Posted by: hockeygrl1 | May 4, 2011

Lupus Awareness Month

May is lupus awareness month. It’s important not only because I have lupus, but because before I had lupus I had no idea what it was. This is still true about lupus. When people find out that’s what I have, they say things like, “I know so and so who has it and they can work, why can’t you?” or If you’re tired, why don’t you drink some caffeine to make it through the day.” or “if you can make jewelry or take a walk, you should be able to work.”

Lupus varies in intensity and degree. I have a severe case which is harder to get under control. For people who have a severe flare up, like me, there is a greater chance their lupus could be life threatening. Another thing that makes it hard for people who do not have lupus to understand is that everyone that has lupus has different symptoms. The symptoms you can have are:

  • extreme fatigue (tiredness)
  • headaches
  • painful or swollen joints
  • fever
  • anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • swelling (edema) in feet, legs, hands, and/or around eyes
  • pain in chest on deep breathing (pleurisy)
  • butterfly shaped rash across cheeks and nose
  • sun- or light-sensitivity (photosensitivity)
  • hair loss
  • abnormal blood clotting
  • fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • mouth or nose ulcers

These are just the general symptoms. In addition to these, a person suffering from lupus may have symptoms from the disease attacking specific systems like the renal system. Lupus can attack any system in the body and frequently attacks multiple systems at the same time. I am one of those suffering from multiple systems going haywire at the some time.

The medications used to treat lupus are toxic and were not developed for lupus. For example, chemotherapy, and they are not given for a short period of time. Many of these treatments need to be given for the life of the person. If chemotherapy worked for me, may of had to get it for as long as my lupus is bad. It’s been bad for almost 4 years now.

Please educate yourself. Please understand that I am sick and need to take this time to try to get better and that I may never be totally better. Please understand that when I say I cannot do something because I don’t feel well, it’s the truth. Please know that I cannot be out in the sun because it make my symptoms worse.

If you’d like to read more about lupus, below is a link to the Lupus Foundation of America website. Information in this post was taken from there.


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