Janell

Environmental factors, such as pollution, allergies, or the weather, have affected my lupus symptoms.

5/5 (strongly agree)

What environmental factors have impacted your lupus symptoms the most?

What symptoms were triggered by the environment?

What steps have you taken to combat these environmental factors?

Living with Lupus in the Real World

Jenn F.

Lacey C.

Jasrene

Sandra1961

Shan T.

Lupus Maintenance

Irene C-S

Lisa B.

Kendra L.

Kendra L.

Looking for previous Q&A Forums?

Check out all the posts here

Meggin

Chronic pain is notoriously difficult to treat with opioids, which don’t touch the root causes of the pain. How do you currently treat your chronic pain?

Virtual Reality (VR) has a track record of helping patients combat and overcome pain and may have many other applications still being discovered. Would you try VR as a form of treatment for chronic pain?

Treating chronic pain is a struggle. What treatment options has you doctor suggested?

VR might work according to the gate theory of pain. The brain is capable of blocking out the perception of pain, or cause pain. Will you discuss VR as an option with your doctor?

Bert

Chronic pain is notoriously difficult to treat with opioids, which don’t touch the root causes of the pain. How do you currently treat your chronic pain?

Virtual Reality (VR) has a track record of helping patients combat and overcome pain and may have many other applications still being discovered. Would you try VR as a form of treatment for chronic pain?

Treating chronic pain is a struggle. What treatment options has you doctor suggested?

VR might work according to the gate theory of pain. The brain is capable of blocking out the perception of pain, or cause pain. Will you discuss VR as an option with your doctor?

Noella Lew

Chronic pain is notoriously difficult to treat with opioids, which don’t touch the root causes of the pain. How do you currently treat your chronic pain?

Virtual Reality (VR) has a track record of helping patients combat and overcome pain and may have many other applications still being discovered. Would you try VR as a form of treatment for chronic pain?

Treating chronic pain is a struggle. What treatment options has you doctor suggested?

VR might work according to the gate theory of pain. The brain is capable of blocking out the perception of pain, or cause pain. Will you discuss VR as an option with your doctor?

KymK

Chronic pain is notoriously difficult to treat with opioids, which don’t touch the root causes of the pain. How do you currently treat your chronic pain?

Virtual Reality (VR) has a track record of helping patients combat and overcome pain and may have many other applications still being discovered. Would you try VR as a form of treatment for chronic pain?

Treating chronic pain is a struggle. What treatment options has you doctor suggested?

VR might work according to the gate theory of pain. The brain is capable of blocking out the perception of pain, or cause pain. Will you discuss VR as an option with your doctor?

Anonymous Lupus Warrior

Chronic pain is notoriously difficult to treat with opioids, which don’t touch the root causes of the pain. How do you currently treat your chronic pain?

Virtual Reality (VR) has a track record of helping patients combat and overcome pain and may have many other applications still being discovered. Would you try VR as a form of treatment for chronic pain?

Treating chronic pain is a struggle. What treatment options has you doctor suggested?

VR might work according to the gate theory of pain. The brain is capable of blocking out the perception of pain, or cause pain. Will you discuss VR as an option with your doctor?

No.

Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

NaNa

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Anonymous Lupus Warrior

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Anonymous Lupus Warrior

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Danielle

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Charlene

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Tina

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

V

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

How to manage depression and deal with the symptoms that take time to be diagnosed without giving up hope.

Maria C.

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I’m very reclusive so don’t do public awareness. But I made a big info sheet with cartoons and notes and pictures to go in the kitchen so anyone who visits, and my kids and grandchildren, can have a read and learn something, and remember it hasn’t gone away even if I’m OK that day.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

I think more practitioners should be taught about the emerging subtypes – including geographical differences – so they have a better understanding of the different types of presentations and don’t write patients off because they don’t fit a certain mould, and tailor treatment to fit better.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Early (first-stop) treatment/management for flares.

Anonymous Lupus Warrior

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

When I am out in public (which isn’t very often these days, honestly) and people who casually know me notice & ask me about things like my limp, swollen joints or lesions, I try to (in a sentence or two) give them an idea of what SLE is. Of course, when I was healthier, I used to have many more opportunities to spread awareness.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

I think the majority of people I come across have no real idea what lupus is, the numerous symptoms related to it, the various types of lupus, that there is still no cure for it & so very few medications to specifically target lupus. I also don’t believe that most people realize how many suffer from lupus & the wide degree of severity from patient to patient (& from day to day).

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

For 1: I would love to learn more about what current research is being done to determine the cause of systemic lupus. For 2: I feel like I still have more to learn about all the various symptoms that can be directly related to lupus.

Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

As an internal medicine doctor who was diagnosed with lupus in medical school and endured multiple organ complications for over 36 years, I’d like to share lessons learned over the decades.  These stem from my reading, hard-earned experience, and recommendations from my physicians.  First, I want to encourage all of you that a good quality of life IS possible with lupus, and these are suggestions that have helped me to enjoy life despite the challenges. 

REST—

Listen carefully to your body and rest when needed.  We require more sleep and naps than a healthy person, and fatigue triggers flares.  In our achievement-oriented society, we all tend to push our bodies beyond our ability. It’s especially tempting to do so when your lupus is fairly stable.  Remember how terribly unpredictable lupus can be, as I found after a 20-year period of mild disease when I developed a life-threatening flare, due to working excessively long hours. Try to choose a career that offers you flexibility, perhaps the ability to work from home, and an opportunity for self-care.  

I’ve learned the hard way that warning signs and pattern of flares can change over time, so don’t be fooled into complacency.  Lupus, meaning wolf in Latin, is very devious and fools physicians and patients alike!  Severe fatigue can be the ONLY symptom of a very serious flare, so see your doctor if your condition changes. 

ALWAYS PRIORITIZE YOUR HEALTH!!!

We are replaceable at work but often cannot undo the detrimental effects of flares, so be open to modifying your work hours and even career to preserve your health.  Don’t be afraid of change, often needed when living with lupus.  There may be periods during which you are unable to work without compromising your health.  Don’t allow pride to prevent you from taking a medical leave—something a good lupus doctor will support. Stay positive and remember that even overwhelming, severe flares are survivable, and a return to a good quality of life is often achievable. 

DIET—

Eat an anti-inflammatory diet.  There is evidence that casein, a protein in dairy, is particularly inflammatory.  Some leading rheumatologists believe that a plant-based diet is the most anti-inflammatory diet.  Research this carefully to make sure you get your nutrients, discuss it with your doctor, and take a vitamin B12 supplement if you decide to try this.  Some with lupus find it extremely effective, as well as being the best diet to reduce heart disease risk, a major cause of death in those with kidney disease and those over age 50 with lupus.  Avoid garlic, alfalfa sprouts, and papaya, as they tend to stimulate the immune system, and eat organic foods as much as possible, as pesticides can trigger lupus flares.  Avoid junk and processed (packaged) foods and excessive sugar.  

Also, avoid echinacea and melatonin, which may trigger flares.  There is good evidence that being deficient in vitamin D triggers autoimmune disease and maintaining a vitamin D level of at least over 50 ng/mL (some experts prefer over 70 ng/mL) helps prevent flares.  There’s some evidence that omega-3 fatty acids, such as found in nuts and flaxseed, may be helpful.

*Always make sure to consult your doctor when looking to start a new diet!

EXERCISE—

Exercise regularly, aiming for at least a half -hour walk daily, if possible.  Resist the urge to lie in bed all day, as exercise is the best proven method of combating fatigue and is far safer than increasing immunosuppressants. Yoga and Tai Chi are also very beneficial, as they strengthen, improve balance preventing falls, and are relaxing and meditative.  As we’re at risk for osteoporosis and fractures due to steroids, weight-bearing exercises like walking and Tai Chi are especially helpful.  Loren Fishman, M.D., of Columbia University published a study of “Twelve Poses Versus Osteoporosis,” which is available online on YouTube and proven to increase bone density.  Maintaining a healthy body weight is also important to overall health.

STRESS/MENTAL HEALTH—

Pay close attention to your mental health as well, as like physical stress, psychological stress triggers the disease also.  Meditation, prayer, deep breathing, relaxation techniques, pets, and spending time in nature are all helpful.  Maintaining a perspective of gratitude and positivity is incredibly helpful, and I find a twice daily brief focus on gratitude upon awakening and going to sleep is invaluable.  Counseling can be helpful with depression or other mental issues related to lupus, which are quite common.

Be open with family, friends, and employers about your illness in order to obtain needed support. Avoid toxic relationships or ones in which your partner lacks empathy or willingness to accommodate your needs, as the stress this brings can aggravate your illness.  Also, trust your own assessment of how you feel, as we often appear outwardly normal, while feeling unwell.

UV PROTECTION—

Diligently protect yourself from UV exposure.  Over time, I have found that careful use of sunscreen, UV protectant clothing (over 50 SPF is best), a UV umbrella, and even UV protectant coating applied to car windows make a great difference!  Remember that regular clothing provides only a few degrees of protection and that UV light is present even when cloudy and whenever it isn’t completely dark outdoors.  UV-blocking clothing is far easier to use than sunscreen, which is rarely used correctly as it requires a thick, visible coat for adequate protection.

GENERAL—

Take your medications regularly and see your doctor regularly, as lupus kidney disease often causes no symptoms.  Regular blood and urine testing are critical to early detection, helping you to prevent kidney failure.   Request appointments if you’re flaring in between visits, and don’t be afraid to seek a second opinion, especially if you are taking immunosuppressant medication or it is being changed in some way.  Academic centers often have lupus specialists with the most experience with the disease and uncommon complications, though there are some excellent community-based rheumatologists as well.  Take recommended vaccinations, as we are more infection-prone, and keep up with your general health maintenance, prevention AND DENTAL CARE.  Avoiding tobacco, alcohol, and drugs is very important.

Though there may be moments when you feel like giving up, these difficult times will usually pass.  Life is a precious gift!  Though we may lose the ability to do some things we love, by remaining open to possibilities, other passions can be discovered.  As we adapt to these challenges, we can reinvent ourselves!

Thank you to our valued guest contributor for sharing their lupus journey, from a physician’s perspective! If you would like to share your personal lupus story, send an email to hello@lupuscorner.com!

Anonymous Lupus Warrior

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

If yes, what have people said to you about your use of medication for lupus?

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Yes.

Warrior Lois

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Niecie

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

23 Mert

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

No.

If yes, what have people said to you about your use of medication for lupus?

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Jasrene

Anonymous Lupus Warrior

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

Lucy

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

We’ve had quite the year! Thanks to you, we’ve been able to take new and exciting risks, as well as embracing new endeavors to help keep our community updated on lupus research, treatment, and more! Here’s an overview of 2021.

LupusCorner Podcast

The LupusCorner Podcast has become a wonderful asset to our Lupus Warriors. Adding an additional element to our lupus content, it has brought us so much joy in creating!

We are streaming on all platforms, including Apple Podcasts, Spotify, and Google Podcasts! Just click on the icons to listen!

We’re thankful for all of your reviews! They go a long way in allowing us to make more episodes!

Stay tuned for more exciting LupusCorner Podcast episodes in the new year!

Lupus Crossword Puzzle

Over the past few months we introduced lupus crossword puzzles to our social media followers and newsletter subscribers. We’ve had lupus quizzes and surveys in the past, so we decided to create something a little more fun! Here is our most recent puzzle:

Once you’ve completed the puzzle, click here for the answer key!

MyLupusCorner Instagram: Top Posts

Our instagram page is a fantastic tool for Lupus Warriors to interact with other members of our lupus community. It also serves as a great way top stay updated on current lupus information and research. Here are some of our top posts:

Make sure to follow us for updated lupus content! Click here.

Top Articles of the Year

Cold Weather, Symptom Flares, and Lupus

Read more.

Lupus Diets: An In-Depth Review

Several diets are very beneficial for people with lupus, and many of them have premade meal delivery services available. This can make it easier to eat well. However, when deciding whether to change your diet, always talk to your doctor first. So, what diets may be helpful for Lupus Warriors?

Read more.

Women and Lupus: The Impact of Genetics & Hormones

They also disproportionately impact women and particular racial and ethnic groups. In fact, 78% of people with autoimmune disease are female. Both of these disproportionate prevalences are even more pronounced when looking at lupus. 9 out of 1o people diagnosed with lupus are women.

Read more.

What’s Next? Upcoming Articles and Information

Articles to expect in the next month:

• Retinopathy & Lupus Diagnosis
• Four SLE Subgroups, Defined by Autoantibodies
• New Q&A Forum

What else to expect:

• LupusCorner Podcast: Episode 9
• LupusCorner Crossword Puzzle
• New lupus-specific social media content

Follow us on Instagram, here! Come join our community and be the first to see new lupus content!

ShanThom72’s Lupus Story

“My story began with bouts of chest pain and numb fingers by the age of 8. As my father was in the navy, I was seen by various doctors at military hospitals and underwent numerous tests, but without diagnosis. By high school I was also experiencing random, mass swelling of joints and broke out in the butterfly rash. It wasn’t until I was 15 years old, chronically ill with kidney involvement and unable to remain in school, and was taken to the local (civilian) urgent care center, that I was finally tested for an immune system disorder. After receiving an SLE diagnosis, I was placed on the appropriate meds, including long-term steroid therapy and was able to make it through college, begin a career, get married, and give birth to a healthy baby boy, with very few symptoms.”

Read the full story, here!

BFree’s Lupus Story

“Finding out I had Lupus wasn’t initially devastating. It answered an enormous amount of questions about my odd health issues. For instance, chicken! Why was it some months I could devour chicken no matter how it was prepared, and other months it was like eating paste and rocks?

What are these tiny blisters all over my fingers, nail bed and toes?

Why do I look like like I’m blushing all the time?

Why do I feel feverish in the late evenings, and have ridiculous migraines?

What are these odd blisters in my nose?

Why is there always ‘invisible’ proteins in my urine tests?

Why am I gaining weight?”

Read the full story, here.

My Journey’s Lupus Story

“I have always been sun sensitive, would get awful headaches, sun blisters, very ill. My mother would throw me in a cool tub, no AC remember, dry me and lay me on a couch and darken the room. I’d sleep, get chicken noodle soup and a lot to drink. Little did we know, my achy joints, bad lungs, sun blisters were all symptoms of lupus, until my brother was diagnosed with Marfans syndrome. The docs told my parents to have me checked for autoimmune.

Well we didn’t have a lot of money, that was put on hold and it took me ten years to be diagnosed at 32.”

Read the full story, here.

Male Lupus Warrior’s Lupus Story

“My name is Emmitt Henderson III, I am a Male Lupus Warrior Veteran since 1995. My story started in 1980 with Discoid Lupus that evolved to Nephritis and Systemic in 1995. In addition to Lupus and over 30 pills at a time, I was diagnosed with Sjogren’s Syndrome and Rheumatoid Arthritis. Lupus Flares were extreme, at 1 point, I was in the hospital every month, for a week, over a 1 year period.

I was on Chemo and Radiation treatments, I endured going through peritoneal dialysis till my Kidney Transplant, I suffered Heart failure, I was in a coma for over 3 weeks. Once I recovered from the coma, I went to rehab to relearn to use my limbs. From the trauma to my Heart, my Heart could not take another Flare, I went through a Bone Marrow Stem Cell Transplant (a clinical trial) procedure to slow down my Lupus Aggression. Lupus done its damage, I had Avascular Necroses that caused my Rt Knee and Lt Shoulder to be replaced, I had damages to my hips and opposite joints. I went through Restricted Lung disease, and was on oxygen for a month, I had Liver Disease, Ulcers in my Esophagus, I had to eat from a tube for over a week, I endured Liver disease, a Stroke and had my Gall Bladder removed.”

Read the full story, here.

It Helps To Think Ahead’s Lupus Story

“Like all Lupus Warriors, I am always concerned that I’ll develop a flare when I must undergo a necessary medical procedure that involves an injection of a new medication or sedation. However, I have learned that if I prepare myself, advocate for myself, and educate my family/care support team. I can prevent a flare while I can’t shorten my recovery time.

I CAN avoid a flare! I prepare myself by getting enough sleep, eating well, and exercising.”

Read the full story, here.

FS’s Lupus Story

Kym H’s Lupus Story

“Diagnosised age 14 with Sjogren’s. Started with occasional blacking out due to overheating, I would have to lay down on the floor or coolest part of it. I started having sensitivity to light in my early 20’s and dry mouth, my glands would swell in my face when my body was fighting an infection. Got pregnant 2015 and had to see a fetal specialist, and the pregnancy was smooth but I was experiencing pain.”

Read the full story, here.

Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

Janell

What do you wish your friends/family understood about lupus?

How it “truly” effects us, also the people that comments “you don’t look sick” makes you want to to say you don’t look stupid either, but you have to be nice..

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Marian M.

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Beverly O’Keeffe

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Jas

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Lupus My Reality

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Lupus: Complexity of the Disease

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Christine E.

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Unseen Damage

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Seven Levels of Hell

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Shanthom

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Milena

What do you wish your friends/family understood about lupus?

What do you wish your doctor better understood about your life with lupus?

What do you wish the world better understood about life with lupus?

Looking for previous Q&A Forums?

Check out all the posts here

Positives of Isolation

I made progress on my health goals in 2020.

2/5 (disagree)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

Jeannette T.

I made progress on my health goals in 2020.

3/5 (neutral)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

Goals

I made progress on my health goals in 2020.

3/5 (neutral)

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

Lizeth Santamaria

I made progress on my health goals in 2020.

5/5 (strongly agree)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

Yes! They have grown.

What steps are you taking to achieve your goals?

N

I made progress on my health goals in 2020.

3/5 (neutral)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

Janell

I made progress on my health goals in 2020.

3/5 (neutral)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

Janet M.

I made progress on my health goals in 2020.

3/5 (neutral)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

Teresita C.

I made progress on my health goals in 2020.

2/5 (disagree)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

What steps are you taking to achieve your goals?

DuffysGirl

I made progress on my health goals in 2020.

3/5 (neutral)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

ShanTy

I made progress on my health goals in 2020.

4/5 (agree)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

Lupus Make Up Warrior

I made progress on my health goals in 2020.

3/5 (neutral)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

Aliyah

I made progress on my health goals in 2020.

2/5 (disagree)

What are your health goals for 2021?

How have you adapted your goals? How have they changed from last year?

Looking for previous Q&A Forums?

Check out all the posts here

Shan T.

I have achieved positive outcomes through lupus self-management.

4/5 (agree)

What forms of lupus self-management have you attempted?

Has your doctor or lupus treatment team ever recommended or mentioned self-management? What advice or instructions did they give?

Self-management can be empowering, increase adherence and improve patient quality of life. How has self-management impacted you and your lupus treatment?

Janell

Christine from Down Under

Lizeth SantaMaria

Anonymous

I have achieved positive outcomes through lupus self-management.

3/5 (neutral)

What forms of lupus self-management have you attempted?

Lifestyle, diet, exercise management

Medication management

Stress management

Sleep habits and management

Has your doctor or lupus treatment team ever recommended or mentioned self-management? What advice or instructions did they give?

Creaky joints Mediterranean diet article.

Self-management can be empowering, increase adherence and improve patient quality of life. How has self-management impacted you and your lupus treatment?

Helps me to feel more in control.

I Know What Works For Me

I have achieved positive outcomes through lupus self-management.

5/5 (strongly agree)

What forms of lupus self-management have you attempted?

Lifestyle, diet, exercise management

Symptom and flare management

Medication management

Stress management

Sleep habits and management

Has your doctor or lupus treatment team ever recommended or mentioned self-management? What advice or instructions did they give?

No.

Self-management can be empowering, increase adherence and improve patient quality of life. How has self-management impacted you and your lupus treatment?

I have fewer flares.

Gwen A.

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