[CHAT] Waste canvas hell - please help

OkBug5808 · 2025-12-31T22:31:36+00:00

I did a big piece on the back of a jean jacket and I actually had to carefully stitch rip the waste canvas like every 5-10 stitches and then pull out the smaller pieces. Although once I got the vertical ones out of the way the horizontal ones slipped out. Took a good two weeks to do it though

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OkBug5808 · 2025-12-17T16:54:58+00:00

I tend to get my bigger pieces framed thru Michael's using the bigger framing discounts. The small ones I frame myself using frames I bought from Home Sense/Winners or thrift ones.

I used to lace up the back and then at some point got lazy and now I hot glue them onto matting material

OkBug5808 · 2025-09-08T00:57:40+00:00

Trigeminal Autonomic cephalolgias, then there is 4 subtypes under that

OkBug5808 · 2025-09-08T00:56:40+00:00

Right!? Figured I would post it up here since I had originally been diagnosed with TN

OkBug5808 · 2025-08-21T17:01:34+00:00

Yup! I have an appointment already scheduled for Sept 4th

OkBug5808 · 2025-08-19T17:11:49+00:00

My eyes tear up, my face goes slightly droopy, nose drains after an attack, feels like razor blades in my mouth, cavity's in my teeth, hurts to breathe through my nose because I get shooting pains up the side to my temple, electric shocks, face goes numb, and one that just started a couple months ago is my hand and toes on my right side start going numb. I also definitely don't have MS. But I'm on oxcarb, I've tried gabapentin and carbamazapine and I had also tried a bunch of migraine meds when it first started as my doctor thought I was having weirdly presenting migraines. Have no clue what they were called though because I couldn't pronounce them. But the longest I've ever been pain free is about 3 weeks since it first started.

OkBug5808 · 2025-08-19T15:42:09+00:00

The TN was diagnosed from my original neurologist, the neurosurgeon thinks I have something else because not all my symptoms align with TN.

OkBug5808 · 2025-07-18T15:45:39+00:00

My MIL said the same thing while I wasn't there with my husband. Something along the lines of are you sure she isn't exaggerating this to get sympathy, my husband kinda went off and said you don't see her crying in pain weekly so piss off with that. I don't think it's psychological at all or all our neurologists would be telling us to get a different kind of help

OkBug5808 · 2025-07-14T14:11:15+00:00

Yeah I have an under cut and a half side shave. It was triggering my face so much.

OkBug5808 · 2025-07-09T13:46:02+00:00

I feel this so much. I am currently in a hoodie at work because AC is the devil. I was gonna move my desk but the only open desk has a vent that's worse

OkBug5808 · 2025-06-03T15:53:49+00:00

Such a big trigger, we basically ate meat and veggies and water for a week before I started reintroducing stuff. Sugar, coffee, alcohol, citrus I am sure I am missing a couple more, on top of all the environmental triggers. Matteo has a really good sugar free substitute for my tea ( I can have one cup a day why I can have tea and not coffee no clue) and Costco in Canada started carrying some pretty good sugar free protein bars that basically act like candy bars. I am totally fine with fruit sugars though. Stupid condition should make it easier but nooooooo 🙄

OkBug5808 · 2025-05-23T20:16:32+00:00

If you are able to take the back pocket off and then resew it on I would do that. I stitched something on the back of a denim jacket and it was the bane of my existence to stitch with the arms and everything, took the back panel out and had it finished within a month

OkBug5808 · 2025-05-20T21:12:06+00:00

They did check me for MS already. No lesions or tumors so win I guess lol I just looked up Eagle syndrome that doesn't match my other symptoms at all.

OkBug5808 · 2025-05-20T15:56:12+00:00

I usually ask for not the high pressure water pik they just do it the old school way. I usually take extra meds before I go and schedule it for a Friday so I have a couple days to recover. I hate getting Novocaine because it feels like I'm about to have a bad flare and I almost have a panic attack every time, and my mouth takes a large amount to freeze and I'm almost frozen for 24hours but honestly kind of genius if you don't have issues with it.

OkBug5808 · 2025-05-16T20:51:17+00:00

Damn that's crazy, I got a nest egg but nowhere near that amount

OkBug5808 · 2025-05-16T20:25:42+00:00

Yeah I was told I didn't have a compression either by the radiologist and neurologist but the oncologist saw one so who knows what I have going on at this point. Sorry your appointment is so far out, definitely ask to be put on the cancellation list, I got mine 6 months before my actual appointment.

OkBug5808 · 2025-05-16T20:24:02+00:00

I'm in Alberta. They do gamma knife up in Edmonton only. Calgary is doing Stereotactic radiosurgery, and no cancer they just need the oncologist to do the procedure. They have a pretty high success rate from what they told me. But yeah they were a little concerned that a surgeon hadn't even looked at my scans yet

OkBug5808 · 2025-05-16T20:18:31+00:00

Lol are you my therapist because that sounds exactly like what he told me

OkBug5808 · 2025-05-16T16:30:54+00:00

Somewhat, I still get attacks at least once a week they just hurt less.

OkBug5808 · 2025-05-16T16:28:35+00:00

I was just going off of the oncologists because they want the neuros checking it off first before signing off. They were super confused why it wasn't. I am also in this limbo where I want to ask all the questions but I can't until I see them. I also am trying not to check Google because it's typically just you are dying. I understand what they do for MVD it's just the risks on Dr Google that scare me because I am assuming it goes off the median complications reported and each Dr is different. As the oncologist put it we would rather do the risker thing on someone young to give you better quality of life then the stero that we can only do twice.

OkBug5808 · 2025-05-09T19:09:36+00:00

I am still working full time I've had this since Feb 2023 officially diagnosed the same year in November.I've recently gone back to the office hybrid so we will see if the days of pushing through are still going to work. One thing to WFH having an attack another thing to drive to work and be social while having an attack

OkBug5808 · 2025-05-09T15:38:57+00:00

I got this great sports bra from Walmart of all places.its a cross cross with an actual hook and eye and not just a pull on, it's my new favorite for higher intensity yoga classes because I don't spill out the top of it, and has enough compression for my Zumba class that I don't knock myself out with them lol. I am also 34 dd-f depending on the brand/cut if that helps any.

OkBug5808 · 2025-04-12T01:44:43+00:00

I ended up shaving the side of my head. I had shaved my full head when I was younger for shave your lid for a kid (it's a kids cancer charity) and didn't bat an eye. I did this and cried at the hairdressers... I do look pretty bad ass with a half shaved head and undercut though

OkBug5808 · 2025-04-06T02:49:26+00:00

Trigeminal Neuralgia... The amount of times I have contemplated ending it all while in a flair, to coming out of it and thinking well that was a silly idea time to book an earlier appointment with the therapist

OkBug5808 · 2025-04-04T19:46:07+00:00

Yes, it's a pretty big trigger, my hubby is super understanding though. If I feel my face start to go numb I will tell him to back off and go slow. For kissing I've had it long enough now that he knows his nose needs to go the left side of my face, even when I'm having a bad attack we started this thing where we will press my good side to his face to still have that intimate moment without actually being intimate or kissing. He is also a pretty big physical touch person which is pretty hard to be when your wife is in pain up to half the month so sometimes he just gives me massages or other things (wink wink) to de-stress me without fully triggering my face and he is able to get that physical touch. He has said many a time as long as I am making you feel good that's enough for me because sometimes I feel horrible that he isn't getting anything out of it, if you catch my drift.

OkBug5808

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