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Living with Lupus

Q&A Forum: Self-Management & Accountability

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With many Lupus Warriors avoiding in-office doctors visits due to COVID-19 concerns, self-management and accountability is vital. Managing and understanding your symptoms is key in self-management, as well as sharing resources and information with your treatment team.

Check out this month’s Q&A Forum!

Lupus Warriors should be active participants in their care and treatment, especially in current times. Doctors visits may be off the table, so monitoring your medications, symptoms, flares, and mental health is extremely important.

In this month’s LupusCorner Q&A Forum, Lupus Warriors share their experience with self-managing their lupus, as well as staying accountable throughout the process.

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person-22

Shan T.

I have achieved positive outcomes through lupus self-management.

4/5 (agree)

What forms of lupus self-management have you attempted?

Lifestyle, diet, exercise management
Stress management
Sleep habits and management
Symptom and flare management
Medication management

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

I feel like my doctors don’t really talk much about self-management. They have talked with me about my diet (suggesting I go back on a vegetarian diet, as my inflammation was much lower when I cut out meat) and they have recommended certain stretches and range of motion exercises for me to do as often as I am able to. However, I feel as though they want, or expect, me to rely on them to manage everything. I actually wish they would allow me the flexibility to self-manage more! I have been on tele-health visits since March, so I feel more able to try self-management, which has been a real benefit, in my opinion.

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

I feel more responsible for myself and more able to try different things. I don’t like feeling so tied into their clinically controlled way of doing things. It has been far less stressful for me! I have to travel almost 3 hours to see my doctors, which inevitably leaves me worn out (and stuck in bed, resting) for at least a couple of days afterward. Handling my visits through the telephone has been wonderful for me!
lupuscorner-person23

Janell

I have achieved positive outcomes through lupus self-management.

4/5 (agree)

What forms of lupus self-management have you attempted?

Setting goals and tracking progress
Stress management
Lifestyle, diet, exercise management

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

No, figured do changes on my own..

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

Not as depressing as it could be, trying to stay active in the house.
lupus tip-person-2

Christine from Down Under

I have achieved positive outcomes through lupus self-management.

5/5 (strongly agree)

What forms of lupus self-management have you attempted?

Sleep habits and management
Stress management
Setting goals and tracking progress
Medication management
Lifestyle, diet, exercise management
Symptom and flare management

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

Avoid sun exposure
Eat small amounts of high nutrient food regularly
Take probiotics
Exercise and keep moving
Avoid excessive garlic (boo)
Try not to stress
Take Plaquenil

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

I am in much better health and feeling better. I have not had as many bacterial infections.
lupuscorner-person11

Lizeth SantaMaria

I have achieved positive outcomes through lupus self-management.

5/5 (strongly agree)

What forms of lupus self-management have you attempted?

Symptom and flare management
Lifestyle, diet, exercise management
Medication management
Setting goals and tracking progress
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?

Not really. He just approves of what I’m doing and says to keep doing it.

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

It’s helped me feel more in control of myself and health and it has helped me have more of a positive attitude.
person-4

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.

lupus tip-person-12

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.

lupus tip-person-1

Gwen A.

I have achieved positive outcomes through lupus self-management.

4/5 (agree)

What forms of lupus self-management have you attempted?

Lifestyle, diet, exercise management
Medication management
Setting goals and tracking progress
Symptom and flare management
Sleep habits and management
Stress 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?

It’s helped me have less flares.

Looking for previous Q&A Forums?

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