#TheLupusGrindNeverStops is a very important movement, not only to me but every Lupie in the world. Lupus is an invisible illness that can cause so much damage, not only to the Lupie but also family and friends. It’s an illness that I wouldn’t wish on my worst enemy. You never know when you will get sick. You never know what symptoms you will have. You never know how severe a flare can be.
For me, I think the worst part of this illness is that you can look “normal” but on the inside you feel like your body is falling apart. It feels like your body is betraying you and there is nothing you can do about it. The fear of catching something as simple as a cold is real. What takes the average person a couple of days to get over, can have a Lupie down for at least two weeks. Catching the flu or pneumonia can be deadly and the experience of extreme fatigue can be overwhelming.
If you know someone with Lupus, be sympathetic. Be that ear that they need. Educate yourself.
My mission with #TheLupusGrindNeverStops campaign is to help raise awareness of Lupus, increase awareness to improve early diagnosis and present its impact on people living with Lupus. By increasing awareness, we can help de-stigmatize Lupus, enhance empathy for people living with this chronic illness and strengthen the Lupus community by showing those living with Lupus that they are not alone.
The campaign is mostly targeted towards young minority women, who are most impacted by Lupus. By raising awareness, diagnosis and treatment can be sought for those who are at an increased risk of being diagnosed and those who have symptoms. The campaign, as of right now, includes blog entries and social media activities.
Tonight has not been one of the best nights. I feel like I have so many decisions to make and no direction but that’s for another post at another time. Right now, my body and my health is my concern.
In all honesty, I find it a struggle to get out of the bed every morning. I wake up and lay in bed hoping that I can fall back to sleep but rarely does it happen. My body aches and it feels like every muscle in my body is moving or cramping. My mind is racing…thinking about all of the things that need to be done. My body has other plans. I lay there for an hour….drifting in and out. By the time I get up, I have forgotten about all the things that need to be done. Brain fog. I wonder around the house for 30 mins and then I start trying to get my mind right.
What needs to be done? Is my son okay? Did I feed Tyler? Sheba? What medicine do I need to take? Did I take my meds yesterday? Where is my pain medicine? Why am I hurting right there? Where did that bruise come from? Why can’t I remember?
I suffer from an ailment named Systemic Lupus Erythematosus. People who don’t know or don’t understand have a hard time believing but this thing is a life-changer! At age 15, finding out that this was my fate was an eye opener. Growing up I always looked different because of my eyes, hair texture and overall look. Lupus was one more way for me to different from everyone but I just wanted to fit in….be normal. But that wasn’t in the cards for me. My ninth grade year in high school was a disaster. I was sick just about all year but once I made it out….I learned how to control my stress.
Through the years, God has blessed me with my son-what a blessing! He has blessed me with life, breath and my health. Until a couple of years ago, I virtually had no health problems except for the occasional flare from stress but I conquered even that! Mastered my stress levels and lived life!
I have come to the conclusion that I want to share my story. I want to share my neighbors story who suffer from this ailment as well. I want to be a part of gaining awareness for this ailment that affects so many but understood by very few. I believe that this is a part of my purpose. I believe that by sharing my story, I will save someone’s life. Maybe even make people pay attention! We need a cure!
I would like to aid in gaining more awareness, maybe assist in adding a South Carolina chapter of the Lupus Foundation of America, write a book and just do whatever I can to further my cause. I can always use help, guidance and mentorship because I am always striving for growth. If you would like to help in any way, please leave a comment or email me at firstname.lastname@example.org.