My Diagnosis Was an Unexpected Surprise
Last updated: May 2022
Last year, I decided to make an appointment with the neurologist due to having more than usual nerve pain, especially in my feet and both hands and arms. But the main nerve pain was the one that shot all through my body like an electric shock that would stop me in my tracks.
Feeling unexpected relief
Well, I went to my first appointment and got a blood test done and other tests scheduled. Well, I got a phone call from the nurse saying that my blood work came back abnormal, showing positive for connective tissue disorders such as RA or SLE, etc., and I was referred to a rheumatologist. I was blessed to be working for one and got in the next morning on July 21. That's when I officially got the unexpected surprise confirmation that I am positive for SLE and Sjogren's syndrome. But the crazy thing was I was relieved because I finally had the answer to why I was fatigued all the time, pain off and on all, etc. I was very and still am optimistic about knowing that I am not crazy and that something was going on with my body, mind, emotional, and physical.
If they only knew...
Since knowing my life has drastically changed in so many ways that I wish, at times, I was better off not knowing I had SLE because nobody around me understands how much negative impact this chronic disease has on me. I feel like at times, they don't care at all and that I am overreacting, but if they only knew each day, it would be a struggle to make it through the day.
Fearing the unpredictable
I am scared that one day I won't be able to work at all and do most of the things I enjoy doing now. Right now, my lupus is manageable, but how long before it rears its unpredictable ugly head. I no longer can enjoy being outside for long periods because the sun and heat are no longer my friends – or just being outside rather cold or hot weather. (Editorial note: See uploaded image below) I can honestly say I am relieved to know what's going on with me but pissed that I will have to live with the thought that I have SLE for the rest of my life.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?