What do you want others to know about lupus?
Lupus is silent to no one. It hurts not only the person with the disease, but the family and friends as well. Pain, fatigue, and some level of depression are basics. On the outside, many may not see this, but it is present. Organ involvement takes the disease one step further, and any organ or connective tissue can be affected. Get to know someone with lupus.
Why is lupus a cruel mystery to you?
Lupus completely changed my life; but maybe not for the worse. I was 29 and had just had my second child when symptoms became too serious to ignore. Enjoying a dream global job at a fortune 100 company was irrelevant to the disease when it left me in bed in Switzerland for days. My HMO providers, for three years prior, would not order the testing to find the source of my pain. It was an out-of-town doctor visit that finally diagnosed lupus. It is a double-edge sword finding out "what" you have. Impact is no more children, no more dream job, no more plans for horses and a farm, no more basic family hiking, biking and many other activities. My husband became a single parent to a large degree in those early years. Finding the right medication "cocktail" was a journey. Discovering who you are without your career and the corresponding income. Discovering who you are with permanent limitations within your own home; it was and is difficult. But, the blessing was that I was home....every day. I was able to give the small amount of energy I had to my family and I still am. Sometimes I get involved in other things as I can, but my family comes first, and I know I come first to them. Finally, I know our children are different people because I was home. We survive lupus together and for this, I feel blessed.
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