Being a single parent, a full-time college student, and working to support my family has presented me with many challenges and struggles. I had to search hard to find a livable balance which enabled me to juggle all of these responsibilities, and be successful at each one of them. Because of my busy schedule, being tired had become a part of my life that I had learned to accept, but suddenly it had become totally overwhelming. I started feeling extremely exhausted around January and decided I had to go to the doctor. I ached constantly, and I had a fever and sore throat, which I could not get rid of. My family doctor was very understanding. He has treated my children and I since we moved to Illinois.
In the beginning, he felt that I was just under a lot of stress and suggested that I cut down on my busy schedule. At that time I had 18 credit hours at school, and I was also working a full-time job. I decided to take a leave of absence from work, and concentrate more on school and getting well. My condition did not improve. I was still extremely exhausted and achy, even though I was getting more rest than I had been accustomed to. I went back to the doctor in April, and he decided to test me for lupus. Up until that point, I had never heard of this disease. When my tests came back positive, for systemic lupus, I was in total denial. I didn't have time to be sick. I decided to go to another doctor and get a second opinion. I had plans to accept an internship in Washington DC for the summer and had no time for this inconvenience, but when the second doctor also diagnosed me with systemic lupus, I decided that I had to find out more about this disease.
Lupus is a chronic disease where the immune system, for unknown reasons, makes a mistake and reacts to the body's own tissues. It becomes hyperactive, and attacks normal tissues, which result in inflammation and brings about the symptoms, which are called flares. There are three types of lupus: Coetaneous or Discoid lupus, which affects the skin; Systemic lupus, which attacks multiple systems in the body including the skin, joints, lungs, blood, heart, kidneys, liver, brain, and nervous system; and Drug-induced lupus, which may develop after taking certain prescription medication. Symptoms usually disappear in drug-induced lupus within weeks to months after the drug is discontinued.
Lupus remains a medical mystery the exact cause is unknown. Doctors know what it does, but not why. They are not sure what triggers it, although they suspect infections, sunlight, stress, and maybe genetic make-up.
Overwhelmingly, lupus is a disease of women, especially Hispanic, Asian, African-American, and Native-American. It most often strikes between the ages of 20 and 40. Researchers estimate that more than 2 million people in the United States have lupus. Although there is no cure for lupus at this time, with early diagnosis 80-90 percent of people with lupus have a normal life span if they follow their doctors instructions and take their medications as prescribed. My doctors have been great. When I decided I wanted a second opinion, my family doctor suggested that I go to an internist. Because I live in such a small town, I decided to go to a doctor in Chicago. I felt that I would receive a totally unbiased opinion, and maybe the doctors in a larger city would have a better idea how to treat this disease. Lupus is a very complicated disease, not only to live with, but also to diagnose. It can not be detected by one test. The doctors must run a series of tests to determine if this is what a person is dealing with. Because many lupus symptoms mimic other illnesses, and are sometimes vague, or come and go, diagnosis is very difficult.
After reading everything I could about lupus, I became more comfortable with accepting the fact that I was going to have to live with this for the rest of my life. The hardest part of living with this disease is that it is so erratic and unpredictable. One day I can be feeling great, and the next day I can be totally exhausted and sick. It is very difficult to make plans when you can never be sure how you are going to feel. Lupus effects every person differently. There are no "how to’s" the doctor can give a patient to keep them from getting sick. Every person's illness is unique, especially with systemic lupus. There are so many areas of the body that it can effect, so a person never knows how to prevent the illness from flaring up. Basically, I have had to learn as I go.
The most important thing that I have learned from dealing with this disease is that I must get the proper rest and eat a healthy and nutritional diet. This has been the biggest change I have had to make, since being diagnosed. I was used to burning the candle at both ends, but now I have had to adjust my schedule, and function at a slower pace. I am no longer taking an overload in my classes at school. This semester I dropped from 16 credit hours to 10.
I have also learned that living at a high stress level is very unhealthy for people with lupus, that is why I am not going to put myself in any situation that is going to stress me out. During finals week at school, I try to take some time off of work so I can concentrate without stressing out. Although I cannot remove all the stress out of my life, I do try to foresee the unnecessary and avoidable issues. It has been a difficult change for me, since I dropped 2 classes I am now going to have to attend school for an extra semester.
My main goal is to be healthy and have a good quality of life. I am hoping that I can stay well, for a long enough period of time, so my lupus can go into remission. I am still planning on continuing my education and plan to live a long, prosperous life. I wan to watch my children grow up, and graduate from college. I have tenacity, and I am a fighter, so I know I will survive.
Anonymous
Kewanee, IL