Thursday, February 28, 2008

Definition of Lupus

A lot of you have asked me what exactly is Lupus....since I am not good at explaining it...here is a brief overview of the disease. I hope this helps.

Lupus: A chronic inflammatory condition caused by an autoimmune disease. An autoimmune disease occurs when the body's tissues are attacked by its own immune system. Patients with lupus have unusual antibodies in their blood that are targeted against their own body tissues.
Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. When only the skin is involved, the condition is called discoid lupus. When internal organs are involved, the condition is called systemic lupus erythematosus (SLE). Up to 10% of persons with discoid lupus (lupus limited to the skin) eventually develop the systemic form of lupus (SLE).
SLE is eight times more common in women than men. The causes of SLE are unknown. However, heredity, viruses, ultraviolet light, and drugs may all play a role.
Eleven criteria have been established for the diagnosis of SLE:
Malar (over the cheeks of the face) "butterfly" rash
Discoid skin rash: patchy redness that can cause scarring
Photosensitivity: skin rash in reaction to sunlight exposure
Mucus membrane ulcers: ulceration of the lining of the mouth, nose or throat
Arthritis: 2 or more swollen, tender joints of the extremities
Pleuritis/pericarditis: inflammation of the lining tissue around the heart or lungs, usually associated with chest pain with breathing
Kidney abnormalities: abnormal amounts of urine protein or cellular elements
Brain irritation: manifested by seizures (convulsions) and/or psychosis
Blood count abnormalities: low counts of white or red blood cells, or platelets
Immunologic disorder: abnormal immune tests include anti-DNA or anti-Sm (Smith) antibodies, falsely positive blood test for syphilis, anticardiolipin antibodies, lupus anticoagulant, or positive LE prep test
Antinuclear antibody: positive ANA antibody testing
The treatment of SLE is directed toward decreasing inflammation and/or the level of autoimmune activity. Persons with SLE can help prevent "flares" of disease by avoiding sun exposure and by not abruptly discontinuing medications.

Wednesday, February 27, 2008

The diagnosis is in...now what

So since I already have a blog dedicated to my kids and my weight loss, I decided to write one dedicated to me and my feelings and health. Feel free to read it or not....it is a place that I can find solace and write my feelings and worries and where family far away can find out how I am without having to ask all the time, or better yet not get mad at me for not telling them what is going on.

So yesterday I had my 2 month appt with the Rhemotoligist and he said that I am doing remarkably better then he ever expected which is great news. On the flip side of that, he has now diagnosed me with Lupus and Chronic Fatigue syndrome which is the bad news. Before he was thinking Rhematoid arthritis which was the better of the two to have but now it is the worse one. Although I am doing well with this at the present time it is just a matter of time until another flare up. Then I wonder about all the scary things that no one wants to think about...Will I live long enough to see my children grow up, am I going to have major health problems from this....what is the long term prognosis?? Many many years ago when Lupus was diagnosed people died within 3 months....mostly because they took a very very long time to come to a diagnosis. Now with the advance in medicine they say people can live a normal and full life....but what if I am not one of those lucky ones. I now have an extremley increased risk by 70-80% of Coronary artery disease and heartattack not to mention the other bad things that can go along with the disease....kindey problems, blood transfusions, blood clotting problems...should I go on or do you get the picture. As if my depression wasnt already bad at times, now I have this to worry about. My next issue, I have this thing in my side that has been causing me pain, a lump that can be felt...they have done an ultrasound and found nothing which origianlly they were thinking it was a hernia..now they are worried that is something more serious so they want to get the ball rolling asap in case it needs to be removed quickly...so they next step is a needle biopsy and then maybe an open surgical biopsy....do I really need this at a time like this??? So as if you can't tell, today is a depressing day for me...as I sit here and contemplate my life and what I have done, I realize that their is still so much I want to do. I look at my kids beautiful face and wonder if I will see them grow up and graduate from school, get married, or even have kids. I lay down at night with my husband and study his face wondering if it will be the last time that I will see it clearly.

I guess I try to find comfort in the family and close friends that I have, and the fact that I have two beautiful and healthy daughters who have no idea that mommy has anything wrong with her. So for now, I am going to look at each day in a new light and enjoy my kids so much more and not worry so much about the small things...because you never know when it all might be gone.