Do you work here?

"Hello Liliana. Nice to see you again. Let me check your latest labs...and I see here on your appointment history that I just saw you two weeks ago....(pause)...and you've had appointments with 3 other clinics in this short time! Whoa! You must really like this hospital! Gosh, you're here so often that you might as well get paid! It's like you work here, huh?"...this is what my doctor told me once at a follow-up appointment. He didn't mean it in an offensive way. He was making a joke out of the joke of a reality for me, numerous doctor's visits every month.

There's a mental disease called Munchausen's Syndrome where a person exaggerates or creates symptoms of illnesses in themselves or their child/children in order to gain investigation, treatment, attention, sympathy, and comfort from medical personnel. Sometimes I wish that this is what I had instead of the cruel Lupus that lurks inside of me. I do not enjoy driving to the doctor's office (or lately, being driven to) every few days. I take no joy in the needle pricks to test my blood. I find no comfort in the sterile environment where I spend most of my days. Yes, I am glad for the medical attention to treat the symptoms that ail me, but how I wish that it wasn't real. I know that Munchausen's is a very serious condition also, but I think that it would be more treatable than my Lupus.

The doctors and nurses at that hospital have saved my life more than once. I am appreciative of all their hard work and their genuine interest but if I never had to see any of them again it would be an answer to my prayers. It would mean I was healthy. I'm there so much that when I have a week or two WITHOUT any doctor's appointments I feel totally lost. It's like I have no purpose. I get very antsy and I try to relax and enjoy the fact that I don't have to be somewhere at a specific time, but I can't. I hate that I have gotten so used to doctor's visits. When I go to the lab there's usually someone there who doesn't require frequent blood draws and they'll make a face when they get poked or get really pale when they see the blood. I envy those people. I don't even notice when the phlebotomist pricks me because I'm so used to it. No one should get used to this. It makes me angry. It makes me sad. I'm at a loss as to what to do because there is nothing I CAN do except fight it. Fight the Lupus. And just keep going to the doctor's office.

Sometimes, though, I'm glad that I am there so much. I've gotten to know most every place in that hospital. And I have met some really incredible people, staff as well as patients. Some of these I've met in the waiting rooms, but some I've met when they needed help. So when I see a confused looking face in the crowd of people at county hospital, I ask if I can help. I like showing them where they need to go. I might as well be useful, right? At times like that, I feel like I DO work there. It's nice to be able to help somebody, even if it's something as small as showing them where the elevators are located. And it's an ice-breaker when meeting new people

I may not officially work there, but in a way I do work there. I work to keep myself in as best health as possible with all the complications of Lupus. All those doctor's visits and pharmacy trips and Lab appointments, they're the job I must complete to stay 'healthy.' I just HOPE that one day it will no longer be necessary because Lupus will be a memory. And the Wolf will bite no more. One day it will no longer be an untreatable illness. There WILL be a cure. I don't know who I'll be then, but I hope that at least I'll have gone through this whole experience and come out the other side a stronger woman that has somehow made a difference. I want to one day no longer be this Wolf's Butterfly. I'll settle for being just a butterfly. Grateful to be alive and healthy.

The Beginning

Pain is measured on 1-10 scale in the medical community. When a doctor/nurse asks you to describe your pain in terms of a number with 10 being the worst pain imaginable, most people say 10 but it's not really true. I've done it myself just to get some relief from the pain faster.

But I HAVE experienced the worst pain imaginable and it was more than could be measured on that tiny scale. In the picture above you can see some of the cause of that pain.

In the Spring of 2000 I was a college freshman. It was my first time living away from home and it was a very stressful experience for me. I've always been a good student and studying for college exams was stressful but tolerable. Living on my own was not as tolerable. There is no definite cause for the illness with which I was attacked, but stress is believed to be a major factor. The stress of this time in my life was so great! One day I was walking to my dorm after class when my legs suddenly gave out from under me. Weird. I hadn't tripped on anything. My legs just didn't want to stand anymore. My hair was falling out a little. I had these aches and pains that I attributed to college living. But one day I felt as if my breathing was different. The air I sucked into my lungs felt like dead air even when I was outside on the beautiful campus. And I also noticed a small red rash on my neck. The rash was what made me go get checked out by campus health. Looking back now, I see that this was when the Wolf bit into me. This was the point when I stopped being the woman I was just getting to know.

Like every other college student at the time I was looking forward to Spring Break. It was my first time going out of the country and having fun with my friends. I was a little nervous but mostly excited...except for that rash. It didn't want to go away. Campus Health had given me Prednisone and cream for the rash but it wasn't working. It bothered me but I thought it was no big deal and even though I'd been warned not to drink while taking the medicine, I knew I wouldn't listen. This was spring break after all. My body, however, did not agree with my mind. Our first night in the hotel in Mexico I was overtaken by the chills and a very high fever. I couldn't eat and had nausea and vomiting. I cried myself to sleep wishing desperately that I could call my mom to pick me up but I thought she'd be mad at me for having gone on this trip while I was sick. The next day I went to a pharmacy and the pharmacist gave me antibiotics. I felt soooo much better! That night I was able to go out and it was a blast! We danced and flirted with guys and drank like fish. When I finally stumbled to our room late that night I thought I was okay. Then I saw that the rash had changed. It was no longer small and red and itchy. I had bumps filled with a clear liquid on my neck.

Fast forward to a few days later. I'm finally home and my mom is so worried about the rash's evolution that she send me to an urgent care clinic. I go and they do the same that had already been done: Prednisone, cream, antibiotics. It wasn't working. And the rash was growing. It had taken over my torso and now my eyes. I could barely open them. At that point my mother was shuttling me from ER to ER trying to find the cause of this freaky rash. I heard diagnoses of all kinds but no sure one. Just a lot of 'possibilities'. I resigned myself to living with this and never knowing what 'it' was. Then the rash changed yet again. One day every point on my body that was affected with the rash was on fire. The pain was unimaginable. It would not stop. It burned and it was sharp and I couldn't stop crying. I'd been to see so many doctors with no real help that I was sure this pain meant I was now dying. I begged to die. It would be a relief compared to what I was being put through. The bumps had morphed into full blisters that would be hard for a day or two and then burst on their own or with a doctor's sharp needle. After they burst I was left with open lesions instead of blisters. Lesions that would take weeks and months to heal completely. And they smelled of rotting flesh. Nurses would always make comments as they came into my room to change my sheets. That made me feel bad, but the physical pain! My God, the pain was like no other. I questioned God daily. Why would he make someone suffer so much pain and not kill them? I was put on pain killers but they didn't truly help. Since the insurance company preferred to keep me out of the hospital, I was sent home with a prescription for Hydromorphone (Morphine in a pill). Although my mother carefully doled them out to me at the right times, I never stopped screaming- even when no one else could hear me after I had taken the morphine. In my head I was always screaming from the pain.

About two months after I noticed the rash I was able to see a dermatologist. This doctor saved me from going mad. He looked at me and asked if I knew what Lupus was. I'd heard of it before but was not familiar with the symptomology. I wondered how he knew just by looking at me. It turns out that just a month before he'd had a patient that looked just like me (in regards to the symptoms). He then took me back by asking me if I had noticed any other symptoms: Hair loss, muscle aches, pain in the joints, leg weakness, fevers, sensitivity to sun exposure, fatigue, mouth ulcers. Yes! I had experienced all these and more! He ran a few tests but pretty much at that first meeting he knew I had Lupus. Just knowing that this thing attacking me had a name was a relief. I laughed. I wasn't crazy after all. There really was something wrong with me. He also told me that there was no cure for Lupus. I would have to battle this illness for the rest of my life. There was no real medication to combat it but the symptoms might be controlled. The first drug I would take was called Prednisone. Funny right? The first medication that Campus Health had given me for my little rash was now the first medication I would take to battle this full blown disease. And the second was called Plaquenil. Lots of Lupus patients have taken this drug for decades and it has helped them so the dermatologist thought I might give it a try.

I cannot say that just by popping a few pills I was magically free of my symptoms. The rash, or lesions now, took months to heal on my skin. The pain took weeks to lessen. At least the physical pain lessened. The emotional pain is much more cruel and can last for the rest of your life. The medications seemed to be working though. My labs were showing promising results and my doctors gave me reason to hope. Although my life and health was different now they assured me that this did not mean my life was over.

I looked in the mirror when I was seventeen and I saw a young girl on the brink of adulthood. I did not feel pretty but I did not feel ugly. I felt attractive. I felt nervously excited about the future. After the Wolf bit me, I could not look in the mirror. It hurt too much to see a body so ravaged by this disease. It hurt to feel like I was a victim and not be able to cure myself of the feeling or of the disease. I felt truly ugly. I scared people. Maybe they thought I was contagious. Let me assure you, you will not catch Lupus if I hug you or if I touch you in any way. It is an auto-immune illness.

You may wonder why I keep saying that the Wolf attacked me. The word Lupus comes from the latin word for Wolf. In Aristotle's time the disease was recognized and the rash that accompanied it was thought to resemble the bite of a wolf. Now we refer to this rash as Malar Rash (butterfly shaped on the face), hence the term butterfly. I feel I am the Wolf's Butterfly. I am one of millions in the USA alone. We fight the battle against this disease daily. We are neighbors, friends, family, your store clerks, nurses, postal workers, butchers, librarians. Sometimes you may not know that we are being attacked by this wolf. You may not even know that we even have this disease.

One of my fears when I meet someone new is that if they find out about my illness they will see me differently. I've had enough of people looking at me differently. I tried to hide it in the beginning. It's been nine years. I fight Lupus, depression, my own worst thoughts, other's ignorance and I now try to present my Lupus as a fact when people meet me. I have Lupus but Lupus does not have me. Not anymore. My life was put on 'Pause' when I was eighteen. When I was finally able to push the 'Play' button on my life I was 25 years old. I finally accepted that my life was no longer going to be the same. That young girl I was getting to know as a woman, she died. She no longer existed after I got Lupus. But the woman I had become was somehow a stronger individual capable of fighting illness, bull headed doctors, ideas, ignorant nurses, truly dumb ass people, and my own desperate thoughts. After the Wolf bit into my soul I transformed into a different person and, I hope, a better woman. (*That dumb ass person was someone who told me in my hospital bed no less, that the reason I was sick was because I surely did something so horrible in my life that this was how God was punishing me. And as weak and vulnerable as I was, I believed her in that moment. She was the sick one for trying to make an already depressed, ill person feel even worse).

This was how it all began. And it is still an ongoing battle. There is still no cure for lupus but HOPE is the drug we all willingly give ourselves in addition to the daily regimen we take for our symptoms. We HOPE that a cure is on the horizon. We hope for a world where Lupus will be a distant memory. We hope for an end.