My Story

My mom was diagnosed with Sjogren's syndrome two years ago. The whole story starts a while before that, though. My mom was experiencing chronic fatigue and loss of energy, her mouth was dry and had gum sores, she had trouble swallowing her food and digesting it, and a bunch of other problems. She went to her doctor with her symptoms and he did not have a clue what was wrong. We looked everything up on the internet (which was a very bad idea... it only made things worse! Doctors need to see you in PERSON to determine what is going on with your body). She was sent to specialists all over New York City. It was so scary and nerve-racking. After visiting dozens of professionals, it was finally diagnosed that she had Lupus. Soon later, it was diagnosed that she had Deep Vein Thrombosis as well. Then Fibromyalgia. Then Arthritis. What next, the flu? Impossible-she did not have all of these things. My confidence in these doctors was shaken, as was their confidence in the diagnoses. It was frightening. I was scared.
From a primary point of view, the struggle of determining what was going on inside my mother's body was both stressful and difficult. If we didn't know what she had, how were we about to treat it?
One of the many hematologists she visited suggested that she had Sjogren's syndrome, a very common yet underestimated disease that primarily effects women. Not many people know of this disease (so it has become a goal of mine to teach about it). This scared me even more, because if it was so rare, then how could it possibly be fixed? I was wrong, though. It wasn't rare, it was everywhere... doctors just don't know much about it because it is so very newly discovered.

Anyway, remembering this slight notion from the hematologist, my mother, after years of not knowing what she had, my mom went for bunch of tests and found out that she did in fact have a dormant-type of Sjogren's syndrome--a kind that showed itself rarely and subtly. This made no sense to me then, and it makes no sense to me now. All I know is, if doctors now know what is wrong with her, then maybe they can fix it.

Since then, my mom has been on Plaquenil and a dozen of other medications. No one is sure how to treat this disease. Its causes have not even been determined yet. She has even experimented and taken small doses of the pill-form of chemotherapy (THAT was hard to see...). Her symptoms are getting better, but she is developing other symptoms of other illnesses.

If it wasn't for the diagnosis of Sjogren's syndrome, we would still be baffled and nervous at her condition. Thankfully, she is getting better, and now my family and I just need to deal with her other ailments.

I take care of her, pray, and thank God.