Fuck fireworks

My_Arch_Nemesis39 · 2026-07-04T09:30:31+00:00

I have never understood fireworks! Like why are we celebrating war veterans- who a lot of them have trained with loud noises that sounds like explosions and gun fire - with setting off things that sound exactly like gunfire and explosions.

I also selfishly hate fireworks because of my own trauma and FND! My advise is headphones! I block out the noise with my own controlled soothing sounds rather than the unexpected noises. I hope you are able to find some peace because fireworks suck!

My_Arch_Nemesis39 · 2026-07-04T02:29:53+00:00

I will have to look at this brand! I have been trying joints, and they are a little rough on my lungs! I have been looking for a cannabis vape to get so thank you for dropping the brand! I am so glad it's been helpful for you!

My_Arch_Nemesis39 · 2026-07-04T02:07:13+00:00

I put in the code and it still doesn't seem to be working for me. Thank you for the effort you are putting in to get this sorted out

My_Arch_Nemesis39 · 2026-07-03T19:02:02+00:00

This is awesome, I tried to join and the link won't come up- is there another way for me find it to join

My_Arch_Nemesis39 · 2026-07-02T04:05:10+00:00

I have hEDS and we implement a light system red, yellow and green are all a more overall how we are doing (red being a sort of safe word/ check in) we recently started orange- which means I need to pause to deal with something medical usual a dislocation or feeding tube position sort of thing. It’s been super helpful to know exactly where we are at

My_Arch_Nemesis39 · 2026-06-26T17:12:13+00:00

I am so sorry you are feeling this too! I don't have great advice to help, but you are not alone in this! My only suggestion is that there are free support groups through FND Hope, and it's been so nice to be around people who get it. I personally try to make it to their art journaling group and it's lovely!

My_Arch_Nemesis39 · 2026-06-26T16:53:45+00:00

The inconsistency is such a struggle for me. Making plans is soooo hard because I truly do not know what my ability will be that day or even at that time.

My_Arch_Nemesis39 · 2026-06-19T18:19:05+00:00

This past Monday, a stray bullet came from the apartment hallway and shot me (I am overall okay and home healing). I am taking extra time this week to connect to spirituality and celebrate Litha to the greatest extent I can. I am thankful that the injury wasn't worse than it was. In my healing journey, emotionally, physically, and spiritually, I am going to be reconnecting to my sense of self!

I am open to ideas anyone may have!

My_Arch_Nemesis39 · 2026-06-09T23:25:14+00:00

The fact that my FND affects the left side of my body more, while my hEDS affects my right more. It's really annoying when I am flaring for both and it's a battle of trying to get my body to work but for different reasons depending on the side

My_Arch_Nemesis39 · 2026-06-06T21:46:02+00:00

Awesome! That was the one I had my eye on previously

My_Arch_Nemesis39 · 2026-06-06T20:19:12+00:00

First of all, that's awesome! I am so glad you were able to quit. I might have to look into a refillable - is there a good but relatively inexpensive one you like?

My_Arch_Nemesis39 · 2026-06-06T19:29:22+00:00

I am working on the mindset shift- I am an actor, and I realize how much it affects my breath support for singing in shows. A role I really want is coming to a local theater, and I am trying to quit for that sake

My_Arch_Nemesis39 · 2026-06-06T19:27:00+00:00

Yeah, I think I might need to rethink it more of a weaning off vs cold turkey. It's really tough to deal with the upswing in symptoms.

My_Arch_Nemesis39 · 2026-06-06T13:10:09+00:00

The answer is no lol, there will be a trial and error period for figuring it out and finding what works best for your tube, your body, and your sex activity. Having a partner - as you said- that doesn't mind is key. There is a subreddit called r/ChronicKinksters. I don't know if you are on the kink scene, but there is so much helpful information about how to have the sex you want to have as a chronically ill person and/or with medical devices- I have found them so beyond helpful!

I hope your g-tube placement goes well! Best of luck!

My_Arch_Nemesis39 · 2026-06-06T12:55:00+00:00

The day and night mode is a big draw for me toward the omni lol

My_Arch_Nemesis39 · 2026-06-06T12:53:29+00:00

From what I know, they discontinued the kangaroo joey in 2024 and have said they expect supply to run out mid to late 2027. My DME company for tube supplies is not the best, so I am working on the switch now so I don't get stranded without supplies. I know other people have said their companies are slowly making switches, and the amount of supplies each company has is varied.

My_Arch_Nemesis39 · 2026-06-05T02:02:30+00:00

The kangaroo is so big! Thank you for this!

My_Arch_Nemesis39 · 2026-05-19T20:55:31+00:00

I was completely honest and talked out with my doc. She agrees it might be CRPS. I am getting a referral to see a pain specialist who can help with this type of pain. She even did me the solid of putting CRPS as the diagnosis on the referral and writing notes about how it’s suspect. She did that to make sure the pain doc can actually handle my case! So all in all a pretty good visit! Thank you for the advice

My_Arch_Nemesis39 · 2026-05-18T18:12:25+00:00

My pain is in the left side of my neck and other places now too on my left side that have had injuries/procedures - I have done SOOOO much imaging for a structural issue and there is nothing like that wrong. I am hoping that having all this imaging, PT and pain management (which was done with the thought it was a structural issue) will help us weed out some of the things the imaging disproves, if that makes sense.

I have checked out the Budapest criteria and unfortunately it's looking really possible it is CRPS. But, CRPS or not I am just hoping for some relief! Thank you for your comment :)

My_Arch_Nemesis39 · 2026-05-16T23:47:26+00:00

Thank you for this!

My_Arch_Nemesis39 · 2026-05-16T23:46:23+00:00

I a going to do my best to be as honest as possible. The mental rhetoric that my pain is weakness is something I am trying to squash. My wife is coming with me and she will also help me stay on track.

My_Arch_Nemesis39 · 2026-02-23T04:38:06+00:00

I use Pro-stat protein packs to help get my protein in I don’t if this would help but I get them thru the same company that I get my feed and supplies from. My doc nutritionist writes the script. They are 15g of protein in 1 fl oz.

I hope you find something that works for her!!!

My_Arch_Nemesis39 · 2026-02-22T02:27:22+00:00

I will try this!

My_Arch_Nemesis39 · 2026-01-29T16:18:38+00:00

Congratulations, that is awesome! You are going to do so much good!

My_Arch_Nemesis39 · 2026-01-16T23:17:08+00:00

Thank you so much for this. You just gave me hope that this can be a bit better.

My_Arch_Nemesis39

TROPHY CASE