Personally: Hiking, biking, photography, DnD, and fixing things.

It sounds like a lot (because it is lol) but with ADHD having a group of hobbies I can orbit around (especially if they can overlap (like these ones))can help me avoid diving into too many new hobbies.

Hello! Another super-long Flying Squid post from my visit to the Mayo Clinic here in Rochester, Minnesota. I'd link to the background, but there's been too many (requested) update posts at this point. Sorry for anyone new to this who actually reads to the end.

I'm sure they're super busy considering the number of patients, but I haven't heard from the gastroenterology department in a couple of days despite calling over there. The Mayo clinic doesn't operate on the weekends, so I'm just in a holding pattern, which is excruciating. But it has given me time to make some observations:

• Outside of medical offices and waiting areas, being at Mayo feels like being in a combination of an art museum and an airport. I don't mean like an airport with a lot of art in it either, I mean like there are areas that feel like you're in an airport based on the people traffic and the seating and the noise and so on and then there are other areas where you're in a little side room looking at hand-blown glass sculptures while you listen to a woman playing a grand piano outside of it. And then you go into an exam room and it's like a normal such place except with nicer-looking equipment.

• Rochester's population is about 120,000 people, but between the Mayo Clinic and the hotels next to the Mayo Clinic, the downtown is full of skyscrapers, making it look like a massive city... until you leave the downtown area at which point it's a standard town.

• And to cement in that point, outside of downtown, almost everything commercial is along the same road or at least very close to it.

• According to the demographics I looked up, Rochester is 6% Latino, and yet almost the entire international foods aisle of the Walmart grocery area plus multiple other displays throughout that part of the store are dedicated to Mexican food. Not a complaint, or criticism, just weird that they're devoting so much space to such a small population segment, especially considering who knows how many of them aren't of Mexican heritage or from Mexico. I'm happy that Mexicans or people of Mexican heritage get to have a lot of comfort food though, since they may not be here for pleasant reasons. Anything to make any patients at Mayo more comfortable is a good thing.

• The Goodwill is full of brand new items. I mean brand new. We didn’t look at most of the clothes (although everything on the socks display was brand new) but like everything in the garden aisle was new, with multiple copies of the same products to buy. In the electronics area there were 10-15 HDMI cables still in their plastic clamshells amongst other things. I know there are a lot of doctors here, but they are just donating new items in bulk? (It did still have the standard musty Goodwill smell.)

• For some reason, there are two malls here. One is absolutely massive. Again, something you would expect in a much larger municipality.

• There's also an absolutely massive pawn shop, I guess because people need to pawn stuff to pay their medical bills?

• Despite having a pretty much captive audience of people who are either Mayo patients or their caregivers, there is essentially nothing to do here in terms of entertainment. One of the hotels has a comedy club, there's a few bars, some outside stuff that is not doable when it's this cold and that's about it. The county museum doesn't even open until next week. You would think this would be the perfect place to open up all sorts of entertainment venues. The closest city is Minneapolis and it's an 80-minute drive. Rochester isn't even on an interstate. And, of course, on top of that, there's the huge number of Mayo employees who are also stuck here. I don't get it. I would have expected the greater Rochester area to be a bunch of antique shops, tourist traps and "old timey" stores. Nope.

• There is a weird as hell fast food place here called Mochinut where they sell "donut" rings made out of mochi balls and also sell "rice hot dogs" covered in various shells. I'd be willing to try it if I was eating, but I've never heard of anything like it before.

Also, were you hoping for more stories about my crazy mother? Here you go:

• What she is and is not willing to pay for is weird as hell. She paid for this AirBnB, which I am grateful for, and she said she wanted to help with our medical debts, which I am super grateful for. On the other hand, she hasn't offered to pay for gas, she has not offered to pay for the occasional chai latte I get for myself, and outright said, "you'll have to pay for it yourself" when I picked up a replacement charge cable for my phone. And yet she happily bought me a not especially inexpensive Mexican mango drink in the aforementioned huge Mexican foods section at Walmart that looked good to me. I'm willing to pay for all of it myself if necessary, it's not that, I just totally don't understand what she is and is not willing to pay for. It feels like it's really random.

• The other day, she came into my room and said, "I wonder where the behavioral unit is?" I said I didn't know and that she should Google it. She said, "don't you have a map?" Yes. It's called Google Maps. This is 2024.

• Because the neurologist said he was leaning on the issue being behavioral, my mother (at least for a while, we think she's come around a little) decided that it is definitely behavioral and that we should just leave and find a behavioral therapist in Indiana. However, last night she said, "do you think it could be related to smell since you're smell-sensitive?" Then went back to it being behavioral for sure.

• Later, she decided to look up Mayo Clinic behavioral doctors and somehow got onto their clinic network page and started saying things like, "where the hell is Yuma? Is it close to Rochester?" This was after I told her that the Mayo Clinic's network is nationwide.

• Thank god my wife said I should Facetime her when we get in to see a doctor after we didn't think to do it the first time because I didn't realize just how bad her hearing and memory problems are. She just basically makes up things she decided she's heard the doctors say. This second time, I've had my wife to back me up on it.

• She told me yesterday the she was very disappointed with the Mayo system (due to the wait) and that she expected what would happen was I would get into an exam room and there would be a whole group of doctors there with different specialties who would all check me out at the same time. She keeps saying, "this is just like a regular hospital!" And I tell her, "yes, except that it has some of the best doctors in the country!" As if that wasn't a huge difference.

• Even though she has been told both by me and by Mayo employees that if they were going to contact me through the patient portal, I would get an email and even possibly a text message, she told me to check the portal every couple of hours on Thursday and Friday. On top of that, she wanted us to go over there yesterday because she seemed to think we could harass the admissions lady into getting the doctor to see us.

• Every so often, she has had to be talked down from the idea that the gastro department will never call us back, but then a few minutes ago, she told me she was going to contact the AirBnB people to see if it would be possible for us to leave next weekend instead of Wednesday. I believe what finally convinced her that I was going to stay as long as possible whether she wanted to be here or not was that my wife told her last night that if she took the train home to Indiana this weekend, my wife would drive an hour and a half from Terre Haute to pick her up in Indianapolis, drive an hour and a half down to Bloomington where she lives to drop her off and drive the 80 minutes back to our home in Terre Haute and I would just check into the cheapest motel. It really shouldn't have taken her almost a week to realize that I'm staying until I get answers or I absolutely have to leave.

Finally...

• This morning, she said to me, "I guess we can relax for the weekend." I don't think that's something she's capable of. We can't think of anything better to do on Easter Sunday here than go buy a jigsaw puzzle today for us to do tomorrow. I hope it doesn't end up in one of us killing the other over a missing piece. There are board games here, but the only one that looks good to her is Scrabble, and she is an evil Scrabble player who always wins through placing tiles in the most dickish ways she can, and the only one that looks good to me is Boggle and I am, not to toot my own horn, an amazingly good Boggle player who even kicked her ass in it when I was a teenager, so there wouldn't be a point.

End of super long post.

Can you tell I'm bored yet?

With the discussion of whether assisted dying should be allowed in Scotland befing brought up again, I was wondering what other people thought of the topic.

Do you think people should be allowed to choose when to end their own life?

What laws need to be put into place to prevent abuses in the system?

How do we account for people changing their mind or mental decline causing people to no longer be able to consent to a procedure they previously requested?

I went to the neurologist this morning and after all of his tests, he said he couldn't find anything neurological that could be wrong with me. He thought it might be behavioral, but that wouldn't explain the morning heaving. He sent all of my records back to the gastro doctor and we'll see what they say when they get back to us. So I'm kind of feeling a bit deflated.

Meanwhile, my mother is driving me insane to the point that I had a minor breakdown in the car while she was yelling at me. I had to repeat over and over that she needed to be quiet and she kept saying things like, “you have so many rules!” Finally, I said, '"these are the code words. If you hear me say the exact sentence, ‘you are making me anxious’ she had to be quiet and count to 30 in her head." She agreed. Angrily. She doesn’t find that reasonable.

She's also quite hard of hearing despite having hearing aids, so I'm having my wife sit in during these evaluations via Facetime so I can tell my mother "the doctor didn't say that" and have someone else agree. It still hasn't worked 100% of the time, but it has worked.

Also, every single time there is a possible diagnosis or she reads something that she thinks sounds like my symptoms (and she's always wrong about that), she decides that's definitely what I have and she definitely knows what should be done about it.

This time it's worse, because she was a psychotherapist and she actually knows a little about behavioral therapy. But I feel really bad for her clients, because they had a totally crazy lady for a therapist. And she kept some of them on for like a decade after she officially retired. They came to her house. So they actually liked whatever she did for them. All I can think is that she has a completely different personality as a therapist.

Oh, she also thinks that the dry heaving every morning is inconsequential and I should just accept that I'm going to have to live with it the rest of my life. What. The. Fuck?

I guess it's been so long since I've spent more than a few hours with her that I forgot how truly nuts she is. And a bit on the narcissistic side.

Edit: Ugh. This fucking guy again.

Something I have stuck in my head and frustrates me, was from years ago news media talking about PTSD in regards to civilians. The conversation felt very dismissive as if it was not possible to suffer from PTSD unless they fought in a war.

recently I was diagnosed with CPTSD due to a horrific home life growing up. Anyway all this has compounded to were I feel like an outsider.

I know cptsd is somewhat common and I'm wondering if anyone remembers this narrative in the news, and if anyone with PTSD/CPTSD has felt similarly?

Mods: Multiple people have asked me for an update, so I hope this is okay.

Very long post, feel free to ignore.

Background here- https://lemmy.world/post/12194311

Anyway, I went to my evaluation appointment this morning after making an 8 1/2 hour drive to Rochester, MN yesterday. (And boy did my butt hurt!) I gave as detailed an account of everything I could think of to the nurse on top of all of the information they already had. She went to consult with the doctor, who came in 10-15 minutes later.

After asking me some questions, he decided to examine my tongue. He took a Q-tip and started touching it. The further back he went, the more I gagged, but only on the left side.

That actually makes a lot of sense because I also have trigeminal neuralgia on the left side of my face. I was diagnosed with it 9 or 10 years ago and it's mostly controlled with a combination of medication and cannabis.

The trigeminal nerve is not on the tongue, but it's on the same side and apparently that sort of hypersensitivity is something that might happen- but the doctor did say my case was extremely unusual.

So, we did a test. He sent an order down to the pharmacy for a special compound liquid mouthwash- a combination of lidocaine, Benadryl and Maalox. Sadly not covered by my insurance, but my fairly well-off mother is with me and covered the $127 price tag. He told me to swish it around, spit it out, wait five minutes and then eat something I like a lot and have wanted to eat for a while.

The selection in the cafeteria was pretty limited, but they did have egg salad sandwiches, which I do really like. So I swished it around- had to do it for a full minute and the taste is foul- waited five minutes and-

Apologies for the ridiculous beard, it's been hard to give a shit about my appearance for a while.

So, it was only one bite and I stopped there, but it was the first time I have been able to chew and swallow solid food in just over seven months. I couldn't taste anything, but I do know it had horseradish in it because I could feel the type of spiciness horseradish has.

He made an appointment for me to go to the neurology department and we are here until April 3rd, but he couldn't guarantee that the specialist would be able to see me within that time frame, so the sucky thing is that I might have to come back. The sticking point right now is that the neurology department wants me to do an EMG, which is scheduled on Thursday, and it's just not necessary and probably will be quite painful, so the gastro department is working on trying to get me past that.

In the mean time, I'm to do the mouthwash as directed and then try to eat soft foods, but foods I enjoy. I guess the enjoyment part is just supposed to be psychological because I can't really taste anything once I use the mouthwash. Thankfully, the numbness is gone within about half an hour. He likened it to physical therapy, that it might be possible to get my nerves to heal this way. No guarantees, because he was a gastroenterologist, by profession, but he did do a dissertation on taste hypersensitivity, which is apparently what I have.

After it was over, we went to Walmart and I got a tub of deviled egg potato salad, which is definitely food I enjoy. So that will be what I will be seeing if I can eat this evening.

So... I am exhausted from the day and it's only 4:30, but I feel like a massive weight has been lifted now that I at least have an answer to what is wrong with me even if I don't know the best form of treatment yet.

Here is the other big relief. I am a heavy cannabis user (vaporizing) because it acts as a really good pain modifier and, even though the symptoms didn't really fit for cannabis hypermesis syndrome, they were close enough that I was very concerned that it might be the issue because honestly, the pain is pretty hard to bear without it.

Now the only question is what the hell I am going to do with myself tomorrow.

There is fuck all to do in Rochester and I really don't want to take another drive up to Minneapolis just for something to do. The one thing here that sounded interesting was the county historical society, which is in a 38-room mansion. It's closed until April 3rd. D'oh!

As I said, 82-year-old mother is with me so I can have someone else take notes and ask questions. She's good at that part because she used to be a psychotherapist, but I can't imagine what her therapy was like because seriously, she's nuts.

Already since we started yesterday, she had a massive panic when we were loading the car and got mad at me for holding her birthday present because "I can't deal with that right now." Then we were on the road and she insisted Waze was accurate even when it clearly wasn't. I had to work very hard to convince her that we were going from Indiana to Minnesota, so it didn't make any sense that we should take the interstate going to Detroit and Toledo. Then this morning she got angry at me in the parking garage because I wasn't looking right and left while trying to avoid hitting the car in front of me and missing parking spaces. Finally, she got pissed off at me again because I kept telling her I knew where to go because I could read the signs and read the floor number in the email they sent. But she seems to have ratcheted down the crazy since we got the answer.

One last thing- I am on Facebook primarily because most of my relatives, including my brother, along with many friends I never see and I'd never talk to any of them otherwise. I posted the uncensored picture above. Some asshole I friended because we had a bunch of mutual friends and I assumed he was someone I know but had forgotten about (I usually just unfollow such people and never hear from them again) posted on that picture with the comment, "you look healthy, you'll be fine."

I really had to fight the urge to respond, "motherfucker, if I was fine, I wouldn't be at the fucking Mayo Clinic." I talked to two different cancer patients waiting for their oncologist today. One had appendix cancer, which is quite rare. She said it was stage four. She "looked healthy" too.

It's almost as if external appearances aren't a good metric for health, isn't it?

Edit: I'm supposed to swill that awful shit in my mouth for a full minute, but I could only handle 30 seconds because it tastes so awful. However, I was able to manage two bites of potato salad. It might not have been the best choice because the aftertaste of (I think?) onion is getting to me and I have to drink an Ensure to get rid of the taste, but it's still progress. It's so weird because I can barely taste or smell it, but it still has an aftertaste that I find unpleasant.

Like am i missing out on big boy talk, gore, news etc that are adult ? Lemmy should seriously get a second filter like one that filters porn and the other that filters the rest if that is the case . Anyway what do you think ? Should news etc. be put behind nsfw ? I know i am straying far off the primary question but i am just talking casually and pulling it out of my ass as i go so thoughts ??

Edit : Is there any issue open in lemmy git for additional filters ??? If not can someone less lazy than me open one ?