Intentions for Adventures in Lupus
• inform people about the disease
• provide my experiences in the hopes that it doesn't seem like the worst thing ever
This first post will probably be the least "fun" of those to follow.
So what is lupus?
"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 foreign substances, like bacteria and viruses. With lupus, your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues and creates autoantibodies ("auto" means "self") to attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can be mild or serious but should always be treated by a doctor. With good medical care, most people with lupus can lead a full life." (http://www.lupus.org/webmodules/webarticlesnet/templates/illinois_lupus.aspx?articleid=650&zoneid=110)
My brand of lupus is SLE: Systemic lupus erythematosus. This is what most lay people (me and other non-medical folks) mean when they say lupus. Everyone is different and so is pretty much every case of lupus. My cousin and I both have it and off the top of my head the only overlap is joint pain.
My main symptoms are : extreme fatigue (left to my own devices I could probably sleep more than 12 hours a day... everyday), headaches, joint pain/swelling, hair loss, fingers occasionally get pale or blue when I'm cold, and I get sick pretty easily (the few white blood cells that I do have are too busy attacking me to do their job). I also have PTC but we'll get to that later.
If you've just been diagnosed or you know someone who has, take a deep breath. Life is certainly more challenging with lupus but it is not the worst thing in the entire world*.
*Remember every person is different. My last statement is in no way attempting to minimize what others with lupus have gone through. Having lupus isn't ideal but it is not fatal either.