u/Bi0_Nerd

Not really a vent, I can laugh at this stuff now, so more of a what the hell moment. It was new extension day, my favorite, because the floppy alarm inducing extension is swapped for a new stiffer one that will hold out for a few days before being floppy, too.

I get all hooked up, I’m in bed, and I feel damp, but I check and all my ports are properly closed etc. Weird, but I assume the Velcro I use to keep the tube secure is still wet from a shower.

I’m about to fall asleep and I realize I am REALLY wet. Now I’m extra annoyed, and loopy from sleeping meds. I realize it’s formula, and panic that my tube itself is failing. Thankfully, I find the issue…my extension is leaking. It’s screwed in properly, but while I’m checking, the tubing of the extension just falls right off. Cue me pinching it off, shouting “no” over and over, and trying to sort out how to prevent leaking all over as I get into my wheelchair and rush to the bathroom.

I’ve had a variety of leaks over the last year and a half, but it’s usually the feeding bag, or the port on the tube itself. (My g port can leak small drops if it’s under pressure.)

Enjoy this weird one (at least for me.) If you’re reading this still, stay dry today haha!

I’m in the, “new chair every 5 months,” club. I just got my chair in November. Custom manual with a power drive. Great.

Except…I’ve recently been diagnosed with stiff persons syndrome, abs on top of that severe arthritis in my right wrist. To spice it up I have a cyst inside of my main wrist bone so big it’s taking up most of the bone at this point.

Even power assist at this point isn’t doable a lot of days. My grip strength is so bad, and sometimes it’s gone all together. My phone is the upper limit of heavy for me and I can’t even hold that one handed most times.

Now, add in stiff person spasms, and the fact reclining is needed, and I’m sitting here wondering if there is a point in looking into a power chair or if I’m just totally screwed. I have an out of pocket motorized chair but it isn’t comfortable and causes pain with any use over 1-2 hours. It’s small, and if I spasm in it I’m hitting the floor.

I guess I just need feedback if anyone has received a chair and within a year had their condition decline to a point where they’ve desperately needed modifications to the point a new chair made more sense.

Having more of a commitment ceremony than a wedding and I’m wondering if hiring a local photographer is cheaper than a package somewhere. We are legitimately only doing a ceremony and photos, no guests or anything, so someone doing photos on their phone and a few after withs camera, would be more than sufficient. (It’s born of our second time getting “married” hence neither of us really wants anything big.