I recently found out that I have Lupus. Lupus according to www.lupus.org: is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). I found out through not only my normal doctor but also through a Rheumatologist here at NYU Langone Medical Center. I had many blood tests done to ensure that the tests were accurate. With Lupus, not every test will come up positive. Lupus is one of those diseases that can be both negative and positive, but after all of the tests came back positive, my Rheumatologist diagnosed me with Lupus, and possible Sjorgen's Syndrome. I'm still waiting for an appointment with my Ophthalmologist here in the city to find out that diagnosis. But since Lupus isn't talked about much, I thought I would share some facts about the disease and my story of how I found out.
Since you already know what Lupus is, what actually is the cause of Lupus? According to Scientists, Lupus has no REAL cause. It develops in a response to the inside and outside factors such as environment, hormones, and genetics. Genetics plays a huge role in Lupus because it's in your genetic makeup, and so my family and I are pretty certain someone in my family has it but doesn't know since it can be left untreated. It's better to not have it left untreated, but you can survive. SO what happens to the body with Lupus? Well, my body can't tell the difference between my healthy tissue, or foreign invaders, like the flu. To make this even more clear, my body is attacking itself, and there is no cure. There are only drugs to help with the disease. But luckily, I am not alone. There are about 1.5 million Americans and 5 million people worldwide with this disease, but it's still not super common.
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I happen to be one of 1.5 million Americans' with Lupus, and it's not easy. Or it hasn't been for the past few months since finding out. Since October 2016, I have been seriously sick with the flu twice, bronchitis, strep twice, tonsilitis and two kidney infections. That's not even including the times I've been sick with just a cold or when I was sick with food poisoning. That just shows you how sick I have been since finding out, and I was getting sick like this before ever finding out.
Before I found out, I had been diagnosed with Hyper mobility Syndrome, and I still am. My Rheumatologist still wants to keep that diagnosis from over 4 years ago. Since that initial diagnosis, the pain has only increased and so has the number of times I've had to go to the doctor. I also was always getting injured because my body just couldn't handle the amount of stress I was putting on it. My body also hates walking or standing for long periods of time because it only becomes inflamed. You should see me after a long day at the gym, plus dance, and regular classes. My body looks like a tomato, but then in the morning, it goes right back to normal.
Now, I do go to the gym as often as I can because it is healthy for me to be working out and getting stronger. It helps protect my joints, and I have exercises that I have to do for physical therapy. When I don't go, I don't beat myself up because I know that my body needs time to rest. Especially if I am having flare ups. Flare ups are pretty much just my body telling me that it is tired and that I am getting sick, so I need to get prepared.
Lastly, I am not asking for you to pity me. I'm simply asking you to help broaden your horizons on different diseases, and I'm letting you know that I am not lying about being sick. I hate being sick just as much as you hate hearing that I am sick, again. It's dreadful for me, and my body. The ONE thing I do ask of you is to support me in the Walk to End Lupus Now. I am walking this May in New York City for myself and others who have to suffer through this disease. If you could please support me and the others, that would be greatly appreciated.
