I am the face of Lupus: Part 3

Over the 9 years that followed, I had medication changes galore.  Ranging from spurts of steroids (which I insist come straight from the devil) to chemo drugs to anti-inflammatories.  I had what I thought were good doctors who turned out to be not so good, some just plain rude doctors, and some great doctors.  At my lowest I weighed 120lbs and at my highest 190lbs and every where inbetween.  I've grown my hair out to hide bald patches and I've cut all my hair off to transition in new fuzzy spots.  I have had times of intense pain and moments of pure joy when I was able to forget the pain.

I wish I could say that I'm healed, but I can't.  I still wake up every morning with soreness galore.  I often find myself becoming complacent in my life when I'm not busy doing something.  I'll look around to see the kid's toys all over the floor and wish that it didn't hurt so much to crawl or bend to pick them up or remember the baskets full of laundry upstairs that needs to be washed and wish that my knees and hips didn't ache so much going up and down the stairs.  I look at my dishes piled up and strewn across the stove and counter and imagine a life where I could wash them without searing pain stabbing across my back, but then I think, this is my life and what can I really do about it?

Typing this out brings tears to my eyes because there is so much that I want to be and do.

• I want to be a good wife: the kind that cleans up the house, vacuums, does the laundry, dishes, and has dinner ready. 

• I want to be a good mom: the kind who can give her kids piggy back rides and pick them up and sit with them on the ground to read a story.  

•  I want to be a good friend: the kind who is makes plans and keeps them and remembers birthdays and is always ready to help. 

Right now I think I'm doing the best I can.  I realize that there are more important things than housework and that my kids probably won't care if there are a few things I can't do with them as long as they always feel loved.  I make it a point to focus on relationships instead of tasks and try to see the sun shining behind the clouds.  I'll admit, sometimes it is incredibly difficult.

I'm sure there are some people who think I'm just lazy and some people who judge me for using a handicapped permit because I don't look sick, but in the end it doesn't really matter what people think.  Nobody will ever understand what it is like to have this disease, unless they have this disease.  No amount of me telling them or explaining it or having them imagine what it must be like will ever make them realize what it is truly like.  I felt ashamed to talk about having Lupus for a long time because I didn't want to feel like a victim, but after being hospitalized after having Nola, the cat was out of the bag so to speak. Now I speak about Lupus pretty freely in hopes that we can grow our empathy for all the sufferers of invisible diseases. 

I am the face of Lupus: Part 2

After being diagnosed I was put on prednisone (steroid) 20mg/day and Plaquenil (anti-malarial) 400mg/day.  I became very sick from these medications.  My stomach was in knots all day long, I couldn't sleep (which really doesn't help when you're exhausted all the time anyway), and my hair started falling out more rapidly.  There were more symptoms from Lupus too.  I was freezing cold all the time and I remember on my days off work I'd take 3-4 hot showers a day in order to warm up.  And remember, I wasn't in a cold climate, I was in Santa Barbara in May!  I started to not be able to remember things too.  When I was at work one day, I joked with my boss (who apparently was not a joker) about how I must be going senile because I needed to make lists of all the things she wanted done before I locked up at night.  She didn't think it was funny.  I also was itching from head to toe and could not stop it no matter how much lotion I put on.  The rash on my face was quite unpleasant and, unsurprisingly, really hard to conceal with make-up.  I trucked on for a month this way while working 40 hours a week at the animal hospital until I realized it was more than I could handle.  I made the most heart wrenching decision of my life and told my parents I was moving back in. 

I struggled with what to do with my life for a while after I moved back to Wisconsin.  I had my heart set on being independent, not needing help, and becoming a fashion photographer all on my own.  I wanted to change the way that women were portrayed in fashion ads from behind the lens, but I guess it just wasn't meant to be.  I had to give up all of that and find a new dream, a new passion, and it wasn't easy. 

That year in Wisconsin was particularly difficult for a few reasons.  #1) I had no health insurance #2) I had a rhuematologist who didn't really care (but really, how many of them do?) and #3) it was freezing cold in the winter, literally below zero and my hands and feet were in SO MUCH PAIN.  To put it mildly, it sucked.  So for many reasons, one of them being my Lupus, my parents and I moved to Tucson. 

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