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This is MI Story

It was the summer of 1994, I was 22. I remember like it was yesterday. I was a very active person, but that June I would wake up with a low grade fever, and sleep during the day for hours at a time. It seemed I could never get enough sleep. My joints started aching, but I thought I was crazy because the pain would move to different body parts throughout the day. It’d start in my hand, then my knees, elbow, etc. Finally my mom took my to our family doctor. He said he thought it could be either rheumatoid arthritis or lupus. I figured it must be arthritis since that’s what my grandma had and I had never heard of lupus. My mom then told my her sister had lupus! I was sent to a rheumatoid doctor then a nephrologist since there seemed to be kidney issues. At the end of August that summer, while working at a pool as a supervisor, I had a grand mal seizure. My lifeguard found me on the floor seizing. I was rushed to the hospital and it was there that I found out I had stage IV kidney disease. While there they started me on chemo. Thankfully my kidney’s did a complete reversal and are now fine! I had also found out that I have 3 blood clotting factors due to lupus. Fast forward a few years I gave birth to my daughter. She arrived prematurely most likely because of lupus. Even though I wasn’t experiencing any symptoms. 9 months after her birth I had another grand mal seizure WHILE DRIVING! Thankfully no one was hurt. I again was put on seizure meds but after a few years I went off of them because I wanted more children. I’ve since had 2 miscarriages and have not been able to have another child. 3 years ago I had yet another seizure, but this time in my sleep. I actually fell off of my bed! None of the seizures could be explained so they just attribute it to lupus. That’s the frustrating thing… even though I was lucky to be diagnosed right away (for many patients it takes years), the unexplained events/feelings/pains is tough. I consider myself very lucky in that I don’t suffer daily from lupus. I’ll always have to be on blood thinners and seizure medications, but it could be so much worse. Last year I was diagnosed with breast cancer and was afraid that my lupus would flare up, but thankfully it has not. I am grateful to the Michigan Lupus Foundation who has been there from the start of my journey so many years ago.

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1Comment
  • monique kusky
    Posted at 17:27h, 28 April Reply

    you and i should share some stories for our are very similar

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