LUKE LIPTAK: CAREGIVER’S PERSPECTIVE *The views expressed in the following stories belong to the content creators and are not the expressed opinions of the LFA, GOC, it’s affiliates, or employees.
My story about being a lupus caretaker is also the story about my realization of the reality in which I exist. Many years ago, I was employed at a local hardware store. One day as I walked into work my eyes gazed upon the most beautiful girl I had ever seen. She was standing at the customer service desk, her long blond hair gently blowing in the wind from a nearby fan. Although nervous and intimidated to talk, I approached her and we became friends. I didn’t know it back then, but my life was about to change forever. Like any other young couple in love, we were inseparable. She was all the same things I was; athletic, fun, a party animal. We would hike, camp, ride bikes, and spend time on adventures; our lives were going great! But as time went on our adventures became smaller and less active. She began complaining of soreness and muscle pain. Her joints began to bother her, and she was getting tired more often. She decided to see a doctor who identified signs of arthritis. Shortly after that she developed a blood clot, which led to her being diagnosed with lupus.
As much as this was a shock and surprise to her, it also was for me. Both her and I had never heard of lupus. We did not understand what it was or what caused it. I personally had no experience with any type of disease in my life at this point and thought it would just go away, like the common cold. But it didn’t go away. We were in the hospital every month and our lives were turned upside down. As our frustration became unbearable, one of the most important events in our lupus journey was the discovery of The Lupus Foundation of America. Their support group was eye opening in so many ways. Not only did I learn what lupus was, this is where I truly realized that I would have to be a caretaker.
At first, being a caretaker was something new and exciting. I embraced this new life we had together and moved forward with a stiff upper lip. As her caretaker I made sure she took her medicine, ate healthy meals, exercised, and had enough sleep. When the lupus would flare up, I took care of getting her to the hospital, and comforted her in times of pain. When she had a good day, we would take full advantage of her health and go on adventures again. But when the bad days came, we made sure to rest and recover. Thankfully her lupus went into a mild remission and was under control through medication. Eventually we got married and had two kids, but once again lupus reared its ugly head, becom-
"I am so grateful for my husband and caregiver. He takes the time to have “medical” conversations with me, encourages me to take care of myself so I can avoid flares, gives me my Benlysta injection each week, and takes over family responsibilities when I “just can’t.” He is not only my caregiver, but my greatest champion. I am at my best because of him." - Adrienne, lupus warrior LIVING WITH LUPUS MAGAZINE
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