I didn’t see the "New " tab. I never clicked on it.
I never saw a single post be made by u all in months.
I thought you all were a bunch of assholes because the only one who ever spoke to me was Bowler.
The only time anyone spoke to me was the admins when they wanted to bitch at me.
Minor differences between the TU and FU page, apparetly matter.
Whoops. My bad. I see you now. I’m gonna warn new people about that tab when I refer them to the site. Sometimes people really hate these sites. I wonder if they do something similar. FOR YEARS, people would tell me how much they hated the forum and I would wonder about that and wonder about that.
What did somebody say them that made them hate it so much? Everyone’s so nice, I would think.
I bet it was some small quirk like that. I thought this forum was real ■■■■. I didn’t log in much because there were no posts. I see now.
Thanks to those of you who wrote back. Otherwise, I wouldn’t have even known there was anyone else on the forum.
Actually, I still don’t understand it. But at least I know you exist out there somewhere and why the forums get a bad rap. I could never figure out why people would say stuff like that. They would say, “No one talks to me. The diabetics on the forum are all mean to me.” That was my exact experience. Now we know.
The thing about FUD is we do try to be helpful but not everyone jumps on every post. Those who find a post enlightening, helpful, or those who have something to contribute will jump onto it. Everyone else reads posts and responds when they have a contribution to make…that’s what I do anyway.
Actually, I read most of the posts here. I reply to some. But I generally do not get into the policy type of discussions. I appreciate your activity and knowledge in that arena, but I steer clear because it is maddening to me.
It’s like watching a football game between 2 teams that you hate.
First of all, thanks for writing back. i really appreciate it.
I thought I would just naturally pick up how to use the site if I posted a little here and there. But it’s been a busy couple of years in healthcare and other digital communities were super welcoming and picked me up.
Last night, your admins just sent me into a rage. I stayed up all night trying to figure out how to find forum posts, but I can only see my own. They didn’t even offer to help…for months. I can’t even talk to them today because I still haven’t slept and am totally irrationally pissed off.
Today I was driving around, like “Why the hell can everybody take the time to talk to me, EXCEPT my own community?!?!? People who are up for roles to head the FDA and DHS talk to me. WTF?” I KNOW it’s all the same people I know from TU. The website looks identical. Why is it such a different experince here? Why are we texting one another? It makes NO sense.
I need to just bite the bullet and put in some time pushing buttons on the website. Maybe in a week, I’ll MAKE time for that. I’ll ask some questions. I’ll be out here waving my arms in the dark trying to find help.
I appreciate you all writing back. And big thank you to Bowler. If not for him, I wouldn’t have known anyone was on the website at all.
You have. I really appreciate that and I should have thanked you sooner.
There’s a handful of you that allowed me to see the website was active.
Chris debugged my brain and explained how it is visually precieving the UI and getting disoriented. He nailed it via text. Told me to log on and make good.
I am gonna have to go to bed though because I haven’t slept or packed and I leave town again tomorrow.
Ok. I can’t sleep until I tell you what Chris said. I don’t know how he figured this out so fast. I could have stared at this screen for another 6 months and not figured this out. I would have just gotten increasingly and increasingly frusterated until I physically melted down.
I gotta sleep tonight, though, or I WILL have a seizure behind the wheel tomorrow. I gotta explain ASAP and go to sleep.
He debugged my brain. I can’t precieve new posts on the forum. Keep in mind that I read every post on TU and I stared at that screen for YEARS.
There used to be a red line at the top of the TU page. It might have been an indicator for archieved posts or something (I don’t recall). Below that red line, new posts were displayed to me in black (?) font. Posts that I had read previously were gray.
When I logged onto the TU page, I’m (roughly) looking for: 1.) Three archieved titles in black or gray font, 2.) Red indicator line, 3.) gray font, and then 4.) any NEW posts in black font.
When I see that pattern, I zero in on #4 and read new posts.
Now, every time I log on to FU, I’m completley disoriented and I can’t even precieve the presence of new post. Every post in new. Every post is in black font, except for mine (which are gray posts that count as read).
I zero in on the “cat” post all the time because I recognize that as something similar to an archieved post. I’m unconsiously trying to reorient myself to a sequential order that doesn’t exist. I can’t even really phsyically see posts.
That’s werid.
I was unconsiously becoming so visually disoriented that I couldn’t see or precieve anything. But I see you now. Once he told me about the black and grey front, I could see posts instead of just text.
Note: I accidentally posted this reply on the wrong forum post. It’s in the right place now. I need to sleep.
Hi @mohe0001 . We are here. Welcome. Again. Love ya long time (since Tu). Glad your still here. Let us know how your vacation went - I’m gonna guess it will be epic.
What a relief. He asked me questions about the UI, like “can you see the icon?” I said, “Yes.” I operate almost exclusivley thru the icon because I can see it. He mentioned the gray vs black font and plugins that no longer existed. Then I understood where he was going with it. After a couple minutes, I could see all of you writing posts. Really weird. It was a visual disorientation thing from changes in the UI. I NEVER would have figured that out on my own. NEVER. I wouldn’t have slept again. I would have just gone over and over the problem in my mind and never slept again.
I suspect he might be a UI guy. Praise the Lord for UI guys. Backend Frontend. They don’t get enough credit. There’s a lot of people who read, but don’t write on the platform. There’s people from Tu doing that.
I just replied to one of your posts, but many of your posts are about topics that I as a non-American have little knowledge about and thus can’t make sense of. By reading posts here on FUD I’ve learned a few things over the years, but overall my understanding of the US healthcare system remains very limited. Yesterday I learned that a young guy with type 1 diabetes is running for Texas in the midterms, is that a good thing for the US diabetes community? I really have no way of knowing, so I’ll leave the policy discussions up to you and concentrate myself on the more day to day life with diabetes topics.
It’s really hard for Americans to understand, too. You are not alone. But our bad behavior is spreading overseas and impacting foreign governements, so our ability to fix these problems DOES impact you.
One of the big problems is that when large, powerful, multinational companies become stronger than the government, they start causing harm. Our government doesn’t know what to do about that. For example, if they try to regulate a company’s behavior, that company just moved overseas beyond its reach. That’s a big problem because NO ONE can fix the problem.
Corruption is a big problem.
Regulatory capture is a big problem - where industry controls the politicians who represent us. They use $ to do that. That breaks democracy.
Some individuals overseas understand a lot more about these problems than Americans do. I think Americans have come to believe to democracy just happens on its own and that they don’t need to put in any effort. That’s a problem. A lot of Americans are frusterated because they know that systems are broken, but they don’t know how to fix it. That’s why we see increased violence here. That’s why one of the insurance executives in my home town was murdered.
Some people say that we have to make an effort to teach one another how democracy works, otherwise we lose those skills. No one is born knowing how the government work. No one really teaches you that. It’s tough out there.
No idea if it will be a good thing if he is elected. Here in WA we have Dr. Kim Schreier in US Congress since 2019, Type 1 and a pediatrician. I’m unaware of anything good she has done for us. But admittedly my eyes glaze over when discussion turns to “things politicians have done or will do for us”.
My view of our elected representatives is illustrated below:
The easiest way to get politicians to do something for you is to say, “Do this thing, or this other thing that you don’t like will happen.” It’s not unlike negotiating with toddlers.
It’s hard to say if any one person will or can do anything productive, but it helps if they come into office knowing SOMETHING.
Most junior senators come into office knowing nothing. They have no value.
Many are out of work lawyers, so they might know something about law. But it takes many years to educate them about anything specific. Then you wait. It’s mostly just waiting. It’s pretty boring. Until recently, that is. Now, the system that is typically very static and immobile, is jostling around a lot. So much stuff is happening that people can barley wrap their hands around WHAT is happening.
When a “policy window,” opens, your work matters because all the work that is bound up in the pipeline, starts flowing through the meat grinder.
We are in a very unique period. I’ve never seen anything like it before. It’s fascinating.
Here’s what I can tell you about Cuban - because he’s a much larger player than your junior senator. Cuban has good game and I suspect he wants to run for office some day. He’ll talk to anyone. He’s highly communicative. He’s active on the internet. He liked a post I wrote once and I got thousands of views from it.
Cuban has a pretty warm (almost cute) relationship with Ge Bai (she’s up for a possible position as assistant deputy at Health and Human Services, I think - double check that). Ge Bai is HARD right business. She says things that make some diabetics go ape ■■■■, but she is also very good at promoting the patient voice. She’ll say things like, “Healthcare is EVERYTHING to you guys (meaning diabetics), but to everyone else it’s just business. You are a commodity.” You can watch people’s brains explode when she says stuff like that on the internet. But she also reposts powerful things that diabetics say, and those posts get thousands of views. So, she helps up. She’s friendly with us. She’s close pals with one of our old Tu members, Scott Strumello (DFL leaning) who works on PBM reform. If I can find his blog, I’ll post it. He won’t talk to you. He doesn’t talk to anyone.
I like all of these aforementioned people because they like to talk about healthcare policy and I like to do that. That’s a nitche interest. We bark at each other on the interwebs. We compete for representation through ideas. It’s through talking to one another that we score representation and vett ideas.
For example, I really Ge Bai. I like talking to her. Her perspective interests me. But MY perspective, as a diabetic, is different. She’s an accountant. Chinese decent. First generation immigrant. Teaches at an Ivy league. Major contributor to a think tank research. I have no $ and no job. But when I write something about diabetes that might be a good idea on the internet, she tags her buddy Cuban. She’s diabetic friendly. Cuban works more with the pharmacists than the diabetics.
All I’m saying is, the way all this stuff works, is different than on TV.
Dr Bai’s perspective sometimes worries me and I am forced to try and respond to it through what I write to regulators. I think I am winning.
Scott has been drifting a little partisan on me. I don’t like that. I’m really scared of stuff digressing into partisan politics. I really respect Scott, though, almost as a mentor. But we also have different perspectives and experience as diabetics. Scotts not right about everything. But I still like him and read what he writes. I’ve learned a ton from him.
Let me tell you one of my crappier political strategies, now that we are all comfortable. Tu members would HATE this strategy and they would lecture me. But I don’t think they are around today. The fact that I don’t have a job in this town, makes industry look bad. It looks corrupt and monopolized, which I truley believe that it is. We used to house mobsters from Chicago as long as they didn’t rob OUR banks. We are a rail baron town. https://www.youtube.com/watch?v=tUTlI1nWwX0 We created PBMS. SO MANY problems in healthcare are the fault of MY TOWN. It’s ■■■■ here. But the antitrust folks from federal are coming back home soon and they are gonna notice when they look me up, that I don’t have a job. It makes industry look like ■■■■. I think that’s hilarious. Gotta work with what you’ve got.
I scared the ■■■■ out of a low level political partisan who was an ex-Medtronic employee the other week and it felt great. I don’t know what I said, but the look of horror on her face did not remove itself for 15 minutes. I felt so good. It was then that I decided me and Medtronic were in a state of truce. Maybe that’s all I ever wanted.
I don’t blame you guys for not wanting to talk to political partisans. It’s one of the most challenging things I do now. I haven’t been doing it long. I can’t say that it doesn’t have benefit. It does, but at this point, it’s a disproportunately small about of benefit for the time and misery involved. They annoy me. I’m mean to them. They tolerate it. I’m only nice to ones I like who will/can give me things I want. If they don’t gimmie what I want, then I never forget. I called a state house member the B-word everytime I saw her in public for two years, until I finally got over it. The fact that she didn’t do what I want morphed into political leverage and she started kissing my ass. That’s a truce.
Right, one of the most powerful positions in the country. Not aware of any of her decisions that has impacted me from a type 1 perspective. But I would be glad to hear if others know more.
But I do love seeing these stories for all the young kids with type 1.
Frontend. They don’t get enough credit. There’s a lot of people who read, but don’t write on the platform. There’s people from Tu doing that.
