My Story: A Virtual Perspective
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[AUDIO PLAYING]
The symptoms that I first noticed, were fatigue and joint pain and skin rashes. And my hair was falling out. Before lupus, I was a professional dancer. Then as the symptoms kept coming, everything just stopped. I'm not dancing these days but I still enjoy watching it.
My journey to get to the right doctor took a long time, and it wasn't until I was pregnant that I really started actually getting answers. At that point, there were two lives at stake. And so many more tests were run. And I was given, at that point, the official lupus diagnosis and was put on medication. I'm on hydroxychloroquine. And I take 300 milligrams a day.
It helps a lot with my fatigue and joint pain. It was very gradual. But I started noticing that my symptoms weren't as bad.
There are definitely lifestyle modifications that have helped. Diet is really big. Cutting out sugar is a big thing. Rest is so important. Managing stress and also staying out of the sun and wearing sunscreen, those all help a lot.
Pregnancy with lupus is, I called it my full-time job at the time. Because there are a lot of extra doctor's appointments, ultrasounds, monitoring. There's a lot that can go wrong. And luckily not too much did go wrong. He's very healthy. I was relatively very healthy through the pregnancy.
My partner being here has been everything, really. He picks up the slack even when some days, weeks, or months the slack is miles long. Some places that I've found help are support groups, different friends that have lupus and a couple of different websites online and podcasts.
Just know that you're strong, there's a battle that you have to fight that so many people will never understand. It's OK to sometimes say, this sucks because it does but good days will come.
SPEAKER
I started to notice something was a little bit off maybe about five years ago. I started to get tired all the time, and I couldn't make it through the day without having to take a nap. I would get low-grade fevers. Especially if I stayed up late at night, the next day I would just-- I would feel like I'd have the flu. The symptoms that I first noticed, were fatigue and joint pain and skin rashes. And my hair was falling out. Before lupus, I was a professional dancer. Then as the symptoms kept coming, everything just stopped. I'm not dancing these days but I still enjoy watching it.
My journey to get to the right doctor took a long time, and it wasn't until I was pregnant that I really started actually getting answers. At that point, there were two lives at stake. And so many more tests were run. And I was given, at that point, the official lupus diagnosis and was put on medication. I'm on hydroxychloroquine. And I take 300 milligrams a day.
It helps a lot with my fatigue and joint pain. It was very gradual. But I started noticing that my symptoms weren't as bad.
There are definitely lifestyle modifications that have helped. Diet is really big. Cutting out sugar is a big thing. Rest is so important. Managing stress and also staying out of the sun and wearing sunscreen, those all help a lot.
Pregnancy with lupus is, I called it my full-time job at the time. Because there are a lot of extra doctor's appointments, ultrasounds, monitoring. There's a lot that can go wrong. And luckily not too much did go wrong. He's very healthy. I was relatively very healthy through the pregnancy.
My partner being here has been everything, really. He picks up the slack even when some days, weeks, or months the slack is miles long. Some places that I've found help are support groups, different friends that have lupus and a couple of different websites online and podcasts.
Just know that you're strong, there's a battle that you have to fight that so many people will never understand. It's OK to sometimes say, this sucks because it does but good days will come.
