This page will contain my thoughts, my musings my ‘catch-alls’ throughout my years with Sjogren’s and lupus; they’ll be in no particular order.
When I was first diagnosed with Sjogren’s Syndrome, I was a teen. I had learned in a sociology class that people with chronic illnesses may find support and comfort and ideas about coping in support group meetings. So, off I went to the local Sjogren’s Syndrome support group. What I heard did nothing to enlighten me, rather it ‘turned me off!’
I heard a lot of adults giving recipes for how they made their own artificial tears, how they made their own saline for nasal irrigation that didn’t irritate the nasal passages too much because of it’s ph, but it did the trick: without causing infection. They’d boil water, it sounded as if their whole day was spent making and then cooling their concoctions/’witches brew.’ Well, that wasn’t ever going to be me; all I needed were dry eye drops and lemons to prevent the horribly infectious parotitis that can come with Sjogren’s. In another post I’ll explain parotitis. I even heard about other people dying of Sjogren’s Syndrome.
What die? i only had dry eyes and had parotitis, so I I didn’t understand the fuss. Now, 30+ years later, I understand and I understand only, too well. The oral dryness has led to more expensive dental problems and procedures with only one kind of fix; the expensive kind. And, recently, my choice of dental fixes didn’t go over with our pursestrings and people didn’t understand why I made the choices made the choice I did did. But the choice with which I was confronted was hard to make and meant biting a big financial bullet.
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