I was 38, happily married with 3 kids and working full time as a school bus driver. It was March of 2014 when the pain started first in my thighs, then in my arms. It was like someone was chipping away at my bones with an ice pick. I was under an extreme amount of stress trying to manage working and taking care of my father who was going through chemo 3 times a week. Sometime time around May/June 2014, I started noticing muscle weakness in my arms and legs. Climbing stairs had become difficult, washing my hair was tiring and I was easily fatigued. October 2014, I finally went to the Dr. and little did I know how much my life was about to change. I spent the next 2 years being bounced from Dr. to Dr. because no one could figure out what was wrong with me. I had CT scans, MRIs, nerve studies and biopsies. I was tested for Multiple Sclerosis, Polymyositis and Pompe Disease. I had been seeing a rheumatologist who is suppose to specialize in Sjogrens Syndrome. Yet, because I had not presented with the “normal” initial symptoms of dry eyes/ mouth, she did not suspect Sjogrens. My bloodwork was negative for the antibody that would’ve suggested Sjogrens. My neurologist, after doing his own research, had to contact her to request a lip biopsy. Statistics show 30% of patients are seronegative. I am seronegative. On December 11, 2016, a lip biopsy confirmed I have Sjogrens Syndrome.
If you look at me, visibly, I look fine. But for me and my family, my disease is far from invisible. Some days, I can’t get out of bed because Sjogrens causes horrible fatigue. I am in pain all the time so anything I do comes with a price later. My legs are always weak so I can’t walk far and I always drop things. It has been life-altering but I push through the bad days and pray a good one is near.