Lupus [My Story]

It started out with a bug, just a little touch of the flu that only took me out of commission for a night. In fact, I didn't even miss a day of work. A day later, my fingers started swelling. Just one, but it was enough that I couldn't get my wedding rings past the first knuckle when I tried to put them on in the morning. The swelling only lasted a day or so, but then tingling started in another finger, and an elbow...pretty soon my feet were swollen too. Finally I'd had enough and made an appointment to see the doctor, apparently my awesome immune system that had kept me from missing a day of work in the past had been knocked down a peg or two by that random virus.

The doctor seemed perplexed. I hadn't been out of the country lately? (No, I'm pretty sure I'd have remembered that.) Well maybe I had a case of Fifth's Disease. Good news - it'll only last a couple of weeks, but we'll do a test to make sure that's what's wrong. The test came back positive, but because that could just mean that I've had it before, they ran the test again. Sure enough, it wasn't an active virus. Apparently I had Fifth's Disease in the past but probably never showed symptoms. Back to the doctor for some more blood tests - this time they tested for everything that can cause random joint pain and swelling...lyme disease, rheumatoid arthritis, rheumatic fever that may have gone untreated, or lupus.

As Dr. Gregory House (love that show) always says..."It's NEVER lupus". Except this time, it was.

The only test that came back positive was the ANA test for lupus, but since not everyone with a positive ANA has lupus, they sent me to the University to see a rheumatologist and they ran more tests. I'm pretty sure the Red Cross was insanely jealous of all the blood I was giving for testing on a weekly basis. Double stranded DNA test - also positive. That result, plus my symptoms, plus a myriad of other test results led to the diagnosis. I found out via a phone call from my doctor - "well, you have lupus," she said, "now you know". I thought I would feel immense relief knowing what was wrong with me, but instead I just felt sort of numb. I guess I had still hoped that it was something that I could take some pills for and after a week or two, it would go away. Instead, I was given a diagnosis of lupus - a disease that is (for the time being) incurable, although treatable.

I'm not gonna lie, I was upset. I wondered how it would affect my life, and more importantly - what did this mean for my photography business (which I had really just begun)? How would I be able to schedule sessions if I wasn't sure if my hands would swell up like balloons? Would I even be able to work my camera if that happened?

As it turns out, I shouldn't have worried so much. Not to say lupus hasn't affected my life, it definitely has, and will continue to until they (someday, hopefully) find a cure. However, photography has somehow been a bit of a haven from this annoying disease. Even on days when I wake up feeling stiff, sore, and swollen, the moment I pick up my camera for a session - I forget about it all. So for an hour (or 8 hours if it's a wedding), I get a break. I don't know if it's the adrenaline, or maybe just the fact that my brain is busy thinking about all of the technical aspects of taking a photo, but even on my worst days it's a reprieve from it all. I don't feel the pain so intensely, my fingers seem to work just the way they're supposed to despite a swollen joint or two, and for awhile...I forget.



Emily said...

First of all, I'm glad that you shared. I know how scared you were to say that.

Secondly, I think you're awesome and I'm so glad that photography is an outlet for you. I think things are truly meant to be when they provide such joy that you forget about the bad things in life for a moment.

Much love! Emily

Stacy said...

You are a very talented and inspirational woman! We love you! :)