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Life with Louie

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Louie... My Constant Companion

Lupus is an autoimmune disease, and just happens to be the one that I have. Instead of thinking of him as a disease, though, I try to think of him as a friend. Shortly after my diagnosis, my sister named him Louie. Thus, I generally refer to my experiences with lupus as hanging out with Louie instead. This lens is about lupus and what it's like to live with such a thing!

What is Lupus?

Lupus is an autoimmune disease that affects primarily women. "Autoimmune" means the body's immune system attacks healthy tissues in the body. Doctors have no idea what causes it, but they think there is some sort of genetic component as well as a a trigger of some sort. Lupus is a "look good, feel bad" disease where people really can't tell you are sick on the outside, but you often feel gross on the inside. It is also the great imitator- it can look and act like many other diseases and attack any system in the body. This makes it extremely hard to diagnose and treat.

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Resources

These are some of the books I've found useful in my journey with lupus. "The First Year" series is great. I really wanted a book that would explain what daily life was like with lupus, without so much science. I care about the science, but right after my diagnosis, I didn't care what my T-cells were doing so much as I wanted to know what it would be like when I wake up on Thursday. It is written by a lupus patient, but with the help of a doctor. Great book, and great help!

"Despite Lupus" is one I haven't read yet, but the author has a blog that I really enjoy. She is very practical and has lots of fun anecdotes. She is very knowledgeable in regards to lots of things in the lupus sphere.
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Diagnosis and Treatment of Lupus

How do you know you have it, and what do you do?

Lupus is very hard to diagnose. To even things out, it is also very hard to treat.

When I started doing research after my diagnosis, I read something that said, "If a rheumatologist diagnoses you with lupus, it's probably right. If any other doctor diagnoses you with lupus, it's probably wrong." Rheumatologists are doctors that study inflammatory diseases, such as lupus, and they are looking for specific things. There is no single test for lupus, but instead, they look at several factors in blood work and urine samples.
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What Do You Know?

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Leave a Message for Louie!

Louie wants to know what you think!

  • LiliLove Dec 16, 2011 @ 5:58 pm | delete
    I have learned something new today. Thanks for sharing your life story. Happy Holidays to you and your family!
  • WaynesWorld Dec 3, 2011 @ 10:51 pm | delete
    Louie may you someday be only a faint memory.
    <'(((><
    Around 7 years ago I was having headaches that would literally bring me to my knees. We had no insurance and my wife is a super worrier so I never told her. Well my wife and I went to this little Pentecostal church where my mother-in-law was going(we were all raised Baptist) because my wife's mom had had this phrophetic reading done where they pray for you and do this phrophetic look into your life. My wife wanted to get this reading done for herself so we went. She went up in front and I set in the audience almost at the back of this little church. The pastor and his staff were going on and on about how Satan had enslaved my wife with depression and anxiety. They were reading her like a book, all true but anyone that has been around the family might know all this stuff.
    Then the pastor said, "I noticed your husband didn't come up with you but GOD has told me the headaches you have been experiencing is a form of lupus and the prayer I just prayed has healed you." I was blown away, like I said about the headaches I had never told anyone how severe they were, wasn't holding my head, no one knew. A few more things were said about me from the ones up in front and by a few in the audience, all true. Than my wife joined me and we left. I have never had a headache like those again, nothing even close.
    I can't say if you pray you will overcome your situation, or if you get one of these readings you will be healed. I would say they might be worth looking into.
    I don't attend church but even before this I believed in Jesus, sometimes I have doubts but I work at trusting in the unseen with Faith.
    Maybe you will be the greatest spokesperson for "louie" there ever was, you already have my vote.
  • marciag Oct 21, 2011 @ 2:26 am | delete
    Great lens on lupus, learned something new today. Well done.
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Hello world. This is my bio. My name is Jami, and I have been looking into Squidoo for several months, but I finally just took the plunge. I hope you... more »

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