It took three years, several doctors visits, a magnitude of testing, misdiagnosis, and multiple hospital stays before being diagnosed with lupus SLE. Although this illness is very complicated and difficult to live with, I was just relieved that I had a final diagnosis and I could start being treated correctly.
I was diagnosed with severe hypertension eight years ago but on Christmas 2012 after gaining 60lbs in 6 months, a bunch of my hair falling out, being extremely tired all of the time, unexplained bruising, rashes, sensitivity to light & having several spells of where I would just pass out, I also was diagnosed with lupus SLE, hyperthyroidism, & type 2 diabetes. I had an explanation, but didn’t make any major adjustments to my life because I truly did not understand the impact all of these illnesses, especially SLE, would have on my life.
Initially, I made no major adjustments. I continued to work and run around with my kids; not getting the proper rest, not keeping my appointments or listening to my body. Doctors wanted me to stop working but I did not listen because I had to provide for my family and being on disability wasn't going to maintain our lifestyle. Recently God made the decision for me and my position at work was eliminated, so I had no other choice but to rest and pay more attention to me. For the last 2 months, I have been receiving the right treatment and rest that my body needs. Considering I have the worst flare since my diagnosis, this time off has been exactly what I deserved; but I do know that if God hadn’t eliminated my job, I would have never quit.
Don't be afraid to ask for help.
Listen to your body, don't be stubborn like me and lie to yourself.
The fact that I can now focus on myself and my future in lupus advocacy. Not working has given me time and the opportunity to learn about this mysterious disease that the world is still uneducated about. I’m now trying to open the Las Vegas Lupus Association and organize events and support groups for lupus patients in my state.
Listen to your body, don't be stubborn like me and lie to yourself that you are feeling okay; rest when you need to, visit your doctors regularly, take your meds, and don't be afraid to ask for help. Remember if you do this, you are telling lupus that you "got this", it doesn't have you.
I am a biological mother of four, but my fiancé and I together have seven and living with SLE and other diseases has ultimately turned our lives upside down. It pains me to miss the kids’ educational or sporting events because I am in a flare or just simply too exhausted to move, and it bothers me to see my fiancé working as hard as he does; the comfort in having SLE is knowing that as a family we are fighting this together, that I AM NOT alone. The comfort is knowing that I can share my story and help others cope as well as educate the world.