Sherry - A Survivor Gives Her All
(Sherry is founder of LWLupus, a wonderful online forum and the author of a psychological thriller. She gives the wolf who waylaid her as good as she gets, pulling no punches and packing a mighty wallop.)
I have 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.
With Lupus, the body itself makes a critical mistake. It sends out killer cells, built to destroy and to kill not foreign invaders within the body, but cells with the same DNA. 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. 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 Rheumatoid 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 Rheumatoid 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.
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 itself 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 Pleurisy 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 Rheumatoid 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 esophagus 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 sufficient 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.
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 itself as another disease.
I have had chronic liver problems for many years. Nothing life threatening but high liver enzyme counts, and Cirrhosis 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.
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 that fact, 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 rheumatologist 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 Rheumatoid 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 rheumatologist 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 rheumatologist 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 rheumatologist 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 Rheumatoid Arthritis.
I still did not have the rheumatoid factor and discussed this with my doctor. He explained that only 80% of the people with Rheumatoid 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.
In November 2003 I developed macular degeneration in both eyes due to the use of Plaquenil. I was taken off this medication immediately. My doctor started me on Methotrexate to help control Lupus and Rheumatoid Arthritis.
I have been taking it almost three months, but the doctor is gradually increasing the dose as he evaluates my lab work along the way. So far the lab reports look good and I'm showing any signs of having problems with Methotrexate but it is not keeping Lupus under control as well as the Plaquenil was.
I took Plaquenil for two years to the month before I was taken off of it. In October 2003 I noticed my vision blurring at times. By November of 2003 I noticed a blurry section in the middle of things I was reading, and small print on the computer was very difficult to read. Emails that came to me in smaller print had to be upsized for me to read. I know something serious was going on. I went to the eye doctor right away.
He dilated my eyes and did a complete eye exam and noted a cottony appearance on the macular of both eyes. He scheduled me for a computerized central vision test. I took the test and he compared it to one that he did six months earlier. There was a very definite pattern of macular degeneration in one eye and the beginning of a pattern in the other eye. This and extreme tiredness are two of the very rare side affects that can happen when taking Plaquenil.
Macular degeneration is damage done to the central vision and is always a rare possibility for those taking Plaquenil. Rare it may be, but it happened to me. It was caught early as I am very careful to keep up on visits to my eye doctor and now I'm thankful for that. During this same visit it was also discovered that I have cataracts on both eyes. Aging can be such great fun! Always something new to look forward to it seems.
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 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.
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.
At my AuthorsDen
website, 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 AuthorsDen 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 the AuthorsDen Radio Show
. Scroll down the page and you will find the download link to my interview listed on September 21st 2002.
I read an article in AuthorsDen 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.
I run an online Lupus support group called 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, Rheumatoid Arthritis, Raynaud's 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 LWLupus
. If you have questions about Lupus or want to talk about it, please email me and I will do what I can to help.
©2002-2004 Sherry Gibson. All rights reserved