hello alike, it’s been a while. I wanted to update you on what life has been like the past year (from what I remember.)
my last post was about gastroparesis. I was hospitalized twice in april, each for a week, one week apart. I couldn’t keep anything in and nobody could tell me why. endocolonoscopy was clear, x-ray was clear, ETC.
a few months pass, I had a GES (gastric emptying study) done in july after scheduling it in march. my GI was very unhelpful and so I went to one of the fellows who treated me in the hospital in april.
he diagnosed me with gastroparesis (mild-moderate at the time,) he referred me to a GI/motility specialist in the practice that specializes in EDS and gastroparesis patients. it was a long wait, so we tried a medication in the meantime.
summer passed, I was able to have a meal a day during vacation, but it quickly ended, even with the proper exercise and tips/tricks. I was on a liquid diet by the time fall came, and was slowly losing weight.
I finally got in with the new GI in october, and he was very good. I got patches for nausea (scopolamine), dissolvable tablets for nausea (zofran/ondansteron), and we discussed every option available and left for me.
I ended up going to get the opinion of a surgeon he knows very well and who used to work in the practice, he was also very good. we decided on one option first, and since it’s temporary, if it worked, we would do the surgery with a feeding tube placement.
this decision made me nervous, but it was the last, the only option left. the day after thanksgiving, my new GI did the first procedure, and we scheduled the surgery (pyloroplasty with jejunostomy) for before christmas.
at this point, I had lost 30+ since september, and it was december. the procedure did work some, and my surgeon was worried about my health and concerned for my wellbeing, so I got into the OR fast.
I was in the hospital for 3-4 days, and the care was awful. my surgeon and surgical team sent me home early with my mom’s medical experience and I started my recovery there. there were complications with the supplies at first but it’s being handled.
I’m currently trying to strengthen my body and muscles, socialize as much as I can, and interact with my surroundings (interests, activities, ETC.) I want to get back to where I was, by making more progress.
with this gastroparesis fight, I’ve also had other battles. with family, with myself, with others. it’s been a lot to deal with, and I haven’t always done my best. some, if not most of my worst days were in 2022.
I lost some family after my breakup with my abuser, but I also started testosterone, had top surgery, and am preparing for college. I’ve found some old friends and am making new ones. I’m going to appointments, I’m cleansing my space, and I’m letting myself rest, too. in time, I’ll heal from my trauma, I’ll be able to maintain my chronic illnesses/disabilities again, and I won’t feel so stuck (because I shouldn’t have to be the glue unless I want to!)
so, I need you to know, these things don’t go away, no. sometimes they come back stronger, but you are not weak. we can level out the playing field, I think that might make it easier. one step at a time, in the right direction.
and when they arrive, if they haven’t already, the right people will always be there for you through all of it and more, but most importantly you need to be there for yourself, too. that’s how it’ll happen. never forget that.


Ehlers-Danlos Syndrome (EDS)



Post-Traumatic Stress Disorder (PTSD)

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  • MorRhioghain


    I'm so happy to hear that things are looking up and that you're taking care of yourself! Congrats!

    • teiovex


      thank you! I’m working on it!

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