I wanted to explain to my family and friends what lupus is. Of course, I will let you know how the doctors explained it to me and I will also give you the dummies version ( my version ). There are people out here who claim to know how this illness works, when in reality they really don’t. There are even people out here who claim to be supportive of us, who really aren’t. If you haven’t read any of my blogs yet, I ask you to at least read this one.
Lupus, is a chronic autoimmune disorder. The immune system is designed to attack foreign substances in our body. If you have lupus, your immune system attacks healthy cells and tissue. Having lupus can damage several parts of our body, such as; joints, skin, kidneys, heart, lungs, blood vessels, and brain. There are also many symptoms of lupus which are; painful swelling joints, muscle pain, fever,rashes, chest pain, hair loss, purple fingers or toes, swelling in legs, mouth ulcers,swollen glands, fatigue, headaches, dizzy spells, confusion, and seizures. When having these symptoms they are called flares. This was the doctors version of lupus to me, but living with lupus for nine years now, I have my lupus for dummies version.
Lupus is a very painful disease that has no cure. Living with lupus takes a lot out of you physically and emotionally. At any given moment you can be dealing with no pain to extreme pain. The heat is as bad for us as the cold is. If you have lupus you know what the term ” fog” means. To those who don’t know, it’s means confusion. Fog is very scary at times, we forget what we are doing, where we are going, where we are at, even if we been at that location several times before. These fog moments can last a few seconds to many minutes. We also have flares, which can be mild to severe. Flares are pain spells which can attach any part of our body, at any time and can last for hours to days. I can compare a flare for those who don’t know, its like having the flu really bad where your body is sore to the touch. Your chest hurts as if you were up coughing all night. Sometimes your bones hurt as if you sprained or fractured one of them. You get headaches which turn into migraines from the glare of the light outside, lighting at stores, homes or at work. Foods we were once able to eat now we can not. Activities that were once easy are now very difficult to do. Our calendars, which once was filled with family activities is now filled with doctor appointments. Lupus is a chronic ( long time) autoimmune disease that has no cure.
Having a chronic illness can put many strains on relationships with family and friends. We may all, who live with lupus have experience losing friends and family over this. We may have had someone close to us say something hurtful to us because of our lupus. I know I have loss several people in my life because of lupus. Someone told me not to die because they been to several funerals already. Really? I was also asked if I was ” using that card ” meaning using the lupus disease for help. I know that hurt me so much that day as it does today when I think about it. If I can’t mention needing help every now and then, or not being able to do something because of my lupus with people who claim to love me, then I guess I am suppose to walk around like superwoman with no pain. I understand its a tricky situation for me, I want to be treated as though I can do anything and everything, but I want the people around me to see when I need the help and take charge.
If you know someone with Lupus try to be compassionate and understanding. Do not take it personal if plans are made and broken at the last minute. Educate yourself with any information that’s available on line or ask me and I can have the Lupus Foundation send you some. But, if you want to know what lupus is really like to live with, ask someone who deals with it everyday. Lupus for dummies, is for anyone who wants to understand lupus.