why I've been able to laugh when I've wanted to cry. Why, on a particularly bad lupus day, when my joints are aching and swollen, when I'm tired and despairing, I find the strength to carry on. It's because of the loving, supportive, accommodating, honest, humorous-filled relationship I have with my husband. One that is stronger than the crippling symptoms and side effects of any disease. 

The years of sickness. The years of sacrifice. The years of laughing and loving, all despite lupus.

In fact, there's a scene in a movie that makes me think that lupus may have given us an advantage:

A young woman has married what seems like the man of her dreams - smart, successful, devoted. But early on, she realizes the privileged, pampered lifestyle with which he'd grown up is driving them apart. (Turns out he is also spoiled, and self-absorbed.) She knows she's made a mistake, but can't understand why she'd been so naive. So she turns to her mother for advice.

Her mom thinks for a moment, and says, "I don't think you ever really know someone until the chips are down. Maybe the chips have never been down for [your husband.]" And then she says something like,  "Maybe that's not such a good thing."

While I can't vouch for that fictitious couple, I can promise you this - the chips have definitely been down for this Gorman duo. And then they've somehow fallen even further. But our marriage is stronger, no doubt, because of what we've endured. Johnny has seen me through my very worst moments in sickness and health, and I've watched him embrace his role as caretaker. He's held my hand through every bout of illness, tightening his grip with each flare. His kind and thoughtful nature is evident each and every day. But when lupus attacks, it's his caring, nurturing, empathetic heart that absolutely shines. To this day, he welcomes his role as nap enforcer, and strives to help me keep my disease in check.

I know the kind of person he is. I know what he's made of. I know what we're capable of withstanding.

He has made a monumental difference in my life with lupus, and that is why a support system is such an essential part of life for any lupus patient. It's like built-in armor that allows you to keep putting one foot in front of the other. It's a spouse, a sister, or a close friend who allows you to cry when you need to. It's a trusted co-worker, or fellow lupus patient who gets you to laugh when you didn't think you could. It's that love and support that remind you that you're worth something, despite lupus.

They are the ones who care for us so deeply, despite our swollen joints, horrific pain, devastating hair loss, and failing organs.

And yes, despite the crunch of a cookie or cracker.

Tuesday, November 8, 2016

Napping and lupus: A New Strategy, and 4 Reasons Why We Should Rest First!

About a month ago, I came across several articles in the news, each questioning the effectiveness of the health tracking devices and wristbands that have flooded the market over the past few years.  I've never used one myself, but I am surrounded by friends and family who rely on them daily.

Do they actually work? Do they help people stay in shape, reach their exercise goals, or lose weight? I don't know. But if the device is putting an emphasis on moving the body, and encouraging people to do more than they would, it has to be a good thing.

So if it's working, I say keep at it. If not, it may be time to lose the arm candy, and try something new. I suppose the real challenge is identifying when it's time to switch up your strategy.

As I read these fitness articles back in September, I realized I had my own strategy to overhaul - a sort of "napping intervention", if you will. My daily, afternoon nap, a ritual on which I have relied for years to help manage my lupus symptoms*, was getting short-changed, and it was time I took notice.

Having settled into life of two school aged children (my previous 'back-to-school' post found here), I was thoroughly enjoying my newfound free time between 8am and 1pm each day (one o'clock being the start of said afternoon nap.) But breaking for that nap took willpower. I was like a kid in a candy store - I wanted to do everything, all at the same time, right up until the last possible second. Most days, I would plan to work like crazy until 1pm, with the intention of stopping at exactly 1:01pm so I could dive into bed, sleep for two hours, and wake up by 3pm, just in time to pick the kids up from school.

But 1:01 would come, and I would keep working. 1:15 would come, and I'd snooze the alarm I'd set on my phone (because I just knew I'd need a back-up reminder.) Soon enough, I was consistently pushing the start of my nap to 1:45 or 2pm, with no wiggle room on the other end to catch up. With kids to pick up, homework to supervise, after-school activities to manage, and an evening ahead of me, my measly nap of an hour and change was proving grossly insufficient.

So my strategy had to change, and I knew it.

I thought about my options, and brainstormed ways to force myself to stop working (or erranding, or whatever I was doing) and go to bed. How could I guarantee that I would fit in my required two hours of sleep? How could my nap become non-negotiable in my mind?

And that's when I decided to listen to the advice I've given others so many times in the past:
Put your health first, and everything else second.

When applied literally, that means that I have to NAP first, and WORK second.

So instead of working madly up until 1pm (or whatever time that really ended up to be), I now work until 12 or 12:30pm, grab a quick lunch, and hop off to bed. I then wake up refreshed almost two hours later, usually between 2 and 2:45pm. Some days, I have a full hour before I leave to get the kids. Other days, I only a few minutes. But in either case, I get the sleep I need, and everything else comes second.

Over the past month, I've seen several benefits to my new work/nap strategy:

1) Better Productivity:

Without a doubt, I work better when I'm rested. (Don't we all!?) So by transferring a chunk of my work time to after my nap, rather than before, I've instantly tapped into a more productive time frame for myself. I'm always full of energy, and my work ideas are flowing directly after I nap. So I'm now maximizing my ability to focus on projects and get things done. My old strategy (of working right up until my nap time, if not beyond) had me functioning well into the onset of my afternoon fatigue - which is a total waste of time. So the time shift makes for a double win!

2) Less Anxiety:

Because I'm allowing myself ample time to nap, I no longer have to rely on an alarm to wake up. There's no pressure looming at the end of my nap, and no deadline to meet. And waking up on my own is a glorious feeling. I no longer have to tell myself to "nap hard and fast" as with my old routine. I can get into bed, and let my mind naturally fall asleep, rather than flooding it with thoughts of, "Fall asleep fast! You only have 70 minutes! You need your sleep! You're already running late!

3) Improved Quality: 

Now that I'm allowing almost 3 full hours from the time I start my nap to my next hard deadline (the 3pm school pickup), I'm able to get the extra rest I need, when I need it. My typical nap is an hour and 45 minutes. But every once in awhile, I blow through 2 hours, and wake up two and a half to three hours later. Guess I needed the extra sleep, huh? Could that have happened with my old "race to the finish" strategy? Was I allowing myself the extra recharge when and if I needed it? No way. I barely had time to freshen my breath before dashing out the door!

4) Quieter Inner Critic: 

Because I now consistently put my nap first, my overachieving, perfectionist self has had to accept that "this is what we do now". I no longer have to haggle with my inner critic - struggling to resist the temptation to complete that one last thing before my nap. I know whatever it is, it can be done when I wake up. I know it must be done when I wake up. I no longer feel like I'm sacrificing something to nap. I'm merely postponing it until after my one o'clock appointment (with my pillow) has been accomplished. (Once a type-A, always a type-A!)

In an upcoming post, I'll expound on this idea of postponement. It's amazing what a couple of hours will do to a to-do list!

*NOTE: My daily nap has been essential to keeping my lupus activity at bay for over 10 years now, and allows me to get through each and every day with energy to spare. It has evolved over time, and you can read more about my beloved naps here.)

Friday, November 4, 2016

Praise for GoodRx once again: Putting Plaquenil pricing in its place. (Have I mentioned how much I love saving money on prescription drugs?!)

Just finished up a phone conversation with the folks at my local CVS pharmacy, and had to share my success using GoodRx again!

I've been a fan of GoodRx for awhile, but when they save me $70 on one 30-day prescription, I can't help but rejoice. They continue to deliver on their promise to save me money on my medication, so I am happy to spread the word. Here's what happened:

I needed to refill my Plaquenil for the month, and chose to try CVS, because my GoodRx app indicated that they had the best pricing at the moment. When I called, CVS first quoted me $205 for the month's supply of Plaquenil. Yikes! But I didn't lose hope, as I had plans to use my trusty GoodRx coupon that I had on my smartphone. I gave the pharmacist the code information over the phone, and presto! The price dropped to $35, as advertised on GoodRx. That's a savings of $170! Incredible!

Here's the even sweeter back story:

The last few times I've filled this prescription, I've done so at my local WalMart, because my GoodRx app indicated that they had the best pricing (which was $105 at the time, compared to Costco's quote of $187, where I'd filled it before that)...so I went with the $105 at WalMart.

But I made a note to myself to check GoodRx before refilling, because I know the price of this drug continues to fluctuate.

So just a few days ago, I pulled up the GoodRx app, typed in my drug name and dosage, and there right at the top was the $35 CVS price, just waiting for me to snag. (WalMart was still listed at $105, though Costco has dropped to $79.)

When I called today, the first CVS technician I talked to was doubtful that the $35 price would be correct. But I persevered, and said I had quite a bit of luck with the savings, and would appreciate if she would go ahead and switch the prescription from WalMart to CVS. I'm so glad she did, because her associate called back just moments later, we exchanged the GoodRx coupon info, and now here we are - at the fine, fine price of $35.

So by pulling up an app, making a phone call, and simply driving less than a mile in the opposite direction, I'm going to save at least $70, if not more, depending on how you slice it!

So anyone out there filling prescriptions on regular basis - do yourself a favor and check out GoodRx today. Here's the page where you can find out how GoodRx works, and here's a direct link to download their app, which makes it super easy to check pricing while you're out and about. And here's a previous post I did about GoodRx.

While there are no guarantees that the pricing will be exact, I personally have saved more than a thousand dollars since I started using it. I hope you have success, too!