Rare & Aware

Rare & Aware This Page is to help people reach my group. Rare Awareness & More as well as place orders for shirts and decals.

09/09/2024

I know I’ve been MIA for a long time but I’m here. My life has been almost impossible at times the last few years. So if anyone wants to share their journey with their Rare I’d love to read it. None of us are alone here. We just have a Rare path. 🤟🏼

05/12/2021

Just a heads up that I’ll be back at it soon making t-shirts and decals. Let me know what you want and I’ll let you know if I can make it and the price. Remember I love y’all

03/24/2020

Now that I’ve told my mama and faced my own demons with this I’m ready to share the next bump in my life’s road. I was diagnosed with COPD stage 2. Yes I used to smoke and yes I v**e but believe it or not I’ve been dealing with it all my life. I was born with it due to faulted genes. It’s rare but it happens. My dads mom died from it, he has it and guess now it’s my turn. The doctors said they are amazed that it’s not as bad as it should be. Thank you to my Heavenly Father for that. So now I really can’t be exposed to anything. Everyone that knows me already knows I have every thing except old age stacked against me and more durning this COVID-19 stuff. I meet all criteria to be most vulnerable even down to my blood type. Sad thing is my husbands job doesn’t care. They would rather have him in the store in the ground zero basically working knowing he could come home and give it to our son who is on the list as most vulnerable and his wife who should be the poster girl for most vulnerable. They don’t give a damn. They have a person who took it upon themselves to fraudulently apply for something my husband never approved or gave consent to and now have screwed us completely. He as a manager in this situation has the right to do his job from home but his boss is so incompetent she doesn’t even know that. I guess she is so busy fraudulently filling out paperwork to know what the actual rules and policies are. He could do her job with his eyes closed and hands tied behind his back. So sad that it’s supposed to be a family oriented company that cares about their employees and their families yet they can’t seem to help those that are “part of the family” who need it most. I was told by the head of the entire company if we ever needed anything to call and he gave me his number. I haven’t called him for risk of my husbands job but I have a feeling it was an empty offer anyway. So all I have at this point is My Heavenly Father to rely on. I can’t even touch my husband. Hug him or sleep in the bed with him and snuggle him at night when I’m in pain or upset. I sleep alone... when I sleep. I pray and talk to God and Jesus my savior. I can’t risk hugging my kids or kissing their face. I’m not scared to die because I know Heavenly Father isn’t ready for me yet but when he is I’m only afraid I won’t have my family by my side. I can’t even get my treatments right now and haven’t had any in months. So I wanted to share this and let you all know that yes it all needs to be taken seriously but without having God in your life and I mean really having him in your life you are giving into fear and panic and that’s going to make everything so much worse. If you can hold your loved ones and your babies do it. Pray and pray with an open heart and mind. You will find that he has not left us. He is testing us. If you turn him away and pick fear and panic you will be taught a lesson in whatever way he sees fit. Remember I love y’all 🦄💕🦓

02/04/2020

I love y’all! 🦄💕🦓

12/31/2019

Hi everyone sorry I’ve been MIA. I have has so much going on. I haven’t forgotten any of you. If you pray say a small prayer for me. I’ve managed to really mess my back up. Bad enough I can’t really move or walk. I’m always here though. Remember I love y’all 🦄💕🦓

Day 1 of infusions. 3 more to go.
12/09/2019

Day 1 of infusions. 3 more to go.

12/06/2019

Remember I love y’all!

12/04/2019

We are not promised tomorrow so speak what’s in your hearts. Tell those around you how much they mean to you and that you love them. Remember I Love Y’all 💕🦄💕

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Rome, GA

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