Infusion, Tears, and Other Things

i got my infusion today. i wrote a blog during my infusion but lost it somehow.. i was talking about how i have today completed two years of Benlysta, and this month completes 10 years of life threatening lupus. right now.. my toes are red with reynaud’s syndrome. someone has to help me up and down and i am staggering around like a drunk. there is pain i could never begin to explain in my legs and head and hips and hands. A couple hours ago, i got a text from my friend, Debbie. She is in the diagnosing stage of autoimmune disorders… I am pretty sure she has lupus… real often its very difficult for doctor’s to diagnose. Well, Debbie texted me and she is having a night that I have lived many times over. Her entire body is screaming in tension and pain.. she couldn’t sleep, alcohol wouldn’t drown the pain.. nothing would knock her out. I made Bob pick me up and put me in my car. I drove the two blocks to her house and Debbie’s husband Rich met me and got me out of my car, looking like a frazzled new daddy in a hospital waiting room. Debbie was on her porch, which is much like my shed. She was nearly pulling the arms off the chair in her pain… her beautiful face was streaked and puffy from a day’s worth of tears and her hands clasped in a death grip of trying to take what her body was doing to her. She was incomprehensible to me, babbling through her tears, but I sensed what she was saying… I been there before. Rich didn’t look much better, his face an open book of fear and concern. He is a fixer type person, like me.. i could feel the fury in his hands and his stare at not being able to help her. He isn’t mad at Debbie, but she probably feels like he is. No, he is mad at her disease. I had him take her to bed and I just crawled in bed with her and held her, and whispered prayers in her ear… rubbed her legs, rubbed her back, rubbed her head, I sang to her, and told her secrets. i let her rant while i rubbed the tension from her body. I could feel Rich checking on us through the doorway of the darkened room but I didn’t acknowledge him for fear of breaking the spell I attempted to cast on my friend. I made her laugh softly, I told her funny things and listened to her, told her not to think of doctors and things that upset her… think past the pain. Eventually I felt her body release some of it’s tightness at the same time my body was screaming at my awkward position beside her…. It felt like her pain slowly eased into me as she calmed down. She seemed to be relaxed at last. For a long moment she lay staring in my eyes. I could smell the saltiness of her skin and the pretty scent of her shampoo. She sort of rubbed my back the way I was rubbing hers. We both know that one day, one of us will lose the fight before the other one does. I thought of this at that moment. I think she was almost asleep when I left and i pray she rests tonight. The tears streaking Rich’s face made my heart constrict. I told him this is normal… I have these days, too. I just hide them. Perhaps its a mistake in me doing so… I probably should publicize the helplessness, the ceaseless pain sometimes.. That way people like Rich and Debbie don’t get frightened and antsy and in the shape they are in tonight due to Lupus. I hate this disease, i truly do. Debbie kept saying through her tears “nobody understands.” And she’s right…  if you haven’t lived it, you can’t understand. Only someone else with the exact same thing knows what you mean when you say “my legs and feet won’t stop moving” or “my hair hurts my head”… I am, once again, thankful for my pain… because it helps me to understand and maybe offer a little comfort. I pray Debbie gets a true diagnosis and they start her on a path of pain relief soon, because watching your friend live through the same pain you do sucks. I wish I COULD just magically take her pain into my body… Just because I know I can take it and I would rather hurt more than see her tears which sear into my soul and burn like acid. I had rather hurt fifty time as much, even die, and know that nobody else has to live through what I do… especially someone I love.

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