I Wasn't Crazy
Last updated: May 2023
Ever since I can remember I always knew something was off for me.
Always falling asleep
I would frequently get sick and go through strange episodes of different symptoms that would go unexplained. The biggest complaint was fatigue and my neck and back always bothered me. In my younger years, I was always the girl who would fall asleep anywhere I could curl up, basically.
Fast forward to when I turned 30 and removed my IUD to get pregnant. After a full year off of birth control, my fatigue really kicked into overdrive, brain fog started to set in with headaches and nausea daily. I started having panic attacks and major depression, and lots of joint pain. That summer, I started getting rashes on my neck and face that would not go away. I also miscarried early on, so my doctor did some labs. Some of the labs indicated inflammation, so she had me follow up more with my PCP where he did more extensive labs after I told him everything. I never would have thought that I had Lupus nor would I figure that out on my infertility journey.
Getting a diagnosis
I was officially diagnosed with APS first, which explained the miscarriage and issue of getting pregnant. After more evaluation, I was told I had Lupus as well. It was a relief to know I was not crazy my entire life, but also a complete shock to me. It has officially been a year since I was diagnosed and it has been a wild ride. I use to live so freely, and now I try really hard to make sure I take the best care of myself so I can feel good. Some days are hard, and some days I want to lay in bed because everything hurts, and I have no energy to give. When I do have a good day, I am like a superwoman trying to catch up on everything I neglected on my bad days. I have to ration my energy throughout the day.
I work full time and nap in my car on lunch so I can make it through the rest of the day. I have adapted to eating very clean, which has been very helpful, but if I decide to indulge with friends, I end up feeling it, so it always comes with a price. Mentally it has taken a big toll on me just because I can't be the person I used to be. I miss the old me, but I have also grown so much from this journey and enjoy helping others going through similar situations.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?