Back toUpdated on October 16, 2024
Not knowing what the condition was, Trachele was terrified when she got her lupus diagnosis. In this video, she shares her journey of understanding the disorder, understanding how it affects her body, and understanding how to take care of herself.
Transcript
When I got the diagnosis, it was like, OK. Finally, there's a name to what's going on with me.
I don't understand it, but at least I can try to figure it out from this point. I was diagnosed with lupus on January 24, 2014.
When I was diagnosed with lupus, I was afraid. In fact, I was terrified, because I
didn't know what lupus was. And nobody in my family had lupus, at least no one that I'm aware of.
One day, I would have a horrible flare. And I would be unable to do anything. It would be complete debilitating pain.
And then the next day, I would be fine. Or the flare might last for two days or two weeks or two hours.
And because the nature of the condition is so volatile and it changes so much, it's hard for people
to really conceptualize it and to understand what the condition is and what you're going through.
Before, I used to get frustrated, because I would push myself so hard. I used to power lift.
I used to do a lot of physical activity. I used to run. And I basically had to start from the beginning. I had to relearn how to walk.
I had to regain strength in my muscles. And it took me about four years to get to the point
where I could even run a mile again. I actually have been extremely fortunate the last few years.
I have very minimal pain and swelling, and I can lead a relatively normal life. My body is different now, and it needs
to be handled with a little bit more care. I wake up in the morning. I have a whole morning routine. I examine myself.
I try to take stock of how I feel and notice if there are any changes in-- in any aspect of my body.
And I write it down. And I keep a little journal because honestly, at times, you just forget. Sometimes, you cannot possibly remember everything
that's going on or every little change. So it helps to write it down. The best advice I can give anyone who either thinks
they have lupus or is recently diagnosed is go and find out for sure. Sometimes, lupus can take a long time to diagnose.
And you will be suffering in silence for an extremely long time unnecessarily. If you go and get the labs and the workup
and just start the process of trying to narrow down what might be wrong with you, you can save your life.
