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?
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