Introduction to Lupus and my life with Lupus.

I have Lupus, also known as SLE (systemic Lupus Erythematosus). Lupus is an autoimmune disease and there is no cure. Scientific advances have been made but there are still many things not known about Lupus. When a person has Lupus, it means the body's immune system is malfunctioning. With Lupus, the body begins a war against itself. Lupus is not a disease that you catch from others and it's not a bacteria that invades your system, nor a virus floating through the air, waiting to attack an innocent body. The body's immune system is designed to send out 'killer cells' specifically designed to kill off any foreign object that invades the body. This is your natural defense mechanism against disease. A virus or bacteria invades your body and your body sends out killer cells to fight the battle for you! When something weakens the immune system the body becomes much more susceptible to disease. When the body has a strong immune system, a person recovers more quickly from infections. With Lupus, the body itself makes a critical mistake. It sends out killer cells, build to destroy and to kill not foreign invaders within the body, but cells with the same DNA. Consequently when this happens, a person feels weak and sick as their body builds up a multitude of these killer cells and sends them off to do their work.
The killer cells are called antibodies. A person with Lupus has an attack of antibodies sent to destroy parts of it's own body instead of a foreign invader. When a Lupus patient experiences this flare up of antibodies, working vigorously in their system to destroy their own body cells, this person is said to be in a 'Lupus Flare.' The name Systemic Lupus Erythematosus, refers to the disease affecting parts of the entire system. In some cases of Lupus the antibody attack is only against the skin cells. If no other organ is involved, it is called Discoid Lupus.
The diagnosis and treatment plan for a person with Lupus is done through a rhuematologist. Lupus is considered a type of arthritis and this is why the specialist for Lupus is the rhuematologist. Lupus arthritis is not crippling to the joints, though it does cause swelling and inflammation in the affected joints. It's the damage that Lupus causes to the lungs, heart, kidneys and every other organ of the body that is so serious. Lupus sometimes affects the brain and this is called central nervous system involvement or CNS.
The word, 'Lupus' means wolf. The name was given to the disease because many that live with Lupus have a typical butterfly rash on their face and neck. The skin appears very red across the cheeks and chin, and sometimes the rash extends to the ears and down the neck, leaving a very light spot under the chin that is not affected. The markings are much like the face of a wolf.
This article is not a medical article. The Internet is full of medical articles that will tell you about Lupus. This article is an introduction to Lupus and to the way it affects my life. This is a personal story because Lupus is a very personalized disease. For each person learning to live with Lupus the story will be different because the disease affects each person differently. It depends on the cells within our body that are being attacked during a flare, as to how we are feeling and what our symptoms may be. Lupus patients have individual symptoms and these symptoms may vary a lot between any two people.
I have Lupus, but like many other people with Lupus, I also have other autoimmune diseases. Often these other autoimmune diseases seem to run a parallel course with Lupus. Not all Lupus patients have other autoimmune problems and some have more than I do. I was first diagnosed with Fibromyalgia and osteoarthritis. Lupus was suspected but could not be pinpointed. Diagnosing Lupus can be very difficult. When a person has Lupus, it mimics other diseases depending on what part of the body is under attack. I was first diagnosed with Lupus in 1999. In 2001 I was also diagnosed with Rhuematoid Arthritis and Raynauds. I have Irritable Bowel Syndrome but this may be caused from any of the others problems I have. So often, these things are all linked together and you can't really break them apart into individual diseases.
Currently I am 53 years old and am on a treatment plan for Lupus that is working for me. The drugs used to treat Lupus and Rhuematoid arthritis are very harsh and hard on the body, but so are the diseases we are trying to live with. Each person has to decide what medications they are willing to take to keep the disease under control. I am taking 400 mg of Plaquenil each day, 200 mg of Celebrex and 50 mg of Trazodone. It took over nine months for these medications to build up enough in my system to help my body battle Lupus. After a flare that lasted over three years, I am very pleased to say that Lupus seems to be in remission for me today. My lab reports came back two months ago and no Lupus activity was detected. The tests will be repeated again in six months and if I am still symptom free, the doctor will consider this a true remission. Once Lupus is brought into remission it can last a few months, or a year or several years. It is an individualized disease that reacts differently with each person.
Many of my friends who have Lupus are not so fortunate. Plaquenil is harsh and has many side affects for some. I have had no serious reaction to Plaquenil and it is doing much to help me. A lot of those suffering with Lupus cannot tolerate Plaquenil and other drugs are used.
I read an article in Author's Den by Dreamweaver. She wrote about living with Fibromyalgia. She told about a day in the life of someone living with this invisible disorder. For many, Lupus is another invisible and mysterious disease. Living with Lupus is often very difficult because you look so healthy! Some with Lupus have such rosy cheeks and look like they can't possibly be sick! I have those bright rosy cheeks myself.
Lupus can and does become fatal. I have lost two good friends to complications from Lupus. The upside is that it's not often fatal anymore. Most people with Lupus can expect to live a normal, though restricted life span. For some Lupus appears fast and aggressive and it seems there is little to do to stop the progression of the disease. For many with Lupus, it starts out mildly.  Lupus progresses slowly over the years with the body doing damage to it self and the person affected doesn't  realize what is happening until later in life.
I am not a typical Lupus patient, if there is such a thing. I am not plagued with Pluerisy and I don't have a low platelet count, nor do I have any known kidney problems. All of these are very common with Lupus.
For me it is very hard to tell you or my doctor how I feel. It is hard to learn which autoimmune disorder is acting up to make me feel the way I do on any given day. I now understand the severe chest pain and rib pain that I experience from time to time are much more related to Fibromyalgia than to Lupus. I look at my hands and see the twisting knotted knuckles or feel the terrible pain and stiffness in my back and know that Rhuematoid Arthritis, or Osteoarthritis is kicking in. If my hands puff up and are achy and sore, I know that Lupus Arthritis is causing the problems.
I have had Lupus for most of my adult life, but did not know what was wrong and the doctors could not find out. Many with Lupus are often treated as though they aren't really sick and that their health problems are all in their minds. Years ago many Lupus victims ended up in mental institutions because of this attitude. Since no 'foreign disease' is present, it is very hard to detect and pinpoint a cause for the frequent and prolonged illnesses a Lupus patient will have. I never went through this myself, but many of my friends have. The doctors always knew something was wrong with my body but could not diagnose it, so they treated my symptoms.
When I was in a Lupus flare, the doctors often thought I had Leukemia or bone cancer. Over and over I have been tested for Leukemia but each time I was found to be cancer free. I have never had any kind of cancer. What I do have is Lupus. My body builds antibodies and directs them to my newly formed red blood cells. I often test positive for Anemia but test negative for iron deficiency. My body is working fine and my bone marrow is producing an abundance of healthy red blood cells. Before my new red blood cells are mature and able to do the job they were designed for, my own antibodies were killing them off. This is one way that Lupus affected my body. This mystery was only solved a year ago! After years of testing and wondering, the doctors finally isolated the cause of my anemia.
Antibodies also attack my entire digestive system and cause severe inflammation of my esophogus tube, small and large intestines. This is another ongoing problem I have dealt with most of my adult life.
I am plagued with nasal sores, swollen neck glands and achy muscles. I felt like I had the flu for three years during the last bad flare. Through it all I consider myself very lucky. Each time my body attacks itself, destruction is done and then before it gets totally out of control, it stops! Over and over this has been the course Lupus has taken with me. For some the story is much worse.  The destruction begins, it cannot be controlled and another person loses the battle against Lupus.
At one time Lupus caused severe inflammation of my blood vessels. My body was not able to pump enough blood through my system too keep a sufficeint oxygen supply to my brain and heart. At this stage I was scared. I felt like I was losing my mind. My short-term memory was almost gone. I felt like there was a short circuit going to my brain. At the same time, due to the heart not receiving enough oxygen, I experienced exhaustion like nothing I'd ever felt before or since. To walk up one flight of stairs I would have to move slowly. By the time I'd reach the top I'd be trembling with weakness and it was hard to breathe. I would perspire profusely as if I'd been doing a thirty-minute workout.
Over the years, since young adulthood, Lupus has been lurking through my body appearing first as one disease and then another. I gave birth to three children. Each pregnancy was worse on my body than the one before. The doctors had no idea what was wrong but knew something bad was going on. My body reacted to pregnancy as if I was allergic to the baby I was carrying. I would become very ill and vomit during the entire pregnancy. My red blood count would drop to very low levels and nothing would help it hold it's own. By the time I became pregnant with the third baby, I gained only 3 1/2 pounds before she was born. My red blood count was so low the doctor talked about blood transfusions, which I refused. As soon as the baby was born, within the first 24 hours, my red blood cell count started picking up on it's own. Just giving birth to the baby solved whatever reaction my body was having! After the birth of my third baby, the doctors found my blood to be full of antibodies and thought maybe it had something to do with blood types or the RH factor.  These antibodies never affected my baby, only me, and this was very confusing to the doctors. I was told that if I tried to have any more children there was a fifty-percent chance I would not live through another pregnancy. I chose not to go through it again. Looking back, now we know that pregnancy caused a Lupus flare. With each pregnancy, the Lupus flare was much worse than the time before.
Lupus is famous for masking itself as other diseases and for me this certainly has been the case. About 15 years ago I was diagnosed with Cat Scratch Disease. The lab test came back positive. I was very ill and instead of recovering in ten day to two weeks, I continued to get weaker over the next few weeks. I was going to the doctor every week and no matter what treatment they tried, I did not recover. A few months into the disease, I took a turn for the worse. I lost 50 pounds and was too sick to live. At one point my doctor told me that he had no more ideas on what to do. I refused to go into the hospital and he said he was doing all he could do and agreed to let me stay home. At one point the doctor told me that without a miracle and a strong belief in God I wasn't going to make it. My vital signs were all dropping and my body was trying to shut down and still no one knew why. They thought it was some rare reaction to Cat Scratch Disease. Now we know that the Cat Scratch Disease started one of the worst Lupus flares of my life and I came very close to dying. At this point the doctors and I knew nothing about me having Lupus. Again it had disguised it self as another disease.
I have had chronic liver problems for many years. Nothing life threatening but high liver enzyme counts, and Cirrosis of the liver. This was thought to be caused by an early childhood case of Hepatitis. Over the years every doctor I have seen, including my family doctor today, has thought I have Hepatitis C. I've been tested for Hepatitis C so many times it has became a family joke. Not one time did any of the hepatitis panels come back positive. I had no liver disease that could be found and I did not drink alcohol or take drugs. This remained a mystery most of my life, until I realized that it was Lupus attacking the liver and once again it's presence was in my body but disguised as something else.
Today, I am doing better and hope that Lupus is truly in remission. I have taken the past 10 months off work in hopes that with the new treatment plan and more rest, my body will continue to respond. I am going to return to work before Christmas, working full time and see how this affects Lupus.
Living with Lupus has been a challenge for me. Living with a disease that I can feel, know its presence is within me, but can't be found, has been a frustrating experience for me over the years. I knew something was wrong, the doctors never doubted the fact that something was wrong, but it went undetected for at least 33 years and maybe longer. It's very hard to trace back and see where it all began. The first pregnancy may have triggered Lupus but I will never be sure.
I have good days and bad days in dealing with Lupus. For three years most of my days were full of pain, exhaustion, and frustration. I had to move forward and insist on a proper diagnosis in order to receive the help that is available for my problems. Getting a diagnosis was a long hard battle for me. In my case and with many others, Lupus masking itself as other diseases caused my diagnosis to be a very long, drawn out ordeal. This is often the case and it is sad to know thousands of people in the world are suffering from Lupus and they and their doctors are not aware of it.
There are no specific laboratory tests saying "Yes this person does have Lupus" or "No this person does not have Lupus." The doctors do have a series of 'indicative' tests called a Lupus Panel that they use to evaluate a patient for Lupus. Even so, these tests are not 100% accurate in detecting Lupus. The tests are important but must be used in conjunction with an accurate health history of the patient. Present symptoms are also very important to the rhuematologist in diagnosing Lupus. Many people suffering with Lupus have other paralleling autoimmune problems so this complicates the diagnostic procedure even more.
I am a prime example of just how complicated the diagnostic procedure can be. I was first diagnosed with Lupus in 1999 at the age of 49. Later another doctor decided I did not have Lupus because my Lupus Panel tested negative when he ran the tests. Three months earlier some of the tests were positive and some borderline. After being on Prednisone for a month, the lab results changed to all negative. I held my own in searching for the cause of my illness and it was two years later that Lupus was discovered in a very active stage. At this time, my primary care physician suspected I had Leukemia. I was not alarmed because this was old news to me and I was confident I did not have cancer of any kind. After several tests, Leukemia was tossed out the window. She then was positive I had some rare bone disease or bone cancer. She and I discussed Lupus and other autoimmune problems, but she was convinced, according to my lab reports that I did not have Lupus. I will say this doctor was thorough and as determined to uncover the mystery disease, as I was.
She sent me in for a full body bone scan, sure this would give her the answers she was looking for. When the results came in, she called me into her office for a consultation. I had no bone disease and no bone tumors. I did have arthritis from the top of my head to my toes. She also told me I tested negative to Rhuematoid Arthritis, but had all the signs and symptoms. At this point she said she would have to give up because she had no more ideas to research. This doctor said, "When I first met you and went over your records, we discussed Lupus and I was positive you did not have Lupus.  I am going to retract that statement and say I think you have Lupus and it's masking itself as other health problems, but I can't diagnose Lupus. I will refer you to a specialist and let them find out what is going on. No doubt you do have an autoimmune disease but the specialist will be able to find out for sure which one it is."
I went to the rhuematologist with my stack of medical records, feeling discouraged and frustrated. This was not a new path for me. I was in extreme pain, weak, not able to concentrate, and still did not know what was wrong. I had a friend drive me to Bakersfield CA to my rhuematologist appointment. Whatever I had was affecting my memory and concentration. At this point, my husband and I were afraid for me to drive alone. On previous occasions I had driven away from the house by myself, and forgot where I was going, forgot why I was out and forgot how to get home. At this point I called these moments 'blank spots' in my mind, for lack of anything better to call them. I feared I was losing my mental capabilities and I was scared. I was frightened that not only was my body letting me down, now my mind was becoming seriously affected and no one could tell me why.
The rhuematologist looked over my medical records and did a very long health history on me. He said he was sure I had Lupus and severe arthritis, but wanted to do more tests. He did a Lupus Panel and other tests and told me to come back in two weeks. Two weeks later I returned to his office and he diagnosed me with Lupus. My ANA was positive and two other tests on the Lupus panel were also positive. Along with these new test results and my long health history the mystery was solved. I was started on a treatment plan to help control Lupus and Rhuematoid Arthritis.
I still did not have the rheumatoid factor and discussed this with my doctor. He explained that only 80% of the people with Rhuematoid Arthritis test positive for the rheumatoid factor. That leaves 20% of the people with R/A that often go untreated. The doctor said a large majority of this 20% also had Lupus. A person with Lupus often gets false positive/negative lab reports and it's another of the mysteries of the disease itself. He explained that when a person has a complicated series of autoimmune disease they run a parallel course and cancel out each other when lab tests are done.
It's been a long hard battle, but I feel I am winning the race after 30 years of running. Today I can slow down and stay on my treatment plan and put it all in God's hands. I would like to see more information about Lupus available to the general public. Lupus is not a well-known popular disease. When I was first diagnosed with Lupus I had no idea what it was. Many newly diagnosed patients have not heard of Lupus until the doctor starts testing for it and talking about it.
Government funding for researching Lupus is small compared to many other diseases. Since Lupus is not well known, there are no major campaigns to raise money for research. The National Lupus Foundation has designated October as Lupus Awareness Month and this organization is a lifeline to anyone diagnosed with Lupus.
I run an online Lupus support group. I call this support group LWLupus (Living With Lupus). This support group is open to all that want to learn more about Lupus. I encourage family members and friends of those living with Lupus to join and find out what their loved one is experiencing. Our group also supports those with Fibromyalgia, Rhuematoiid Arthritis, Raynauds and other autoimmune diseases. Anyone is welcome in our group. If you have an interest in learning more about Lupus or learning more about those who are Living With Lupus, please join us at:
http://groups.yahoo.com/group/livingwithlupus/
My email is Sherry.sherrygibson.com and if you have questions about Lupus or want to talk about it, please email me and I will do what I can to help. Three of my poems are dedicated to Living With Lupus. The Silent Wolf, Memories, and Little Vampire Baby are Lupus related poems.
I was invited to do an interview on Author's Den Live Radio Talk Show. Roger Vizi dedicated much of this interview to Lupus Awareness. I am so grateful to Roger for giving me this opportunity to help with Lupus Awareness. You can download the interview and listen to our discussion by visiting
http://www.authorsden.com/radioshow.asp
Scroll down the page and you will find the download to my interview listed on September 21^st 2002.
My goal today is to promote Lupus Awareness and to share my story with others.  While living with Lupus I want to encourage all those suffering with chronic illness to continue to dream and to know they can make those dreams come true .  My first book, Only a Game is being published by Publish America.  This was a lifelong dream for me.  In my weekly newsletter, I try to cover ideas for success not only in writing, but in life.  I encourage others, especially those with chronic illnesses to share poems and articles. I want others who suffer with chronic illness to know they can reach out and make dreams come true . 
All reviews on this article are appreciated!

© Copyright 2002 Sherry Gibson. All rights reserved