Butter fly Rash

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New Member

Date Joined Feb 2014
Total Posts : 1
   Posted 2/16/2014 5:23 PM (GMT -6)   
This rash is wrecking my life, iv had it now for 3-4 months, i have just been diagnosed with Lupus...Sometimes i find it hard to leave the house with my wife and son...
Im not normally like this, letting anyone know my problems, but it seems noone understands what im going through...

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 2/16/2014 6:55 PM (GMT -6)   

I used to think people around me did not understand what I was going through when I was first diagnosed 17 years ago. What I found out was that many people were afraid to ask or hesitant because of their own fears. It took time and patience, which is difficult when you are feeling miserable, to finally have the people around me come to comprehend my journey. It was an education for them and for me. It also gave me an opportunity to really open up to people. They could tell I wasn't feeling well and tending to isolate myself, so they kept their distance. As I became more open, I found out that they were truly concerned and wanted to understand. Not everyone was like that. I kept my distance from those people because it truly did not help me. Where this process paid dividends was at my work place, especially when I cut back my schedule to four days a week. By my being honest and helping to educate folks about Lupus, they became more receptive to my need to modify my schedule and understand when I took more sick days than usual.

I felt that early on Lupus was wrecking my life as well. But I found that with time and more understanding on my part that I was able to live life....not as fully as before, but in many ways pretty darned wonderful. Change is always difficult and sometimes we feel cheated by the hand we have been dealt. I have learned to trust and be thankful with what I have. It wasn't what I assumed my life would be like at 61, but it's the life I have now. Surrounding myself with incredibly understanding friends and living in an environment that nurtures me has helped immensely. And finding solace and support here in this forum has been a blessing.

Hang in there!

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 2/16/2014 7:36 PM (GMT -6)   
Try not to fret over what others do or react.

The rash is hard to deal with when it's flaming up our faces.
Are you protecting your face from sun exposure?
Tinting sunscreen, nice fedora, and shades will protect well and make a nice fashion statement.
I buy my sun protective clothing from coolibar.com and sungrubbies.com. Coolibar has some really nice men's clothes.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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