Since My Mother Got Diagnosed with Lupus.

My mom was diagnosed with lupus about a year ago. When I saw this assignment come up, I knew that I had to share what I know about my experience as a daughter of someone with lupus. Lupus can take a wide variety of forms. It is an auto-immune disorder which means that one or more systems of the body stops working right and actually starts working against the rest of the system. The markers for lupus can be tested for using blood tests. Just because someone has the markers doesn't mean that they are experiencing symptoms. Often the symptoms are triggered by a significant injury.

For my mom the majority of the lupus problem is the connective tissues. Those pieces of your body that connect your muscles to your bones. Some days are harder for her than others. Some days she has to remind herself to take it easy. On these days she doesn't notice the lupus, but she must remember that the lupus can strike at any time. If she isn't careful but over-exerts herself, or exposes herself to harsh temperature changes, she can be bed-ridden for a couple days. This has been a hard transition for her. She is still quite young with a lot of life in her. When she gets discouraged because of the lupus, it can be disheartening. She is blessed to have good doctors. Her specialist is very caring and helpful. My mom has had her fair share of bad doctors but she has been lucky to find some good ones lately.

One of the problems in my family is that we have a high pain tolerance. Sometimes this can be useful. It is not useful for finding and detecting lupus. It took quite a while to detect my mom's lupus because she wasn't able to accurately convey the pain that her body was experiencing. My sister and I both have high pain tolerances and some minor symptoms. My sister just went in for lupus testing and I will do so as soon as I have health insurance. With what I've found out talking with people, lupus can be genetic with most cases being female. Lupus can also be caused by environmental factors. I am concerned that my sister or myself may have lupus as well.

My maternal grandmother had rheumatoid arthritis. Like lupus, rheumatoid arthritis is an auto-immune disease. At the time that my grandmother was diagnosed, even less was known about lupus. It's possible that my grandmother actually had lupus. This makes me even more concerned about the possibility of lupus in our family.

I also met a friend of a friend who had lupus. Unfortunately his lupus mostly affected his mind. He ended up with severe psychological problems because his own brain was working against itself. He was also extremely light sensitive and carried a device in his pocket to measure how much ultraviolet radiation he was experiencing so that he could monitor the radiation and hide from the sun when it was necessary. He could only take night classes and spent pretty much all of his time indoors if the sun was out. This friend and I discussed spoon theory, which is an essential resource for people who are trying to get a feel for what it is like to have a disability.

Basically, when you are healthy, according to spoon theory, you have an unlimited number of spoons. Spoons represent tasks. These tasks can seem simple to the healthy person but to someone with lupus or another condition limiting spoons, it can take forethought, planning, and significant energy. Something as simple as preparing a meal may take 1-2 spoons. This theory was constructed so that someone can understand why their friend with lupus is not able to go out to social gatherings, or be a part of other activities. Lupus puts restrictions on how much a person is able to do.

Very little is known about lupus. Hopefully with more communication about actual instances of lupus, correlations will be drawn and we will have a better understanding of this frustrating disease.

Resources:

Spoon Theory PDF