04 May This is my Lupus Story
I’ve had SLE since 1968. I was 20 years old and in my last year of nursing school at Henry Ford Hospital. I was a cheerleader, singer and sun worshiper in the Michigan summers. I was going to be an RN and travel or join the Service.
During training, I thought Lupus and RA would be awful illnesses to have to live with. It started with migrating joint pain and fatigue. When I went to see our Student physician, he insinuated that I was using this as a way to get out of class. Then I awakened one day and could bearly dress myself so I went back to see the doctor and told him I wanted a second opinion and only then was I sent to a Rheumatologist.
Symptoms progressed to the point that I couldn’t stand the weight of a sheet on my body and I would feel like I was freezing and then later drenched in perspiration with high fevers. Hospitalized, my hemoglobin dropped and I needed a transfusion. I had encephalitis and kidney involvement and the lupus rash. I do not remember the first month of my hospitalization while the doctors tried to discover what was happening. Mega doses of Prednisone saved me then.
My second month of hospitalization was spent with testing and getting my strength back, while I watched my hair fall out as I combed my hair. As prednisone doses were being decreased gradually I experienced mood swings from crying to laughter, and just before my doctor was finally able to tell me my diagnosis, I had realized that the textbook symptoms of SLE gave me a life expectancy of three and a half years. My life plans changed dramatically overnight.
I had nine years of active lupus symptoms, mostly joint pain, fatigue, and pleuritic pain, but I did get married, finished nursing school, had a baby boy ( my miracle baby) and adopted a little girl.
Then one day the pain disappeared and I had nine normal years in remission while my children grew up. I worked part time in doctor offices and then suddenly I had symptoms that were diagnosed as Thrombocytopenia purpura due to the SLE. I remember sobbing and thinking that I couldn’t go through what I had experienced before, once again. Luckily that didn’t happen, except I was back on steroids.
With the help of medication and always the support of my family I am a Lupus survivor.
Unfortunately, Blood transfusions were not screened for Hep C the years that I had my two transfusions, so in 1998 I was diagnosed with Chronic Hep C and Cirrhosis. At the time there was no treatment for Hep C for me because of the SLE. In 2015 the new drug for Hep C, Sovaldi, was the one that I would be able to take safely. I was cured of the Hep C within 6 months! I continue to be checked every 6 months for Liver Cancer.
In the early years of my SLE, the diagnosis of the disease was difficult to come by for patients like myself. For me, the elusive SLE test was positive while I was hospitalized, shortening the diagnosis time.
I was active in the first grass roots Michigan Lupus Foundation, and was in charge of the Lupus News Letter, as temporary President for a while and as a presenter to other organizations. The Michigan Lupus Foundation was a big part of my life years ago and I am thankful for the people who started it all those many years ago for all of us and I am glad I was able to help.
I turned 70 years old a week ago and now only have old age types of pains, but am always watchful. I am retired and am a volunteer with the St. Vincent de Paul Society. I have outlived my life expectancy and plan on many more years ahead, God willing.