Tag Archive | Keratoconjunctivitis sicca

Support for this newbie!

My journey with autoimmunity began years ago with a diagnosis of Sjogren’s Syndrome. Reaching the diagnosis was no joy ride! So, at the ripe old (?) age of 19, I had to travel the road of a chronic illness.

Attending a support group was a no-brainer. For sure, experienced members would guide me, a newbie, through the maze of tests and give tips and ways to cope. Well, not exactly! At 19, I was the new kid on the block, with emphasis on the word, ‘kid!’ The majority of other members were my elders by about 60 years, at least. They no sooner seemed to understand my life and my desires to be young and single, than I understood their grandparenthood.

Needless to say, we managed our diseases differently, but I was struck by the degree of difference. We had the same dry eyes, but the degree was different so the treatment differed. I had a dry mouth from time to time, but I failed in my ability to see that a dry mouth could get so bad as to affect dental vitality. All I needed was an artificial tear that was WET.Yet, I sat through many hour listening to the virtues of preservative-free artificial tears; some even made them themselves! Why in the world would anyone want preservative-free artificial tears? Now that I’m reliant on them and not able to tolerate anything BUT preservative-free tears, I am speechless.

Try as I may, I wasn’t able to ‘wrap my head’ around the need for mouth moisturizers;  brushing and flossing twice a day was enough, right? WRONG. Having just lost 6 teeth and in the process of paying for expensive implants or permanent bridges, I now see that this complication was a buildup of 60 years of a dry mouth IN SPITE OF taking incredibly good care of my choppers. All I can say is make some remark about the nature of the ‘know-it-all’ kid in me! Then, as quickly as it arrived as Sjogren’s Syndrome, the disease morphed into Systemic Lupus Erythematosous. I feel badly for not understanding, not TRYING to understand how something chronic like Sjogren’s Syndrome could run livers then, but I sure see that lupus does, now. Now, I see the ‘light’ so easily  as Sjogren’s has morphed into SLE and that is running my life now!

Lupus and Oral Health (topdentists.com)

Sjögren’s syndrome victims and supporters get ready for their first World Day (koolnews.wordpress.c)

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If it looks like a duck, acts like a duck, quacks like a duck…

Many years ago, I had the mumps; 4 times in one year! An astute doc at the student health clinic (I was in college) scratched her head when I appeared 2 months later. Yes, mumps, AGAIN. She didn’t buy it:  “A person doesn’t get the mumps this often,” yet I had all the signs; fever and my chipmunk cheeks.

Then, I mentioned my dry eyes, very dry mouth and the bespectacled doc dug a bit deeper: Long story short, no mumps at all. One lip biopsy and a + Shermer’s test (where the tears in your eyes are measured-I FLUNKED) later-Sjogren’s Syndrome was diagnosed. We finally knew what it was and instead of treating mumps, the doctor’s treated the infectious parotitis of Sjogren’s Syndrome.

It (Sjogren’s Syndrome) was a minor inconvenience, despite the bouts of tremendous pain when I had parotitis. Quickly, I learned how to manage it and what antibiotic worked for the parotitis. Then, I was ‘yanked’ from that comfort zone when that diagnosis was switched to lupus with secondary Sjogren’s. The main effect of lupus was on my joints with osteonecrosis and pulmonary problems. Then gradually, pains in my muscles increased, so:

Then, gradually pain in my muscles caused me to see my rheumie today: He explained that lupus and many of the autoimmune diseases were different all the time and it was explained that things had changed: Sjogrens had  moved into “first place” with lupus now second. Recent labs done on several occasions indicated that I no longer had as many lupus antibodies; now Sjogren’s antibodies were in the ‘majority.’  He said that autoimmune diseases typically ‘morph’ to become another illness. What was 6 months ago lupus became today’s Sjogren’s Syndrome.

The symptoms are so much the same and I still don’t understand what causes the autoimmune diseases to ‘morph’ into another closely related-but different-disease. But the doctor DID say that at one time, I had the antibodies of lupus; now, I don’t. But I do have Sjogren’s Syndrome antibodies prevail.

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