Oh hello! It's your girl, Angel!
Lupus has been described to me as 'The Look Good Feel Bad Disease'. Many of the people who see me every day and those who know me well, don't know that I suffer from lupus. Some know I have the disease, but don't really understand what it is I go through, what it means to live with lupus. So here's my story.
I moved to Tulsa, Ok to go to flight school at Spartan College of Aeronautics and Technology shortly after graduating high school in 2008. I planned my whole future around aviation. By early 2010, I had earned my Private Pilot license and was 3 flights away from earning my Instrument Rating. I was healthy and in great shape. I ran 2 miles a day, I had an active social life, and I was a full time student while working full time.
I remember the first day I felt pain. Excruciating pain. April 20th, 2010.
I was at a music venue with some friends and all of a sudden I realize my knees hurt, like really hurt. They were swollen and hot. I felt like my knee caps had shattered. It was so bad I left the show early crying with each step I took to my car. I slept downstairs on the couch that night because I couldn't climb the stairs. In the weeks to follow the pain spread from my knees, to my hands, my shoulders, my ankles, my hips. My muscles were sore. My joints were swollen. It hurt to stand up, to sit down, to take a step, to grasp an object or raise my arms. Everything hurt, like I'd worked out hardcore with the Marines the day before and totally skipped stretching beforehand. But I hadn't worked out with the Marines. It didn't make sense why I'd hurt this much. I thought it'd go away, like a cold or a headache, but when it didn't I had to go see a doctor.
I picked a random general practicioner in Tulsa. He gave me a cortisone shot. The next day, all the pain was gone! I was cured! No, it was gone for less than a week and then it all came rushing back one morning. I went back to the doctor to get another shot. That's all I needed right? Nope. Doc said I could only have one cortisone shot every 3 months! So I figured I'd load myself up with Aspirin and Tylenol and wait 3 months. But I just couldn't manage the pain. I was taking WAAAY too many pills and was still having intense difficutly moving and I couldn't focus in class. My teachers had noticed and were starting to refuse me admittance to class.
One day I woke up and my feet swollen. Huge. So were my ankles, my calves, and my knees. I usually wore skate shoes that were a size too big for me and I couldn't even get them on. Because of a previous ailment, I happened to have an appointment with my urologist that day, and the moment I walked into the office they sent me to the ER. I was hospitalized for 2 weeks. That was June 2010. My grandmother flew from Austin to Tulsa and stayed with me in the hospital. After what felt like hundreds of tests, the doctors finally came in and formally diagonsed me with Systemic Lupus Erythematosus. Grams stayed with me for a few weeks after I was released from the hospital, and then I went to live with her in Austin for a while since I wasn't ready to take care of myself. Simple tasks like cooking a meal, washing my clothes, or walking my dog, were insanely difficult for me. It hurt to move or use any bit of muscle strength. I was dizzy and nauseaus from the meds the doctors had me on. I was exhaused all the time. It took about 4 months for me to get back to a point where I could live on my own. I had to figure out HOW to live on my own. How to handle all of my responsibilities while dealing with the symptoms and side effects.
It's much more manageable now than it was 7 years ago. I take steriods everyday to suppress my immune system and keep the inflammation in my joints and muscles down, but symptoms come and go. Some days it's vertigo and I'm dizzy and disoriented. Sometimes it's photosensitivity and being in any direct sunlight drains me and makes me nauseaus. Sometimes it's fatigue and I'm exhausted though I slept 9 hours the night before and have guzzled 2 energy drinks. Most days it's a swollen knee or a sore shoulder. Most days I can handle it.
Other days... I struggle to keep a smile on my face though I feel absolutely awful. I feel like I'm neglecting my children because I should be taking them to a park or going on an adventure, but instead I'm tired and sore and don't want to be anywhere other than my couch. I feel guilty when I don't help out at work as much as I know I should be, or I'm sitting in the office when I should be out talking with staff and guests, but I just hurt too much to stand or walk. I get behind on housework because I can only do so much each day or I'll be really sore the day after, and if I have an all-over bad day I miss out on all the chores I should do and it piles up. I have to plan out each day, every task and activity, to make sure I have the energy to spend. I have to really pay attention to my body and recognize when I'm having a flare up of symptoms or if it's time to rush to a doctor. And there's always the anxiety of this disease really taking a toll on my organs and ending up in the hospital again for a few weeks... or longer... or it causing some issue that can't be treated. It's scary having a disease that's so hard to predict, so hard to understand, and so hard to find information about.
Some days are good days, and other days are bad days, but every day is painful. Every one of them. I used to wake up excited, ready to face a new day and have a new experience or accomplish something amazing... now I wake up every day prepared for battle with my own body. If I can find the energy to accomplish everything I need to do with minimal pain, I've won the battle that day. Some days I'm stuck in a haze where everything hurts and I'm exhausted from just trying to exist. Those days I've lost the battle, but I will keep fighting the war.
Imagine a day when doctors can say, “The war is over. There is a cure for lupus.” Until that day though, there is work to be done. There's just not enough research happening, there's not enough public awareness, there's not enough support for those living with the disease, and there's no cure. That’s why I’m taking action in the fight against lupus, and not just for myself but for every person who's diagnosed or has a loved one who is. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now™ in the Austin area to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal of $500 and support the Foundation's efforts to improve the quality of life for all people affected by lupus? $10 here, $20 there, a little help makes a big difference. Click 'Donate Now' and give whatever you can spare!
Will you sport some purple and walk with me to raise awareness of this awful disease? There's power in numbers, and I'm trying to amass an army! Click 'Join Angel's Team' to register to walk with me. Our team name is Purple Haze.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Come support me and the thousands of other people who deserve a fighting chance at a cure.