Debbie M.’s Story

My name is Debbie, and I was diagnosed with Lupus in 1990 after experiencing recurrent infections, malar rash, fatigue, and joint pain. I had mild disease activity until 2004–2005. I had chronic, low-level pancreatitis for a year, and then whammo, I had to be hospitalized when it became severe overnight. I was hospitalized with it again in 2017, and because it is a potentially life-threatening illness, they were watching me closely (both times). It seems to be an intermittent issue.

I have had a pulmonary embolism and another blood clot, so I am on blood thinner for life. I have been seeing a cardiologist for mild pulmonary hypertension, which can cause right-sided heart failure. He has been following me closely to make sure it doesn’t get worse. I also had Supraventricular Tachycardia when I was younger, and looking back, I think I could have had Lupus then.

I was in a head-on collision in 2007 and was hospitalized for a month with several injuries and several broken bones, including my back, ribs, kneecap, bones in my feet, and left femur. A femur rod was placed into my left hip, and it goes from my hip to my knee. I was still in severe pain a year later when I was diagnosed with Rheumatoid Arthritis, a disease related to Lupus. I believe the stress of the accident caused me to get RA, which for me, has been more inflammatory than Lupus had been (for the most part). I also have significant teeth and dry eye problems due to Sjogren’s, another related disease; and problems in my legs due to Raynaud’s, another related disease.

I also have “moderately severe” asthma, so taking immunosuppressant medication has been a real challenge for me. I have to try to stay away from sick people without living in a bubble, which is easier said than done.

I go by the mantra, “I have Lupus, but Lupus doesn’t have me.” I try to live my life as fully as I can, and I thank God each day for all of my blessings.