abpve my bedside table I have a sign that my sister Stephanie and me found on sale a few days after halloween. at that time stephanie and my;f were frighting my diseases and Truly stephie was fighting harder then me. I was scared and worried. Stephie never stopped fighting. and i’m forever grateful for that.
But bacl to the sign i rant and go into the trail with lots of stephies. Sorry focus I;m not always this bad at thinking hhahaah
‘living oue own Nightmare right here’ the sign now is above my hope chest/bedside table. I live in a nightmare of death, and never ending treatments and meds and tubes, but this [ast year after coming out of UVA a hospital who did horrible things to me. That sign ;iving my own nightmare right here was very much true the biggest fear had happened. i was crushed.
Myself and my parents moved together to beaufort a small town on the coast.
I look back to last year and I feel lke I can’t even believe that was me being so hopeless so scare and worried today I worry but my sisters even though we didn’t live together frougt for me my famil, my aunts uncles cousins all made me believe I could live.
My nightmare is still happening pains meds tubes drugs surgery shots and death are close all the time but since I knew I couldn’t get rid of it I started living with it. I am trying to make my nightmare a daydream a small happy moment of life.
I could never give up because I;m not the only fighting for me. instead of fighting with my family and friends and doctors I know am fighting with not agenst. I’m living my own nightmare and thats ok =.
Shayweasel out fighting peacefully and lovingly
As long as I’ve been a human I’ve had a relationship with God. I have spent many hours crying out to go through out my life. I have seen people on their death bed crying out to God. I’ve seen a still born baby in the arms of a mother who weeps to God.
But the thing I’ve seen less of is someone kneeling before God before they needed something. They didn’t drop to there knees and say how much they love their father daily. Not because something horrible has happened but the reason you pray more in the bad times is that when everything is going easily for you… Satan isn’t going to attack you if your not upsetting him going against his ways.
I’ve seen it through I’ve seen people kneel on there knees praying daily. My family is one of them.
Now you might go but bad people have stuff happen to them too. But sometimes it’s not Satan attacking them or that God hates them.
God gave us the Bible theses commandments to help us not hurt us. This is the safety protocol of God.
People who know nothing of the Lord and they have something bad happen or something of that matter it’s because when you don’t follow the rules you get hurt.
Over all sin is the reason for all the evil in the world. The cure for evil is the God. And you know when you get saved or ask God in your heart you might think everything is going to get easier but honestly it’s gonna get hard because sinning is easy and Satan doesn’t want you to follow God.
Back to my first point is when you only pray when bad things happen you miss out on getting to know God.
If that one person you have who only calls you when they “need” money a place to live then sometimes you don’t want to answer the call…. and God He always answers..
Shayweasel being deep out….
A will of power is sorta the way you have to live, you have to find a way to make the best of the stupidest thing the FDA has no treatment for me. But there are over 7000 rare diseases and so like guess what we are rarely finding cures or treatments for these diseases, its sorta like you go so long for looking for what is wrong and then to find out what is wrong has no treatment, no cure, and your parents your friends they have watch as their friend, their sister, their daughter they have to watch as the diseases that take these humans away because no one knows what to do.
I’m seeking drugs but not ones from the strechy gas station.
I am seeking help. But only problem is that sometimes the dr gives you this medicine and then you go to get the medicine filled and insurance says they won’t pay. So what are we suppose to do? How is this going to be ok. And sometimes this is the reason I end up in the ER or different doctors offinces trying to be able to find some to help me be able to live a full long life.
I’m seeking drugs that would help with all diseases. All rare and common. I want my friends, family, everyone really so they don’t have to be in so much pain t have to die with doctors who don’t even know of these diseases . So I’m a drug seeker till the day I die of a disease without treatment for my diseases.
1. I didn’t find any drugs in your room do you know where they are?
2. We don’t have ice cream in the house so I’m going to the store now.
3. She has only had five seizures today so that’s good.
4. Do you have any needles?
5. You cleaned the kitchen? I told you not too.
6. We are going out be in the same place when we get back.
7. Oh no the dog is allowed in the ICU it’s a service dog.
8. Do you have (random disease here) I can’t keep track of them.
9. Don’t take a shower by yourself.
10. How many epipens did you use? Only 4 right? That’s a pretty good week.
11. We busy on fridays we go to the hospital.
12. I can’t seem to keep your wheelchairs seat belt from getting tangled in your wheels.
13. Yea she’s fine she’s just having a seizure.
13. Your drugs are in my room
14. Eat something that has the most sugar in it.
15. (Something falls and makes loud nose everyone in the yells “ARE YOU OK SHAY”
My parents met because my moms best friends who we. Call her aunt faith! Faith had told Sherri (my mom) that Steve (my papa) was a great listener. But on my parents first date my papa talked the whole time!
Which is adorably funny. There went to the same Bible college. My mom felt God telling her she needed to marry a pastor.
Which she do for sure! My parents have been through a lot. Being a pastor being the homeschool teacher. They believed in us children. They made my life better for me. Easier for each of us children.
The scary times happened a lot the ones that shake your core.
My parents didn’t buy a new car we had used cars. They did this because they wanted to make things easier to do Gods work. And they never wanted the car payment to hold us back from doing things. We got to learn what is important and what’s not. We learned to by what we needed not always what you want.
Our parents loved. We went to Christian camps we did VBS We all played sports we got
To learn in such a way you both of you have been wonderful!! You are in more wonderful now!
You showed us the art of being loved. Having a wonderful kind mind.
Mom papa you didn’t just have a wedding and went about life. But you guys worked harder and harder. You have built our family!
Lots of heart breaks but way more love kindness.
Through the grace of God you did everything. I love you both
The top left photo is taken 4 hours before all of the others… when you think allergies some people thing of swelling running nose itchy eyes and skin. Which is true…
Anaphylaxis is scary… sometimes fast sometimes easy and all confusing…
This is a peek into this horrid disease.