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Living with Lupus and Still Being Happy

Posted Jan 13 2012 2:10pm
I have systemic lupus erythematosus (SLE).  Hard to say.  Sounds pretty scientific.  What is it exactly?  And why am I so darn happy despite knowing I have to live with it for a long, long, long time?    

What exactly is SLE? Some of you are probably very familiar with lupus.  For the others, here's some info from the Lupus Foundation of America's Website.

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus is not contagious, not even through sexual contact. Lupus strikes mostly women of childbearing age (15-44). Women of color are 2-3 times more likely to develop lupus. At the present time there is not a cure for lupus, but there certainly is effective treatment.

Some of the symptoms: skin rashes, oral ulcers,joint pain and swelling, pleuritis, pericarditis, kidney disorder,seizures or psychosis,anemia, fever (over 100° F) ,extreme fatigue ,hair loss ,fingers turning white and/or blue when cold (Raynaud’s phenomenon).  This is not a disease that is universally fatal to all.  Overwhelming infection and kidney failure are the two most common causes of death in people with lupus. Recently there is new information which indicates heart disease may be another leading cause of death among people with lupus.


So now that you know a little bit about systemic lupus, let me tell you a little bit about why I'm able to remain positive despite knowing lupus has no cure.

Short answer: Lupus does not define me!

Long answer/history: When I was first diagnosed with lupus in 2002, I felt like I had received a death sentence.  Until that point, I had been energetic, rarely even caught a cold, and had a very active social life.  So being diagnosed with lupus sounded like I was bound to be sick for a few years and soon.

Over the years, though, I learned from others how to deal with my changed limitations.  We all clearly have limitations. And I learned to view the limitations due to lupus as changed, rather than additional limitations.  I realized that over the years I had developed self-imposed limitations, things I didn't even try to do. So now that I had lupus, I should evaluate some of the ways I was possibly limiting myself!

Here are just a few of the specific things that help me remain positive:

Blogging gives me a chance to express myself and expressing myself feels great! And when people comment or just tell me they read and appreciated one of my posts, it's an added bonus!

Exercising every day is a great mood booster and it helps me fight fatigue and joint stiffness.  That's right folks.  I didn't start exercising daily until some time after I was diagnosed with lupus.

Helping others always feels good. Did I help others before? Of course I did! But since my physical limitations have changed, I've learned to help others more in the area of emotional support. Prior to lupus, since I was young and energetic, I helped others physically, running errands, etc., thinking that's what they needed the most from me.  I never realized that I had so much to offer to others emotionally AND that I would gain so much emotionally by extending myself.

So now that I'm this beautiful butterfly, in my opinion at least, I'm determined to grow in happiness despite living with lupus!

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