I am the Face of Lupus: Part 1

With May being Lupus awareness month, I thought it might be appropriate to give you a background on my life since being diagnosed 10 years ago.

In March of 2003 I was 19 years old and living in Oxnard, CA working as a receptionist at a veterinary hospital.  I was working for a year while living in CA to establish residency in order to pay in-state tuition to a photography school.  I started having some weird symptoms like aching hands and feet, hair loss, blisters on my fingers and toes, and a rash across my nose and cheeks.  I initially thought that it might be an allergic reaction from handling the penicillin drugs at my job, so I stopped touching those medications and was waiting until my insurance kicked in after working there for 3 months.  However right before I hit the 3 month mark at this job, I was fired.  The reason they gave me, 'it doesn't seem like you like your job enough.'  What a crock and talk about kicking someone when they're down! So with the symptoms persisting and no hope of getting insurance anytime soon, I went to a sliding scale clinic to get checked out.  The doctor there was very nice, ran some blood-work and said they'd call me with results.  A few days later they called and asked me to come in to go over my results.  I figured if they wanted to tell me to my face, then something must have shown up in the bloodwork.  Once I was in the exam room the doctor came in and gave me a few pamphlets and said, 'I can't technically diagnose you because I'm not a rheumatologist, but based on your symptoms and blood-work, I'd say you have lupus.'  I left the office not really thinking much of it, imagining I'd take some pills and be all better.  I remember calling my parents while I was walking to my car and my mom was definitely quite upset upon hearing the undiagnosed diagnosis.  That made me wonder if maybe I should be more worried. 

I got a referral to a rheumatologist, the closest one, which was still 45 minutes away and since I didn't have insurance I had to pay out of pocket.  Rheumatology visits are upwards of $200 and that doesn't include any labwork.  Trying to figure out how to pay for it all had me more worried than what life would be like with this disease.  I had to wait what felt like an eternity to get in to see the specialist although I'm sure it was only about a month.  In the meantime I applied for various jobs in Santa Barbara and was hired at a holistic animal clinic as a receptionist/veterinary technician. 

I went to see the rheumatologist, who was very old, but kind.  He ran more labs and said that with my symptoms and a positive ANA (anti-nuclear antibody) test that I indeed did have Systemic Lupus Eurythmatosus AKA SLE.  And with that, my life was changed forever