Welcome back and as always thank you for following and sharing my story. I can’t explain how this aspect of social media has changed my life, having friends old and new along with my wonderful family go with me on this journey of memories and life altering decisions; it has been enlightening as well as therapeutic.
The statistics for surviving lupus are much better now than when I was first diagnosed. According to the Lupus Foundation of America (2016), “It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span. However, it is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus.” However, in the early eighties and in particular with my case, not much was known about the disease so I was placed on a variety of different medications to combat what my doctor thought was the right diagnosis…that month. Some made me loopy, nauseous, forgetful, indifferent and just plain sicker.
But, it’s funny how the mind can remember with absolute clarity the moments that change our lives, no matter the years that pile on top of other memories the life altering ones remain. The night my mama had her stroke, I can remember the details, they are imprinted on mind as if it happened just today. It was a Thursday night; cold rain beat against the window panes of our old house like angry fists banging to be let inside. I was not feeling good at all, and neither was mama, but she was determined to finish sewing a dress for Mrs. Gertha Livingston, who needed it for church on Sunday. I can see her now, the deep blue material of the dress hanging off the side of her old Singer machine as she ran up the place where the zipper was to be added in later. She was determined to have it ready because church was just as important in our lives, but, fate was changing ours by the seconds that night.
“Oh my head hurts so bad, I mean really bad never felt like this Sherri!”
She echoes the same sentiment minutes later before crying out to me again, “Call Cleve!”
Her mouth twists and her face falls on one side as she screams at me to call our cousin. I never moved so fast.
Our Cousin Cleve lived a short distance up Sandridge Road from us, and was that family member who knew how to handle most every kind of situation. He was a kind hearted, good Christian man, and along with his wife, Cousin Lucille they were at the house quicker than the rescue squad they called. For some reason we always and to this day, even in memory of them both, call them Uncle Cleve and Aunt Lucille. We are so Southern and I love it! More family members came as they saw the flashing lights that circled our home.
Mama’s stroke was massive and left her paralyzed on her right side. She was forty-nine, and was still grieving the loss of our daddy, while dealing with my mysterious disease.
But she lived!
Several weeks later after a lengthy hospital stay and rehab, Mama was back home with me and my sister Michelle, adjusting to her life as a person with a disability. I cannot imagine the pain she felt. When she came back, she knew she still had children at home who were depending on her but wanting to also be her support system, so she must have had a serious conversation with God on how it was going to be around our house because we were on a new regime. It was a lot of adjusting to do, especially seeing your busy, vibrant Mama now in a walker, but we were managing.
That was until I lost my mind one Saturday morning, and in a state of panic, bought on by the different medications I was on, ran out of our house leaving behind some non-existent screaming shadows that were chasing me, and my poor Mama who could not follow. Michelle was at basketball practice, and so she had no one to help her.
I remember hearing her scream, “Somebody help me please, God help me!”
Somehow she made it out the house in her walker and as God does, He sent our Cousin Evelyn Green, who was coming home from work at that time right into our madness. She jumped out her car and ran into the woods, where I was hiding and bought me back into the house. I do remember that day too, and the subsequent ones that followed as my condition grew worse.
I can close my eyes and see myself up in the middle of the night staring at the lights from passing cars, determined they were monsters out to get me, hiding behind our curtains like a fugitive hell bent on not being caught. I can feel the painful pinpricks on my skin, peppering me like tiny needles searing my skin with white hotness. I can still feel my fingers and joints swelling like tight beach balls, nearly bursting, and then beginning to just lessen. I grew smaller as each painful day passed.
At my doctor’s appointments, I could hear him whispering to Mama that he did all he could and for her to take me home to possibly die. But, he did have a colleague, a Dr Walter Bonner from Charleston who was doing extraordinary work in the field of rheumatoid arthritis, whom he had called to see if he could assist. Thanks be to God that he made that call. It was a life changer for me.
Within two days I was diagnosed as having severe SLE Systemic Lupus Erythematosus. Within a month, with Dr. Bonner’s strict regime of steroids and immune boosters, I was up to 88lbs and thriving.
Dr. Bonner, although happy that his therapy was working, was still optimistic of my future, he cautioned that he had only halted the process of this new disease, and that we would be lucky if I lived to see nineteen.
Well, “It Is What It Is” and I am still here.
Stay tuned and be blessed family!