My lupus story starts in 1991. Our family doctor was suspicious of my mother having Lupus after a long and debilitating period. He had another patient, who recently was diagnosed having the same symptoms. My mother went to the large teaching university in our state. There, she was told most people lasted five years before succumbing to the disease and its problems. At that time, the doctors explained not much was known about the disease. It had been dubbed the “Black Woman’s” disease and because it was not affecting white men the politicians did not care if there was funding to study it. Sadly, that was not hard to believe as this was before they cared about breast cancer as well. My mother went through treatments of 6MP, immunosuppressants, and cancer drugs. This was incredibly hard on her and as an only teenage daughter to a single mother, I felt helpless. She was often so sick she could not move and I could not drive or move her on my own. It was common for me to call my aunts and grandparents to take her to the hospital. Living in a small town this was much quicker than an ambulance.
Over the years, I came to hate the disease that was destroying my always-active mother. She was put on disability, had memory problems, etc. I took care of the bills so it would not stress her out and did housework so it would not tax her heart. As the years went on, other diseases and problems arose because of it. The scariest was a bleed out in 2008. They could not find the cause and had to keep giving her blood. They never did find where all of the blood went, even after 26 transfusions over 2 months. She decided she was tired of all the doctors and the medicines. Her fight was gone and she did not want to go through all the illness the problems meds had caused. The fatigue the travel to the doctors brought on was just as bad. Twenty-six years after her diagnosis she has seemed to be feeling better than she did when she was diagnosed. She is on many medicines as the disease has attacked her systems. She has bad days and has had hospital stays and emergency room visits. She is coping now though and has accepted the disease and it’s limitations. As she came to terms with it, I did also. It has become the disease that you deal with rather than the one that was going to sneak in and take my mother suddenly.
In 1999, during my pregnancy with my first child I had my first borderline ANA. I had a red face that burned and hurt to touch. Swelling through my body could not be controlled with a low sodium diet and I was put on bed rest. The doctors would continue to monitor me as my mother, my great-aunt, and my father’s cousin all have Lupus.
In 2009, I was practically eating ibuprofen. I was taking four at a time and as soon as I able to take it again, I would because the pain would not let up. I finally decided it was worth going to my mother’s pain doctor. At that time, I was put down as chronic pain syndrome and scoliosis causing the back problems. My knees I was told were the worst the doctor had seen for a person my age. I changed to a different family doctor that was open to new methods for treating diseases. He sent me to my first rheumatologist because I was having problems of dry eyes and no saliva along with my pain. The rheumatologist again gave me my second borderline ANA. He was adamant however; I did not have Lupus or Sjogren’s. Instead, I was told I had Sicca Syndrome and osteoarthritis. I went to an ophthalmologist who disagreed with the rheumatologist. He would be the first of many doctors to tell me that Sicca was Sjogren’s. I went to another rheumatologist for a second opinion, once again, I was borderline, but she told me I had nothing. I continued to see my original rheumatologist since he was closer. My family doctor would do bloodwork and the rheumatologist would get mad telling me that he had told my doctor I did not have anything and I did not need the bloodwork. During the years, going to the rheumatologist, it was only my primary doctor that did any bloodwork. In 2016, my rheumatologist told me he had done nothing for me and if I wanted, he would write my primary doctor stating this. I decided it would then be best to stop seeing him.
Three months later, I was once again in bad pain and the steroids my primary doctor ordered finally calmed it. My doctor ordered the bloodwork, and this time I had a positive result for the lupus. After 17 years, I finally had a name to the demon that had stolen my energy and caused me pain relentlessly. I was glad to have a name to it, but felt empty as I realized all my mother went through could be my lot in life. I decided at first I would push myself and live; as I had felt like I did nothing but stay in bed weekend after weekend. This led to an active Lupus faze, an impaction in my intestines, and missing too much work at my job. It has been only months since my positive result. I have searched to see what supplements might help my memory and eliminate my brain fog; to see if any would help my inflammation, and what would keep me from getting sick. I have taken steroids for the flares I cannot handle.
I am currently taking Low Dose Antigen therapy. I am looking to see about going to the Lupus Clinic at Cleveland, but after having doctors telling me there is nothing wrong with me, I am hesitant to go. I do not want another doctor who does not believe me or tries to me there is nothing wrong and I am so hesitant to take any medications. See my mother take them and some of the effects has scared me away from them. The disease is difficult to explain to others who know nothing about it. It is brought on many decisions that need thought out. This is especially true for my career where I don’t know whether to fill out FMLA to help or if this will affect me later as I try a different position. My life is not spur of the moment as it was. I now have to think through how it will affect my health, it I can handle doing things physically, etc. I was always spontaneous and this has been a huge adjustment. Lupus is now in every aspect of my life, but rather than seeing it as the demon that is destroying my life I have chosen to see it as the imp that acts up at times.