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

realizing Relief Requires Relaying

I don’t like seeing others in pain. I don’t want anyone to ever have a battle in life even through we all do. I don’t want anyone to go through anything like I have. So when life gets scary I want to hold tight to my friends and let them know I’m here.

The thing is I’m not physically close to most of my friends. I see them lose there freedom. And then every time I see God.

I lived in Seaboard a small town with lots of people over 60… a lot of them little old ladies! I loved them all!! As I lived there my papa started taking me with him on his visits to their houses or hospital or nursing home. The longer we were there the more my heart fall in love with going to visit people.

I started riding my bike and going to there house sometimes sitting on the porch talking to them. They were always so kind.

I believe in God, I beleive He knew how to make my life. You can find the lines He put in place for me to be here!

I didn’t have a lot of friends my age but I got good at being pen pals at sitting in waiting rooms with family as they waited for their loved ones. I got good at asking questions so I could keep someone talking. I got good at being around pumps, wires helping cool weird foods and being kind listening and not getting annoyed when someone would tell me the same thing ten times. I felt calm. I learned how people are people no matter what we see. Leo Boone was a man who was paralyzed from the neck down. He was always smiling.

I learned animals are amazing at making people connect sometimes. It’s not that I didn’t already know these things I just learned more about them.

When I was in the hospital even if it was for me or someone else I didn’t mind I had done this before. People always told me I’d make a great nurse I normally told them thank you. Deep down I knew I felt something I needed to be.. and medical was involved.

My friends have health problems, my family does too. I learned and owe more to how God set my life up then any thing I can imagine.

I didn’t want to relay on anyone but truthful I have too. The person I have to relay on that each of us has to relay on is God.

People sometimes act as is you are stronger when you don’t replay on others. And truly it is you are stronger when you relay on others.

You will never be able to find relief without Realizing that it Requires relating on others. Everyone needs to be able to have others relay on them and others to relay on its a balance.

Shayweasel realizing Relief Requires Relaying

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

IMG_7418

 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.

FullSizeRender_2

  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.

   

FullSizeRender_3

  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.

FullSizeRender

  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…

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..

image

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…
FullSizeRender_1

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.

image

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…

IMG_5983

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…

Chronic Illnesses Are Chronic..

FullSizeRender_1

So yesterday I felt so bad that at moments I was worried more than normal about my health. I was having a bad day, but the day before that I had four allergy attacks that led to my eyes not wanting to be used. The day before that I slept for 15 hours straight.

I have Chronic illnesses, and for some people seem to not understand that chronic which means daily, hourly, momently. It doesn’t stop. Its like having anything when you get diagnosed with a chronic illness it’s like getting a tattoo, you really can never get rid of it. There are sometimes surgeries you can do to make it go away, but they are lots of money and sometimes you end up getting scarred, good thing about tattoos is you get to choose what the tattoo is and if you want it in the first place. A chronic Illness has no choose. It shows up on its own and it’s happy to be there.

FullSizeRender_4

CHRONIC.. Means daily, it does mean I get to have some good days, but most of my good days are thanks to the medicine I took or are due to the fact that the day before I slept for 18 hours or it’s a weird random thing that happens out of no where. Most of the time when people see me I’m having a good day, because on my bad days I don’t normally get out.

IMG_5618

So even if i look good, if I act fine, I could be in horrid pain. Its not all in my imagination. I’ve heard that one a lot, that’s not it. I have problems, my diseases are slowly making me very ill and unable to do as much as I want, but I enjoy my life.

And if you see me enjoying my life it doesn’t mean I’m better. It doesn’t even mean I’m having a good health day, but I could just be having a good day. I am not healthy at all. But I’m happy.

You can be slowly dying doesn’t mean I have to see things as sad or bad. But instead I see them as good, but sometimes I feel like if I look happy to some they see it as I’m wonderful and healed but I’m not. I’m still ill. I still have a CHRONIC illness.

FullSizeRender_3

Even on good days. The Illnesses are still there. They don’t go away.

Chronic means that it’s not going to be cured anytime soon, that you’re going to be in pain. That you are going to be in and out of hospitals sometimes, it means that doctors offices and blood draws are another part of your life. It means that when you wake up you have to take time to get out of bed. It means taking a shower can make you pass out if you aren’t careful. It means food can make you sick or even kill you. It means that I’m chronically sick, I’m ill, on good days I’m still ill.

FullSizeRender_2

I feel like people don’t want to accept the fact that being ill is chronic and that I’m never going to get better without a cure and at this moment this cure isn’t real. It isn’t happening. So for the time being I’ll be living with chronic illnesses, so daily, I will be living with chronic illnesses…

This has been my randomness on Sunday…

Shayweaseling it…!!

Why weekends are hard…

I hate mondays Fridays, I know what? Shay? How can you hate the weekend they are fantastic. One let me say I haven’t always hated them. And I still hate Thursdays more than I hate Fridays but for me I hate the idea of the weekend, that you have to go out and hang out with friends or if you don’t have plans then you are just going to die alone or become a cat lady.

I mean its not a big deal. I have been a nanny and my idea of a friday night was the parets going out and me making like 100 dollars thats my idea of Friday for a long time and when I wasn’t working I would sit in my living room watching TV shows or movies or I would be on tumblr for like nine hours.

So I don’t get where this you have to be busy on the weekend sleep in and go out and party or go to church on sunday. I don’t get it. I want to do what I do on a normal day. To me the weekend ends up normally being really boring and I don’t enjoy it because everyone is saying “Oh my I’m doing blah blah..” I mean even if I had a lot of friends who wanted to do stuff the weekend wouldn’t be when I wanted to hang out it would most likely be a random day.

But I want to say since my chronic illness kicked in over drive, the weekends end up being really hard on me. I feel like I am missing out on a part of live that I never knew I needed but I don’t need it. You might be someone in school or work the weekdays and when you get a free day its like fantasticness but to me it sometimes end up making me sad because I’m like I don’t have energy to do anything and its not going to change just because its the weekend sometimes I have good days but they are normally on a weird day like Tuesday and I get to make breakfast and go to the store, but my body doesn’t know that its the weekend. It does what it wants to.

So why am I telling you all this? Because I know that people with chronic illnesses might feel the same way, so if you know someone who has a chronic illness go over and watch a movie with them and don’t try and make them talk to much or anything just let them be but be there with them. It means a lot when you get a friend who can sit in the same room on their laptop as you and not talk but will say something like did you see this?

Or when we need to rant about shit you listen. Its hard because we might seem whiny but it really is that some of us aren’t around people. Don’t talk to people, and a lot of us don’t get to see very many people at all or only talk to people online.

The weekends are hard because its not just we can’t get out its that no one wants to stay in and no one wants to hang out with you.

When you are diagnosed with a chronic illness you normally lose half your friends right off the bat and it kills small parts of you. So yes, if you want to help make weekends better then just be there and say what’s on your mind.

My name is ShayWeasel and this has been a weirdish public blog post…

#spooniestrong #weekendssuck #fuckit