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General discussion -- Share your stories about Lupus

By EmpowHER February 8, 2008 - 1:51pm
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Share your experiences about lupus and help other women.

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EmpowHER Guest

I have had lupus for 18 years and just ran my first marathon. When I was diagnosed at age 12, I would never has envisioned running in my future.

July 10, 2010 - 7:25am
EmpowHER Guest

I was diagnosed a few months ago with lupus, antiphospholipid antibody syndrome, and now Meuniere's Disease. Clearly, my autoimmune system is having a field day! I even lost most of my field of vision in my right eye. That said, I am running a half marathon in a few weeks, doing a triathlon this Sunday, and will be training for a full marathon this fall. I do think it is harder for me to train (I'm out of breath more, tired, sore, than my compatriots), but it has been well worth it. I feel like if I stop, then this disease will have "gotten" me. Working toward good health is an ever evolving this for me, and I am not always successful, but I will keep trying. Emotionally, it has been enormously helpful.
Love to hear other's experiences.

April 28, 2009 - 8:08am

Just about the time I was diagnosed, a friend was also diagnosed with lupus. But, it affected us so differently. She had a terrible time adjusting to the medications, adopting a vegan diet, dealing with the chronic fatigue and aching joints. I thought I was doing just fine...until, one day, I couldn't get out of bed - for about six months!

It seems very odd to have a whole team of medical specialists when you have a condition that doesn't qualify for disability. Yet, this chronic autoimmune disease brought my otherwise active life to a serious halt.

Eighteen years later, I am preparing to run a marathon and have already run four half marathons. I've been prednisone free for at least five years and off my arthritis meds for the last two.

Earlier this week, my chiropractor asked why I started running, and why train for something as demanding as a marathon. I was inspired by a story I read a few years ago about a lupus patient who decided to train for a half marathon and finished it in 3 hours. I don't really run, not the way you would envision runners. I sort of shuffle pretty fast. But, I can finish a half marathon in under 3 hours - pretty good for these old bones!

Sure, I still have a lot of chronic issues to deal with. But, it just goes to show that there is hope for lupus patients. Staying active has been mine.

I'd love to hear from other women who are also going through this! Have you changed your diet? Modified your exercise? Did something work for you that hasn't worked for others?

February 8, 2008 - 8:39pm
EmpowHER Guest
Anonymous (reply to alysiak)

I have had lupus for 21 years and the very best of those years has been in the last 3- since I started running! I just finished my 4th half-marathon 3 weeks ago and hope to complete many, many more. I think that if you eat well, get enough sleep and listen to your body (don't overdo it), exercise helps to relieve stress and build confidence. I have dealt with a few set-backs during my days as a runner (major flare after completing a full marathon) and urge those who take up endurance sports and are living with an autoimmune disease to discuss it with their specialist before starting any training.

September 30, 2013 - 7:48pm
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