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Balancing Act: I'm Living With Lupus

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I'm 34-years-old, a wife and a mother of three great kids--and oh yeah, I have lupus. I am disabled. I said it. It's hard for me to wrap my mind around that concept, but my body has no problem reminding me. Lupus is an auto immune deficiency. It attacks my body, everywhere. Out of nowhere my limbs will just stop working and what's even scarier is that doctors have no idea why. I first starting developing symptoms in 2001. During a routine doctor's visit my physician noticed my red blood cell count was low and white blood cell count was high. I underwent testing and saw a specialist who monitored my blood levels for about five months, but they couldn't find anything wrong. I was sent home and continued living life. I worked. I was a wife. I was a parent. I was happy and seemingly healthy. That all changed when I became pregnant with my youngest son and I was diagnosed with lupus during my first trimester.   About a month and a half after his birth the pain began. Seemingly out of nowhere my legs and thighs would cripple me with excruciatingly agonizing aches. I never knew when it would hit me. I didn't know what triggered it. I couldn't stop it. The spasms began to spread to different parts of my body. One time I was holding a two-liter soda bottle near my son, who was 4 months old at the time, a spasm hit and I could not prevent myself from dropping the bottle. Luckily it missed my son but he was drenched in soda. On another occasion I woke up and could not move my limbs--I was terrified. I used my back muscles to roll over and ended up on the floor. My mother had to help me up, then wash and dress me. I was helpless. Doctors have been supportive but my pool of resources is limited because my husband and I are currently unemployed due to the recession. Going to the ER every time I have an episode quickly racked up bills we can't afford, so I had to learn to deal with a life of pain. I currently take Plaquenil and Prednisone. I've also learned to self-medicate when the stages progress, for example, I may add an extra dose of Tylenol or an electronic muscle relaxer in lieu of the ER. Am I still in pain? Yes. But I'm forced to use mind over matter...and a lot of prayers.   My relationship with my higher power has definitely helped brace me for this battle for my life. I feel I should be a regular woman, and I try to maintain normalcy, but I'm not. There are days when my 13-year-old daughter has to dress me or my husband has to help me stretch my limbs so I won't get too stiff and need to be hospitalized. In spite of it all, there are blessings. I'm more sensitive to others and understanding of limitations--which was hard for me as a native New Yorker. This has also brought my family together. When mommy is on, I give 100%, but when I'm not someone has to fill in the gaps. Everyone chips in--even my boys, 7 and 4, when they're not killing each other. My husband has shown me truly unconditional love and I am grateful for his patience and dedication. I guess my biggest lesson is learning that I am not a super Black woman--and it's ok. I'm not an ox. I feel pain. I get sad. I am weak. Luckily, because of my support system I can retire my cape with ease. Read more:
Filed Under: Balancing Act
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