Thursday, May 14, 2015

Put On Purple!

The first step toward change is awareness. The second step is acceptance.
- Nathaniel Branden

Lupus Walk May 2014
May is Lupus Awareness Month! Yay for awareness! I haven't done as much as I wanted to on this blog with Lupus Awareness Month, but something is better than nothing. So, I figured I'd start with National Put on Purple Day, which is May 15th. And, in case you can't tell, putting on purple is easy and fun for me to do since clearly, I love the color purple. (No pun intended Lupe) 

For those of you that are unsure, or unclear as to why I "celebrate" put on purple day and Lupus Awareness Month, please be advised of the following:

1. I have Lupus. (shocker)
2. My Tia Morena passed away from complications with her Lupus
3. My Tia Daveyba also lives with Lupus
4. Lupus sucks and we need to raise awareness. 

Although I started this blog many moons ago to cope with what Scleroderma was doing to my body and my life, over the last few years, my body has also decided that it wants to take on the challenge of living with I am. Raising awareness not just for sclero, but for Lupus as well. I am a woman of many talents. 

Me & My Boo at the Lupus Walk May 2014
Today, I just want to share 15 fast facts about Lupus that I think you need to know to put this all in perspective: *For more facts visit Lupus Foundation of America- All information below is from the Lupus Foundation of America

1. Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body.

2. In lupus, something goes wrong with the immune system, the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that cause inflammation.

3. Ninety percent of the people who develop lupus are women, though men can also develop lupus and their disease can affect some organs more severely.

4. Most often, lupus develops between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve into serious health complications more rapidly.

5. African Americans, Hispanics/Latinos, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.

 6. Lupus is not contagious and cannot be “given” to another person.

 7. To make a lupus diagnosis, doctors evaluate a patient’s current symptoms, lab test results, personal medical history and family medical history.

 8. Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints and skin.

 9. The malar, or “butterfly” rash on the face is present in an estimated one-third of people with lupus. This flat, reddish rash across the bridge of the nose and cheeks often is the only outward symptom of lupus (though other signs and symptoms might be present).

10. Though all pregnancies of women with lupus are considered “high risk”, advancing technology and a better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with lupus symptoms that are not active can have successful pregnancies.

11. Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain

12. Among people with lupus that affects the skin, poor mental health is common and has been found to be similar or worse than mental health among those with type 2 diabetes, recent heart attack, heart failure and high blood pressure.

13. People with lupus have two times the risk of developing cardiovascular disease than do people without lupus.

14. Nearly 3 in 4 people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities.

15. An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.
Mami and Me @ Lupus Walk May 2014
I am one of those 1.5 million, and there is probably at least one other person in your circle of family and friends that is also living with this disease and you just don't know it...and maybe they don't know it yet either. 

It's not an easy disease to live with and manage. It's always surprising me. I've often said that I feel it's worse than scleroderma- only because sclero never attacked my internal organs and that's all Lupus seems to want to do. I  know both are devastating in their own ways, and I am trying to learn to  just be an observer, to live with these illnesses with non-judgement but I am a work in progress. 

Lupus has taught me to be patient with myself and others. To take nothing for granted and to live with purpose. To acknowledge that my body and my mind has limitations and to be ok with that. And to treat others kindly because you never know what secret battles they are facing. 

I also know, that I inted to continue spreading awareness, sharing my story so others feel less alone, and to continue tackling  all of it with humor, passion and grace. 

If you put on purple on May 15th, please snap a selfie and share it with me here or on Facebook/Twitter!!!

(Next on the blog...My Lupus Journey and The Spoon Theory..stay tuned!) 

1 comment:

  1. Hi Jas
    How's things? I'm on 30mg of pred for eye inflammation and feeling pretty rubbish. Planning my 40th birthday party is a good distraction tho. Thinking pink strawberry cake and prosecco...
    Done any new writing lately? I've got lots of ideas for printmaking, can't wait til term starts again. I'm on twitter at housemouseprint if you'd like to see.