Friday, July 22, 2016

Nick Cannon on #Lupus: His best interview yet! #nickcannonlupus #webmd

I love everything about WebMD's latest interview with Nick Cannon. He's so positive and upbeat - but doesn't shy away from the fact that he's had to make a ton of accommodations in order to live well, despite lupus. I think he (and Selena Gomez) are great role models for lupus warriors. Just like us, they've had to rework their lives to make room for lupus. They've made changes to their lifestyle, been forced to take major medications to get their disease activity under control, and their careers have been affected (temporarily) to allow them to focus on their health. But are they still striving to be the best they can? Are they continuing to persevere, despite their illness? You better believe it! 

In fact, I think the subtitle of the article says it all: : 

Nick Cannon: A Warrior in the Fight Against Lupus

He's changed his lifestyle, not his work ethic, to manage the autoimmune disorder.

Here at Despite Lupus, our mantra has always been that you can still be successful, fulfilled, and challenged, while simultaneously accommodating for the disease. Our lifestyle changes don't have to effect our spunk, our drive, or our personalities. Yes, it can be hard. Yes, it can take time. And yes, there is some serious effort required to come up with strategies for managing life with this disease (hence my 1100++ blog posts!). But it's a task I've come to embrace, and I hope you will, too!

Here's my favorite quote (particularly the last line) from the article, but be sure to read the whole thing here. Thanks, #WebMD for featuring such a great lupus spokesperson! 

"The biggest challenge [Cannon] continues to face: getting enough sleep. “My doctor demanded that I get at least 6 hours and try to stretch it to 8, but I was a guy who was getting 0 to 2 hours some nights,” says Cannon, who is also chief creative officer for RadioShack. “I take pride in how hard I work, but I’ve learned that my symptoms flare up when I overexert myself.”But his new life has been tough. “Making real changes -- it takes time and it isn’t the easiest thing to do. A lot of people make lifestyle changes for a certain period of time to get in shape. I’m doing it to stay alive.”

Tuesday, July 19, 2016

The Bargain Bin of Pillfolds - Now available on Ebay! #pillorganizer #iloveoutletshopping

Here at Sara Gorman's Pillbags, we pride ourselves on superior quality and construction. But every few shipments, a pillbag arrives from our manufacturer that's not quite up to snuff. We pull it from our inventory, and mark it as slightly flawed.  It could be a pillfold pouch that's sewn smaller than we'd prefer, or a magnetic closure that doesn't "snap". Whatever the case, the minor defect doesn't keep the pillbag from doing what it does best - organizing and toting your pills in style! 

Thus, we've decided to start selling those flawed pillbags on Ebay, for a significant discount. The flawed pillbags are sold New With Tags (Ebay lingo!), come in our signature packaging, are shipped directly from SGP, and all flaws are listed in the Ebay description. 

Looking for a bargain? Want a back-up pillbag? Need to take a third (or fourth) dose of medication during the day? Or maybe your medication regimen requires a minimal amount of pills - and the size of the pillfold pouch isn't an issue. For whatever reason, take a moment and check out our new Ebay listings by clicking here

And let me know what you think. I always appreciate your feedback!

Friday, July 15, 2016

Thank you, Lupus Now, for including the Gorman girls in your great cover story "How Moms Manage Lupus"!

I was thrilled to be interviewed for the cover story of the summer issue of  Lupus Now, the LFA's leading lupus magazine. What an honor to take part in such a great article, titled "How Moms Manage Lupus." The editor in chief and author of the story, Jenny Thorn Palter, did a wonderful job combining the stories of the few moms interviewed. Don't our families look spectacular?!?!

The girls are thrilled with their magazine debut. It even prompted them to explain lupus to a little girlfriend the day after a copy of the magazine arrived. Spreading awareness while basking in their fame works for me!

Want to find out more about the Lupus Now magazine? Click here!

Wednesday, July 13, 2016

In the Gulfport, Florida area? Mark your calendars for 7/21 - Free Yoga class and lupus seminar!!

As a former recipient of the Charity of the Month pillbag program, I'm happy to spread word of the Lupus Foundation of Florida's upcoming seminar on lupus pain and fatigue. Linda Ruescher, Program Director of the Lupus Foundation of Florida, will be speaking, and a representative from the Sonia Plotnick Health Fund will be on hand to discuss how they can help women in FL with their healthcare needs. Christa Fairbrother, Yoga for Arthritis Instructor, will lead a chair/accessible yoga class for people with rheumatic diseases. This event is free but preregistration is requested.

Details are below. Hope you can make it, Floridians! 

Gulfport Lupus Seminar July 2016

Location:   Gulfport Library
    5501 28th Avenue South
    Gulfport, FL  33707

NameLocationStart DateStart TimeEnd DateEnd Time
Check in   07/21/2016 01:00 PM 07/21/2016 01:15 PM
Managing Lupus Pain and Fatigue   07/21/2016 01:15 PM 07/21/2016 02:15 PM
Break   07/21/2016 02:15 PM 07/21/2016 02:30 PM
Help Paying for Medications   07/21/2016 02:30 PM 07/21/2016 02:45 PM
Yoga for Arthritis-Hands On   07/21/2016 02:45 PM 07/21/2016 03:45 PM

Click here to find out more or to pre-register! 

Thursday, July 7, 2016

23andMe lupus patient video and lupus research study. Consider participating today!

Last year, I blogged about the great lupus study launched by 23andMe. I chose to participate (easy, quick, no hassle), and they are still accepting participants. You can find out more info here, or you can jump right in and enroll here. It was a great way to get involved with and support lupus research - and I was able to learn a little about my ancestry while I was at it. Cool!

23andMe recently created a video highlighting a lupus patient and her story, and I thought it was a good one to share. I love her positive spin on things. It screams "despite lupus" all over the place!!

Friday, June 24, 2016

Lupus fatigue - hitting the wall means no decision making for me!

Lupus fatigue. It can be one of the most disruptive and debilitating symptoms of the disease. When I approach my daily wall of exhaustion, typically between 1:30 and 2pm every afternoon, several things happen. One, I start yawning. Two, my eyesight starts to get blurry, and my eyes itch. Three, I struggle to articulate my thoughts, and have trouble finishing my sentences. Four, I lose track of what I'm doing (like, "I have a spatula in my hand, but what was I doing with it??") And five, I become very quiet, probably because I'm struggling to put thoughts together. For my family, my sudden, atypical silence is the primary signifier that I am fading quickly.

Because I've suffered from daily lupus fatigue for many years, I try to preempt this level of exhaustion with a daily two hour afternoon nap. Hitting the wall is a very unsettling feeling, and I avoid it at all costs. It's one thing if you've been up all night, or had a brutally taxing morning on which you can blame your fatigue. But most lupus patients would agree that the debilitating, immobilizing fatigue one feels on a daily basis is brought on by no such circumstance. It's simply lupus - where an overactive immune system causes inflammation or pain throughout the body, or another side-effects of the disease, that the body then responds to with ovewhelming fatigue. 

When I do hit this wall of fatigue - I know I'm incapable of doing several things:

Carrying on a conversation (just ask my husband)
Driving a vehicle
Negotiating anything (just ask my daughters)
Eating (because I'd rather just sleep)
Working, exercising, or exerting any significant level of energy, because physically, I can barely hold myself upright.

When I'm healthy, I can successfully manage the fatigue with my nap, as mentioned above. When I'm in a flare, or feel one coming on, I often feel overwhelming fatigue several times a day, and have to adjust my schedule to accommodate multiple rest times in the morning and afternoon.

But sometimes, like one day last week, I make poor choices throughout the day, and find myself crashing around 6 or 7pm.

I'll tell you more about the mistakes made throughout that day in an upcoming post - my lupus missteps always make for such great posts, don't they? But suffice it to say that by 7pm, I found myself drained of energy. We'd spent several hours prior at the pool, and as we finished up our evening poolside, I found that I was avoiding conversation, rubbing my eyes, and making very little sense when asked direct questions. All signs that I'd overstayed my welcome.

But in an effort to right one of my wrongs from earlier in the day (not eating enough), I thought grabbing a bite would rejuvenate me.  I hadn't hit the wall yet...and hoped that I could turn things around. Thinking I could handle the menial, routine task of ordering dinner, I went over to the poolside grill, and placed my order: a super food salad whose main ingredient is spinach.

Anyone want to take a guess as to who here is allergic to fresh spinach? Me!!!

And that's when I realized there's yet another thing with which I have difficulty when I'm approaching the wall: making a decision.

I've never ordered that salad before, and never will again (at least as long as I have an allergy.) But because I was tired, and because my thoughts were incoherent, I ordered something I could barely eat. Looking back, I think the acai yogurt dressing sounded appealing, as did the candied walnuts. But when I'm too tired to think, I'm not able to sort out impulse from rational thought, or whatever you want to call it.

Salad aside, the evening did not take a nose dive. Johnny drove us home once he witnessed the spinach incident (I wasn't really interested in eating anyway - see itemized list above), and he helped put the kids to bed, so I was able to get the good night's sleep I desperately needed.

But that dining experience, as insignificant as it may seem, explains so many instances over the years where I've flaked on decision making at various times throughout the day. Be it ordering food, choosing a movie, or voicing my opinion, I used to berate myself for my poor choices. But this was a good reminder that when I'm tired, I need to delegate the decision-making to a responsible party. I'm so thankful Johnny (and the girls, my sister, etc.etc,) are usually up to the task.  (After the fact, my sweet husband said that he would have gladly ordered for me, had he known how tired I was. I'm sure his choice would have hit the spot!)

You can read about other posts regarding lupus fatigue here. Know that you're not alone in your exhaustion!

Friday, June 17, 2016

The Pillbags have another online home -!

I'm pleased to announce that the pillbags are now available at QuinnEssentials, an adorable online paperie and boutique gift store started by a friend of mine from my old college days. She has great taste, and her style carries over to the unique gifts and small goods she's handpicked for her store. I'm totally in love with the mini heart zippered tote below, and the cupcake candle could be ordered in multiples to keep on hand for that last minute birthday gift (say I'm not the only one...). I could also go for one of everything from her Essentials Spa collection.

I am thrilled that she's included the Pillbags in her collection. You can check them out here, but be sure to browse the site so you don't miss any of her essential goodies!