and please just leave me alone.
I usually don't talk much about my illness. I just feel that people don't want to hear it and I don't like to complain.
It seems that lately I have been having more flares and they are much closer together. They are caused by many things, stress being a huge factor. I get so tired, exhausted really, so easily. My joints and muscles just ache. My head hurts. My hands and feet are swollen. I have the "butterfly rash' on my face. I can't sleep, so I am irritable (I know hard to believe, huh!! LOL). I have no energy to do much of anything.
I was diagnosed in 2000 after spending 2 1/2 weeks in the hospital. My lungs were filling with fluid and I could not catch my breath. I was coughing my fool head off. I went to the ER and they admitted me immediately. I had every test imaginable(x-rays every day, internal and external ultrasounds, radiactive resistance tests, mammogram, many heart tests, breathing tests, so many blood test my arms looked a pincushion, brain wave tests). We knew exactly what I didn't have and what wasn't wrong with me, but couldn't figure out what was wrong.
I was sent home without a diagnosis. After 5 days at home, I was worse. I went to see my doctor and he sent me straight to the hospital. I went to admitting and they were waiting for me. After more tests they decided I needed my left lung drained. I was drowning in my own fluids. They also wanted a biopsy of the fluids and the lung. I had 2 chest tubes in after surgery. I stayed another 5 days and they took the chest tubes out. The biopsies came back fine. I was breathing easier and the cough was gone. After a couple more days they sent me home again. Still no diagnosis.
I saw many doctors in the weeks following. Finally, after 3 months they came back with the diagnosis of Lupus. Of course, we had never heard of Lupus. But at least we had a name.
So, hear I am. 9 years later! Still alive and kicking! But not at all the same person I was before. Sorry if this post was boring or depressing! But sometimes I have the need to talk about this thing that basically runs my life.
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). In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). 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. These autoantibodies cause inflammation, pain, and damage in various parts of the body.The most common symptoms of lupus, which are the same for females and males, are:
extreme fatigue (tiredness)
painful or swollen joints
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)
abnormal blood clotting
fingers turning white and/or blue when cold (Raynaud’s phenomenon)
mouth or nose ulcers
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 range from mild to life-threatening and should always be treated by a doctor.
So there you have it....the boss of me!!