In the beginning……

My mom and I have been trying for years to figure out just when I started having lupus symptoms. It could have been the convulsions I had after the baby shots I had. Who knows? It could have been showing up when I was taking ballet lessons. I’d come home with sore, red and swollen knees. It could have been in grammar school when I would get very nauseated and have to go home from school. My mom used to say I had 3:15 itis because a couple of hours later I was absolutely fine. I used to sit out in the sun – a lot. I always got sick, but I looked better with a tan. I’d also always burn, despite putting on sunscreen.

In college I was always tired but I studied hard and played hard. Isn’t that what college is about? One day I got back to my dorm room and was so exhausted I decided to take a nap. When I woke up it was confused as to why there was so much noise in the hallway at 6 a.m. Turns out it was 6 p.m. 24 hours after my “nap.” After college I was always tired and losing a lot of weight. I figured it was because I was working hard and playing tennis almost every evening.

One night I went out with friends and when I got back one finger was red, white and blue – very patriotic. Then this started to spread to all my fingers – on both hands. I was always cold and had no energy. I was diagnosed with Raynaud’s Disease. My fingers would get very cold and turn blue and white. The red would come in when circulation returned. It was very painful. I was told to move to a warmer climate. But there was more going on and we went searching for answers. Unfortunately, there were none. I was 24 years old and I kept telling doctors I was sick and it wasn’t in my head. Sometimes just a few steps to the bathroom from my bedroom wore me out.

After going one winter where my fingernails turned purple and the skin around the nails turned black, I knew I had to find a warmer climate. I was unable to play tennis because I couldn’t hold the racquet – and I had been playing five or six days a week. I had dated one of the tennis pros at the club, so all of them tried to help me figure out a grip that was comfortable for me. None worked. The racquet kept following the ball across the net.

For me, life has always been an adventure. That’s how I look at it. After college I spent seven weeks on Australia. It was incredible. I was there on my own, but I had a friend in Sydney and cousins in Melbourne, so I wasn’t really alone. One cousin who is one month younger than me had been to the States a few times and we’d gotten very close. As kids we talked about being at each other’s weddings. By chance, I was at hers! What a thrill.

So, when it became clear I had to find a warmer climate I made a list of criteria I needed in a city. It had to be a warmer climate. There had to be publishing opportunities. I wanted a city with a younger population for making new friends. The city also had to be a National League city so I could see my Cubs. I decided to take a look at Atlanta. For my 25th birthday, I took a three-week trip, kind of the long way, to Atlanta. I stopped to see a friend in Pittsburgh. From there, I went to Reading, PA, to spend my 25th birthday with my college best friend – I arrived on his birthday, two days before mine. I stayed there a couple of days then stopped to see friends in Greensboro, NC. I spent eight days in Atlanta driving around, looking at publishing companies (I was offered a job on the spot and turned it down) and I looked at places to live. It seemed to be the right place. On the way home I stopped to see a friend in Cincinnati.

I moved to Atlanta and eventually went back to the publishing company where I’d turned down the job and was offered another, better job, on the spot. I took it.  But I started having other issues. My hands were hurting from the Raynaud’s but also for some other reason. I was able to predict, very accurately, when rain was going to start and how heavy the rain would be. My knees started bothering me, as well. And, I was still so tired and losing weight. I chalked up the fatigue to a very active social life. But that wasn’t it.

I look back at all of these things now and the lupus diagnosis I finally received starts to make sense. According to WebMD, about two-thirds of lupus patients are sensitive to the sun and the UVA/UVB rays from other light sources. Looking at the list of symptoms on the Lupus Foundation of America site, getting sick in the sun made sense. But I also learned that fluorescent lights throw off UVA and UVB rays and THOSE were making me even more sick. My 3:15-itis was probably a reaction to the lights I was forced to sit under every day at school. To this day fluorescent lights are a real problem for me.

I’d always had allergies, but developed more, and developed food allergies as well as hayfever. Hurting hands, swollen fingers, swollen knees, fatigue, weight loss. It all started to make sense.

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