Background links:

https://lemmy.world/post/12194311

https://lemmy.world/post/13579250

https://lemmy.world/post/13834878

So, after nothing for a week do to the first doctor's colossal fuckup or whatever it was, I got in to see a GI behavioral therapist today. She hypothesizes that something behaviorally triggered the heaving and the not eating and so on, possibly even the kidney stones I had a month or so before this all started (we'll probably never know), and it just became something that never went away.

Much to my mother's displeasure, since she's decided that in all of her social worker schooling that she had almost 40 years ago I had a phobia, the social worker said it isn't a phobia. It's an aversion, but not a phobia.

So, she has a couple of things she's having me do. First, go see another behavioral therapist in Indiana. She's getting me a list. She says it doesn't have to be one who specializes in GI problems, which is good, because there's only one of those in Indiana and she's not on our insurance.

Secondly, she is having me do deep breathing exercises, especially in the morning before I've done any heaving. She thinks that if I do it properly, the extra oxygen should relax my muscles and stimulate the vagus nerve, which will hopefully stop the heaving.

The only thing I didn't like is that she didn't let my wife sit in via Facetime or speakerphone because that was not allowed, which means I have to rely on my anxiety and stress-ridden brain to remember everything because my mother sure won't. What a mistake to bring her along.

I'm still hoping to see an ENT while I'm here because no ENT has ever evaluated me and it's worth an evaluation, but I'm in triage for that, so if they don't have me go in tomorrow, I'll have to do it in Indiana because we leave on Friday, or at least will be kicked out of this AirBnB, and my mother refuses to stay in a hotel.

Anyway, this is the first day since I got here last Monday that I actually felt like they were helping me and doing something about my problem. It would have been really fucking nice if they had done it without only a 2 day window, but it's better than nothing.

I don't know if they're going to do anything for me because of what the first doctor did, but I feel like they owe me some sort of reimbursement at the very least. Apparently a patient advocate will be reaching out to me in the near future.

And now, more crazy mother stories!

From Monday:

I went to take a shower and when I told my mother, we had this conversation-

“Take your phone with you.”

“Into the shower?”

“Well what happens if they call?”

“You’ll have to answer it.”

Then I give her my phone and she asks what code she’s supposed to enter when they call. She has the same make and model of phone as I do. You don’t need to enter a code.

The best part is we had this exactly same conversation last week.

Later we go shopping and we buy a couple of boxes of Ensure (my main source of nutrition).

“How long will these 32 Ensures last you?”

“At six a day-”

“I thought you took four a day.”

“I did, but the doctor told me I should take 6-8.”

“He did?”

She was in the room at the time. It was also last week.

We are driving back-

“I thought the Mayo Clinic was going to be like the ER, where a whole team of doctors works on you at once.”

“Mom, I’ve been in the ER four times in the last year. They don’t do that there.”

“Yes they do, I’ve seen the shows!”

Then, when we get back-

“Ok, we’re back, I’m going to my room so you can have your chicken.”

“I’m not going to have my chicken yet, I’m going to get my coat off.”

“That’s fine, I’m just going to go now before it starts smelling.”

I go to my room. 2 minutes later- knock knock “I’m going to have my chicken now.”

Yesterday, she kept getting tornado alerts on her watch because it's localized to Indiana and kept saying, "is that in Rochester?!" Yes, it's snowy with a chance of tornadoes. She also this morning said "there's salt on the ground. Is it slippery out?" Not anymore due to the salt.

As for today, the appointment was at 9:45. She insisted we leave at 8 to get a parking space in one of the multiple 10-storey parking garage. I was able to talk her into 8:45. She complained the whole way there that we would be late and started panicking in the car in the parking garage since there was a slow line in front of us. Then we got out and she looked at her watch and it was like 9:03. She said, "wow, we have so much time!"

I celebrated something finally happening by buying a $30 bottle of ruby port, which I am looking forward to having this evening.

We're either leaving tomorrow or Friday and then I don't want to see my mother for a while.

EDIT: Just got denied a Mayo ENT consult and was told to get a local one (which is fine). So I guess we're going home tomorrow. Thank god.

EDIT 2: I just got a call from the Mayo patient advocate. They will not be charging me for the GI visit and they will be reimbursing us for some of the AirBnB cost. I appreciate them making things right.

I saw my gastroenterology doctor for my initial evaluation visit on the 26th, he sent me to a neurologist the next morning. The neurologist didn't find any issues but did theorize it might be behavioral and sent his notes back to the gastroenterologist maybe 20 minutes later.

After calling the gastroenterology department every single day since that afternoon, plus also sending multiple messages through the patient portal, each time saying I would be happy just to talk to a nurse, I was finally told today that the doctor I saw has been out since last week and will be gone until the ninth!

I asked if I could see someone else. No I couldn't.

Thank god I saw the neurologist after him, so at least I could call them and see if I could get a referral, but I’ve been waiting a week and no one told me until today!

So I wrote a very long and angry email to the patient advocate, although I did avoid the words ‘malpractice’ and ‘lawsuit,’ but I sure thought about it. Then I sent another message to the patient portal and called the neurologist to see if he could refer me to a behavioral specialist since he theorized it was behavioral. They don’t know if they can get me in by the end of the week.

We already extended our stay here until Friday. We were supposed to leave today. They told us expect 5-7 days (minus the weekend).

I've gotten no answers. A couple of theories, but that's it.

Why did I even bother coming? We had to drive 8 1/2 hours and my mom spent a bunch of money on this AirBnB. Now we'll have to drive 8 1/2 hours back and I may not even get the referral.

If they tell me I have to come back at some future date, as I feel right now, I'm going to tell them to get fucked.

This is supposed to be the top medical clinic in the country and I've been treated like shit.

I have no idea what to do now. I guess if they can't get me in, go home and hope there's a behavioral therapist worth a shit in Indiana that my insurance will accept and hope it really is a behavioral issue.

Just now as I was writing this, the nurse from the gastroenterologist got back to me. She said I'd have to wait until he got back on the ninth. Thanks a whole fucking lot for that.

Edit: Well since I wrote that, it's been a whirlwind.

A couple of hours ago, I got an extremely apologetic phone call from a different GI doctor who saw that I wrote a big, still cordial, but in my mind huge fuck you, to the nurse. He scheduled me for a blood panel right away, a meeting with the GI behavioral specialist tomorrow and is trying to get me into the ENT.

Apparently the original doctor didn't even take good notes, because this doctor wanted to send me to a dermatology clinic for pain and I had to explain to him that pain was never an issue, which greatly confused him.

Anyway, I got the apology that was warranted (although admittedly not from the right doctor) and even though it will mean staying the rest of the week, at least things are back on track.

My father was a very angry man and he died angry. The dementia didn't help, but he was very angry before the dementia. And I do not want to die like him, so I try not to get angry, but I hit my limit and actually lost my temper and it worked out for me for once.

I'm still not going to be an angry person, but maybe I won't be as polite as I used to be before either, at least not in a medical setting.

I know I will, but it also leaves an edited mark on the comments so I'm curious about your thoughts

They were both in their early 80s and had been together long enough they decided to move in together.

She had 5 huge framed paintings (prints) that no longer had walls to hang upon, and she wanted me to have them. All 5 of them.

Gigantic shitty prints with ostentatious gold-painted frames, featuring rose vases and fruit baskets and the like.

I think we are all familiar with this kind of "old lady" art. It was popular among the same clientele who would purchase ugly mass produced china to keep and not use. Basically department store rubbish of their day.

It was completely okay that she offered them to me.

It was not fine that she would not take "no thank you" for an answer and kept on pressing.

It was not fine when she would not accept my answers of "I do not like them" and "I do not want them" and "they are ugly" and "if you insist on giving them away, give them to a thrift store".

It didn't feel particularly pleasant to me when she acted as though she was doing me a great favor, and insinuated I was being ungrateful by not appreciating their inherent value.

Finally I cracked and said okay I will take one of the paintings, may I have that big rose painting at the front?

Yes.

It becomes my property, you won't ask for it back?

Yes it's yours!

I picked up the painting and out the front door I went. I leaned the painting up against the elm tree on the boulevard at a 45 degree angle and proceeded to kick a hole right in the center.

I went back and said do you still want to give me those other paintings?

Later that week when I was taking gramps out for lunch he told me that it was one of the funniest things ever, and he completely agreed that it was the right thing to do given how absurd her insistence had gotten. He also said he was made to suffer for my actions though lol - although he really did not lay any blame at my feet, he let the punishment roll off his back like he always did, good guy!

I would of course never behave that way now that I'm an older man. I would just more insistently say that I'm not going to take them under any circumstances.

I was inspired to tell this story based on something I read in another thread. People were delighted to tell their mom they're just going to throw her china in the garbage and relating how mom was freaking out, and they were relishing it!

It's very sad, but with the holiday weekend I've been able to keep it in the back of my mind instead of the front. Now that Mom is sharing info on services, i can't imagine actually going there and seeing and what to say... and it's getting to me, a lot. Today is a celebration day in my house and i don't want to bring my family down, so i just need a place to rest this until i can get back to it tomorrow and begin processing. Sorry for public journaling.

I just got to work at 02:30, covering the second half of the graveyard shift. Pretty quiet night.

I mean like I accept who I was born as but if given the choice I’d choose to be born a woman, yk? Idk but I kinda envy them a bit but i’m fine being an unsexy man

image unrelated

Either through memes or comments I keep seeing this sentiment pop-up from time to time. And I'm wondering what your (yes, you) consensus is on it.

I for one am too pessimistic to do anything with potential hints. Like even if there is a good chance I still just don't want to risk it.