Finding Community When You Don't "Look Sick"
Last updated: April 2022
I had a CT scan of my lungs and had GGO (ground glass opacity). My PCP thought it was from asthma and referred me to a pulmonologist and told me to discontinued up meds that may cause dryness.
Getting my lupus diagnosis
I was also having lots of sinus problems which my Dr said were allergies. I had to stop Zyrtec and prescription nasal spray too. I saw the pulmonologist, did the breathing function test, and it was normal.
He had me do bloodwork and found RA & borderline lupus. He then referred me to a rheumatologist. He did a lot of bloodwork! At first, I tested negative for Sjogren's.
He prescribed me two different dry mouth meds, which did not work. I take all the Biotene products, xylimelts, etc.
Later he said CTD and probably Sjogren's. So he put me on Plaquenil. Been on it for over 6 months, and haven't noticed any difference. It's so frustrating!
He prescribed me naproxen and Flexeril for my back, which helps a little. I joined Sjogren's and lupus support groups on Facebook which has been extremely helpful.
I still have to get CT scans of my lungs every 6 months. My rheumatologist thinks it's autoimmune-related. I got 2 books on both Sjogren's syndrome and lupus. They are helpful too.
Support makes a difference
I don't "look sick" so my family thinks I'm exaggerating, which is hurtful. My BFF has been my rock, Googled everything and ordered supplements and vitamins for me and a humidifier too!
I hope to connect with others and hope to help too.
I appreciate you taking the time to listen to me! Big hugs to you all!
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
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