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What Sharing Lupus Means

The Butterfly is one of the symbols for lupus

The Butterfly is one of the symbols for lupus

We are talking about the fact that I am putting you all in my business, that's the first thing that sharing lupus means to me. The next thing and the biggest reason I share is because many have heard of lupus but what they really know about it can fit in a thimble. Sadly, that too includes many healthcare professionals. 

This disease has many layers, many that get overlooked, dismissed and misdiagnosed. People who are battling this disease suffer as the people around them decide that based on their looks, they can't possibly be sick. Look at the picture above, do I look unhealthy? Yet, in this photo, I've had multiple hospital visits due to a multitude of various symptoms which will be shared as you get to know me. In this picture I'm lighter by approximately 50lbs due to this illness and taking my just barely under 5'8" frame down to 116lbs isn't the worst this thing has done.

I am not here to give you woe is me, I am here sharing my personal story because it may help or change someone else's story. If it means you or a loved one gets diagnosed early, that you finally get diagnosed because you've been on the healthcare merry go round then sharing my diagnosis with you is worth it.

As you read these words, as you learn from me, please don't say "she knows, she's had time to deal and makes it sound ok". I am writing this post on 4/16/2016, my diagnosis came 2/26/2016 so I'm just at the 2 month mark of having my life tossed around. I'm just at the 2 month mark of going from a 6 figure income down to waiting to see if I will be approved for long term disability. I'm 2 months into the unpredictable moments that this disease brings, I'm 2 months into having to put all that I've worked for into storage to go live with a loved one because I can hardly cross a room without needing a break.  I am going to post below another picture because the grim picture I share is not my outlook but I want you to know that lupus is serious but I take on most of my fights with a smile. I am here to encourage, educate and elevate you if you are just starting out on this path of learning you have a disease that has the potential to put your life on its head. I want you to know you are not alone, your life is not the only one that is changing and we will get through this. 

Look! Another butterfly :-)

Look! Another butterfly :-)

We are going to make it, dig in and decide how you're going to fight. I won't allow myself long term pity parties, negativity won't help so lets make positive strides. Share with me your fight, I'm sharing mine all over the internet. I want people to know what we are dealing with so they too can help us fight the good fight.