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Saturday, June 13, 2009

Lupus, Lupus go away...

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)
hair loss
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!!


Tracey said...

Way back when you first mentioned you had lupus, I admit to not really knowing what it was, so I googled it.
You should talk more about it, after all it's a way of getting folk to understand this awful illness.
Take care

Wendy said...

I agree you need to inform others as to what it is like living with this illness. I pray you are having a better day today my friend. God bless!~hugs~Wendy

OldeAnniePrimitives said...

Don't ever feel bad for talking about this dreadful disease! I've only begun to learn about it in the last few years. It can strike any of us at any time! And the more we all know about it, the better. Plus...sometimes you just need to get your feelings off your chest. Sure hope you're feeling better soon.
Take care,

wholarmor said...

I'm sorry! My friend was just diagnosed with this recently. Hope you are having a remission soon!

Shellmo said...

Denise - I pray that you have better days - so sorry to hear you have lupus! I didn't realize all the different symptoms. One of my friends is going thru testing now and they think it might be lupus.

Denise said...

I want to thank you all for your kind comments. I'm not one to ccomplain about myself! But, sometimes I just need to get it out!


Sharon said...

So sorry you are not feeling well again. I miss you so much. Let me know when you are feeling better and we will get together and do something fun. Husbands optional !!