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.

friendversary to Macy! 

I didn’t get to post about this on Janury 3rd so I’m posting today!! A year ago I found a photo of some of my favorite baby food at the time pumpkin and apple baby food because what else would it be?! 💁🏼 one comment on a photo and a DM on Instagram lead me to the giggly and randomness that is one of my weird soul mates Macy!! And Addie!! My friendship with Macy is deep and the bond we carry is strong! Two am FaceTime, Skype calls, tears over everything from the lost to a treatment not working, to Drs treating you horridly to the joy of a diagnoses. To the sadness of more disappointed and more diagnoses and more we don’t knows and more we don’t have treatment to we don’t know what’s wrong. But to finding postivity in the darkness and being grateful for the little things. Macy hasn’t just been one of the most Amazing people I’ve ever known but she has become one of my best friend and strongest people I know. We are fighting illnesses not seen by the naked eye we are fighting diseases, we are fighting our bodies. We don’t get days off we don’t get days to relax. But we fight through we never give up and we never let an illness win. Macy you are stronger then you Even could understand. You have a beautifully fantastic soul and I can’t wait to see were this friendship takes us!! (Also Kyle is pretty fantastic for always being. There and for fighting for Macy! Addie you rule!! And we all know that Rory and Addie FaceTime more then you and me.. 😍😂💁🏼💁🏼🙈 )
  Macy you and me got this!!! Let us fight! 💪🏽💪🏽💪🏽😘 love you!! Happy one year friendversary and happy one year anniversary to being married to your wonderful husband!! 🌻🌻🌾

This is friendship when you are chronically ill. Online, through our cell phones, laptops, iPads, kindle fires, we are strong yet our bodies our week. 

  She was the first person I texted when I woke up from my stuff back in may I texted her photos of epipens and of my underwear.. Best friends doesn’t even cut it in my mind. Macy you rule we got this fight together we are stronger!! I love you!!  

 
Shannon DeRose. 

Why Having Friends With Illnesses Is Helpful To Me

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 The other day I told someone about my friends, this person knows me sorta well but not like super well the person was confused to why half the friends I talked about had chronic incurable diseases, She asked very kindly “Why do you have friends who are ill?”  And I tried to give a good answer but I didn’t do so well..

  So here is my answer…

 When you are in school you make friends who like some of the same things you like. When you are a working adult you make friends with people who like the same stuff you like. If you like going to clubs or going to see people perform you make friends with people who like the same. Its a human thing. You need something in common to keep being friends and to talk. When you are diagnosed or just become ill, you suddenly can’t relate to a lot of your friends or to anyone. But when you make a friend who also is ill you can relate, Oh you vomit four times a day? Oh have you ever done blank? Its a weird thing but you can talk about stuff that others would see as not socially acceptable.

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  My friends and myself talk about vomiting and getting stuff in a feeding tube, we talk about pooping and talking medicine and ports and picc lines and we talk about pain and walkers wheelchairs getting tired, we get it. And it’s because we understand it. I was in the hospital and I was FaceTiming with my friend Macy and she wasn’t weirded out when I showed her my picc line and when I vomit while we are talking.

   We need people that also have chronic illnesses even if we don’t get to see them a lot in person it helps knowing you aren’t alone. My friends and myself some of us have none of the same diseases and other friends we have one or two of the same diseases, but we all can understand each other on some level, sometimes just someone being able to understand the tired feeling is so helpful, when you are so tired but can’t sleep when pain sets in. it’s nice to know you aren’t alone.

   

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  Yea we talk about random things, I had a long text convo with my friend today and we talked about nothing but vomit.. it was on going for about an hour and it wasn’t like we were being gross we were just talking about our day. Life has a chronically ill person isn’t just watching netflix, it’s normally for me anyway watching netflix with a heating pad and vomit bucket.

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  When you have people who make you feel like it is okay to be well you. Is a very happy fact. So I guess I am trying to say the reason I have friends with chronic incurable diseases is because I need friends who can relate to me on some level. I need people to tell me “Are you napping?” “Did you take you’re walker?” I need people to make me feel like what I am living isn’t boring old shitting life but it’s a good life nonetheless. And my friends make me feel that way. They make me feel like we can press on. That every day is weird and random and pain is a part of every day but we can get through it. I think that when diseases make you feel horrid you know that life with this disease can be ever so changing.. Life has been fantastically amazing even in comas seizures and other things it doesn’t make it less just different..

  So yea…..

Shayweasing it…