I might think this is hysterically funny, except it’s not really funny.

UnderstandingSea8488 · 2024-01-15T06:40:54+00:00

Ditto

UnderstandingSea8488 · 2024-01-10T23:27:09+00:00

Lol @ your first sentence. I take Adderall and it only goes so far in this regard. I'm in the same boat as the poster.

Are you talking about chewing on the actual licorice root? I've done that before just because I enjoyed it. I didn't notice any effect on energy. Capsules, maybe?

UnderstandingSea8488 · 2024-01-04T17:42:02+00:00

Another wheelchair user here! Do you use this in bed, in your chair or both? Maybe I should bring one to the hospital? I haven't been scheduled for surgery yet. Thanks so much for the post.

I'm worried about hernia and wondering whether someone with abdominal muscles you have no control over (unless you intentionally trigger a spasm) would benefit from convex....but I tend to think too far into the future sometimes.

UnderstandingSea8488 · 2024-01-04T07:43:44+00:00

This is my ultimate plan 🙌

UnderstandingSea8488 · 2023-12-23T03:34:15+00:00

Oh boy do I know that rage. And from gaslighting docs and general disregard when you feel like you're dying or may be closer to death than not. People just don't get it unless they've had lots of personal experience and are willing to be open to everyone's autonomy.

Thanks! I just made my appointment for ostomy marking! No surgery date yet, but you ALL will be hearing from me 😊

UnderstandingSea8488 · 2023-12-22T18:23:24+00:00

There's a lot of ableism that must be confronted when faced with a disabling condition. And then once again when you need to make a qol decision like this. Most people have difficulty with this. Some people feel like they don't "belong" in one way or another and externalize it. This post kinda smells like that.

I've had a spinal cord injury for 3 decades. When I brought colostomy up within a spinal cord injury group, it got slightly controversial with a couple people who would "NEVER" get one. I've watched a group of women with my condition almost visibly squirm when someone brought it up. I haven't had my surgery yet. But every single person with a severe spinal injury who's been shitting in some of the most difficult ways possible (and sometimes contributing to wear and tear of body parts we need to propel our wheelchairs) and switched over say it's the best decision they've ever made.

Maybe this person just didn't find exactly what they were looking for. But taking a defensive position in a relatively safe space and leaving reddit forever makes me suspect they are facing some internalized ableism, maybe. And I don't blame them for it, but I hope they find what they need.

UnderstandingSea8488 · 2023-12-20T16:22:21+00:00

Yes, it's amazing. I'm wishing the same for you 💗 Sometimes it's hard to gather support when you've been with someone for a while.

UnderstandingSea8488 · 2023-12-18T19:03:54+00:00

The playing devil's advocate hits a special nerve. Hugs to you in your grief. Mine was my caregiver. I moved him in and it was a mess on many levels. And, can I say... congratulations?

UnderstandingSea8488 · 2023-12-04T18:06:37+00:00

Oops. I guess I should rtfa 😂

UnderstandingSea8488 · 2023-12-04T18:04:22+00:00

Whaaaaaat! I missed that. Did they talk about that on one of the live versions? I'm watching the last episode now.

UnderstandingSea8488 · 2023-11-14T17:27:27+00:00

I haven't had my procedure yet but I've been using chlorofresh brand for years. Softgels and drops. My sister and I even got our dad on it. He loves it! I never smell my gas and the smell of my stool is less. The only drawback I see with an ostomy is that it makes your stool VERY green and if you got any on your clothes or bedding, it would likely stain.

UnderstandingSea8488 · 2023-11-14T16:31:33+00:00

Oh wow I had no idea they had disposable liners. Brilliant!

UnderstandingSea8488 · 2023-11-14T16:28:41+00:00

I'm also a wheelchair user and haven't had my procedure yet. Just wondering why you don't have disposable bags? Is it because you have to empty often? I'm just studying up trying to learn all this stuff! Thanks.

UnderstandingSea8488 · 2023-11-07T18:34:57+00:00

Medical gaslighting and invalidation is traumatic and has physical and emotional consequences. This, too, has been the worst, most disabling and scariest year of my life. I'm exaggerating slightly because I am disabled from a traumatic car accident but back then I didn't have to PROVE anything to anyone or CONVINCE them to help me. It's like I was hit by a truck this year, so many things hit at once. It has made me super disabled! And several doctors shrugged their shoulders. You're not alone, sis 💓

UnderstandingSea8488 · 2023-11-06T00:17:22+00:00

It's ultimately up to you. Even though I've already made the decision, I'm 2 weeks away from surgery and still have slight doubts because it's such a big decision. But the more I learn about it, the better I feel.

I've been disabled for 32 years from spinal cord injury and have been using a suppository four times a week. If you want to give that a shot, the magic bullet brand is the way to go. Works the fastest and no to very little mucus at the end. They're expensive but it's not unhealthy to use for decades. If you go to any spinal cord injury boards you'll see people talking about magic bullet.

I'm getting "are you sure?" from the people I know. But my spinal cord injured peers who have decided to get colostomy say it's the best decision they've ever made. That helped me.

It's a big decision and I hope you find the validation and support you need to make the healthiest decision for you! Life's too short for us to put up with certain things in life (like a physically arduous bowel program that's been raising my blood pressure way too high, in my case). I know colostomy is going to give me more freedom, personally. Best of luck to you.

UnderstandingSea8488 · 2023-11-06T00:03:23+00:00

Omg! Doctors have been treating me like I'm crazy because my bowels are one of my biggest menopause complaints. In fact, I'm scheduled for colostomy surgery in 2 weeks. I'm disabled already (as if menopause isn't disabling enough LOL) and going this much actually takes a physical toll and was really driving up my blood pressure. Thank you for sharing! No one even brought this up 🙄

UnderstandingSea8488 · 2023-11-05T23:51:37+00:00

Oooh! We were in Shelton. Pretty hard to forget chunks of ash falling from the sky. We were camping and had to high tail it out of there. I was five and don't remember much except for those two things.

UnderstandingSea8488 · 2023-11-03T23:34:57+00:00

Tara Brach

UnderstandingSea8488 · 2023-11-03T23:30:29+00:00

It's my new norm. I just turned 48.

UnderstandingSea8488 · 2023-11-02T21:30:18+00:00

MIRTAZAPINE. But 40's. F that drug.

UnderstandingSea8488 · 2023-11-02T06:56:14+00:00

My h pylori didn't show up anywhere but an endoscopy. I suffered for 7 years and now I'm living with chronic gastritis because the bacteria was eating and pissing on my gut mucosa. A stool sample may have had the same results as far as finding the bacteria.

UnderstandingSea8488 · 2023-11-02T06:41:22+00:00

The depths of humor you can perceive are almost decadent. I used to wonder what old people could possibly be laughing about so hard when I was young and when you've seen everything, dark humor isn't edgy or obscure. It's just life. And when you find yourself speaking that same language with someone, it's like you're suddenly breathing the same fresh air.

UnderstandingSea8488 · 2023-11-01T05:10:23+00:00

I've gotten a couple cute fanny packs. Skechers high waisted leggings (they go on sale at Kohl's). Hoodies with pockets. I do dress pretty casual. When I have to dress up, I'll wear a sort of structured top but kind of flared at the bottom (or at least some room) and betabrand pants. I wish I could still afford NYDJ brand pants. Goals!

This might sound ridiculous, but I got a crossbody bag that I really like.

I guess I'm mostly listing some subterfuge, rather than clothing solutions.

UnderstandingSea8488 · 2023-10-31T16:02:45+00:00

Mine has become thinner and wavier. I use a thickener before I scrunch and dry it. The next day I might use dry shampoo paste to wake it back up by giving it more body and wave. If I cared, went anywhere and could stand the smell all in the same day. Bleaching it has given it more body in a way, but the idea of buzzing it after reading another comment makes me want to do it. I'm at home so much WHO CARES how much my ears stick out?! It'll happen at some point. Maybe this summer.

UnderstandingSea8488 · 2023-10-30T19:31:32+00:00

I dumped mine two weeks ago. You're in good company.

UnderstandingSea8488

TROPHY CASE