May is Lupus Awareness Month
To help raise money and Help find a cure for Lupus please visit the Lupus Foundation's website here.
So it's almost half-way through May, (Seriously where is the year going?) and we're wondering if you know what we just recently learned; that May is Lupus Awareness Month. If you didn't know that, you're not alone. Most people are not familiar with Lupus. It's not a simple disease and it varies from person to person. In order to help create awareness we interviewed one of our Style Inspirations (post coming soon), Model, and friend, Rebekah. We're incredibly thankful that she was willing to share such a personal part of her life with us and we hope that this will help create a better understanding of how Lupus affects the lives of those diagnosed.
Interview Q & A >>
Q: How old were you when you were diagnosed with Lupus?
A: I was 19
Q: What were the original symptoms and what did you think was wrong?
A: So I used to exercise everyday, I would run 3 miles, then lift weights for an hour and flip flop between the weight lifting and pilates. Basically, I was in good shape and I looked awesome. One day I started feeling sluggish, tired, and sore and I thought either I was getting sick or I didn't have enough protein in my system. A week later the symptoms worsened to the point that I couldn't do my daily exercise so I was afraid that I was coming down with the flu. That's pretty much what it felt like. So I went to the doctor, flu came back negative and then they decided to test me for mono. Three times. So, in the process of a month of not knowing what was wrong I had doctors tell me that it was probably just mono (even though the tests were negative) and to see how I felt in a week or so. This made me ANGRY. I went on to google and it brought up Lupus and Cancer, and that scared me.
I asked them to do a test that rabbit trails into connective tissue and autoimmune disorders and to check my white blood count just in case there was something seriously wrong. Sure enough I get a phone call saying it was lupus.
Q: What are your regular symptoms like?
A: My symptoms of lupus can vary day to day. But on average, they come as what I stated earlier. It feels like I have the flu, not the stuffy nose, little tummy flu. The bad flu, nausea, extreme stomach pain, your body is sore and achy, your bones hurt, anything can set your sense of smell off and make you throw up. And it doesn't end at that. I get bad headaches daily, I can't eat without being in pain, my skin gets a butterfly rash across my face. With lupus you most likely get some form of arthritis and I have Rheumatory Arthritis on top of all of that. So my bones hurt, I can feel every bone in my hands and feet everyday and my back hurts and my hips hurt. This is everyday for me.
Q: How does Lupus affect your every day life?
A: Lupus is my life. It has taken over it entirely. It makes it almost impossible to be positive about my future because I can never make plans without the fear of me not being able to do them (they normally get ruined) and I have to plan anything and everything around my body and what it feels like that day. I am no longer allowed to be in the sun anymore, so that rules out most concerts, festivals, events, beach trips, etc. I can do these things but they have to be at night and I loved the sunlight, now I get to enjoy it through the windows of my house. Doctors encourage exercise, but I haven't been able to exercise since I was diagnosed. I miss it. I can barely make it up the stairs in my house. I know I sound very negative about lupus, but this is my life and there is no sugar coating it. It's spiked my depression and anxiety and I've lost almost all of my friends because they don't want to sit at my house and just do small things or they don't understand when I cancel last minute that it isn't intentional. I'm afraid of my future honestly. Lupus never gets better, it always gets worse. And if this isn't the worst yet I can only imagine how it's going to drag me down even further. The only things that keep me going reminding myself it could be worse. I'm starting to get used to the pain and I need to fight back. But I'm still trying to find ways to fight back. Through trial and error, most haven't been so successful. My parents aren't really helpful as they don't understand how much pain I am really in. My partner in crime Logan deserves an award for being there through thick and thin with me. From the lupus, the medications, the frustrations, the limitations on what I can do, he has been there with open arms and still continues to do so. Music, painting, gardening (in the shade), video games, tv shows help me to stay positive. It's like I get to be in a relaxing state or an alternate reality just for a few hours. And that helps.
I will get there. I will be strong again.
Q: What is your advice to other people who may have recently discovered that they have Lupus? / What are some things that you’ve had to learn on your own that you wouldn’t mind telling others?
A: There is a lot of advice to give in a lot of places such as what products helps with your skin, what foods can trigger flares, advice on certain medicines etc. So I'm going to keep it simple and number one most important thing is to learn to love yourself. It took me about a year to learn how to do that. Love yourself before you think you need someone to get through it with. Yes, having a partner or friend go through it with you helps, but loving yourself is the most important thing you can do at this point.
Also, as much as you want to freckle or tan it is not worth it! Even 5 minutes in the sun can send your body into hell. If you are so set on being tan go the safe route and get a fake tan.
Things I had to learn on my own: how to work around the pain and when to stop over exerting yourself. If you slightly start to feel bad just stop right there and immediately take action. As in rest and vitamins, don't think you can do extra because I promise you that you can't and you will only make things worse.
I had to learn that only true friends will lay around the house with you when you're not well. I had to learn that drinking alcohol made my body worse and I highly suggest to not drink. The hardest thing I learned on my own is that people don't understand Lupus, and so there is no point in telling them you feel bad and it's best to put on a fake smile and get through your day. That sucks, but people honestly don't care about Lupus unless you're on you're deathbed from it.
Q: What is it like trying to find a job and working a job? / What is your work schedule like?
A: I just quit mine (May 7th), due to my health and other issues. Finding a job is easy, but finding one that will work with you and your illness is nearly impossible. So you resort to whatever you can get. I worked at Applebee's and it was the worst experience I have ever had in my life. They didn't care at all about any of my health situations and that was frustrating. They went against the Americans with Disabilities Act time after time and couldn't care less. My doctor told me I am not allowed to stand for more than three hours a day, I can't lift heavy items and I can't be under extreme uv lights ( black lights / neon signs ) and of course the sun. At Applebee's, I worked my ass off. Let's just say that I wasn't able to follow any of my doctors rules due to my manager's lack of care. So finding a job / career is so hard to do. It feels impossible because you want to do the most, you want to have a good solid income, you want to feel successful, but Lupus ruins that. So now I'm on the search for something I can handle, be happy doing, and to hopefully have management who actually give a fuck about my illness.
Q: I love your planting pots that you have been making on Snapchat! Are you going to be selling them and maybe starting your own business or are they just for fun?
A: Thank you! I love painting them! Right now it's for fun and it's very relaxing, but I have been thinking about selling them too. I also refinish furniture for fun and I love changing things into the best state they can be. I think that I subconsciously do it because I can't make myself as I want anymore, but I can make other things that way.
Q: I noticed that Logan not only helps you, but he also lets you dye his hair! So fucking awesome! Do you mind sending us some images of the work you have done dying colorful hair?
A: Yes definitely!