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Monday, May 6, 2013

May is LUPUS AWARENESS Month

This month I am donating 100% of my profit from Your Daily Jewels on Etsy.com to The Lupus Foundation of America.  

A Myriad of Custom Silver and Bronze Initials at Your Daily Jewels

"Help us solve the Cruel Mystery" is their latest campaign. Please sign the petition at CruelMystery.org asking Congress to fund more research for this incurable disease of which there is no known cause. I have been on the same drugs for 22 years. Only one new drug has come out for Lupus in the last fifty years.

I don't tell people I have Lupus until I have known them for a long time. I do this for me. It helps me avoid being known as "sick."  I would much rather be known as "me" and  once I know someone and feel close to them, I tell them. At that point I am "Norah, she has Lupus". I am not tagged as "My sick friend." It helps me not to have the tag of "sick" because I have to be careful not to buy into this myself. It would be too easy to drop out and say, I can't participate in life, I am "sick"

Oh, believe me, I do my share of loafing around and not participating, but that is because at that point I am really sick.  

Lupus Foundation Image of the Classic Lupus Butterfly Rash
Me, Butterfly Rash and Hair Loss
Remission: Happy, Healthy in my Studio

People have asked me what the hardest part is about living with Lupus. The being sick part is not #1 on the list because that problem has solutions: treatment and time. Although, I have never had life threatening kidney involvement. The dreaded diagnosis Lupus patients fear everyday. At that point, or other life threatening situations that occur with lupus, this list will change.


 The hardest part of having a chronic, unpredictable illness for me is:

  •  Making plans.  At 9:00am, I don't know how I will feel at 3:00 pm; never mind tomorrow or next week. Having important plans set in stone is very stressful for me because I am anxious about disappointing people I care about and love; and missing out on life. It is usually pain, fatigue, and a fever from nowhere that wipes me out. Stress exacerbates Lupus, and 'round we go.

  • Worrying when I am too weak to get down two flights of stairs to my jewelry studio, and my orders are running late.

  • Staying out of the sun. The day I was diagnosed, that was the first thing the doctor told me. "No more sun." She could have easily have said, "Tomorrow you move to Siberia". I grew up with baby oil and tin foil reflectors!   Now I am fully covered, sun-screened, or inside all Summer. I do get an occasional spray-tan :)  I have to wear sunscreen and a hat under my studio lights and in the car. I feel like I have the flu immediately if I have 20 minutes of sun exposure. This can trigger a Lupus Flare-up that can last a month

  • Living in fear. Since being diagnosed with Lupus I have been diagnosed with Sjogrens, Rheumatoid Arthritis, Raynaud's, Vasculitis, Hashimoto's, and Celiac disease.I have  had bone, joint, and connective tissue involvement. Lung, heart, vision, skin, vascular, and very scary brain involvement. Everyday, while in remission the fatigue is staggering. But it is the fear of what might happen next that is difficult. It may be tomorrow; perhaps five years from now; maybe it will just leave?

 I dream of living fearlessly

 If you have Lupus, or think you might and you would like to connect with me, please do! If you would like to learn more, the Lupus Foundation Website   (http://www.lupus.org) has great easy lists of what it is, what the signs are, how you can help, links to local Lupus societies, Lupus fundraisers in your area, and lots more.

Some of my jewelry pieces speak to me about my own journey with Lupus. Maybe they will speak to you, and 100% of your purchase price will go to The Lupus Foundation.

While I liveI'll Crow









Latin: Invicta: UNDEFEATABLE - 1800's Livery Button
"Alls Well" English Intaglio- year: 1850

Thank you so much for reading,