Lupus Story: It Helps To Think Ahead

It Helps To Think Ahead’s Lupus Story

Like all Lupus Warriors, I am always concerned that I’ll develop a flare when I must undergo a necessary medical procedure that involves an injection of a new medication or sedation. However, I have learned that if I prepare myself, advocate for myself, and educate my family/care support team. I can prevent a flare while I can’t shorten my recovery time.

I CAN avoid a flare!

I prepare myself by getting enough sleep, eating well, and exercising. I make sure that ALL my doctors understand how Lupus manifests in me, the meds that work best for me, and all my allergies. I also have Sjogren Disease, which requires eye attention to my eyes and mouth, ensuring they are lubricated. I eat a Vegan diet. If my medical issue requires hospitalization, I make prior arrangements with the dietician to ensure they honor my wishes. I ask why when a new medication or a change in a planned protocol.

My husband has been my support since my diagnosis. Sadly, he had brain surgery recently and is still provides fantastic emotional support, but alas, he is now unable to help me with anything more than that. My immediate family lives 250 miles away and participates via facetime during crises but not in day-to-day care issues. We are fortunate to be able to afford caregivers for short periods when immediate support is necessary. I do all of our grocery shopping online now- pricey but beneficial.

All this preplanning is excellent, but we all know that our “lovely” disease is full of surprises. So I have created what I call my “Medical One-Sheet” that lists my diagnoses, allergies, all my meds, vaccinations and when I take them, hospitalizations, serious injuries, Doctors with contact info, and my emergency contacts. Who remembers that stuff when you feel lousy? It has saved me a lot of time and confusion in the emergency room a few times.