My life on Standby

24/11/2022

Happy Thanksgiving All! I know when you are Chronically Ill or have Chronic pain it can be hard to see all your blessings. So today more then ever I try to reflect on what I am.
I am so grateful for my wonderful for my family and friends. IN my life I have been far too trusting, lacked boundaries, and people pleased for years and had a lot of takers and users. Finally I saw the light , re found myself, set my boundaries and am still the living helpful person I have always be. I just don’t let people take advantage. Which cleared the way for me to see my true people. My Framly of you will those who may not be blood but are the family we choose and love . Who we support and are there for and they do the same for us! It’s those I I am oh so grateful for ❤️🍁💯 what are you grateful for this time of year?

15/11/2022

Amen , when I wanna give up I remember what I have to live for. When I’m exhausted and in pain I remember who’s watching. When the rubber meets the road they are my why ❤️

14/11/2022

In spring of 2021 my life took a steep turn for the worst. From January to June I slowly moved into a catatonic state. My Gastroperisis grade 4 gastric failure and malabsorption was taking hold . I was moving into a state of starvation due to my body’s inability to absorb nutrition the way a normal person does. We were scared, I was no longer myself. I was losing this battle so finall we got someone to listen and I got scheduled for a GJ tube surgery unfortunately this would not be the awnser. But we kept fighting the fight. When you are struggle be a warrior be your own warrior. Make the doctors listen. But it would not be the awnser either.

14/11/2022

I can’t even put into words the feelings.

13/11/2022

When you haven’t slept in days and it’s like Jurassic park on your body!

13/11/2022

https://music.youtube.com/watch?v=V3tIKBS5xTM&feature=share
Yep

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13/11/2022

https://youtu.be/EKF6ghfcQic
Can’t better describe this life 🙏💯

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13/11/2022

A while ago a couple friends have encouraged me to start this page. I started it but have been hesitant to actually share. I have for a long time been guarded. I have been quite, I have fought this battle alone. It’s not a feeling of apathy but one of fear and judgement. Judgement front he trolls of the internet , judgement from the but you look fines, judgement from a misunderstanding of what these diseases to the body. This life and battle is not one for the weak. It’s not one for the faint of heart. I have always been stronger then I look, I was forged in the fire 🔥of battle after battle. I open up not for sympathy but to share knowledge and what really goes on.

So here it goes.. welcome to our secret world 🌎 Welcome to the daily battle.. welcome to living with chronic illnesses.

This is my life on standby⏰💯

13/11/2022

Living with autoimmune is so much more then what you see on the surface. It’s a internal daily struggle that so many of us fight on a daily basis. It’s a battle we hide. It’s a battle that hurts , not just physically but emotionally. No clear awnser are out there. We all fight for what’s best for each individual..

27/10/2022

The thing about autoimmune diseases is that they can present at any point in life. They can come in and suddenly change your whole world. The most unfortunate part is sometimes it takes so long to diagnose that by the time they are found you can have a wide range of how far progressed your disease can be. In my case, I was never a alarmist , I didn’t go to the doctor unless something was really wrong. So when things started to progress I went in, unfortunately my doctor was not terribly interested. They ran some tests this and sent me to to rheumatologist. They went back and forth and finally landed on R.A. And lupus. As time went one, more symptoms and my doctor was 0 help. I had to go in guess what I had and asking for specific referrals but the time I got to a doctor who finally took me seriously the damage was done.

Moral of the story, don’t be afraid to push. Push the doctors for awnsers, push them for tests, push them for referrals! Do Not let them push you to the side!

You matter, your health matters, you deserve to get answers while you still have options!

27/10/2022

If you know you know, if you don’t I hope you never have too! 💯

05/07/2022

First off let me introduce myself. My name is Erin I’m 33 , a mother of 3 , and a invisible disease warrior.
Roughly 3 years ago, I was told my prognosis as far as years wasn’t good. We have tried everything under the sun. But 2 of diseases were so far progressed so there is not much to do. We have seen every doctor and specialist we could find. This all lead us to last week. Last week we had a appointment with Cleveland Clinic where they apologized but there is nothing left to be done. No clinical trials or experimental meds I could join. This was the end of our road.

So we are slowly processing this all. We are trying to decide our next step. We shared with close family and friends. one encouraged me to start a blog so here I am!

This consists of constant vomiting , migraines , debilitating muscle, joint and nerve pain.