I don’t mean for this topic to be depressing, truly I don’t…but sometimes I just get tired of being so upbeat, you know? For the first three years after my lupus diagnosis, nothing much happened… it was managed by medication and I was in blissful denial. I started a full time counseling practice with my daughter and I felt as normal as anyone else…excited and happy..but the last 6 months or so my flares (for the uninitiated this means active symptoms where you feel sick, weak, achy, exhausted, foggy, and worst of all cannot go to work) have been increasing in frequency. From a couple of times a year to every couple of months. From what I have read of other people’s experiences, this is usually the beginning of the long, sad road into disability.
However its not disability that’s on my mind so much as having to leave this world before I get to meet and enjoy my grandchildren. My paternal grandmother died of heart disease in her 40’s when I was four, so we really never got to know each other. But I was named for her. I remember my father frequently taking me to the cemetery and seeing my name on her gravestone. It didn’t frighten me, but did seem to be a connection of sorts. The same name, the same short life. Was her fate my fate? Then my father, my hero, died in his early 50’s of cancer, leaving behind two very young and much adored grandchildren. At every life passage they’ve gone thru, I have missed him and wept for all that he and they missed..
So its hard not to worry that their destiny is mine… that I have some sort of destiny gene that will call me early from this life. I have no fear of death and passing, because I believe in my God and the hereafter…but I do so fear having to miss the rest of my life, and being an active grandmother… (They have not even been conceived yet, but my daughter promises me they will be working on it immediately following their wedding in September )
I fear the loss of all I yearn for.
Please Lord, not yet.
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Tags: death, disability, lupus
