Tag Archives: vunerability

Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

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