Tuesday, October 14, 2014

Managing the emotions of Lupus


I remember the day I was diagnosed with Lupus.  It was January 3rd 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, when 2013 started out just 3 days in with 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 in 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 doctor that is also a friend, 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...and 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, almost 2 years ago, 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 times over the last few years when 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 & workout...after being told I "may never be able to run, but at least you can walk".  I eat healthy and take supplements, because I know that God has given me only one body and His intention was for me to have this body, lupus and all, so I need to be thankful for it and honor it.  

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.  Here's a helpful chart with symptoms, but please ask your doctor if you think you might have Lupus.
Please reach out with questions or feel free to comment below and share your story! 


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