My story….. Knowledge is a powerful tool which is acquired by road of life. Since an early age, I was very sensitive to sun exposure. I would burn very badly but just attributed to my fairness. Although, Cuban and it is presumed that I would have the olive skin tone, my completion is very fair. I remember one summer getting blisters in my back from a day at the beach and burning up from fever.
When in my late teens, I would feel tired, sluggish and have hair loss and then feel fine for awhile. One of the most difficult things for me was listing these complaints which shouldn’t be attributed to someone so young. My primary doctor at the time would send me for blood work but since they were just routine test all that ever came up was that I was anemic. A simply cold turned to bronchitis with a hospital stay of 2 weeks.
Then, my complaints got worse. I started running a fever and ended in the hospital for over 2 weeks. At that point, the blood work came back with significant negative readings with the White Cell counts which made it necessary to do extensive testing to rule out Leukemia. After 2 weeks of poking and probing, nothing was determined to be the cause. My doctor suggested I get routine blood work. When finally in my early 20s I asked him straight out, why I was always so tired etc.? He said to me, “you have a condition that your antibodies attack your system so that when you developed a condition we will treat it.” That was the wrong answer which I learned the hard way.
Then, I started getting very bad pains in my joints and having difficulty walking. My mother got so frighten and thought I had rheumatic fever that she pleaded with me to let her take me to a doctor, a rheumatologist, in New York City. The pain and walking was so bad at that point that I agreed. The doctor who was treating me declined to provide me with copies of my medical record so I quickly obtained copies of hospital reports. That’s when I read the notes referencing “SLE” but didn’t bother to look into it until my new doctor started me on a regiment of cortisone and other medications. It took 3 years of up and downs (flares) to get me at a stable point. By then, I had looked into educating myself on Lupus and joined a support group.
Now over 25-years later, several hospital visits with poking and probing and some scary possibilities, skin and kidney biopsies, exploratory surgery to save my hips, 2 hip replacements and a hip replacement revision, I embrace my bad days as much as my good days. I thank God for being one of the very lucky ones. I couldn’t have done it without my family, friends and my doctor, Dr. Szteinbok. Yes, my life partner, Lupus and I are on to a walk.
Life is great. I take the good with the bad. Thank you for letting me share my story.
Sonia