Lupus is a Trickster

   By Niftydorkette  Jul 22, 2011

Lupus is a trickster. It hides, laying in wait for its next attack, and then pounces when you are in the middle of a family outing. The general idea behind the disease is that your body is essentially attacking itself. It’s different for everyone. Some people have their kidneys attacked or their liver might be affected, made worse by all of themedications. Others may have their skin affected causing rashes; or maybe their lungs and they begin to have breathing issues to the point of emphysema like symptoms due to tissue death. I’m always the anomaly, not to say others don’t have my issues but it’s rare. Lupus is attacking my nerves, muscles, and brain.

On an average day right now, it does affect me. Pain is a major symptom since my nerves and muscles are involved. During a flare up my brain tends to act up causing issues with memory, speech, coordination, and migraines. With my vast array of medications, I’m up to 24 pills a day and 8 supplements, these symptoms are beginning to be managed. I still have to be vigilant in keeping it that way. To avoid flare ups I have to stay out of the sun as much as possible, get plenty of sleep, keep stress to a minimum, and learn to slow down when I’m pushing myself too hard. This can be difficult to do being a full time mother, wife, friend, and employee.

Overall, Lupus is manageable; I want people to know that. I want you, reading this, to know it can be done. I won’t let it beat me or beat me down. A lot like cancer patients, attitude is everything. I’m lucky to have the doctor that I do since he treats all of me. He doesn’t look at me as a list of symptoms that he needs to throw more pills at. He genuinely wants to make sure my mental and emotional health is right there along with my physical needs. That means that he treats my depression, anxiety, and sleep to help me maintain that positive attitude. If I seem sad or off, he finds out why, and actually talks to me about that why.

That brings me to support. My support system is essential! I could not have made it this far without them. I have an amazing medical team behind me but more importantly I have a great group of friends and family. My husband has been entirely supportive, which I could never thank him enough for. Living with me during the past few years while trying to figure out what was wrong with me could not have been easy. The same goes for my mother and all of her fighting to find out what was wrong with me from the time I was in elementary school. I have great friends too, who actually take interest in my health andlet me vent when needed. If you have any chronic illness, a good support system is so valuable. I have a long way to go, lots more fighting to do, and I can’t imagine doing it alone.

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Parrothead by Parrothead | MARIETTA, GA
Jul 28, 2011

Hi Alysa -- thank you for sharing your story! My father suffered from lupus so I am familiar with many of the issues you described. I think it's so important that we keep spreading the word. Keep up your great spirits and please give your husband a pat on the back from me. I agree with your comments about support systems! Best wishes to you.

prmomambassador by prmomambassador | SMITHFIELD, VA
Jul 23, 2011

Thank-you for sharing this story!! You have such a great outlook. Keep it up, and know there are people out here that are rooting for you.