Tag Archives: lupus awareness

POP!

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Need to know exactly what lupus is? Go to: What is Lupus

I’m Putting on Purple today, are you?

Fight.

I ran my third 5k of the year today. My objective was just to finish as I had a tough time at my last 5k. I finished, but it was tough!

I kept having to give myself pep talks as I went along. I tried to think of every mantra that would keep me going. I didn’t stop, I didn’t quit. I refused to not fight.

With lupus, we do this every day. Whether you feel strong or not, you are strong. Stronger than you know. Stronger than the average healthy human. You’re still here. You’re still fighting.

Lupus sucks. It makes for hard days. But we don’t stop. We keep going. We are going to keep going until they find a cure.

I didn’t stop today. No matter how slow I was, I kept going. I kept telling myself I was STRONG. I FIGHT.

Feel proud, you are a fighter.

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5k for a Cure!

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If you live in the southwestern Missouri area (or know someone who does) I hope you will join me this Saturday the 14th for Midwest Technical Institute’s 1st Annual P.O.P. for Lupus 5k Walk/Run in Springfield, Missouri.

Feel free to come and walk, or run with me and help raise awareness for lupus!!!

Check out the Facebook page: https://www.facebook.com/events/956642067718220/?ti=cl or sign up directly at https://runsignup.com/Race/MO/Springfield/MTIPOPforLupus5k. I hope I will see you there!!

 

-Erin

#PutOnPurple!

put on purple

 

Outside of the tv show House, most people have never even heard of lupus. We need to change that!! -Erin

Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune
disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. You can change that! Help the Lupus Foundation of America raise awareness of lupus and show support for those who suffer from its brutal impact.

On May 20th, Put on Purple™ to show your support for the millions of people affected by lupus. It’s an easy way to raise awareness about this cruel and mysterious disease. Learn more by visiting lupus.org/putonpurple and submit your photos at putonpurple.tumblr.com!

-From the Lupus Foundation of America

May 10th is Lupus Awareness Day

Head on over to WorldLupusDay.Org and sign the petition to help make lupus a priority for the World Health Organization!

 

What is lupus

How Communication Can Help Save a Life

322,000.  That is how many people are said to have lupus in the US.

Bloggers with lupus are constantly talking about awareness and education. But according to a study from 2012 there is a giant communication gap between lupus sufferers, caretakers and physicians.  We all need to work together to fix this problem.

It starts with the patient.

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But why do we allow lupus to make us into liars?

Sometimes we don’t speak of different parts of our illness because we feel judged:

The first time someone gives you a look that says they don’t believe you when you tell them you are tired.
Or maybe they cut you off mid-sentence when you try to explain a frustration with your illness.
When the pharmacist is practically tsk’ing out loud as you hand over your prescription for pain medication.
Yes, you try to eat well and exercise as much as you can. You aren’t just being lazy.
No, X Y & Z are not Miracle Cures for Lupus.
You have a rash, headache, and fatigue all in one day and you have zero reasons to get out of bed. But, this is the third day in a row.
Everyone gets tired, you should just deal with it.
Yes, you have to go to the doctor again this week.

You feel like a broken record.

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It is an INVISIBLE chronic illness.
It’s never going to go away (unless they REALLY do find that miracle cure).

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87% is a large number.  We need to be honest with those around us.  I’m not saying complaining about your disease every 5 seconds, but be honest when you’re really hurting and when you are really needing support.
You have to deal with it. Everyone around you has to deal with it. Which brings us to…

Caretakers and loved ones.

What was your first thought when you found out about your Lupies diagnosis?  If you took some pathology in school you might have known a little bit, but most people have no idea what lupus is.  Your loved one may be having some frightening signs and symptoms, but the diagnosis can be even scarier. This person will be dealing with this disease for the rest of their life.  How are both of you going to deal?

Some hard truths:

78% of family and friends of those with lupus describe themselves as “very supportive”, however only half of lupus patients feel that they are “very supportive” and only 33% of their doctors feel they are.  Unfortunately this says a lot about how family and friends of patients do not really understand or realize the severity of lupus.

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I know noone is perfect. There is a relentless battering of varying degrees of  illness, caretaking, doctors visits, different diagnoses, worries, life changes, and a multitude of unknowns. It can be rough on both the patient and the caretaker, as well. Though there is so much more research  needed to be done, please find out as much information as you can on your own.  It will help you to understand where your Lupie is coming from, what to expect, and to also help educate others.

And what of the physicians?

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I can’t speak for them. 72 % of doctors said they were not aware of the severity of their patient symptoms.  72%!!!! Only we can change that, Lupies. We need to be our own advocates. We as patients AND caretakers need to be forthright with physicians.

 

lupus awareness

I hope to see these numbers change in the future.

-Erin