Understanding Lupus

This post is dedicated to R, a fellow resident in the transition house who is a mother of four young daughters, all under 12 years old, and who is living with Lupus.  R explained to me that she has had Lupus for twelve years, and during the first six years she did not take medicines for it.  As a result her body was severely compromised.  She also confirmed to me that all her pregnancies were difficult as a result of having Lupus.  And she said that two years ago she was re-classified as having the most severe form of Lupus, which is called Systemic Lupus  Erythematosus (SLE). Now she is considered to have the aggressive form of SLE.  She has had 41 surgeries during her 12 years with Lupus.   pro

I came to understand much more of what R and her daughters go through now that I have taken the time and energy to educate myself about Lupus.  R was so moved that I had taken the time and effort to study Lupus that gave me a hug and thanked me for my compassion for her and her family.  She asked me if there was any hopeful information on the web site for her, and I said that sadly not really.  I said the site did mention that 80 to 90% of people with Lupus can live 10 or more years with the disease.  But she has had it for 12 years, and she is experiencing heart problems and also kidney calcification as a result of this problem.  Her stomach is also severely damaged by the Lupus.  And she has lost 50% of a lung as a result of Lupus.

I did find one source of hope. The treatments for Lupus are becoming  more effective.  The old treatments for Lupus had only a 50% 5 year survival rate, whereas the new ones have a 95% survival right.  I really hope R is included in this survival rate. http://www.lupus.org/webmodules/webarticlesnet/templates/new_learntreating.aspx?articleid=2245&zoneid=525

Lupus is a disease characterized by an overactive immune system.  The way to treat Lupus is to give patients immune-suppressant drugs which are designed to suppress the overactive immune system.  Of course the risk is that giving someone immune-suppressants by definition weakens their immune system, making them more prone to disease and infection.

R often suffers from the symptoms of Lupus.  For instance, she frequently experiences extreme fatigue,  headaches, and severe and painful joint soreness which renders her unable to walk  without great difficulty. http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2235&zoneid=523  In addition, one of the most difficult aspects of Lupus is its sheer unpredictability.  It is hard to plan for yourself and your family when you don’t know from one day to the next if you will be experiencing flare-ups that may make it impossible for you to work and can often land you in the hospital for several days at a time.  This situation is naturally stressful for R’s young daughters, who are forced to cope with their mother’s routine visits to the hospital.  Can you imagine being 5 or 6 years old and not knowing from one day to the next if your mom was going to be working or in the hospital?  And also R is a single mom who fled a violently abusive man, and so that makes it even harder. 

Lupus can cause depression because of its unpredictability and can also make it hard for people living with it to hold a job.  That’s because especially since R does manual labor in construction which requires a great deal of physical strength.  And obviously with Lupus you don’t know from one day to the next if you will be well enough to work, and also you may force yourself to go to work even when you’re really not well enough to be at work.  Some people with Lupus can work full-time, but others can only work part-time with Lupus.   

I said that I noticed that fevers were often the indications of flare-ups and I was concerned that she had a fever of 103 the night before as it could be a sign of a more serious or even life-threatening condition.  She told me the fever was actually 104.6, and that was really alarming to me as I thought that I read that fevers of 105 or more are often fatal.  She said this is true but that she has managed to reduce the fevers with Tylenol – but if that doesn’t work she has to go to the hospital.  I can’t imagine living with such a terminal and difficult condition.

She already has some of the complications of SLE such as inflamed kidneys.  http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2234&zoneid=523The web site said the kidneys can cease to function, leading R to need kidney dialysis.  When I used to ride the Special Transportation Service in Palm Beach County, I often used to see exhausted kidney dialysis patients finished with their treatments, and it saddens me to think that R could soon be in that position with four young daughters.  She mentioned  that heart disease is another complication of SLE.

I am glad I took the time and energy to educate myself more about Lupus.  Now I can better understand what R and her daughters are going through. I think the more people who understand Lupus, maybe the more compassion people with Lupus will experience.  I think people are frightened by Lupus because we don’t understand it.  I know I was scared of Lupus before I met R.  Now I feel sad for how much R and her daughters are suffering, but at least I understand the root causes of their challenges.