Dear Stranger Things

I wrote a blog post last year about the flashing lights that happen so much in the 1 season.

Thank you Stranger Things! I noticed as I watched how little flashing lights and I love that.

I didn’t have to cover my eyes so much. I sat and watched them all and could rewatch this season over and over.

I’m so grateful for less flashing lights it means a lot to me. I watch TV I’m the person who can tell you everything about the walking dead..

Thank you for making this awesome show!! And keep up with the less flashing lights!

Shayweasel is most likely gonna go watch Stranger Things

Kneel before needing

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….

What it looks like 

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1; the video above shows my right shoulder popping in and out of place. Which is caused by EDS Ehlers–Danlos syndrome a collagen disease that cause none or lack of collagen it is a genetic or mutated gene that I was born with. 


2; this is my left foot turning in a way it shouldn’t be able to do. This is also caused by EDS but it was made worse after a stroke  that I had either when I was seizure for 7 1/2 hours or when I was in my first coma, which I had to be put it because of seizing for 7 1/2 hours. 


4; as my hereditary blood disorder which causes my red blood cells to die to fast which makes me have low blood counts. 


5; anaphylaxis, or anaphylactic shock is something that I have to deal with daily and and that requires me to be on IV Benadryl every and every single other anti-histamine out there I am allergic to so many different foods  smells and so many other things
Part two will be published soon.

Happy anniversary!! You’ve been married 32 years

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 

It happens fast 

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. 

mast cell activation syndrome 

     

Imagine slowly as you age becoming allergic to close to all things that grow outside. Imagine me the tree hugger, Gardner, green thumb, beautiful outdoor air lover who was holding a bottle of Benadryl in my backpack to make sure I had it on hand during spring.  As the seasons changed and the years went by I become allergic to more and more adding to an already long list of animals, grass, trees, dust, strong smells, and then at 17 years old I started gaining more and more food allergies. From corn to soy to wheat to cherries. They kept growing. Everytime I went to the dr I had more.  I had two epipens with me at All times. I had my Benadryl right next to it. I read everything I ate. If it was something I didn’t trust I didn’t eat. One summer I was doing mission work and lost a lot of weight because as a vegan allergic to over 30 foods I ate bananas rice and black beans mainly for the whole summer. 
   This kept getting worse. I was allergy attack away from using an epipen at all times. 

   In 2014 a doctor spoke the words mast cell activation syndrome… I wasn’t officially diagnosed till a while later. 

   I am not fearful of what I’m allergic to but I do fear of what I’m gonna become allergic to. 

  My mast cells are having way to much fun. 

   But one thing my mast cells don’t seem to understand is that I’m way stronger then them… 
  


I will wear a mask with a filters on it whenever I go somewhere to

Keep my allergens from upsetting my mast cells and sending me into anaphylaxis. I know had a picc line in my arm that will keep the iv Benadryl I take six times a day at least flowing into my body. I keep 6 epipens on me. My mom has benadryl, meds and epipens in her purse. She has flushed and small green caps I keep at the end of my line. My papa has epipens in his backpack he has flushes extra tape Meds for seizures flushes for my line and those little green caps. 
  Stephie and Nick im sure find these types of things around there house. Sorry about that
  My body is slowly becoming allergic to everything with no FDA treatment. Who knows what’s gonna happen but I will not fear. Because this rare ShayWeasel living inside a rare body isn’t fearful of the unknown because everything I’ve ever known is unknown. 
Soo every time I go from vampire pale to insanely red know that my mast cells are doing what they do… making anaphylaxis

Be aware of the rare 

ShayWeasel 

How Being Asked If They Could Pray For Healing Changed My Mind

  The other day I was at Kmart for the main purpose of peeing… 

    Now I had just left a horrible doctors appointment that made me feel like I was doing everything wrong. 

   My papa was checking out when I sat down near the exit of the store. I was sitting on my roll aid walker and a lady walked over to me and said ever so kindly “can I ask what’s wrong with you!?” 

  I explain that I had a few rare and life-threatening diseases and that I was basically allergic to everything. 

   She felt bad she said “oh I’m so sorry you seem so lovely I’m so sorry you have to deal with this. Can I pray for you?” I nodded and said “yes praying would be ok” 

   She smiled and said “I’ll be praying for healing for your little body” 

  I smiled and without thinking said “can you pray for understanding, love and acceptince instead?” The lady’s smile grew very big and she said “young lady I can! Thank you for your kindness.” 

   I then said “what can I pray for you about?” 

 She went on to tell me her name was Nancy and she was facing some scary health problems. I told her that I would be praying. I gave her a link to my blog and then said “feel emotional. It’s ok.” She hugged me with tear filled us and said thank you. 


   I walked with my walker out of the store telling my papa what happened. 
  A few hours later it hit me really hard that healing isn’t what I’m looking for. I’m looking for better treatments for love, for understanding and acceptance. 
  I have it. I have understanding. I have acceptance. I have love. I don’t have better treatments but 3 out of 4 isn’t bad! It is ok to not dream for healing but to dream for life…
  I’m ShayWeasel I’m who I wanted to meet when I was a child. I became what I needed to survive. I don’t healing. I need understanding. And I got it. 
ShayWeasel out…  

PollyAnna Please Rise

Have you ever seen a movie named Pollyanna? Its about a girl who goes to live with her rich aunt after the girl pollyanna loses her parents who were missionaries over seas. Pollyanna believes there is good in everyday weirdness she believes you need to find the glad.

She calls it the glad game, the movie focus on how she changes the place she lives because she truly wants to be glad, and the people around her she shows how to be glad in a very little world that isn’t always so glad.

This ,movie is one of my favorite movies. I have watched it a lot. I love her. That is who i wanted to be like. So try. Everyday to be glad for the deepest darkest things I don’t want but you have to be glad.

Spolider at the end of the movie, pollyanna falls down off a high tree and she is unable to move her legs, she is paralyzed, but the town comes together as pollyanna becomes so sad that she can’t walk and she feels like this over, all the gladness is gone she feels. But the town pulls together and shows Pollyanna how being glad is always a choice, so she as she is sent off to the hospital has peopled lined up telling pollyanna she is amazing, she is joy within herself.

She doesn’t all the sudden walk. And the movie ends with a happy ending, thats not what happens. It ends happy with pollyanna being unable to walk but finding the gladness in not walking. In being yourself. In being who you truly are. Pollyanna finds the glad. She doesn’t stop believing in glad because she’s sick. She is ok with gladness being scary.

I    I am the pollyanna I need to be. I have to find gladness. Not find sad and be mad I will not stop my joy my gladness because my body is failing me. At least. At least I can be so glad that I am able to keep living with the most amazing world I have found gladness in scary times but I keep gladness all day..

So anyone want to join me shay weasel in being a pollyanna? In finding gladness? Pollyannas please rise. I have faith in God that I that you can do this. God. He is gladness.

 

I am gladly Shayweasel.

Blood donors and iron infusions! 

Today I got a full iron transfusion and I got a ferritin transfusion which is like what holds iron in your body
The iron is then released into the blood stream, where a protein called transferritin or just ferritin attaches to it and delivers the iron to the liver. Iron is stored in the liver as ferritin and released as needed to make new red blood cells in the bone marrow. 
So when my body makes the protein ferritin but my body doesn’t make enough ferritin for my body to hold iron like it should. And on top of this my eosinophils (a type of white blood cells) attack random parts of my body anything from my throat to my colon and then collect in organs like my lungs and liver.  

   My body makes red blood cells but they don’t “live” per-say as long as they should be. So they die off and my body is without the amount of red blood cells as they should. And red blood cells are the blood cells that carry oxygen and help you live. 
  As you can see from these photos this is my disease at its finest. Something you can see.. pale skin, swollen face and kinda puff. My skin seems see through on the photo on the left… the photo on the right is from after I got the transfusion. 

  Now in that one my skin is looking more alive my body isn’t as puffy. I’m not as swollen and most of all I feel slightly better. This is not a fix all for everything but it is a need for me. Blood donors save life’s everyday and they don’t even know it. My blood wasn’t as low as it has been I didn’t get blood fully this time but it’s always something that I might need. 

   So if you feel like doing something amazing this Christmas season then go and donate some blood!! You save life’s every time you donate!! 
  I know people who have to go get blood every few weeks. They wouldn’t be alive without donors. 


  I’m anemic. As has been always will be. But I got iron I got stuff to make me strong. To make me feel better! 

  

  This past year has been insane but one thing is fully and lovingly true. With my family my friends my God and lots of cute humans and dogs!!!! I made it! 

  

 Happiness is sometimes color on your skin. Sometimes it’s just what I need.. 


  Life is full of joyful things!!… 

Shayweasel got some energy… out!! 

 

Curing your idea of my disease 

I’m a spoonie who isn’t hoping for a cure I’ m just hoping for tomorrow, even if tomorrow is painful. I’ve gotten sicker since I was two weeks, my allergies aren’t getting better, my body has declared a war on me that no one knows how to handle. Doctors look me in the eye and go maybe one day we will have a cure but I can’t dwell on that. I just want treatment and understanding and maybe I wasn’t born to be the first one with the cure. I was born to bring understanding. I don’t find that a bad thing.

If I did get cured. I would have to get use to a whole new world. Would the medicine or surgery mess up my brain the one that cured me? Would I stay shay weasel? Or just be plane shannon and nothing else? Would the cure work for two months and then all the sudden stop working and I die… Sooner then they already had thought…

I’m asking as someone who is scared of all outcomes that hold on to life. Do you understand the life long hardship over living inside these bodies??

My friend Jazzy was talking to me about it. We all don’t have to have the same diseases to have one understanding. We don’t know what will happen tomorrow or if they find a cure or never find a cure. We learn to adapt to the world around us. We are stronger then we know we are.

 

Another point is does God cure some to show we can do it? Or are other not cured because we just don’t need a cure? Do I need a cure? Am I suppose to be showing people how to be alive inside a body that is killing me? Because everything doesn’t happen for a reason but everyone is here for a reason. Even if its a bad reason. We can’t stop. We just adapt.

Every spoonies has different outlooks but me and some of my best friends and me have simpler things we look at. Like me and Jazzy aren’t sure we hope for a cure we pray for understanding. I pray for the love of Christ to be shown through me. Not a cure. Maybe I’m not meant to be cured.

Now I’m not saying I wouldn’t jump at the chance to be healed fully but I wouldn’t jump I would ask questions, I would wonder what the treatment would feel like…. Because for me this has been my life and what if the treatment kills me instead of heals me?
How do you go on when you are cured? Is being cured truly being cured? Where do I draw a small scary line?
So I pray for treatment. I pray for understanding. I pray for love. I pray for you. That you will not only understand the fear of being sick but the joy of being sick. Don’t take advantage of the word cure. The cure of life isn’t living it’s enjoying living. Things will never be simple but I  find happinesss

I found it. In me.
Don’t find it in things. I found happiness at the button of a rock filled place were I was basically stoned and laughed at and I stood there and I spoke with grace. With love. I won….
I don’t need a cure I need love. But if I’m never cured…..
Find me… shayweas…