Life After My Lupus Diagnosis
Last updated: April 2022
Getting diagnosed with lupus has changed my life forever. There is so much I wish I could do that I can't or won't (do as frequently) just because it could be detrimental to my health. I have learned to adjust my lifestyle and have stopped comparing my life to others. We are all different, and each has its own paths in life. Here are a few things that I have done differently after my diagnosis.
Lupus and alcohol
I got diagnosed when I was in my prime. I was only 27. But, as soon as I got my diagnosis, I quit drinking alcohol cold turkey. My doctors never told me I couldn't have a sip or two. But, it was just a personal choice for me. I already had lung and kidney issues and didn't want to complicate things. So, mocktails for life.
Wearing masks in public
I started wearing masks when I was in public and would double layer, especially whenever I traveled on the subway or the plane. Yes, I was masking way before it was even mandated, and yes, I got all the weird stares. But I didn't care. I never realized how fragile my immune system was until my diagnosis, and I did what I could to protect myself.
Sleep with lupus
I slept for at least 7 hours a day on weekdays and 10 hours a day on the weekends if I was lucky. Lupus fatigue is another level of tiredness. I don't know what it is, but there were days when I just needed more sleep, even with all that rest. So, I would also sneak in afternoon naps when I could.
Lupus sun protection
I started wearing sunscreen. I know this should have been added to my routine long ago. But, I was just stubborn and lazy. But, once I got my diagnosis and was told about the effects the sun could do, I started experimenting to see which sunscreen would suit me best.
I started taking an umbrella with me when I went outside. Rain or shine. As mentioned, the sun can affect lupus patients, and I didn't want to take that chance. So, I made sure I had an umbrella with me at all times.
Diet changes with lupus
I started drinking green smoothies. I tried to be more health-conscious and began throwing fruits and veggies in the blender, making my own crazy concoctions. A lot of trial and error and recipe books later, I found the best blend for me.
Lupus brain fog
I started writing things down. Brain fog is real. One minute I was searching for something, and the next, I didn't know what I was actually looking for. So, I started writing things down. I wrote down important dates like birthdays, anniversaries, doctor's appointments, etc. I also kept a log of passwords because I could not remember anything.
Blood tests became easier
I stopped being scared of giving blood. Before I was diagnosed, going to the doctors would freak me out because I am a hard stick, and they would have to try several times. But, after my diagnosis, with all the blood tests, scans, etc., I am a pro. 13 tubes of blood and urine, no problem.
I started becoming an advocate for myself. Whenever I went into my doctor's appointments, I made my opinion known, and if I needed any tests done, I made sure that I got it. I hear so many horror stories of how doctors don't listen to their patients, and I do not want to go down that route.
I started researching everything I could on lupus. No one in my family had lupus, so I learned everything that I could. Google had a plethora of information, and social media was a great way to learn about other people’s experiences.
What have you done differently since you got your lupus diagnosis?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?