Living with Lupus

The Top Lupus Tip to Share with My Younger Self Is…

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Experience: The useful tidbits you learn along the way (but wish you knew from the beginning)

Over time, you become an expert in living with lupus. You build a lupus treatment team that works for you. You get the schedule of medications and office visits down. You get used to explaining lupus to friends and family.

This week, in the LupusCorner Q&A Forum, Lupus Warriors share a tip or insight that they wish they could share with their younger self.

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Taking Charge

I have developed personal strategies that help me battle lupus

5/5 (strongly agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

First of all I was misdiagnosed for years. They said fibromyalgia. I would have taken charge of my health a lot sooner before it got to this point.

lupuscorner-person-30

NWA

I have developed personal strategies that help me battle lupus

5/5 (strongly agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

Be more aware of diet, exercise and learn to pace yourself. It’s ok to be tired.

lupus tip-person-1

Shakirah

I have developed personal strategies that help me battle lupus

3/5 (neutral)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

Pay closer attention to your body and insist that your doctors listen to you. Don’t be afraid to change if you don’t feel you’re getting the care you need.

Diana G.

I have developed personal strategies that help me battle lupus

3/5 (neutral)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

I thought I was managing my lupus years ago, when my kids were in school. Looking back, now that my oldest grandchild is in school, I realize I was not the manager. Lupus was. And I think I would have had a better experience if I had accepted that and let lupus manage me.

Annie

I have developed personal strategies that help me battle lupus

3/5 (neutral)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

I would take better care of myself and rest more . Tell people no when I really didn’t feel like doing something

lupus tip-person-13

Jasrene

I have developed personal strategies that help me battle lupus

4/5 (agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

Seek TCM [traditional Chinese medicine] treatment immediately, as I feel that it is helpful now that I am 12 years into being diagnosed, and the last 4 years when I seek TCM treatment, my condition is under control.

 

Editor’s Note: Click here to learn more about traditional Chinese medicine from the NIH

lupus tip-person-12

Katie G.

I have developed personal strategies that help me battle lupus

4/5 (agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

Getting the right amount of sleep, 3-4 days of exercise (even just light exercise), and listening to your body are the absolute best things you can do for yourself.

lupus tip-person-2

S. Mamola

I have developed personal strategies that help me battle lupus

3/5 (neutral)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

Slow down — I had four children, and a stressful life. I wish the doctors knew more back then. More than 15 yrs have gone by and it takes everything in me to take care of my house

lupuscorner-person23

Janell

I have developed personal strategies that help me battle lupus

5/5 (strongly agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

This isn’t a death sentence, although, it changes your life. You can’t let it change YOU..

lupus tip-person-18

Mike Wheeler

I have developed personal strategies that help me battle lupus

3/5 (neutral)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

To take better care of myself and not continue to push when I am not well.

lupuscorner-person-30

Gwenn D

I have developed personal strategies that help me battle lupus

3/5 (neutral)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

To find lupus friends so I know I’m not nuts

lupus tips-person-24

Sunny B

I have developed personal strategies that help me battle lupus

5/5 (strongly agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

It’s not a death sentence. Lupus just requires you to pay attention to your body and lifestyle

PePe

I have developed personal strategies that help me battle lupus

4/5 (agree)

If you could go back in time to when you were diagnosed with lupus, what tip or insight would you share with yourself?

Listen to your body and your gut instinct

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Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

Comments (2)

2 thoughts on “The Top Lupus Tip to Share with My Younger Self Is…

  1. Use sunscreen!!!!! Don’t leave anything out when speaking to your doctors, tell them of every ache and pain, inside and outside the body!!!

  2. I have lupus Just Dx 2 years ago. Read And followed Dr goldner. Helped a lot. Most of you already know to follow what your Body is telling you. Instinct Will Help you And live your life And lupus easier

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