Anyone who knows me knows that I’m not one to rely solely on prescription drugs to treat my Lupus-related ailments (or any ailments for that matter). If I did, good grief, I’d literally be walking around in a zombie-like state every day. Nope. Instead, I take only what I absolutely have to, and thankfully that’s not as many as some of my Lupus sisters (and brothers) out there.
In place of the “extras” that doctors offer to prescribe, I’ve spent lots of time trying different treatments, therapies, and products as well as reading lots of articles and books, to find what might complement my Lupus medicine and help me manage the disease my way. I’m not saying that what helps me will definitely help you, but it might. Right? So, here’s a list—organized by the categories of my Live a Beautiful Life with Lupus framework—of what helps me get through the day or night or whenever Lupus wants to do battle:
To Soothe the Lupus Body
Snoogle
The full-size body pillow that helps you sleep or rest by taking the weight off painful joints in your back, hips, neck, and shoulders. Yes, it was designed for pregnant women, but it’s been a great help to me and my Lupus situation.
Bed Buddy Body Wraps
I own three of these microwavable all natural heating pads. They provide moist heat that I can wrap around my aching body parts, helping with joint and nerve pain. They’re made of felt filled with beans or rice or some kind of grain that stays warm for a long time—long enough to drift off to sleep.
Solbar Avo Sunscreen
Although I’m told that no sunscreen is better than another, I use what my dermatologist said would be effective for me as a Lupus patient living at a high-altitude where the sun is especially harsh. The brand that I use ever since he gave samples of, is Solbar Avo. It’s a broad-spectrum sunscreen that comes in multiple SPFs, ranging from 30 to 50. Ample protection for the potentially devastating effects of the sun on our Lupus bodies.
SunGuard Wash In Sun Protection
Adding sunscreen protection to your clothes might sound like a bit of overkill, but when you’re trying to protect your body, who’s to say what’s too much? This wash-in sunscreen from Rit SunGuard is amazing stuff that’s not always easy to find, but worth the effort.
Tens Unit Handheld Electronic Pulse Massager
My husband bought this for me to help supplement similar treatment that I receive at my physical therapist’s office. Because my insurance only covers so many physical therapy visits every year, we have to spread the visits out and only attend once a week. Using this, I get longer relief time from the muscle and joint pain.
Waterlogged App
As Lupus patients, we all know the importance of drinking enough water each day to stay hydrated; but how many of us really do it? I always thought I was pretty good about it. But, no. Not really, until I downloaded the Waterlogged app for my iPhone. (Sorry, it’s not yet available for Android.) This app makes sure that I meet my water-chugging goal of 64 ounces each day with its easy-to-record on home screen with multiple volume options (ounces or mL). It comes in a free version, and a paid one for $3.99, which includes reminders to drink up throughout the day. (Update: The authors of this app upgraded it in December 2015, and changed the whole interface. Grrr! It’s still a good app, but many of its users feel taken aback by its recent change.)
Wigs.com
For those of us with Lupus who suffer with hair loss, the option of wearing a wig might be a bit scary. It was for me. But as my hair thins more and more from repeated use of medications, I’ve found that wigs gave me more confidence and self-esteem. And freedom, too, from having to work my hair style in order to cover the bald spots. What a pain. So now, even this non-fashionista can look stylish. Although there are literally hundreds of wig websites out there, Wigs.com is a great place to start if you’re a beginner. They’re supportive, reputable, and affordable. Sure, they have top-of-the-line, very expensive wigs, but there are plenty of reasonably priced others to choose from. OH, and one other reason I love this site, returns are easy if you don’t like the way it looks when you try it on at it home.
Thrive Market
If you’re like me, having a reliable place to order food online when you’re not up to going grocery shopping because of Lupus body, then have I got a grocery store for you. It’s called Thrive Market, and this online grocery store has some really great options for those of us with Lupus-related food sensitivities, like gluten and dairy, and those of us trying to avoid inflammatory foods. They sell natural and organic products at prices that are way better than what I can find here in Reno. It probably holds true even in you live in a major city. So, you have to become a member and pay an annual membership fee, but I’m here to tell you that it’s worth it.
National Sleep Foundation
This educational association shares lots of advice and information about how to get a good night’s sleep, even for those of us living with chronic illness and pain.
“How to Pick Your Perfect Mattress”
An ifnformative WebMD article by Lisa Zamosky
Academy of Nutrition & Dietetics
See “Find an Expert” link on right sidebar
American Physical Therapy Association
See “Find a PT” on top navigation bar.
AirNow
This website helps you find out the air quality index where you live or travel. Very important for the “Breathe Fresh Air” habit.
American Massage Therapy Association
This website helps you find a certified massage therapist in your area.
Anatomy of An Illness
A book by Norman Cousins
New York: W. W. Norton & Company
“Laughter is the Best Medicine: The Health Benefits of Humor and Laughter”
A HelpGuide Article by Melinda Smith, M.A., and Jeanne Segal, Ph.D.
To Strengthen the Lupus Mind
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness
By Jon-Kabat Zinn
New York: Bantam Books
The Power of Positive Thinking
By Norman Vincent Peale
New York: Prentice Hall, Inc.
Autogenic Training (MP3)
By Dr. Lynn Johnson
Forgive for Good: A Proven Prescription for Health and Happiness
By Dr. Fred Luskin
New York: HarperCollins
“Stress Relief in the Moment Using Your Senses to Quickly Change Your Response to Stress”
A HelpGuide Article by Jeanne Segal, Ph.D., Melinda Smith, M.A., and Lawrence Robinson
“How to Create Your Medical Records Notebook”
This is an article that I wrote and posted on the website for my book, Live a Beautiful Life with Lupus.
Doctor Visit Form
This is a PDF document that I wrote and offer on the website for my book, Live a Beautiful Life with Lupus.
American Psychological Association
This site has helpful information for dealing with and managing the emotional issues of living with a chronic illness.
To help you the “Learn about Lupus” and “Connect with Your Doctor” habits:
American College of Rheumatology
Lupus Research Institute
Lupus Foundation of America
Alliance for Lupus Research
S.L.E. Lupus Foundation
American Autoimmune Diseases Association
x
To Nurture the Lupus Spirit
Center for Mindfulness in Medicine, Healthcare, and Society
Located at the University of Massachusetts Medical School, this center was founded by Jon-Kabat Zinn, author of Full Catastrophe Living referenced earlier, where they offer meditation workshops and other education opportunities.
Inspiring Creativity: An Anthology of Powerful Insights and Practical Ideas to Guide You to Successful Creating
Edited by Rick Benzel
Plaza del Ray: Creativity Coaching Association Press
The Artist’s Way
By Julia Cameron
New York: Penguin/Putnam Publishers
Trust the Process: An Artist’s Guide to Letting Go
By Shaun McNiff
Boston: Shambhala Publications, Inc.
Feeling Good: The New Mood Therapy
By David D. Burns
New York: HarperCollins Publishers, Inc.
Additional Resources
Arthritis Foundation
Office on Women’s Health
National Heart, Lung, and Blood InstituteNational Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institute of Neurological Disorders and Stroke
National Institute of Diabetes and Digestive and Kidney Diseases
National Institute of Allergy and Infectious Diseases
