Friday, May 2, 2014

May is Lupus Awareness Month

For those of you who do not know, May is Lupus Awareness Month. Lupus is a serious disease that changes the life of those who suffer from the symptoms. Some Lupies experience mild symptoms, but for those who suffer from the severe effects, life is an endless struggle.

In March 2010, I was diagnosed with Lupus (SLE). It was my last semester of college. The previous semester,  I noticed I was having more difficulties climbing the stairs to our apartment and the stairs at my college.  I also had a pretty bad rash on my face and no idea what was causing it. I was having trouble remembering things and concentrating in class and on my studies.

I developed two staph infections on my left arm. One at the bend of my elbow where I had a bug bite and one on my outer elbow. I still have the scars. The infection on my outer elbow got so bad that I went to the ER on Thanksgiving day 2009. The doctor never looked at my facial rash or listened to me when I told him my entire body hurt and I was exhausted all the time. He drew a circle around my infection, told me it was a staph infection, and treated me as if I was a drug addict looking for a fix. (Our small town hospital usually treated people this way. So I was used to it.) I  wanted blood tests and an explanation for my symptoms. I didn't want a ball point pen circle on my arm and a "get the fuck out of here" look.

This is the point where I started to research my symptoms on WebMD. (Which is a VERY scary place to go looking for possible causes of your symptoms.) At first I thought, maybe it is this, maybe it is that, but I finally clicked on the description of Lupus. And my heart stopped. I told family members about it and they said it could not possibly be Lupus. EVERYTHING WOULD BE OKAY.

But the next semester I was still sick. In fact things got worse. I started to get nauseated everyday. My throat was swollen and I could barely eat. What I did eat did not stay down. My hair began to fall out. I left hair everywhere. The shower was covered. It was constantly being swept up when I cleaned the floors. My family even found my hair in the refrigerator.  Ewwww.

Then I REALLY started to get fatigued. I would go to class around 9 am in the mornings. By noon I was so tired I started to sleep in my SUV between classes. Then I stopped waking up and began to miss classes. I would rest in the women's bathroom at school, and fall asleep. My grades started to suffer. I could not remember anything. And I was still getting sick everyday. My weight dropped below 100lbs. I was constantly cold but sweating at the same time.

Finally,  on my mom's birthday my best friend's family, whom I was staying with at the time, forced me to go to the ER. I had a temperature above 101 and I hadn't been able to keep anything down for over a week. So I went to the hospital. The doctor, totally different doctor than the doctor at Thanskgiving, took on look at my face and asked if I had Lupus. ONE LOOK AT MY FACE.

He asked what symptoms I was experiencing. Then told me not to worry that I was suffering from a severe stomach virus made worse by the possible disease the believed I was suffering from...and told me to go see my general practitioner as soon as possible. I had not been able to afford to see my doctor because all money was going toward gas for school. Oh did I mention by this time I was too tired to even drive, I had a friend who went to the same college driving me.

I saw my doctor, he ran bloodtests and referred me to a rheumatologist,  who then did further tests. And then the news came and I did have Lupus. So I went on anti-malarials, corticosteroids,  and ointment for my face. And I got better.

But then I could not afford healthcare and here we are now. I stay out of the sun as much as I can, I take NSAIDs for inflammation and pain, and I pace myself. I am just hanging on until I can afford healthcare again. I cross my fingers everyday and wait. But I am still here and do not plan to give up anytime soon. I get depressed.  I have flares. But I hold on to hope. 

Thank you for listening.

All infographics are from the Lupus Foundation of America website.

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