Finding Community When You Don't "Look Sick"
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.
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.
What's next in my lupus journey?
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.
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?
Do you experience brain fog?