My SLE story

I'm 26 years old with one child and a loving husband.Two years ago my symptoms of illness got bad enough for me to go see my PCP (Primary Care Practitioner). The symptoms where new; I couldn't eat, or hold down food.

All my life I had issues. I was my mother's sick child. The one always in the hospital or going to the doctor for one reason or another. The answers were always the same "She's a kid, probably sprained her hand playing." or "Seasonal allergies affect the immune system so she'll get sick a lot if there's allergens in the air." They ignored the fact that "allergies" put me in the hospital for nearly a week. My mother chased after answers and finally gave up. She began saying "I don't know what you're going to do when you're my age."

I was too skinny so they put me on a diet to gain weight, then I became overweight and they began saying "Her weight is the problem." they told my mom to make me eat more vegetables and fruit. "Limit the junk food." they said and my mom's eyes bulged out of her head on the drive home. "'Limit the junk food?'" She'd screech "Like we can afford junk food and snacks." It was true too. There was always vegetables with dinner, we lived on a farm. Onions, green beans, collards, string beans, pole beans, kale, cabbage, carrots, tomatoes, okra, and more. We grew them. Fruits? We had those too; pear trees, blackberry bushes, blueberries, apple trees, watermelon, and even strawberries. We got snacks when we were sneaking into the blackberry bushes.
The doctors would tell my mother, "Don't let her play video games or watch to much TV." yeah she went home steaming mad on those days too. We had four TV channels on one small TV in our living room. Video games? Maybe if I visited my friend in the city over. Nope I was a good old country girl, never found me inside. I was always out climbing trees and sitting on haystacks watching the cows eat, or my absolute favorite playing down by the creek and fishing. The creek was nearly a half a mile through fields and woods from my house. No population in sight. I loved it, even with the fact that my ankles couldn't support my weight and would frequently twist leaving me with said half mile to limp back home on a swollen foot.

I got use to the twisted ankles, the knees giving out randomly, the swollen hands, the consistent headache, the fact that within 10 minutes of being in the sun I looked liked someone had baked me and felt like I had been dipped in acid, and my chest tightening in pain then leaving me dizzy seconds later. It was just my body, the doctors had no answers for us so I just learned to make it apart of me.

Within just two years my mother and I gave up. I didn't care and she couldn't find the answers. I think that's why she became a RN. Now she has her M.S. in Nursing and is weighing the idea of a PhD, but I think she got tired of the doctors and went the only route she knew to go.

I was about to turn 24 when I began showing new issues. It started out small. I went from eating three meals a day to just 2, then 1. My one gradually faded into a half a meal then into a few bites of food a day. I began not being able to hold food down. One bite would send me running for the bathroom. My bowels began changing. My hands began to swell more. Walking became so painful. I didn't know what was happening. My doctor did an RA panel, it came back negative, so he sent me out to Gastro and Rheum specs. Who did a series of their own blood panels. I use to joke that I liked hugging a porcupines because my veins are really bad and just to get one vile of blood I'd be stuck five or six times. The Rheum specialist sent me to Neurology, who looked at me like I had no business being there.

Then the results came in, my best friend and I went, we both had appointments that day so we figured we'd carpool. The doctor came into me room and said "Let's go to my office to look over your results." Okay now I was nervous. They only ever do the office talk for the really bad stuff. She tells me "blah blah blah antiphospholipid syndrome syndrome, blah blah blah Lupus, possibly systemic lupus erythematosus or SLE for short, blah blah blah."

I walked out of the office and right up to my friend and she asks "So how did it go." and I look at the paper, then I looked at her and began laughing. She takes the paper from be and reads what the doctor wrote and begins laughing too "At least it's not cancer." and I look at her and smile. "Indeed" well I needed more x-rays apparently so we began walking over to the imaging center which was in the same building and all the while we're talking and laughing about me moving or Oregon or Washington, somewhere not sunny and having a "Green" house with my art studio set up in there.

And we spent the time waiting looking up information online about what SLE was, cause I'll be honest. WE KNEW NOTHING. With each new page of information we found the dimmer it looked and the more I began to shut down and suppress. Let me tell you, I am good at suppressing; I could be in a full blown hysteria and suppress it within seconds to the point where you couldn't tell I was any sorts of upset.

The next two years have been a horrific battle between my PCP and my RA doctor. My blood work is inconsistent, sometimes I have the antibodies, sometimes I don't. My RA says that without the blood work showing I have it, I can't be treated, my PCP says I have most of the physical symptoms therefore I should be treated.

Not to mention, I've gotten worse. I live on Phenergan now take 2-3 times daily as needed. I'm suppose to be on several different pain killers, they're sitting in my medicine cabinet collecting dust, on really super bad days my husband might cram them down my throat with his loving "I'm worried" eyes as he stares me down. I'm on an anti-inflammatory called Diclofenac 75mg twice a day. My doctor keeps throwing around the term "Pain Management" and I'll be honest, I duck him when he does. It's scary, I know what those medicines do to you and when I think about how one bad day lays me up in bed completely useless to my family, I shudder at the thought of those pills. I'd rather suffer the pain and enjoy my family than suffer non existence due to drug induced comatose. These drugs are very scary. I'm still recovering from the Prednisone they put me on at the start of August. Finally got rid of the ear infection and I'm starting to finally dry out the acute bronchitis that was brought on by a lovely cold that laid me out cold for several days.

I carry an umbrella with me at all times, which living in Florida is actually quite handy. If I forget my umbrella and have to spend the day in the sun do to errands or an event, I can promise a lovely hive looking rash that burns like acid. Needless to say, I very rarely forget my umbrella. People on my campus look at me really weird too when I'm walking to my next class.

I've had to give up a lot of things like dairy, eggs, bacon. I've gained a lot of things too, though, like the ability to look at a load of laundry and say to myself "Tomorrow, I've done to much today." use to I'd just keep going until I regretted it.

We've got it confirmed now, new RA and all. I indeed do have APS and SLE. We know it affects my digestive system, musculoskeletal (i.e. my joints), and my peripheral nervous system. No kidney involvement, even though I show the signs, the tests come back clean. Which I am grateful for. The kidney issues seem kind of scary. At the end of the day, it could be better than again it could be horrifically worse, so I'm grateful and happy.
The sun and I; we'll never get along, however it won't stop me from being outdoors.