Tuesday, May 10, 2016
World Lupus Day
Lupus. It's an autoimmune disease some people have heard of, but many know nothing about it. I could give you the clinical definition (I know it by heart), however that really wouldn't tell you what it's like to live with lupus so let me provide you a front row seat into what it's like to live with lupus.
I'm a 21 year-old trapped in a body that feels 80 years old. My joints swell up like balloons, often it's incredibly painful to bend my fingers, which is semi-essential to everyday life. A lot of times it feels like fire is shooting through my fingers, now if I could shoot fire out of my fingers that would be a cool super power (just saying). Sometimes my feet swell up and I can't fit them into shoes, flip-flops in February anyone? My stomach also swells, no I'm not 16 and pregnant (I've been asked) so please stop looking at me like I'm a terrible person.
You say you're tired? Try living in my body for a few days and then you'll see what tired really is. I count my lucky stars if I get 3-4 hours of sleep at night. Sleep is illusive and naps have become my best friend. But really it doesn't matter how much sleep I get, 2 hours or 10 hours, exhaustion lingers over me like a giant cloud. And for the love of pete please stop telling me I look exhausted and have bags under my eyes, I'm well aware of them thank you very much.
"Do you want to hangout tonight?" When you say 'at night' do you mean watch movies in our PJ's and eat snacks at 6pm? Because if it's after 8pm lord knows it's not happening, I have to go to bed and count the cracks on my bedroom ceiling and pretend to sleep. There's going to be drinking there? Yeah definitely not going now, lupus and drinking don't exactly mix. It's like smearing ketchup on your peanut butter sandwich instead of jelly.
Complain one more time about having to go to the doctor and get blood drawn and see what happens, I dare you. I've had so much blood taken out of me I have needle tracks on my arms. I'm on a first name basis with nurses in about a dozen clinics because I have blood work done so often. My doctor knows more about me than my best friend, he can even tell you what I ate for my last meal<- true story.
Food...HA. Don't even get me started. Spontaneous dinner out? Yeah right. Does the place have gluten and dairy free food options? And no I don't want to eat a giant bowl of lettuce. Want to know what my diet currently looks like so I don't have a flare? Gluten free, dairy free, low fat, low fiber, limited carbs. Is there one of those on the menu? HAHA.
This is a small glimmer into what my life is like. Yet this doesn't even begin to describe the ridiculous amount of doctors I have (more than I have finger for), the frequent doctor visits- I see my doctors more than I see most of my family, the medication- I'm not sure there's a purse big enough for all my pills, or the ordinary everyday things I miss out on in life because of lupus. I rarely go out to eat, it's just too hard, most social events are at night and I'm too tired to even think about going, and dating is a joke. Try explaining to someone why you want to go on a date at 2pm instead of 8pm or why you carry a bag of pills around.
My life with lupus is drastically different than what it was before lupus and I now know that I took my health for granted. In a lot of ways life with lupus feels like I'm living a double life. On the outside I look fine, I always say "I'm good" when someone asks how I'm doing, I get work done, I workout, etc. But really it's a facade. Inside I'm so exhausted I wish I could lay down on the floor and sleep, I'm probably hurting beyond belief but why bother to tell someone that and make the situation awkward?, and yeah I workout and get my work done but it takes triple the amount of effort for me to do it. I'm a shell of the person I used to be.
Lupus sucks. There really isn't any other way to put it. It a horrible, life-altering disease. There's no cure for lupus. Medications are used to help manage symptoms and if you're lucky you'll find one that works. Most medications take 3-4 months to work and if they don't work, well then it's another 3-4 months to try something else. Essentially you're a human lab rat (always a good feeling).
But, people with lupus are a special breed. We're strong and we're resilient. We live life in spite of the disease. We also have a special bond with one another. Some of the best friends I've ever had are fellow lupus warriors. We understand what one another goes through, we're there when the other has a rough day, we celebrate each others victories, and we stand united against this disease.
You see despite all the crap I go through and suffer through on a daily basis because of lupus I'm also semi grateful for the disease. Do I wish I didn't have lupus? Of course, but I'd never wish it upon anyone else. You see if it weren't for lupus I wouldn't know how strong I am, some of my best friends wouldn't be in my life, and some of my favorite memories wouldn't exist. To an outside maybe it's weird to bond over a game of Cards Against Humanity in a tiny room while your best friend is getting chemo for her lupus, but to me it's moments like those that show how deep our bond runs.
Most people don't know about lupus because it's not talked about. Everyone talks about cancer research, but lupus needs to be studied too. Lupus isn't like cancer where it's a visible disease, but essentially your body is at war with itself. If you don't think lupus should be studied I invite you walk in my shoes for a day or two and I think you'll change your mind- there's about 7 million people worldwide who would agree with me. It's a disease best served with a sense of humor (and a nap) because some days that's all that will get you through.
Today (May 10) is World Lupus Day, which is why I am sharing my lupus story. I invite you to learn more about lupus by clicking here. I also ask you to put on purple on Friday, May 20th to show support for lupus patients and research. Post a selfie on social media and use the hashtag #putonpurple to raise awareness. Let's stand together to find a cure for Lupus!
Posted by Rachael Miner