The Life of a Lupie

I haven’t been in the mood to post very much.  I’ve been dealing with my favorite time of the year — a lupus flare.  And yes, they occur multiple times during the year, but for some reason, springtime bothers me the most.

A lupus flare, or flare-up, brings with it lots of symptoms:

  • persistent fatigue
  • persistent weakness
  • body aches
  • fever
  • hair loss
  • nose bleeds
  • mouth sores
  • skin rash
  • hives
  • painful, swollen joints
  • cognitive dysfunction
  • shortness of breath
  • coughing up blood
  • persistent headache
  • nausea and vomiting
  • persistent foot and leg swelling
  • puffy eyelids
  • and more!

And, yes, I tend to get all or, at least, most of those symptoms pre and during flare-up.  Most people I meet don’t really know much about lupus.  Those who say they know what lupus is typically just have an either basic or TV-influenced opinion or knowledge base about it.

Lupus is a chronic, autoimmune disease.  Chronic means that the symptoms typically last longer than 6 weeks, and can often last for years.  Autoimmune means that your immune system can’t tell the difference between foreign invaders (viruses, bacteria, germs) and your body’s healthy tissues.  Your body creates autoantibodies that attack and destroy healthy tissue, instead of the normal proteins, called antibodies, that protect the body from foreign invaders.  Lupus is a disease of flares and remissions.  Lupus can range from mild to life-threatening.  Lupus is not contagious.

I have Systemic Lupus Erythematosus.   Systemic lupus can be mild or severe.  I have a severe form of lupus.  Living with lupus isn’t impossible.  But, it requires a lot of life changes.  I’ve been fighting them, but I feel like I am getting closer and closer to being in the right place in my life to be able to accept and embrace those changes.

Ever since having Ellie, I have been in a pretty constant state of flare-up.  This is common and expected.  Unfortunately, my “lupus fog”, or cognitive dysfunction, has been fairly aggressive.  That is the hardest part for me to cope with, actually.  Mental fatigue, memory impairment, difficulty expressing thoughts.

Many of the medicines that could possibly help me feel better are, unfortunately, not safe for me to take while I’m still breast-feeding Ellie.  Add on top of that a difficult time finding an endocrinologist — and you have a lupie who isn’t currently taking any medicine.

All in all, life with lupus is just like life in general.  There are challenges, but nothing impossible.  Hopefully, this insight helps you understand lupus a little better.  And maybe, it’ll help you understand me a little better, too.


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