Feeding tube awareness

Feeding tube awareness is important. O have a feeding tube. I’ve had them on and off for the past few years.

I have had NJ tubes which go into your nose and to your small intestines and right now I have PEGJ tube which goes into my small intestines.

Every day I wake up and make my feeding tube forumla the kind I use is called real food blends. I put it in a blender with water. I then strain it into a bowl then wash the strainer off and the blender then I strain it into the blender again then I wash the strainer off and bowl off and then strain it back into the bowl and then wash the blender off and strainer and strain it into the blender I then get my feeding tube bags that I use and put the mixed strained real food blends into the bag. I close the bag turn the bag upside down and put my fingers on the blue longer part of the bag and squeeze lightly to get the air out of the bag and then prime the line that will connected to my feeding tube the one that goes into my PEGJ that hangs outside my stomach.

It takes lots of work but I would be doing this even if I was eating. I do this sometimes 3 times a day depending on what my body handles a day.

I’m thankful for this that saves my life

Shayweasel out

To The People Who Say I Talk About My Illnesses To Much

On a couple different occasions people have told me I talk about my illnesses too much..

 

We need to go back, to a moment….

When was the first time you heard about autism? How did you learn about peanut allergies? What was the first time you knew what Crohn’s disease was? What about cancer?? ….. Who told you these things? And if you say you read it on the Internet..

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Then someone had to talk about it for you to read it.. Someone had to write the words you wrote. Someone had to discuss what was going on inside their own body or someone close to them..

 

These things NEED to be talked about, how many life have been saved since people started talking about breast cancer? How many earlier screens have saved a life? How many people have known the symptoms of meningitis and knew when to go get help? How do you know to go to the doctor when you have the flu? Because you knew what to watch for…

 

Someone has to talk about these things for you to understand them…
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People don’t know normally what is Gastroparesis is or what it’s like having 9 food allergies let alone 40 food allergies.. And the only way we can find a cure the only way we can get better is… By talking about it..

 

And on the other hand.. When I do everything throughout the day I must think.. Is this food safe? Did I touch something? Did I get up too fast? Am I having an allergic reaction? Is my headache my normal headache or something more?

 

My body is failing me, I can’t go throughout a day without thinking about it.. I am not talking about my illnesses because I’m bored or have nothing else going on but because no matter what I do no matter how I handle my life. My illnesses control part of it. I must think about it because if I don’t.. I could kill myself. If I touched a walnut if I wasn’t paying attention to what I was eating, if I didn’t watch what I was doing. I could hurt even kill myself…

 

My illnesses don’t take breaks, my illnesses don’t take days off, my illnesses don’t get magically better with medicine.. My illnesses without meaning to have to control part of what I do because I am living in a body that is broken but no way to fix it…

So yes I talk about my illnesses a lot yes this is part of my life on a daily basis if I didn’t talk about it you wouldn’t know what it was or what I was going through. You wouldn’t understand how easily a peanut can kill me or corn, a tree nut, or even some food that I didn’t crew well… Something could kill me easily and by talking about it it could save me…

There is this part of me that wants you to know that the main reason I talk about it, is because if we don’t talk about it because if we say nothing then nothing will change.. We won’t get treatment… we won’t get a cure.. We won’t get better life because no one will be doing research about what’s going on inside our bodies.

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We not only need awareness we need understanding… We need help, because we need people to understand give us as much awareness as possible because then maybe we could save another life from pain and from being without a diagnoses and without help… Because people with chronic illnesses, rare diseases can go years in horrid pain without a diagnosis without any help, and without understanding…

 

So thankfully we have people who talk about rare diseases, chronic illnesses because maybe one day when I say I have EoE people will have as much understanding as they do for when someone says they have cancer..

I didn’t choose to get a rare disease I just got a few… So if I don’t talk about my rare disease no one will know..

 

So yes my diseases are sometimes the highlight of my life but it’s because it affects my life in every way…

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Thanks for reading about my talking about my illnesses, diseases can be invisible, which is why they are called invisible illnesses, we must first understand that awareness is the key..

 

If you want to talk about this more with me, leave a comment or email me, we can discuss the horridness of chronic and rare diseases,

 

Shayweasel out…

Best Chocolate Chip Cookies (Gluten-Free, Corn-Free, Nut-Free)

 

Now if I’m being honest, I’d tell you that I love eating cookies, and I do it so much that I’m pretty sure I’ve found ways to make my oatmeal taste like cookies.

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And if you give me a cake I’d be like I’m good, because its not cookies, so since I love cookies so much. When I was told that I was allergic to a lot foods, I had to go out and find ways to make different things.

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Cookies being one of them. Enjoy Life chocolate chip cookies have been a lifesaver because everyone knows I want chocolate chip cookies. So I use those a lot and oatmeal. I mean man am I blessed to not be allergic to oatmeal, I do love me some oatmeal

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But back to cookies so a few days ago I was wanting some chocolate chip cookies and I wanted them bad, so I pulled together everything I had to make them, and I, being me, was trying to find a recipe to work with and I couldn’t find a good one till, well, today. I found this recipe and I had to change it a tad, but it works and the cookies I made are so amazing.

So here is how you start off

Ingredients

eggs – 1 full egg and 1 egg yolk.

2 ½  cups flour (I used one and ¼  cup oatmeal flour and one and ¼  cup tapioca flour)

½ teaspoon baking soda

1 cup Brown Sugar packed

½ teaspoon salt

1 teaspoon vanilla extract

½ cup raw sugar (you can use white sugar I used raw)

¾ cup butter (I used dairy butter but any butter works.)

2 cups chocolate chips (I use enjoy life chocolate chips)

 

  1. I preheat the oven to 325 degrees F (165 degrees C) line cookie sheet with butter or cooking spray or parchment paper, I only had butter so I used butter and they worked good. (I basically just put butter all over the cookie sheet)
  2. Sift together flours, baking soda, and salt, set to the side.
  3. In a bigish bowl I used my kitchen aid that makes everything easier. Butter that has been at room temperature for a while (mine was about two hours) and sugars together, I let it blend together for about 5 minutes to get that creaminess I feel it works better.
  4. Add vanilla, egg and egg yolk and beat until well blended, (I let my eggs sit at room temperature for a little while you don’t have to do this step but I think it helps.)
  5. After the eggs and vanilla are really well mixed together add the flour, baking soda and salt, Now be careful not to add it to fast. I add it slowly and then just till its blended then add the chocolate chips and let sit at room temperature for about ten minutes if its still kind of not right looking let it sit longer.
  6. Put on pan anyway you please and then bake for 10-16 minutes my cookies happen to be big so they cooked for 16 minutes.
  7. Let cool and enjoy!

So that my best chocolate chip cookie recipe!! I hope you all have a good Shay-De foodie Friday!

Come back next Friday for more food recipes and come back Sunday for randomness and come back Wednesdays for Wesday the day where I rant about whatever I please!!

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