#gastroparesis
What a torture train this has been.
Sorry I haven’t been around much, tumblr. I need to come back and do some writing and share some photos. My soul hurts.
In the meantime, follow me on Twitter (@cherryrae) or Instagram (@cherryperson).
Post link
I don’t recommend holding a camera (even a small one) with a torn rotator cuff.
{please don’t remove my words}
Post link
34th revolution of the sun complete. still looking more serious than I am.
{please don’t remove my caption}
Post link
It’s been a year since the surgery to place this feeding tube. To the day. Originally there were promises of it alleviating symptoms but it quickly became clear, that in reality, this thing is just saving my life.
I’ve had no end of troubles with it since the very day it went in. Many of my problems with it have been atypical or rare; my experienced GI team having never even heard of them. Too numerous to list, and too complicated to explain with words alone.
At first this tube frustrated me so much it triggered some of the worst meltdowns of my life. Then there was the depression because of the lingering pain that should have disappeared when it healed. The anxiety of how this thing made my body look and how uncomfortable it was. Now it’s just there. It still causes pain, it still gets in the way. I still catch people staring. My body is still not a ‘normal’ one but then it never has been, so what is a tube and what is a stoma to such reality?
The things I live with every day with this thing 99% of people couldn’t comprehend. But now, it’s just me. A year isn’t a very long time in a life time and a year is even less time in the great big picture that is humanity. Still, in such a short time, it became part of me. 40 years ago I would have died from starvation. Now I can not only survive, I don’t even have to do it in a hospital.
At first, having a tube coming from a hole in my actual organs seemed barbaric (as does much of modern medicine). ‘Surely, we are more advanced than this?’, I thought. But, no, no we are not. Medicine is barbaric; it may always be that way. 40 years ago I would have died from starvation and now this is mynormal.
{please don’t remove my words}
Post link
I’m so proud of my curves. Every roll and crease is beautifully crafted. What’s love?! This is
Ana ♿
Story of my life
julian-is-vibing-here-deactivat:
anyone know any good apps for keeping track specifically of food and symptoms? i wanna see if i can figure out some trigger foods (beyond the obvious stuff like hamburgers and smoothies that’ll send me into a flareup within like five minutes of eating them)
Personally I haven’t found an app that I really like but since I’m a total geek when it comes to data and computing, I love spreadsheets and databases for organizing and tracking things. Airtable in particular is excellent because it’s user friendly and is pretty to look at (mobile app or just airtable.com)
Plus organizing your data in this manner makes for endless possibilities.
As an example, right now I can only eat pureed food so this is a table I’m using to keep track of ingredients my stomach can tolerate to make smoothies:
https://airtable.com/shrH3T1bjZvWTm4Bd
You can export it as a pdf or csv for sharing, or you can use it to make easy to fill out forms! Example:
https://airtable.com/shr2P5KrBN5snrB8i
Hopefully you or someone else can love using this as much as I do
Confronting the taboo of life with chronic pain
Hello, I’m looking for research participants for my dissertation on chronic pain. If you have chronic pain and a spare fifteen minutes or so I’d love it if you could check the above survey out.
@thebibliosphere would any of your followers be able to help out with this?
Can do!
remember to register for the dysautonomia international conference if you’re interested! it’s free and they send you all the recordings with captions afterwards. it’s looking like there’s a lot of new exciting info!
So, I’ve been in the hospital since Wednesday and they won’t let me out until I can hold food down, but the GI doctor thinks it may be gastroparesis. I asked if anything they are currently giving me will help with that and they said no. So, I may be stuck in the hospital forever now. Awesome.
This is not how I intended to spend the holiday weekend.
I feel like most of my life has been spent trying to get people to take my illnesses seriously. It’s frustrating, but at least I have people on my side now. Invisible illness is so challenging. Suffering is bad enough without everyone assuming you’re perfectly fine. ∞
You’ve been beaten up by life a bit, but you’re still here. You’ve come so far, don’t give up now! Give life some time to get better.
Post link
there is nothing more frustrating than losing all of the progress you’ve made with your health
i just had a family member call me a stupid child for telling him that no, collagen pills won’t fix my ehlers danlos syndrome
me incidental findings
“another thing we have to deal with”
me and my gi staring at each other after i refuse another feeding tube
