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Beckie
,
30
Kansas City
, United States
Diagnosed in
2000
I was diagnosed with Systemic Lupus Erythematosus in February of 2000. I have what are called Lupus anticoagulants. These are antibodies that work against phospholipids (a group of substances in cell membranes), which inhibit blood clotting in a test tube, but may be associated with a higher risk of clotting in people who have them in their blood. Just 1/3 of lupus patients have this, unfortunately, I am one of them.
Living with Lupus is a daily struggle. Most people think that those with Lupus may not look sick, but we are. It is a daily feeling of having the flu. Feeling like I have the flu is normal to me. Just making it through the day with only one ailment is a good day for me. It is hard to go through each day feeling what I feel and not wanting to tell anyone. Not wanting to tell anyone because I just want to avoid all the questions. I don't want people to think ...there is always something wrong with her. The truth is, they are right. There IS always something wrong with me, but I have learned to live with it. It has become my normalcy. It not only causes physical pain, but emotional pain, as well. It is frustrating to feel what I feel and have no one understand. The stress of being a burden on your friends and family. I will not even mention the endless medical bills!
I could write an entire book about my 6 year struggle with Lupus. When I was first diagnosed, I was told that the odds used to be 50-50, meaning that you would die within 5 years of diagnosis. Today there are more tests, better treatments, and a larger percent chance that Lupus will not shorten my life-span! I have made it this far and I will continue!! I may feel like crap and my bad days may be pretty bad, but I will not succumb to this. Instead, I have become a Lupus advocate and so can you!
http://walk.lupusresearch.org/site/TR?pg=personal&fr_id=1490&px=1471614
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