Tuesday, March 28, 2017

"Can I nap yet, or are we still playing together?"



Lupus in 60:  In many cultures around the world, an afternoon nap is part of everyday life. It's accepted, and expected. With a chronic illness like lupus, a nap can be absolutely necessary.

I used to fight the need to rest every afternoon, even though I was losing half my day to fatigue.  Stopping to rest mid-day seemed inconvenient, and made me feel inadequate and totally inefficient. But you know what's really inefficient? Me, pushing through debilitating fatigue, making mistakes, and taking three times as long to do something because of exhaustion.

So I decided that the energy I put toward resisting a nap needed to be redirected toward figuring out how to make one happen.  Tweaks to my schedule at work; getting help on weekends at home; making changes to my daily routine - I forced myself to find time to nap.  Armed with proper rest and time to recharge,  I worked faster, made decisions quicker, and had energy to think clearly all day long. I could make evening plans. I had on energy until bedtime. In short, I could have a life, despite lupus.

In fact, I had figured out how to make a nap accepted and expected in my own little corner of the world.

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Wednesday, March 22, 2017

Monday, March 20, 2017

So bold! 🌊🌊#lupusin60



Lupus in 60 Sec: Diagnosed with lupus in my mid-20's, I used to think being brave meant pushing through my pain, denying people's help, and hiding my struggle. Today, I know that bravery means exactly the opposite. Successfully managing a life with lupus means you're bold enough to accept help when you need it, brave enough to admit you hurt, and gutsy enough to speak up about the disease. Take that, Lupus. You've got nothing on me! #blog #inspire #makewaves #makeadifference #waves #martinique #vacation #lupus

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Tuesday, March 14, 2017

Feedspot's Top Lupus Blog - so appreciative that Despite Lupus was included!



Wow - what an honor!

I'm thrilled to have been included in Feedspot's  2017 Top Lupus Blog list. Thanks so much to the editorial and expert review team for choosing to feature Despite Lupus in the line-up. You can see the rest of the Top Lupus Blog list here. 

My fellow awardees host some of the best health blogs on the internet, so it is with much gratitude that I accept the award. This blog is extremely therapeutic for me - and has been since I started writing in 2009 (yikes!). I'm so thankful for those who have stuck around to see how life, despite lupus is turning out.

As I continue to broaden the Despite Lupus community into other social media platforms (like my current favorite, Instagram!), I look forward to intermingling my traditional format with shorter, more concise posts (accompanied by an IG picture.) Who isn't a little time-conscious these days, right?

So keep an eye out for a new series of posts - aptly named "Lupus in 60" (#lupusin60). I'll keep my thoughts, quips and comments to a brief 60 second read...helping me to remember that living well with lupus doesn't have to be complicated. Sometimes, a simple reminder, short and sweet, may be just the thing to keep us on the track of living well, despite our illness!




Sunday, March 12, 2017

Lighter later.


Means my after-dinner pills are no longer taken by candlelight. I ❤ #daylight savings.

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Friday, March 10, 2017

Moment in the Spotlight: Loved working with Outcome Health on their Patient Video!

A few months ago, I flew out to Chicago to shoot a Patient Experience Video, working with the folks at Outcome Health to launch their re-brand and showcase the latest advancements in their point-of-care technologies. I blogged about the company (then called ContextMedia) awhile back, when I encountered one of their handy exam room tablet at a doctor's visit. You can read and see pics of the technology I blogged about here.

I posted a few shots from the production once it wrapped in November - here and here. I had a great time working with the Outcome Health team during the process. They were relaxed, super accommodating, and were genuinely interested in hearing how and why a patient's positive experience in a doctor's office can make a difference in their overall healthcare. Their name "Outcome Health" really says it all.


Want to check out my brief moments in the spotlight?

Click here to hear what I had to say about the exam room tablet on their Product landing page. Just click "See Our Impact" once you're there.


And the patient and doctor experience videos we shot turned out great, too. You can see my two snippets by clicking here - click "Experience the Outcomes" for the full short, and then click on my Profile pic to see my personal patient video.

While I didn't get a chance to work alongside the other patient or doctors directly (only one starred dressing room, so we had to take turns :), the videos work really well together. They show what an impact these exam and consultation room technologies can have. The doctor-patient relationship will be changed forever!



In addition to their Digital Wallboard which you see me with here (my favorite!), Outcome Health also developed an infusion room tablet, specifically for folks on treatments like lupus patients' beloved Benlysta. They even have a dedicated space within their Chicago office (which is one of the best work spaces ever) where they've recreated realistic point of care scenarios in which their technologies would be used, one of which is complete with infusion chair.

As for the view from their office, I think I know where they get their inspiration:


And somewhere to the left or right of me is the In-house Coffee Bar. Clearly, Outcome Health has figured out how to keep its employees motivated, inspired, and ready to innovate. It really shows when you're touring the office...and is evident when you look at the amazing strides they've made in making the doctor's office a more engaging, educational space for patients and doctors alike.

Love this article from The Muse about Outcome Health. A snippet is below, but be sure to read the whole article:

Named a Fortune 20 Best Workplaces in Healthcare, Crain's Best Places to Work, and Inc’s Fastest Growing Private Companies in 2013 and 2014, Outcome Health continues to make massive impacts in the health industry. Since its launch in 2006, the broadcast media company's sophisticated healthcare digital technologies have proactively helped medical professionals educate patients on serious conditions—and take control of their health outcomes.

Bottom line, Outcome Health has outstanding products, wonderful vision, and a great mission for bringing information and intelligence to the health decision making process. Wouldn't you love technology to help you and your doctor be more in sync during an appointment?

“Outcome Health's mission is to make sure that patients are staying engaged and inspired in the waiting room. Outcome Health is where digital media and healthcare intersect.”

Below are a few snippets about the company and their history:

Outcome Health's vision is to have a ubiquitous presence of our technologies in every consultation room and to bring actionable information and intelligence to every critical healthcare decision in the world. This includes a goal of having a presence in 70% of all outpatient practices in the US by 2020.

Outcome Health develops healthcare technologies to deliver better health outcomes and impact the human condition positively. Founded in 2006 by Rishi Shah and Shradha Agarwal, the company has doubled each year in its scale of technology implementation at outpatient health care facilities, business partnerships with global life sciences and medical device companies, product innovation and team growth. Decision platforms such as digital anatomy boards, interactive educational tablets and mobile connectivity in consultation rooms deliver measurable patient outcomes through actionable intelligence on conditions, treatments and lifestyle changes to improve the quality of life. To find out more about Outcome Health, click here.

Thank you, Outcome Health, for involving me in this project. I look forward to working with your products for many years to come!

Wednesday, March 8, 2017

Can you hear my heart melting?? ❤❤


My six-year-old Bernadette's portrait of me. As I was posting this, an order for our red floral Pillfold Kennedy (named after HER) came in. Karma!

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