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Health & Fitness

Please Help Spread Lupus Awareness

Today, I want to talk about our daughter, Shelley Marie Snyder-Krush

Her birthday is October 25, and she would have been 48 this year, but Lupus (Systemic Lupus Erythematosus or SLE) changed that. In fact, Lupus stole so much from her: her physical health, her physical beauty, her ability to continue working in the health field, her ability to drive a car, her ability to go to the gym for her work-outs, her ability to play women’s softball, her ability to go shopping with her friends, or even having lunch out, her ability in tending to her rose garden, her ability to fly to Europe and other countries she so enjoyed, her ability to walk, her ability to breathe without oxygen 24 hours a day, 7 days a week for several years, and so much more... until while in ICU on a breathing machine and other life-supporting equipment for a tortuous two weeks –  Lupus stole her life... one sunny afternoon in Las Vegas, Nevada. The day was June 25, 2010.

However, Lupus never could steal her inner peace, cheerfulness and happiness, her loving marriage, her loving family and friends, her ability to use the computer in updating her websites and keeping in touch with e-mails.  Lupus could not rob her from always choosing the most perfect gift for every occasion; she just learned to do shopping on-line. Lupus could not steal her ability to read, even though she now had failing vision and had to use large-print reading materials and thick glasses. Lupus could not forbid her getting out of her wheel chair and climbing the stairs in the Eiffel Tower in Paris. Nor could it stop her from swimming with the dolphins at Sea World while wearing her oxygen tank. Lupus never was successful in obliterating her of her sweet personality and her ability not to complain, even though she suffered pain of one kind or another, every day for 15 years (we did not know the extent of her pain until we found her daily journals), numerous surgeries, and chemotherapy over and over again. Nor was Lupus able to take away her strong faith in God and thinking of others first.

We never got to say good-bye to Shelley. Doctors put her in a medically induced coma, the second day of being admitted to the ICU/hospital. We stood by her bed for two weeks, helplessly watching her struggling to breathe... until the breathing machine no longer was able to help her.  The doctors told us it was time to take her off life-support and we endured 30-minutes until she finally slipped away. Her eyes fluttered open briefly during the 30-minutes and the nurse quickly administered the maximum amount of morphine... then Shelley was gone. No longer would she suffer. Lupus had finally won in killing our beautiful and sweet daughter. She was only 44 years old and suffered for 15 years, but she bravely battled Lupus as a warrior, never giving up, and never accepting pity.

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The last words she softly spoke to me as I held her hand... “Mom, I am so afraid.” Those haunting words were spoken the day before the doctors induced the coma. She did not want to leave, she so wanted to live. Foolishly, during those two weeks, we had some faint hope that she would again triumph in the face of death and not leave us. After all, we reasoned with each other, she had been given last rites before in other hospitals and she fought her way back to life. But this time, it was not to be. God did not answer our constant prayers and we could never grasp understanding why. Yet, we knew He had given us 44 years with this special girl.  Although, we should not complain as we also knew so many parents have so much less time with their children... But selfishly, we wanted more time.  

However, we were forced to accept the reality of death. The pain of grief personally to me was so unbearable; I secretly prayed to God to take me too, it was too great to continue on without this child. I cried out that I so hated Lupus and why was there no cure, when man could travel in space and there are other advanced technologies? Some people have great wealth; can’t one of them give to find a cure for Lupus? Why doesn’t the world stop this minute – how can others continue on with their daily lives, when my child has died? It was so hard to be civilized with others...  when I just wanted to scream “unfair” then break down wailing and weeping in my grief. No one can truly understand this pain, unless they have lost a child. Finally beaten down, I acknowledged to myself that my daughter had been devoured by what people call the “Wolf Disease” - for Lupus had in fact, ferociously ravished and cruelly murdered our daughter! I too died that day, but only in my heartbreak.

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I have tried to write the emotion from my heart to give you a glimpse of what Lupus took from us. It is with all this that I am asking each of you to spread Lupus Awareness and if possible donate to the Lupus Foundation. https://secure.lupusny.org/donate

 Lupus Means “Wolf” in Latin: Lupus can be compared to a vicious wolf at times, attacking every cell in the body.  In another sense, it can also act like a wolf in sheep’s clothing because it often hides, then will attack suddenly.  These sudden and intense attacks are called flare-ups.  It has also been known to mimic some other autoimmune diseases. Lupus is also compared to a wolf because of the red rash that can appear across the nose and cheeks. This rash resembles a wolf bite. It is called the “Malar” or “Butterfly” rash.

If you can do nothing else, then please share this letter with others. My mission is to spread awareness. There are different types of Lupus and not everyone dies – but it is a serious disease and we must find a cure. We pray Lupus never touches your life as it has ours.

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