Saturday, March 20, 2010

What is Lupus?

I was diagnosed with Lupus about 15 years ago. As I look back, I can see symptoms a lot farther. Lupus is a strange and complex 'disease'. About 20 years ago I had a doctor say in passing that I was 'allergic to myself'. I laughed even though it sounded very accurate.

In the beginning, I felt really sorry that I just couldn't do things like usual. I think my poor husband thought I was being lazy. I know other folks did. It isn't that I didn't want to do things, but that I didn't have the energy to do them. Even simple things like doing the dishes or the floors. There was pain to deal with too. But there weren't any reasons for the pain. At least not that we could find. I could be standing in the kitchen decorating a cake and just start hurting. I thought at first it was the height of the counter top. I am a little on the short side, so that made sense. Then I thought it could be the kind of shoes I wore (and more likely just being barefoot). But the pain would be enough to make me go sit for a while. We only had 3 children at that time and the youngest was just a baby. I think this was close to the beginning of my Lupus symptoms.

Lupus is an auto-immune disease. It is not to be confused with AIDS which is an auto-immune deficiency. There is a big difference. You will have to look it up.

For me, lupus is inflammation everywhere! Inflammation internally and externally. My skin is affected by the lupus. I have to be very careful of sun exposure. It can cause extreme burns and burn-like conditions within just a few minutes. I wear sunscreen with an SPF of 75. I also wear sunglasses, long sleeves, gloves and hats. The inflammation is in my organs, joints and skin. I have had several biopsies for whatever reason. They all show chronic inflammation. The biopsies may or may not show anything else. With Lupus I am more susceptible to illnesses, particularly lung problems. My immune system is compromised. It takes twice as long or more to heal even for simple things as scratches.

Lupus in general is a disease where your antibodies see normal tissue and normal cells as foreign. The antibodies are designed to attack anything foreign in the body. So, when the antibodies get confused and see normal tissue as foreign, then it attacks to try to heal the body. It is a constant battle. Lupus effects everyone differently. My mom has lupus, but hers is different from mine. Some symptoms are the same and some are not.

Lupus takes your energy away. There is fatigue, pain, swelling, fever and rashes. If you have Lupus you will more than likely to have more of the over 200 auto-immune diseases. I have about 5 of them, Rheumatoid Arthritis, Alopecia, Asthma, and Reynauds Syndrome.

There are tests to determine if you have Lupus, but the tests are not completely accurate. They can read false even if you have symptoms. A Rheumatologist is often recommended to treat Lupus. Find a good doctor. You need one that will listen! If you don't think the doctor is serious in treating you, find one that is. People with Lupus are fighting a debilitating disease. There is no reason to fight the doctor too. Lupus is often considered an invisible handicap. You don't look sick or disabled, but you have difficulty functioning and performing even simple tasks.

There are medicines that help alleviate the symptoms of Lupus. There are studies trying to find a cure for Lupus. Lupus can go into remission. When a flare hits it can be mild or severe, but either way it can be very difficult. I am in a study for a Lupus medication. I have participated for 3 years now. I am now getting the real medicine and it helps for about 2-3 weeks. The doctor placed an IV port in my chest to receive the infusion. I actually look forward to the infusion because I know it will help for a while. Plaquenil is often used for Lupus, but people of color need to be careful. They may have adverse reactions to it. It takes 3-6 months for plaquenil to work. There are anti-iflammatories and pain meds. Some people will need anti-depressants. It can be very depressing to be constantly in pain and immobile.

My auto-immune diseases (AI) are not my only health issues, but those are for another day. Right now I am doing ok. I won't say great. But everything seems to under control. I have been fighting off bronchitis for 3 weeks now. The coughing is hanging on and I knew it would. I had a nasty yeast infection throughout my system for months, but I think it is finally gone. Praise the Lord!

By the way, God is my source of strength and hope. My husband is next. He has come to realize what my disease does to me. When I say, "I am done", he knows it is time for me to stop everything and rest a while. He has taken over most of the household chores. I do what I can when I can and he does the rest. He loves me inspite of my health or lack of it. I have the world's best husband!

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