surgicalfeedingtube hashtag performance

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let's talk about the ooky parts of taking care of bodies that don't work right. it's scary to not know this stuff! my wonderful friend @Brie helped me learn what I needed to know and I've had a few people reach out and ask questions, scared because they may be starting soon. I wish it wasn't so scary, and I don't think it has to be. If I can answer anything, let me know. obviously I'm not gonna show a real body, but I'm comfortable using medical terminology and converting to layman's terms. were you scared when you started cathing? what could have made it easier? #neurogenicbladder #spinalcordinjury #selfcath #selfcatheterization #isc #fisc #catheter #catheterization #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

let's talk about the ooky parts of taking care of bodies that don't work right. it's scary to not know this stuff! my wonderful friend @Brie helped me learn what I needed to know and I've had a few people reach out and ask questions, scared because they may be starting soon. I wish it wasn't so scary, and I don't think it has to be. If I can answer anything, let me know. obviously I'm not gonna show a real body, but I'm comfortable using medical terminology and converting to layman's terms. were you scared when you started cathing? what could have made it easier? #neurogenicbladder #spinalcordinjury #selfcath #selfcatheterization #isc #fisc #catheter #catheterization #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

I was having potatoes this morning wondering why they hurt, when they are usually a safe food. realized it was the skins and my mind when back to @Letty 🤙 telling me not to be ashamed if I need to put food back on my plate . so thank you ^_^ and passing this on to others. obviously I'm doing so with tact and not like. loogie ing it. because I just know that's gonna be a question lol. but you! don't have to keep eating things that hurt you! even if the best way to remove that bit is to chew the rest first #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #ehlersdanlossyndrome #chronicpain #medtok

I was having potatoes this morning wondering why they hurt, when they are usually a safe food. realized it was the skins and my mind when back to @Letty 🤙 telling me not to be ashamed if I need to put food back on my plate . so thank you ^_^ and passing this on to others. obviously I'm doing so with tact and not like. loogie ing it. because I just know that's gonna be a question lol. but you! don't have to keep eating things that hurt you! even if the best way to remove that bit is to chew the rest first #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #ehlersdanlossyndrome #chronicpain #medtok

food for thought #accessible #accessibility #university #college #collegestudent #disabledstudent #campus #menwithlonghair #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

I've said it before and I'll say it again: in the first photo I had forgotten what it felt like to think complex thoughts. let them help you. and if they won't, make them. listen to your friends, listen to the people who can see you dying, listen to your quality of life getting on its hands and knees and begging. you deserve health, comfort, nutrition, safety and security in your own body, quality of life, and help getting there #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

I have adult onset occult tethered cord syndrome. ask me anything 💞 #raredisorder #raredisease #rare #ama #awareness #rarediseaseawareness #nottooraretocare #occulttetheredcordsyndrome #spinalcordinjury #spinalcordinjurysurvivor #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

Replying to @chronicallycal I started cathing at least 6 months after when I should have started, and about 4 months BEFORE my urodynamics study (which was last week). the misconception that I had was that I didn't need management before testing. I'm currently presumed neurogenic bladder with confirmed high pelvic tone. I will say, it's insanely difficult IME to cath with active high tone but! my tone got better after I started having less constant severe retention. a lot of the tone for me came from a response to the breakthrough/overflow incontinence. ask your doctor, of course, but I'd say if you're thinking about it it's time to at least look into it with your care team. it definitely changed the quality of my life massively, and it's a lot easier to work on solutions when I'm not spending every moment trying to manage my bladder #neurogenicbladder #incontinence " #taboo " #selfcath #selfcatheterization #isc #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

Replying to @chronicallycal I started cathing at least 6 months after when I should have started, and about 4 months BEFORE my urodynamics study (which was last week). the misconception that I had was that I didn't need management before testing. I'm currently presumed neurogenic bladder with confirmed high pelvic tone. I will say, it's insanely difficult IME to cath with active high tone but! my tone got better after I started having less constant severe retention. a lot of the tone for me came from a response to the breakthrough/overflow incontinence. ask your doctor, of course, but I'd say if you're thinking about it it's time to at least look into it with your care team. it definitely changed the quality of my life massively, and it's a lot easier to work on solutions when I'm not spending every moment trying to manage my bladder #neurogenicbladder #incontinence " #taboo " #selfcath #selfcatheterization #isc #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

Replying to @mias_lyfe TLDR; love love love, I just wish they came in my size 🥲 #catheter #selfcath #luja #coloplast #speedicath #compactcatheter #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

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