Thursday, May 8, 2014

LUPUS AWARENESS MONTH P-O-P MAY 16

Hi Everyone!

I receive several emails each month from people asking me why I have stopped beading. Believe me beading is still in my soul. The simple fact is, due to lupus I can no longer create the designs I have in my head. Sitting for long periods of  time, like I use to with beading, is just not possible any more.
Also, thanks to lupus, my hands don't work like they use to.  I beaded  for over 46 years, contributed to the beading world in many venues, and paid my bills with my designs. So to loose this to a disease is very dissappointing. I am trying to be nice, it is sssoooooo much more than dissapointing.

What I am about to write is NOT for you to feel sorry for me. 
Not me not at all. I don't feel sorry for myself . This is just to make people aware.
People look at me and say, "you don't look sick"
Ohhhh please come live in my body for awhile and give me a break from it. LOL

Making people aware of  how lupus effects lives is part of  knowing what the disease is. Lupus effects people differently but the results can be the same and they can be devasting. Over my life I have had 5 surgeries removing internal organs. I have brain and central nervous system problems leaving me, at times unable to walk or just function. I am in pain EVERY day. With flares I am in even MORE pain. There is cronic fatige and digestion problems and sometimes I just can't get things right in my thought process and my skin breaks out in a lupus rash, haaaa more like an explosion. LOL
 I tend to hybernate during these times. I don't want people to see me like this. In my mind I am still healthy. I am  hiking up mountian sides, bow hunting, camping. I am working, dancing, laughing and just being strong. And that is why I fight. Why I keep as positive an outlook as I can. Why I take care of myself. Why I do what I can to get up everyday and to be as healthy as I can. When I can't do it on my own I have a really good doctor.

 Making people aware and then taking action is what will bring a cure to this. 
There is a lot going on in the month of May for lupus. Support us in anyway you can.
 If you have lupus or any other autoimmune leave me a comment. Let's make people aware!

 http://www.lupus.org/

May 1. Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body.
May 2. In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that cause inflammation.
May 3. Ninety percent of the people who develop lupus are women. Men also can develop lupus and their disease can affect some organs more severely.
May 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.
May 5. African Americans, Hispanics/Latinas, 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.
May 6. Factors that may trigger a lupus flare include infections, ultraviolet light, stress and some medications.
May 7. Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints, and skin.
May 8. Lupus is not contagious and cannot be “given” to another person.
May 9. First degree relatives of people with lupus (parent, sibling or child) have six times the risk of developing the disease.
May 10. Many symptoms of lupus imitate those of other illnesses, and can come and go over time, making diagnosis difficult.  Consequently, it may take three to five years or more to diagnose lupus.
May 11. Successful treatment of lupus often requires a combination of medications.


Nicole/Beadwright
Honor and integrity in art, in life.

3 comments:

  1. I have fibromyalgia and bi-polar disease, so I do know a little bit of what you're dealing with--I get so frustrated when I can't do the smallest part of what I could do in the past. I am so grateful for the internet and my social media. I don't feel so much like I am locked away in my body; I have friends. Thank you for letting me into your life, Cam

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  2. Thank you Nicole for letting us know about this disease. I didn't know you had stopped beading. Perhaps you can have some one design your beadwork? Someone to help with the beading? Good luck my friend. I think of you.

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  3. Nicole, I think it is so shitty that you have to go through this! Damn Lupus! You keep being the wonderful person you are!!! Big Hugs and lots of love!

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