One Patient's Positive Perspectives

Coping with Lupus: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working. All week long as I have been preparing and planning for a Mother’s Day gathering at my home, I have battled extreme fatigue.  As the week progressed, I realized that this was my first sign of a lupus flare, and have been challenged to accomplish the things I needed to do to prepare for hosting today’s festivities.  Today, I started a 20 day taper of prednisone to treat the flare of my symptoms.

My mom, a long, long time ago…

As my husband and I stood yesterday looking at Mother’s Day cards for his mother, I was suddenly overcome by some unexpected tears while holding a card that would have been just perfect for my mother.  My heart flooded with emotion and love for her, with the feeling of great loss that still sneaks up on me, even fourteen years after her death.  Today, and in all our focus this month on lupus awareness, we cannot skip over Mother’s Day without acknowledging lupus patients who are mothers.

The cards all had butterflies…

Later on, as I was dusting the pictures in my house in preparation for today’s family gathering, and I was caught again by tears.  I was dusting the framed print of a poem I had written for my mother 20 years ago, in May of 1992.  Next to it is my cross stitch picture of a grandmother and granddaughter sitting together working on a quilt, with baskets of yarn and kittens at their feet.  I gave the framed embroidery and poem to my mother for Mother’s Day 20 years ago, and after her passing, my father gave them back to me.

The poem and picture tell a little about my grandmother, who had rheumatoid arthritis, diabetes and blindness.  I must have inherited a little of my auto-immune profile from her!  My mother helped me know the real heart of my grandmother, even though my time with grandma was extremely short.  Here is my poem, written in the spring of 1992 as I worked on the cross stitch picture for her gift.

Patchwork Portrait

My mother’s a patchwork stitched over the years,
Connecting my grandma to me.
A tangent of love joining both of our lives
Who for distance and years could not see.

Mom quilted her likeness one piece at a time,
Sewn so gently and lovingly in.
Her portrait is formed in the depths of my mind,
Precious handwork, her image within.

This daughter remembers a few cherished thoughts
Of the one who was grandma to me,
Warm deep blue eyes, softer tender heart,
Tales of hobos to dinner and tea.

I try to pass on this fine quilter’s art,
To my girl as mom did to me,
Sewing choice swatches of grandma to child,
So a wee bit of grandma she’ll be.

She knows certain things that her grandmother loves,
Learned through stories I’ve pointedly told.
She cherishes knowing her grandmother’s ways,
How like grandma she is to behold!

I’m hoping that someday in God’s grand design,
A mother and grandma she’ll be,
And want to pass on some old quilter’s designs
To the little ones perched on her knee.

By Lupus Adventurer
Copyright May 1992

Patchwork Portrait


Comments on: "Coping with Lupus: Fact #13 – Lupus causes fatique, even on Mother’s Day!" (1)

  1. Kristine Victor said:

    Beautiful sentiment…..thank you for sharing!

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