u/Harakiri_238

This is a playful rant, I’m not angry!

I can’t eat anything. I can have sips of water to swallow pills, but that’s the extent of drinking.

So basically NPO besides pills.

It is CRAZY the amount of times (with that context known/given) that people still recommend foods and drinks as a solution for whatever circumstance I’m facing.

If I have a sore throat SOMEONE is going to tell me to drink a specific tea, or soup, or popsicles (which do still count unfortunately).

If I say I’m struggling with fatigue SOMEONE is going to tell me to drink coffee. Or give me diet advice.

I do completely realize that if you’re asking for advice or complaining about a symptom you are opening yourself up for advice (helpful or not).

So I have no hard feelings at all towards the people who do make these kinds of comments/recommendations.

But it’s like, “man… thanks for that reminder…”

Especially with the tea one. I’m sitting over here with my scratchy throat CRAVING peach tea I KNOW is in the cupboard lol. You don’t gotta rub it in Susan. 😂

I’d be drinking it if I could!

I’m going to put pictures in the comments (if that’s not allowed please let me know! They’re not graphic).

I’ve had my J tube for a year and I’ve noticed that from constantly being taped to the left it’s now slowly pulling across my abdomen.

I had this with my GJ (now a G). Where the constant gentle pressure ended up tearing it across my abdomen to the left. Which resulted in a 1 inch scar.

It was changed to a balloon tube with external bumper which allowed me to tape it differently and now I no longer have a problem with that one.

But my J tube has no balloon, no bumper, the stitches holding it in place tore out. So all that’s holding it in is the tape.

It looks like I should be able to position the tube in a different direction, but it can only face in that one direction. It’s hard to explain unless you try and move it around yourself. But it has to lie to the left.

It’s hard to exactly explain the problem so I hope people can understand from their own experience.

But any potion of the tube that’s excess that normally would give the line more slack, just slides back into me. So the amount of tension is the same. The tube is actually significantly shorter than it’s supposed to be because so much has slid in. A doctor tried to pull some back out (for a brief period only 3-4 inches were exposed), but was afraid to do too much.

If I could put something underneath to hold some of it out of me, that might work. But I can’t imagine that would be comfortable.

Does anyone have suggestions on how I can give it more slack? So it’s not continuing to drag across my abdomen. My doctor also noticed (without me mentioning it) and was concerned, but didn’t have ideas for how I could position it differently.

Also don’t judge me for how disgusting it is lol. It was only meant to be a temporary catheter for 4 weeks and now it’s been in for over a year. No one is willing to change it or remove it because I had severe complications getting it placed. I’m getting it removed surgically. But the tube itself is just really stained. It was being used to drain 24/7 for a lengthy period while I was in the hospital.

This might be a long shot lol.

I have an Ambix Nova pump for TPN.

For MONTHS it’s been having problems priming.

It makes a clicking sound and shows the screen for priming, but the solution doesn’t move forward. Just jerks back and forth.

It doesn’t matter how many times I take the tubing out and put it back in. It won’t start priming.

The only way to fix it is to unclamp the line, manually prime it a couple inches by pressing on the bag and then hooking it back in and trying again. And that eventually works.

I’ve tried wiping out the inside incase there was debris of some kind. Didn’t help. I’ve tried having it with the bag hanging instead of flat on the table, which maybe helped a little, but it was still happening.

Lately in the middle of the night (while it’s infusing) it will stop making the normal sounds and start making the same clicking sounds it makes when trying to prime. The volume infused keeps increasing, but I can’t tell if it’s actually infusing when it’s doing this or if it’s just saying it is.

Thankfully it does it for such short intervals I wouldn’t be missing much.

I can call the supply company and have them exchange it for a new one.

But if anyone else has had this problem and knows how to fix it that would be a lot less hassle!

I can’t imagine it’s user error because I hook it up the same way every time. Sometimes it works and sometimes it doesn’t. And it only started a few months ago, prior to that it worked completely fine. So I don’t know why I’d suddenly start doing it wrong 😅

In grade 10 my French teacher announced to the class that she went to school with Justin Trudeau and used to have a crush on him.

She then gave us printed out pictures of him and our assignment was to label his body parts (in French obviously).

This memory came to me at 1:44am and I felt the need to share.

I was fond of her. Hope she’s thriving.

I’ve been on TPN since March of last year.

I had a PICC in my right arm from March to the end of October. Then was switched to a Hickman (also right side of chest).

Last week I woke up with a swollen and discolored arm that ended up being due to a blood clot in my subclavian vein.

When I saw the thrombosis clinic the doctor told me he felt the severity of symptoms I had (the amount of swelling and discoloration) didn’t match the size of clot.

I also told him some other things I’d noticed over the last 9ish months that I’d ignored that he also felt were related to whatever was going on. Venous congestion?

I’m getting a CT venogram and am on blood thinners now which has helped a lot with my arm.

But I’m curious if anyone else has had issues along these lines as it’s not something I’m familiar with.

He thought I might have narrowing/stenosis from the central line. Which is concerning to me from a longevity perspective if it’s already narrowing to a degree I’m symptomatic after only a year.

He was really reassuring. So that makes me feel a lot better lol. He also was very considerate of my requirement for long term TPN and preserving my veins as much as possible. I couldn’t ask for someone better! So I’m in good hands!

I (25F) am completely unable to eat and can only have small swallows of certain liquids (usually to swallow to a pill).

I’m fully reliant on nutrition that goes straight into my blood stream.

Some people know about it, but a lot of others don’t!

A lot of the time when people find out that’s how I get nutrition/hydration they’re curious and want to know about it.

So I thought this might be fun!

(If there’s a western you love that has nothing to do with what I mention below, or is even something I say I don’t want, please recommend it anyway! Ultimately the point is to try new things so I’m open to anything!)

My monthly reading challenge is reading a western. Admittedly, they’ve never appealed to me.

I’d appreciate suggestions that would be classified as a western, but maybe dip into the genres/vibes I like.

Horror/thriller
Absurdism/Surrealism/Weird Lit
Magical realism/paranormal

I don’t really like reading “romance books” as a genre (I enjoy a romantic subplot, but it’s definitely not necessary). Which seem to be the main options available. (Besides like gun slinging cowboys and the gold rush).

I do like taboo romance (within reason). So if I end up with a romance I’d rather it be something a little weird.

I’m on the waitlist for Chasing the Wild (Elliott Rose) and Wild Card (Elsie Silver) just in case I don’t find anything else. But I’m not super stoked about either lol.

So please! Any suggestions welcome!

Basically the title.

My throat is so sore.

Under normal circumstances I’d have popsicles or tea or something, but that’s not currently an option.

I can suck on things. But so far everything I try makes it worse (lollipop, gum, sugar candy).

I’ve always hated cough candies, but if anyone has recommendations for one with a subtle/gentler taste I’d appreciate that.

Tylenol makes me throw up and I can’t take Advil because I can’t eat lol. So I’m having a rough time.

This is my first cold since ending up NPO and it just happens to be a terrible one lol.

Someone save me 😅

Saturday morning I woke up and my right arm was massive.

Went to the hospital. Doctor tells me I don’t have a blood clot (did no testing), but ordered me an ultrasound for the next morning for my peace of mind (which I appreciated).

After the ultrasound immediately get told to go back down to the ER.

I have a subclavian blood clot! 🎉

Thrombosis clinic calls me the next day. Not only do I have a blood clot, but he believes with the severity of my swelling /discolouration that I have some secondary issue also contributing.

Possibly that my veins are narrowing from having a central line (which I’ve only had for a year, so doesn’t bode well for me in terms of longevity).

But that doctor was amazing. I love him. One of the best ever. So potentially not great news, but amazing doctor who I trust to sort me out lol!

At this point I’ve driven to that hospital which is in another city often a 2 hour drive from me 4 times in the last 5 days (not to mention the multiple hours I spent there each time).

I haven’t been able to sleep from the pain. And have just now been able to finish a bag of TPN because I kept having to unhook early for the appointments. Which left me feeling destroyed lol (can’t eat or drink to make up for it, didn’t have time to run fluids).

And NOW I wake up. And my throat is incredibly painful. And it’s like, really? 🥹

And this weekend is Mother’s Day, my sister’s birthday, and an important event for an organization I volunteer with (which I’m supposed to organize half off).

So TERRIBLE timing to be sick.

Anyway. Wish me luck lol! 😂

I’m typing this at 2am because the memory suddenly came back to me. So forgive me for spelling/grammar mistakes.

This happened to me a few years ago. I was probably 19-20F. I’m curious other people’s take on it.

I was walking to my boyfriend’s house through a residential neighbourhood (we were meeting half way).

On the opposite side of the road there was a boy (probably 14-16 years old) holding one of those little book case/bags you usually put a Bible in.

He was swinging it around and shouting things and looking around like he was scared (I couldn’t hear what he was saying because I was listening to music).

I kept walking. A little while later I heard footsteps running up behind me. I moved to the side to let the person pass, but when I looked it was the boy from before. He stopped running and didn’t pass me.

So I kept walking. Again, I heard him run up behind me. I stopped, moved to the side. He slowed down and didn’t pass me.

I assumed he was trying to get somewhere fast but didn’t have the stamina to run so was taking frequent walk breaks and knew he wouldn’t be faster than me (I was walking fast).

I decided to get out of his way and instead of taking the main road took a small, forest path just off the main road which follows the same course.

This is where it gets weirder.

He follows me down the forest path. I decide I’m not comfortable with him being behind me. I move to the side and act like I’m busy on my phone to give him time to pass. He doesn’t pass me.

I wait a long time and when I looked up at him he’s standing there a few feet away staring at me. Still looking afraid. Says nothing.

I am confused. I say nothing. But at that point I stop being smiley and give him a firm “I’m not going until you do look”.

He sighs and droops forward. Then walks ahead of me. But he keeps stopping and looking back at me. Not just glancing. Like LOOK looking. CONSTANTLY. Still looking terrified.

We get to the end of the path. I see my boyfriend in the near distance and run forward to meet him. Then turn around.

The boy stops abruptly. Looks at us together. Looks both terrified and disappointed. And then gets this look of devastated acceptance.

And then droops his whole body super dramatically. Like a super theatrical sigh/droop of disappointment. Exaggerated to degrees that felt incredibly creepy. Then he looked at us one last time. Turned around and went back the way he came.

But as he walked away he was still slouched forward to unreasonable/dramatic degrees.

And he walked back the way we came. But took the main road. Which to me implies he was following me. There would be no reason for him to walk through that forest trail, come out the other side and then walk back the way he came.

I was less worried about him hurting me and more that he was in some kind of trouble and was trying to stick close to me out of a hope of safety (like safety in numbers type thing).

He could have been high. I feel like that would probably be the most logical explanation. I haven’t really been around people who are high, drunk, etc. so I’m not familiar with it.

Neither of us said anything. I was afraid to honestly. But we continually made prolonged eye contact. We were both very aware that the other person was aware something weird was happening lol.

But I just can’t get over how creepy it was. For the sole reason of how scared he seemed.

It seems undeniable to me that he was following me. And not only wanted to be in my proximity, but specifically be behind me. I can’t help but wonder why. What he thought I offered him.

I hope he’s okay.