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…
As the past few years have been horribly hard but yet amazingly beautiful! My wonderful mom and papa both have been willingly to be here. They have given things up. They have become my caretakers. A role that might
Seem small to some but to me it is what I need. Everyday my parents have to deal with very talkative not around people much shay which I’ll admit can be annoying and hard. My mom has dealt with my emotions everyday. Tells me positive things and keeps moving forward. My mom in the past few years has had at different times take care of me and my papa. My papa had open heart surgery in July of 2015 I had my first coma during July 2015 did the stress from being in a coma Make his heart attack? Most likely because if you were insanely calm while your child was in a coma i think it would be worrisome. But with grace tears and lots of fighting for me and with me. As we all tried to fight off death. We came closer. My parents have had every reason to be horrified for my life. I have watched and felt the guilt of being in and out of the hospital. Being sick. Being someone who wanted to take care of my parents when they got older. But instead they had to take care of me. My papa is strong and brave and has looked up disease after disease. Medicine after medicine. Medical history.. it’s not easy believe me. I am amazed by the love and kindness of my parents
My mom is so amazing. She is one of the most Godly women you will ever be lucky enough to know. Both my parents are wise humble and loving. I’m insanely blessed to have them and to love them. I love them more then I could say
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.
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
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.
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.
the past few years have changed my body in so many ways…. body image is an issue for most people but people with chronic diseases or someone who has been pregnant you know how much things can change.
I don’t have control over my body whatsoever. So if I lose or gain weight. If I get new scars, new things planted in my arm and chest. Having feeding tubes stick out of your nose and stomach.
Being sick is hard on your body. Body image is hard for each and every person on the plant.
Sometimes I’m more amazed that my body has endured all it has and still is trying to keep going.
I’m grateful my body is alive. But it’s hard to stay alive.
When I was depressed during my “dark” years which was right after I had been raped and a friend who was very controlling abused me badly. I wanted to hurt myself. I didn’t want to live my life like this because it felt to hard. But through the grace of God, my family , friends and the hard work I put in I was able to come through that depression and be ok.
My body is hard working scar filled from stretch marks, surgeries, central lines, feeding tubes, test, iv blows, extra skin and things from being sick and under or over weight.
I have been on high dose steroids that made my cheeks real big. I have been malnutrited enough that my hair has thinned my skin is pale my nails don’t grow good. My strokes have made my smile look different then it use too.
My body is mine And mine a lone but it has been through so much that I can’t help but love it.
I wish so much I could truly live inside a non failing body but that isn’t even a choice for me ever.
My dark rings around my eyes and my red skin in some places. The swelling from anaphylaxis and from being so sick.
So even through my body has changed so much my soul never will. I am not my body I am more then my body. I’m more then my diseases.
I am kind. I am beautiful. I am funny. I am silly. I am happy. I am loved. I am joyful. I am peaceful. I am human. I am who I am because of how I reacted to the things that have happened to me.
I will fight. I will scream. I will be ok. I will stay alive someway or other.
So next time you look in the mirror and see something you don’t like remember that your body is keeping you alive. Even if you have to take meds and have feeding tubes and central lines or are hooked up to oxygen remember how much you as a beautiful soul have done. Beautiful.
You are beautiful. Your body is yours and yours only even if all your organs aren’t your own. Even if the blood running through you is t your own. Let the way you see the way you feel. The way you believe in happiness.
Find happiness. Choose joy. And love your body. No body shaming. No giving up. No. You make the world better.
So as I look in the mirror and see all that has changed here is what I want you to know. I’m strong. I’m hopeful. I’m beautiful. I’m happy.
The mirror has nothing on your soul…
ShayWeasel is going to go put on bright colored tights and a tank top with a hot pink bra. I am more comfortable in my skin now then I ever have been. My failing body is the best failing body I got..
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.
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..
Shayweasel got some energy… out!!