photos by Janet Mootz Photography
Lupus.
The first thing I thought when I heard that word was “What a ridiculous word! It sounds so ridiculous — like Loopy Lulu Lupus is BoBo the clown’s best friend.”
When you hear what Lupus can do, and what it has done to people, it changes your perspective. Then, in a blink of an eye, you have Lupus. You see what Lupus has done to not only your body, but your life, and as soon as you are diagnosed with this disease, you blame it. You feel you have no control.
Or at least that’s how I felt in the beginning of my Lupus story.
Some days — on the bad days — I still feel that way. But when you have Lupus — this disease that isn’t curable, that can attack anywhere at any time, a disease that gives you a lot of bad days and good days— it makes your good days so precious, and you thank God for those days. It makes you stop and take life day by day; it makes you slow down; and, in my case, it makes me watch a lot more Netflix in bed some days.
The summer of 2014 was when my doctors and I realized that something was going on with me. I had a butterfly-shaped rash, which was first diagnosed as eczema, along with fatigue, extreme weight loss, difficulty focusing, and dizziness. Because I had all these symptoms, I had to get multiple tests done. Their conclusion: hypothyroidism, my first autoimmune disease. But still this diagnosis did not explain the rash or why my rash popped in the sun, or why I was sun burnt within 15 minutes of being in the sun, and or even the fatigue that never changed.
So we went back to the doctor and were told that after developing one autoimmune disease it’s likely I could develop another. Then came the all-dreaded 24-hour urine sample, which indicated a lot of proteins in my urine. All these tests, doctor visits, constant tiredness, and weight loss was overwhelming and affecting my life! Not only could I barely pitch the ball over the plate when playing softball, but I couldn’t even stay up when having a sleepover with my friends. So it made a lot of sense when my doctors sent me on my first visit to Madison for more testing with a specialized kidney doctor and specialized autoimmune disease doctor.
At the end of the day, I was a lupus patient with two out of the three kinds of lupus, which had started to attack my kidneys. I was told that things would never be the same but that it wouldn’t be bad, and that I was able to live with my disease.
For most people that would make a lot of their worrying go away, but not for me. I broke. I wanted my life the way it was. I liked being the athletic girl with the great group of perfectly healthy drama-free friends. Now I realize what they meant was I’ll be fine, I’ll just be sick and tired quite frequently with a lot more responsibility because I have a lot of medicine to take at a lot of different times in the day.
Was it an adjustment? Yes.
Has my life changed? Yes!
Would I have it any other way? Don’t get me wrong. I want to be normal.
It’s harder to get good grades because I can’t focus.
It’s hard to take medicine every morning without food, then with food, then at night.
It’s hard to play my sports knowing that if I push myself too hard, I will be paying for it the next day.
It’s hard to have people look at you and think “Why is she here? She looks fine,”
It’s hard to feel like my teachers and friends don’t understand that I didn’t do my homework because I fell asleep right after practice and didn’t wake up until the next morning, or that I don’t want to go to my friend’s house ‘cause I just want to be home in my bed.
And, most of all it’s hard to watch my mom turn into my Lupus manager.
But Lupus has made me stronger. It’s made me appreciate my good days. It’s made me grow up and find myself. It’s made me realize I’m really interested in the medical field, and it’s made me feel lucky to not be as critical as some other Lupus patients.
So do I like having Lupus? No.
Do I wish it on anyone else? No.
But do I not want it? It’s now part of me, and I rule the Lupus; the Lupus does not rule me. I wouldn’t have it any other way.