Saturday, December 10, 2016

Your 2016 Lupus Gift Guide: 12 Great Gift Ideas for Someone with Lupus or Chronic Illness

Thanks to courageous celebrities like Selena Gomez and Nick Cannon, lupus has made headlines more this year than ever before. That means more people are learning what it really means to live with a chronic illness. So there's no better time than this Christmas to give a gift that shows you get it. We've put together a 2016 Lupus Gift Guide, so you can choose from one of our 12 positively perfect gifts for people with lupus or another chronic illness.

And with just 2 weeks of shopping left until Christmas, it's time to get serious about stuffing those stockings!

1) Stylish Eye Mask: Rest is so important with an auto-immune disease like lupus. What better way to ensure that much-needed sleep counts than with a swanky eye mask. We love the variety of colors of the Escape Eye Mask from HappyLuxe.

2) Infinity Pillow: Ideal for mid-day fatigue, one of the most common symptoms of lupus, the infinity pillow is perfect to pack along for the ride. This one from Huzi would be great for the office, or anytime you're on the go.


3) Gloves with Tech Touch: Keeping your hands warm is essential when you have Raynaud's syndrome, which often accompanies a disease like lupus. Gloves stay on while using a smartphone, allowing fingers to stay warm and toasty. We love the great detail on the Echo Touch Ruffle Vent Glove.


4) Cold Hands Warm Heart mug - Pair the tech touch gloves with a cute mug with a catchy saying, and those whose fingers turn colors in the cold (due to Raynaud's) will love you for it! This cute Kate Spade mug is available from Barnes and Noble.

Kate Spade New York Cold Hands Warm Heart Thermal Mug 16 oz.

5) Tea Set with French Press and Couva - Let's keep the theme going with an adorable hot beverage set.  For those fatigued-ridden, joint-pained days when life with a chronic illness isn't going well, a cup of hot tea can seem like the best medicine. Our favorite tea flavor? It's a tie between Stash's Peppermint and Licorice, both of which you can snag in this fabulous Stash Tea Gift Set.  Add a small French Press like this one from For the Chef to keep the tea flowing, and use a Couva Cafetiere cover to keep it warm and delicious for hours, and you have a gift that will last all year long!

(Note the Couva ships from the UK, but shipping costs are reasonable, and the owner/inventor happens to have lupus, too!)

Image result for stash licorice tea
Image result for couva coffee couture

6) Sassy Pair of Slippers: No part of the body is spared when it comes to the pain and swelling that lupus unleashes, and the feet are no exception. Add that many can become home bound when lupus is active, and there's a perfect reason to brighten those flare-filled days with a pair of cute slippers. We say skip the beige, though, and choose something with a little flair. Just make sure they have outdoor soles, and are slip-on for easy on and off.

The Marci Stone and the Sienna by Pretty You London are adorable!

Image result for sienna slipperImage result for marci stone slipper

7) One-Line Journal - Short and sweet, this one-line journal allows for daily reflection, even for those whose joint pain impedes the ability to write. You'll also be able to compare entries year to year, which is great for charting mental and physical well-being on an annual basis. This one from IndieBound is perfect, and their website lets you find a bookstore nearby with the journal in stock!

  One Line a Day Cover

8) Silk Pillowcase or Silk Pajamas: With lupus, skin sensitivity and hair loss issues abound. So finding a way to protect hair and skin during sleep is vital. Dermatologists agree that a silk pillowcase can make a difference. We love our Betty Dain Silk Pillowcases, which you can get at Sally Beauty. Add a silky set of pajamas, and the difficulties of managing joint pain and swelling while maneuvering in and out of bed are greatly minimized.

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9) Cute, Fitted Sun Protective Tee - Many with lupus experience sensitivity to the sun, which can limit outdoor activities and restrict physical activity. But sun protective clothing can help. Coverage is key, so anything 3/4 to long sleeve is ideal, and remember to make it cute. The cut and style don't have to scream "sun protected". We love the way this long sleeve tee from Sungrubbies fits!

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10) Cute Pill Organizer -  For most people diagnosed with lupus or another chronic illness, a lifetime a medication is a given. So keeping pills organized, safe, and secure becomes a daily chore. Make it a stylish one, and you give any pill taker an instant lift to their daily routine. Any stylish pill organizer is an upgrade from the clunky, plastic drugstore version, but we can't help but favor our own 7-day weekly fabric Pillfold from Sara Gorman's Pillbags.

11) Charitable Donation -  We speak from experience when we say that a donation to a lupus charity, in the honor of someone with lupus, is one of the most heartfelt gifts one can give. In fact, it may be the most personal and sincere gift on our list. For more information, you can find your local lupus charity here. When you make the donation, be sure to include your honoree's name, and most charities will send a note alerting the honoree of the donation. Be prepared for tears!

Image result for in honor of

12) Lupus Book - Because lupus is a chronic, ever-evolving illness, there's always something new to learn on the subject. Consider a book about the disease - and maybe order one for yourself while you're at it! The Lupus Encyclopedia is a fabulous resource book, or choose a patient-authored book like Fabulupus: How to be Young, Successful, and Fabulous (with Lupus), or our very own Despite Lupus: How to Live Well with a Chronic Illness.

Friday, December 9, 2016

This same weekend last year was a tough one. Miss this guy everyday. "Nothing changes really about love." --Alice Munro #love #pugsofinstagram #pug #oldbuddyoldpal #babydar #tedddybear #blog #alicemunro #dearlife #doglover

via Instagram

Karate Health spotlight: Managing a lupus flare. Happy to have joined the conversation!

Had a chance to check out Karate Health's Lupus Corner yet? It's a great way to read about all things lupus. The topics are organized well, and the layout is easy to navigate. And the information shared is spot on. Many of the articles feature a poll or quiz question, which is always a fun, easy way of taking stock of your disease. It's a great new resource that I plan on using often.

Thus, I was happy to share my two cents to Lupus Corner's latest post on managing lupus flares. Thanks, Karate Health, for reaching out for my input, and for sharing the article entitled "Managing a Lupus Flare: Advice from Experts". You can read it here! 

Managing a Lupus Flare – Advice From Experts
Managing a Lupus Flare – Advice From Experts

Wednesday, December 7, 2016

#blog #pillfold

via Instagram

Lupus lifestyle rule #273: Three strikes, and you're out!

One day last month, I found myself feeling a little crummy. Not like "lupus flare" crummy, just a little off.

I woke up in the morning, feeling relatively rested. But I noticed that the glands in my neck and under my arms were swollen. Odd, I thought. They weren't swollen yesterday. I decided to keep an eye on them, as swollen glands have always been an indication of disease activity for me. Even my first flare when I was diagnosed included swollen glands. I've grappled with them ever since, even undergoing a biopsy, which you can read about here. I made a note on the pad by my bedside. "Swollen glands."

Next, I noticed some mid-morning fatigue, which was a bit more worrisome. I experience daily fatigue, but never until after 1pm, when I take my afternoon nap. This 10am "Can't keep my eyes open" stuff was way too reminiscent of my lupus flare days. I made another note. "Morning Fatigue."

And then, the kicker - I took my regular afternoon nap. A nice, long nap, and I still woke up tired. And you know post-nap fatigue is never a good sign. I made a final note: "Still tired after nap."

Seeing the evidence before me, I decided to take a moment and reflect. What was going on here? Was I stressed? Had I been sleeping poorly? Was I doing too much? So I thought. And thought some more. And then I starting pieces things together.

First thing that caught my eye as I stared at my list of symptoms was my pillfold. That's when I remembered that the pharmacy hadn't been able to fill my CellCept prescription promptly. And then I'd forgotten to pick it up the day it was ready. And then they were closed on Sunday. And then yesterday had been too crazy to fit in a trip to the pharmacy. So to date, I'd missed almost 5 days of Cellcept. Yikes. I made another column on my paper, and wrote: "Missed medication."

Next, I remembered that my nap from the day before hadn't been sufficient (because, as mentioned, yesterday had been crazy.) Guess I was paying for my choice to skimp on rest. I'd hopefully make up for it during my nap today, but I made another note: "Nap too short."

Lastly, I thought about what I'd been eating over the last few days. And it hadn't been much. With the craziness of the previous day, (and maybe even a reduced appetite because of the symptoms), I'd skipped breakfast, and barely had lunch. Today hadn't been much better. With the mid-morning fatigue, I'd just wanted to sip hot tea. My final note: "Too little food."

So things were beginning to add up:

I was tired, under-medicated, and hungry.

A perfect storm to create the symptoms I was experiencing.

Had it just been a less-than-stellar nap, I probably could have bounced back after a good night's rest and a solid nap. I bet even a shortened nap, combined with the lack of fuel (read: food) probably could have gone unnoticed. But add in the third factor of missed medication, and I was on the edge of flaredom.

Armed with this information - I started undoing my mistakes. I hightailed it to the pharmacy, taking a bottle of water with me so that I could take a dose of Cellcept the moment I picked up the prescription. Next, I made plans to get in a well-balanced dinner. I wasn't up for meal prep, so we made plans at the restaurant around the corner. Lastly, I checked my schedule for the next couple of days, making sure that my nap wouldn't be compromised. I had to rearrange some work projects, but it was worth it. I emerged flare-free, and my glands returned to normal (except for one, which will be discussed at my upcoming appointment.) Had I not taken stock of my symptoms, or made immediate accommodations to make sure I was putting my health first, things might not have turned out so rosey. I'm so glad they did!

Need to track your own symptoms to get a handle on your disease activity? Try out a version of my chronic control spreadsheet. It did wonders for me when I was first diagnosed. You can read about it here and here.