Wednesday, June 30, 2010

Talking About Lupus

I want to discuss something that I have sometimes mentioned, but on this blog I have never discussed.  I have Lupus.  A daughter of a neighbor was recently also diagnosed with Lupus, because of similar signs and symptoms to my illness.  Living in Honduras sometimes has its challenges and this is one of those things that proves difficult in Honduras so I have decided to talk about an illness that is very personal to me.

I was diagnosed with Lupus about eight years ago.  It was very difficult for me, because it meant facing the reality that my child bearing days were over and that a miscarriage of twins not only led to the diagnosis of a lifelong illness that took the life of my paternal aunt, but also meant I was infertile after having children during early years.

In Honduras not too many people know what Lupus is or how it is treated nor do they even understand what doctors must see you and how to react to the illness.  Lupus of course is characterized as a very serious autoimmune disorder that manifests in different forms and can be genetic, drug induced, or even unexplained.  In my case it is genetic and in my neighbor´s case it is unexplainable. Her Lupus is more aggressive than mine is.  I have faced extremely difficult boundaries in finding adequate treatment and access to qualified doctors for Lupus and I have to wonder how many people in Honduras go without ever being diagnosed with the disease and instead try to explain it off on other issues, fatigue is most likely related to anemia here as people tend to self medicate.  The pain in joints as either a case of flu or even arthritis.  When hair comes out they think perhaps that it is nervousness(as many ask me when I lose hair if I am a nervous person, and I tell them no I have an autoimmune disorder and they just look at me strange, but rarely ask what I mean.) Those who are close to me have learned a great deal because I get rashes from the sun on my arms and neck, but I try to stay out of the sun during the hottest part of the day and I rest during the day for a few hours(my siesta), and I take showers sometimes three times a day to keep myself cooler. 

I have found that even the pharmacists here tend to not quite understand the disorder and usually become interested when I ask for antimalarial medication and corticosteroids at the same time.  The pharmacist up the street has became an expert in knowing and learning the combinations that may help me depending on my symptoms because going to a specialist isn´t always an option here even though I live in a large city.  A nurse comes to give me a shot that understands my illness and checks on me every few days now that I am going through a flare again. 

Fighting Lupus is very difficult and even in the US people often do not understand what the illness is so imagine here where people sometimes still think that illnesses are supernaturally inspired.  I have had people in the US argue that Lupus is a pretend illness(they confuse it for things like Chronic Fatigue Syndrome or Fibromyalgia which both are real illnesses, but sometimes people do not believe it) when you tell them that Lupus can kill you they look at you like you have lost your mind.  Of course more people know now that it is a serious illness compared to ten years ago.  Then some others think that it is a disease that is always fatal, but are often surprised when you tell them that it is an illness where you can live a normal life span if you take care of yourself, but that some people die because of complications from the disorder. 

One positive thing that has came from my facing Lupus was my neighbor´s daughter being alive because of me.  Her Lupus attacked her kidneys.  She also got the rash and had the pains that I suffer and the terrible fatigue that overcomes you.  Her mom came to my house in tears and said...´I don´t know what is wrong with my daughter, help´and I went to talk to her, she told me her symptoms and what she was feeling..and I looked at her mom and told her she needed to go to the hospital. Her daughter was having a flare that involved her kidneys so they started aggressive treatment and diagnosed her daughter with Lupus.  She came home and cried and broke my heart as well to know this young lady of 24 was facing what I face every day of my life.  She said if it weren´t for me they would have just blown it off as not serious or heat rash and anemia.  I told her not to worry that the doctors would care for her and that together we would face the future.  My neighbor lost her hair and I feel for her, but it is coming back slowly and I commented that maybe it would be even more beautiful than before(she had gorgeous hair). 

I have to wonder how many illnesses or disorders in Honduras go undetected because of the lack of information on disorders.  Lupus is very common in Latinos, Native Americans, blacks, and Mediterreanean ethnicities.  It is my hope that information will lead to knowledge.


Live Simply Love Strongly said...

Thank you for sharing your experience with this illness. The more people speak out about illnesses like this, the more awareness is raised. My mother has suffered for years with fibromyalgia, and til this day has not been able to find a treatment that can help her, even here in the States. I have another friend from high school that is struggling to find treatment for Lyme disease. Raising awareness is key to more people being diagnosed, and more being helped with these illnesses. How great is it that your neighbor was able to get the right help in time because of your experience with this disease. I'm sure she will be forever greatful for your help.

beckyc said...

Thanks for posting! I had only heard of lupus but had no idea of the symptoms. There's a young girl at the orphanage we visit who always has a terrible looking skin rash, and I've heard the other kids say she's "allergic" to the sun. I wonder if it's lupus? They keep her in a hat and long sleeves and sunscreen.

Though I don't believe that God sends us these diseases or conditions directly, I do believe he gives us the opportunity and privilege through our own experiences to help others around us. Bless you!

LaGringaSPS said...

Becky it is very possible that she does have lupus. The disease usually manifests in women who are child bearing age, but sometimes is apparent in younger children...have you asked her if her bones hurt sometimes?