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How My Sister's Death Forced Me to Focus on My Lupus

It was a Sunday afternoon. I got a call from my mother saying my sister passed out, please come home. I grabbed water and my purse and began the two-hour drive to the hospital. I arrived at the ER and as I was hugging my mother the physician on call summoned us to “the room.” The room is that place they take you to give bad news. And that’s just what we were getting.

We were told by the ER doctor and ICU attending that my sister was very sick and probably wouldn’t make it through the night. She had a massive clot in her lungs which was causing her heart to fail. They could give her meds but they had their own set of side effects. We agreed to treatment and they took her off to ICU. Her heart stopped again. They were able to get her back but she was growing weaker. I left the hospital around midnight and sure enough on my way back early the next morning I got the call. She had passed. I was in total shock. My big sister was gone.

I got to the hospital moments later, and her body was still warm. I said my goodbyes to her and realized my life would be forever different, in more ways than I ever realized.

We held my sister’s funeral and then began the tedious task of going through her things. We have found so many things, including health records, and we are finding she had so many issues but never followed up. And with her death being sudden, and her not seeing a doctor in over four years, it made me think about my own health, but it also made me angry. I became so angry because if she had just gotten some form of insurance, which was available to her, she could have been seen for so many things. And maybe all this could have been avoided. But then I went back to thinking about my own health. Am I doing all I can do to manage my health?

Sure, I take my meds as directed, and go to my appointments, but am I doing enough? Am I doing all I can do to control my lupus? Am I working with my healthcare team in the best capacity? I determined I was not. Driving four hours round trip back and forth between my home and my parent’s home several times a week showed me I was not managing things well. So I scheduled follow-up appointments to have real conversations with my providers about symptoms and emotions and they listened! We reevaluated my meds and came up with a better treatment plan. We also discussed other things that would help me manage my health such as getting better sleep, actually resting, staying hydrated, and listening to my body, meaning if I feel something is wrong make an appointment and come get seen versus letting things get out of hand.

It’s a shame that it took my sister’s death for me to realize that our health is precious. But I’m glad I could work with my doctors and make a plan that works for me and that will help me in the situation I’m in. The moral in all of this is don’t wait to get care. Don’t ignore signs and symptoms. Keep your appointments, message your doctors, and most of all, advocate for yourself. Because it all can change in an instant.