Living with Lupus

For those that don't know what lupus is, Lupus is an auto-immune disease. To explain it the best I once heard a doctor say "It's like the body is allergic to itself." In a way that's true. We all have anti-bodies that fight infections and keep us healthy. Well in a person with lupus these anti-bodies get confused and begin to attack the bodies good tissue and organs. If lupus becomes sever this can cause organ damage and eventually death.

Doctor Paracelsus (1493-1591) was attributed as the first to come up with the name Lupus, which, means in Latin wolf. The reason that he had chosen this name to describe the disease, was because of it's ravenous appetite is seemed to have on internal organs. Later it was said that the butterfly rash to Paracelsus looked like the bite of a wolf.

Although medical research has come quite far with lupus, it's still remains a mystery to most as to what causes it and how to best treat it. There was a time when lupus patients wouldn't live past five or so years because of the organ damage, where as now the prognosis is much better and so long as the disease is able to go into remission the patient can expect to live a fairly normal life.

However, sometimes lupus has a tendency to pop in and out of remission and like a fire every time it flares up it leaves a little more damage in it's wake until sometimes the damage is irreversible. Here are some symptoms of lupus.

-Extrem Fatigue

-Joint and muscle Pain

-unexplained fever

-chills

-butterfly skin rash

-kidney problems

-hair loss

-chest pain

-swollen glands

-sun sensitivity

-mouth and nose sores

-memory problems.

-weakness.

There are many symptoms assosicated with lupus and often they are symptoms that mimic many other diseases which makes lupus very hard to diagnoses; it's often called the disease with a 1000 faces.

I was diagnosed with suspicion of lupus in summer 2003 and officially in 2004. Because there are no absolute tests to determine it, it can be a hard disease to figure out.

Along with my lupus diagnosis came fibromyalgia, Irritable Bowel Syndrome, and kidney problems. It's been a roller coaster ride during these last few years, living with a chronic illness isn't easy but it has to be done.

On a daily basis I have to deal with sore muscles and joints, fevers, and pain from my kidneys. I generally can get through a day feeling ok but usually at night things seem to flare up out of nowhere, and lets not even talk about the days when I feel sick just waking up in the morning and knowing that my whole day is shot because of a sever headache and pain.

Lupus medication isn't a joy either from predisone which, causes extrem weight gain and other things to anti-malaria drugs, that let me tell you the nausea is out of this world, which, for me isn't great considering that I get chronic nausea to begin with.

On the outside we lupies look fairly normal and sometimes when I have my make up and hair all in order I can look pretty darn good! However, it's my internal workings that seem to cry out on a daily basis in pain.

Many a times I don't say much when I'm in pain or feeling ill as it's so consent that if I were to broadcast it on a daily basis everyone would be so sick of hearing it, but it's those moments at night when no one else is around and I sit and cry because of the pain, that I think about it and sometimes have even said out loud "LUPUS REALLY SUCKS!"

I had to quit work in 2005 and at 22 years old that was devastating. I feel sometimes like a 75 year old women trapped in a young body with my young mind that longs to do things normal young people my age can do.

On most days I can go for a short walk, or go to the mall and get out and do fairly normal things, but on the days that I feel sick I might as well be 75 years old because there isn't much I can do. These days are also so unpredictable. One day I could feel completely fine and dandy and go shopping and for dinner and have fun and then the next day I won't be able to get out of bed.

I can't plan for anything to far in advance because I never truly know if I'm going to feel good enough to go and I defiantly wouldn't put money out on something because it's likely that the day will come and I'll be to sick to go.

I can't be out in the sun for long due to sensitivity of the sun. So there goes long walks on the beach or day trips and hiking or even picnicking for long periods of time. I have to take caution with sunblock, hats or umbrellas anything to protect myself from the sun. Sometimes I'll get lucky and that will be enough to keep me out of the sun's harm, sometimes it's not enough and I end up sick as a dog after as a result.

I have now come to a point where I have been able to control it somewhat well through medication, lowering stress and learning the meaning of rest. I personally feel that I'm still on to many medications but hopefully in time that will change too.

I like to think about my lupus as living with a wolf. Sometimes it's quiet and lies by my side sleeping and other times it's awake and rough, prowling around in the night keeping me awake and in pain. I like to collect small wolf stuffed animals and my mother even bought me a beautiful fleece throw with two wolves on it. Having the wolves around reminds me that yes I have lupus but I will keep fighting the disease and at the same time try to live in harmony with my wolf.

For more information on lupus check out these sites.

Www.lupus.org

http://www.lupusresearch.org/

www.butyoudontlooksick.com

www.thelupussite.com