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Help Stop Lupus

Dear Editor,

Twenty-six years ago, ahhhh. This was an amazing time in my life! I WAS PREGNANT! After they told me I probably couldn’t have children. During my pregnancy (5 months), I developed this insanely itchy, weird rash. My physician at the time didn’t look up from writing in my chart (yes, this was BACK IN THE DAYS on pen and paper), and said, “Its pregnancy spots. It will go away once you have the baby.” Ok, what did I know about pregnancy? NOTHING!

Six months after my beautiful baby boy was born, the rash was STILL HERE. My new Doctor asked if I wanted to see a specialist for the rash. Sure, it itched like cRaZy! It was on my arms, chest and back also. After a LOT of blood work and a biopsy of one of the spots on my arm, the biopsy came back positive for Discoid Lupus. What the hell is this, I felt fine. The blood work was all negative or normal. Just the biopsy was positive. Ok. The Doctor told me that Discoid primarily only affects the skin. He also mentioned that there is roughly a 10% chance of it becoming systemic, which is was not at that time. Also, SUN BLOCK! UV rays are now my enemy! I love being outside! Wear long sleeves, big hats and 50 SPF sun block. They made 50 SPF??

I was given a drug called Hydroxychloroquine (Plaquenil). It can reduce the skin problems/rash associated with Lupus. Ok. It’s used to treat MALARIA?! WTH! I might also have some joint discomfort and that ibuprofen should help. Joint discomfort? I was born and raised on a farm, plus I grew up on horseback. I was already familiar with pain and joint discomfort. This was twenty-five years ago and basically the only accessible resource center at my fingertips was called the library. UGH! When do I have time to go to the library with a baby and working two jobs? Yeah, that’s not happening!

Through the years, I learned to wear sunscreen. If I didn’t, that nasty rash would start up again. My baby boy was growing up and pushing his boundaries. Try keeping the reins in check on a teenage boy while working two jobs! GOOD GRIEF! BOYS! Yes, he found trouble. Stress of two jobs, building a house, having surgery and very little sleep got the best of me. The “wolf” had reared its ugly head! Remember that 10% chance of becoming systemic? Yep! You guessed it! This was roughly twelve years ago when my Lupus had become systemic and has been a roller coaster ride from hell! Some medications would work and then not work, so switch to something else. That would affect my liver, no, can’t take that anymore. Something else would work, then after so many years, it would not be as effective. UGH! I’M SICK & TIRED OF BEING SICK & TIRED!!! I’ve tried holistic, natural herbs and vitamins. I felt great, but my labs (ANA) were “significantly positive”. It was 5 1/2 times higher than “normal”.

The team of Doctors I have are amazing! They have to be to put up with me. LOL! I thank God every day for my daily support network! A fabulous, caring, loving husband. My wild and silly son, who makes me laugh. Two beautiful step-daughters. Friends and numerous family members. My employer, Cleary Building Corp., who is a Madison walk sponsor and is totally supportive to the time I need to cope with this disease. You all are amazing to me! THANK YOU!

We must KNOW LUPUS to live with NO LUPUS!!

Help Us Solve The Cruel Mystery!

Pat Saunders