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Managing the Emotions of Lupus

Posted on October 27, 2016

by Nikki

I remember the day I was diagnosed with Lupus. It was January 3, 2013. A new year had just started. I love a new year … just the newness (is that a word?) of it all. I was the geeky kid in school who LOVED getting a new notebook for the new school year. I’ve just always loved being able to put the past year behind me and start with a fresh outlook. So needless to say, just three days into 2013 when I got the diagnosis of lupus, I was devastated. I felt like my whole life was falling apart around me. Would I live or die? Would treatment be scary and painful? Would I lose my hair? What would happen to me? Would I ever have children? Would a man love me, with something like lupus? Some of these sound like irrational and stupid questions for the non-lupus patient … But if you’ve been diagnosed, then you know that these thoughts come rushing into your head.

It’s easy to get down and depressed.

Like any normal person in 2013, the first thing I did was rush to the internet … Where I was met with horror story after horror story. I got more upset, thinking “what’s going to happen to me?!” After talking to my doctor, and a friend who is also a doctor, I realized that I was not very likely to die from lupus, and that if I kept a positive attitude and took care of my body, then I could really manage this disease.

I prayed a lot about it, and just knew in my heart that attitude would be everything in managing lupus. I truly believe you have to manage the emotions of lupus, in order to manage the disease of lupus!

I felt compelled to start a blog, to share my story, but also to give other newly diagnosed women hope. I was sad that there were only negative lupus stories online. Stories of women who were so down and discouraged by the disease. I do understand why; it’s very hard! But I wanted to be different. Since then, I’ve been contacted by so many amazing women who were in my shoes. Just being able to share my testimony for how positive thoughts and also taking care of my body has helped has been amazing. I’ve made great friendships, and if I’ve been able to help even one woman through it, then it’s all worth it.

I think back to 2013, to where I was emotionally at the point of my diagnosis compared to where I am now. I can tell you that I am in such a better place! Each day, I start off with some meditation and focusing my energy on what I want to accomplish for the day. Sounds cheesy, but it helps to have a plan. When my joints ache and I can’t walk too well, having a quiet moment where I can just reflect helps my whole body relax. Throughout the day, I try to remind myself, “the days are long, but the years are short,” so that I focus on ALL the happiness in my life, not the day-to-day aches and pains.

Yes, I’ve had hard times over the last few years. I’ve lost a lot of my hair, or the lupus gets bad and I can’t walk very well. I’ve cried a lot of tears. But I’ve also had so much joy. I was able to have my son, after being told I would likely never have children. I run and work out - after being told I “may never be able to run, but at least you can walk.

If you’re newly diagnosed with lupus, take a deep breath. It will be okay.

You will be scared at times, and that’s okay. It’ll be hard physically at times. Taking new medicines that have some side effects can also be scary and hard. You’ll take it day by day and you’ll not only make it through, but you’ll find a strength inside yourself that you never knew you had.
And if you think you may have symptoms of lupus, please ask your doctor to test you. I went through over 10 years of symptoms before I had the correct diagnosis. Lupus can present itself like many common illnesses, and doctors don’t always know to test you. For example, I don’t have skin issues from lupus like many people do. I’ve never had a butterfly rash on my face. I “look perfectly healthy” from the outside. My lupus presents itself primarily in my joints, which makes things like opening a can or walking across the room much more difficult than normal. Other people have lupus that affects their organs, or that affects their skin.

This post was written by Nikki Peters and posted here with permission. Nikki is 33 years old, a mom of a sweet baby boy, and a girlfriend to a wonderful man. She began blogging about lupus after her diagnosis when she couldn’t find encouraging information about living with the disease. She blogs at livinglifewithlupus.com.

A MyLupusTeam Member said:

I am so sorry you aren’t receiving proper care and feeling invisible.
Sending you hugs

posted about 6 hours ago

hug

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