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.
Next time you are not allowed to facetime someone in, ask if you are allowed to record audio. That way you can listen to it again and see if you missed anything the first time.
Great idea! Thanks so much!
And if recording isn’t allowed, bring a notebook and pen. I frequently take notes at the doctor’s because I don’t trust myself to remember all the important bits later.
That was the idea of bringing my mother along.
You can see how that worked out.
Yeah I did unfortunately…hence the recommendation for a way to do it all yourself. Though I have no idea what was involved in your various appointments so maybe it’s not a feasible option.
deleted by creator
Absolutely nothing your mother does sounds “crazy” rather than “elderly and concerned”
deleted by creator
Yesterday, she kept getting tornado alerts on her watch because it’s localized to Indiana and kept saying, “is that in Rochester?!”
I don’t think he knows about thundersnow, Pip.
Does thundersnow result in tornadoes? Also, does it happen when it’s only flurries?
You been… Thunderfluffed!
For the record, you have been in SE Minnesota for a small amount of time and have now experienced pretty much the entire range of weather except for the humid 105F days. Tons of snow. Lots of cold rain. Followed by snow. Then it all melting and horrible wind.
Minnesota had its first December tornadoes a few years ago.
For the former, I dunno if thundersnow does specifically, but clearly tornadoes and snow are not incompatible.
For the latter, eh, probably not, LOL.
Just a question OP, I know you are not keen on online attempts at diagnosis, but have you ever considered writing to the medical mystery column at the New York Times magazine? https://www.nytimes.com/column/diagnosis
I’ve never heard of it. Interesting. Thanks.
It’s at least a doctor. Hope it helps. Thinking of you!
I can’t figure out how to submit my story. Any ideas?
I found this link: https://www.nytimes.com/interactive/2018/05/04/magazine/netflix-diagnosis-series-matts-fainting-spells.html
Sorry I thought it was on the page.
She also has Twitter: https://twitter.com/LisaSandersmd
Great! Thanks!
Thanks!
Hey, I saw the other post you made. Sorry I missed this. I’m stoked you finally have a lead, so congrats and good luck with the referral!! And it sounds like the patient advocate did you a solid, so good on them!
Side note: what’s up with the toxicity here? Jeepers, has the Casual Conversation community always been like this?
Never enough. I really care about you and want to hear all the outcomes.
Why do you think your mom is unwilling to stay in a hotel over an AirBnB? A lot of times hotels are a better deal nowadays.
Removed by mod
If you’re annoyed by your mum this much, why drive half the way across the country with her for your doctor visits? You’re a grown man. With a wife. Do it yourself. And an aversion and phobia are practically the same, i.e. it’s “i don’t like it” instead of a physical medical issue.
Oh wow, I totally see why @FlyingSquid would stop posting updates. This is truly shitty person behavior, it would have cost you nothing to not comment on this thread.
Instead you wasted your fucking time just being a pedantic asshole to a person who doesn’t deserve it. This is some unhinged type shit!
JFC, what a jerk.
What an insensitive, absolute piss poor take - especially considering the sensitive nature of the discussion topic. Would have cost you literally nothing to keep this to yourself.
My wife is taking care of my daughter. Going by myself would have been both much more expensive, since she’s paying for my stay, and, despite her being crazy and giving me a lot of problems, it’s always helpful to have another person around to ask questions you didn’t think of.
And an aversion and phobia are practically the same, i.e. it’s “i don’t like it” instead of a physical medical issue.
I think I’ll listen to a behavioral therapist in the best hospital in the country over a random person on Lemmy who doesn’t know anything about parasympathetic nerve system GI behavioral issues. She stated very clearly that it was not a phobia when asked explicitly if it was. I’m guessing she would know better than you, especially since she had my entire medical history, all of my clinical notes, and spent about an hour talking to me before discussing this sort of thing with me.
But hey, if you know so much, how about you tell me how I’m supposed to start eating again? Let me guess- just do it. Just like how people with clinical depression need to smile more.
Edit: Here you go, Dr. Geophysicist, MD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4858318/
Removed by mod
You have been banned for 7 days. This is against the first rule of our community “be respectful”
deleted by creator
Okay, doctor. You know best.
Now please, doctor, tell me how I’m supposed to start eating. Does it involve cheering up and smiling more?
By the way, doctor… how does the heaving within five minutes of when I get up every morning for over a year involve my disliking food?
Also, doctor, why do I really want to eat food if I dislike food?
Oh, and doctor, what is your opinion of ERP and HRT / ComB model? Because the person I saw today is having me go through those therapies, so I would love your expert opinion on them. Will they make me not dislike food that I already don’t dislike? Just curious.
And also, doctor, the Mayo Clinic wasn’t expensive at all. I’m paying a total of $120. I would have thought you would have known that with your extensive medical experience.
Doctor! I just thought of another question! Why did I get my gallbladder removed if this is just about not liking food? Am I really into getting surgery?
I’m sure I’ll come up with other questions for you, doctor. You know more than any of the over a dozen medical professionals I have seen in the last year.
Hello, this user has been banned for 7 days. Sorry about this.
Thank you. This whole thing was toxic days ago.
Removed by mod
Wow! Thanks so much, doctor!
But wait- how is any of that going to stop me from dry heaving every morning before the thought of food even enters my mind?
And you never told me what you thought of ERP and HRT / ComB model as therapies. Which do you consider, in your professional medical opinion, to be more important in my case? Based on my medical history, of course.
stop being so damn dramatic. I doubt you try anything suggested seriously when youre so sure of your “woe-is-me” mentality - only you can do this
You’re right. All those days in the hospital, the many doctor visits around my state, the gallbladder removal, the driving 8 1/2 hours to Minnesota and staying for two weeks… I clearly never tried anything seriously. But then, having read my medical history, know know this.
recognise that your emotions and your thinking is the problem here, so think about how to separate that from the physical action of eating - maybe needs mental health support
Please explain why not a single medical professional I have seen since January 2023 has suggested this but you have, doctor. What specifically in my medical history do you base this prognosis on? What emotions in specific do I associate with eating, doctor?
go back to bascis - babies start with foods like mashed banana, boiled pureed broccili or peas, one small spoonful and it is stopped before they decide it’s too much. Find something similar to what you do have already. Gradually reintroduce lumps into the puree
Weird, doctor. Because I thought you knew my history here. Pureed foods are not possible for me to swallow despite having tried it many times. I don’t think you’ve spent a lot of time looking at my clinical notes at all.
And you still haven’t explained why you called the Mayo Clinic expensive when it cost me $120.
Removed by mod
I wonder how you think you come across in this? 😬
Well don’t worry, doctor. You won’t have to suffer to me anymore.
I “told the whole internet” something that multiple people specifically requested I update them on. I didn’t even want to.
Thanks for ruining my day. I look forward to you harassing me more elsewhere on Lemmy.
Removed by mod
And thanks for ruining the first good fucking day I’ve had in like six months, doc. You really taught me a lesson. Don’t worry, you won’t have to deal with my “whining” in Casual Conversation again.
I can’t wait for you to start following me to other communities and harassing me there too.
Removed by mod
She never told me that before in my entire life until this morning, doctor.
It’s weird, for someone with such intimate knowledge of my case, you keep getting a lot of very major details wrong.
And the stuff about my mother was stuff that I thought was amusing.
Anyway, you got what you wanted. You a stranger on the internet unhappy when all I wanted to do was give the update people asked me to give and I’m leaving this community.
Two things though before I go:
Can you please give me a list of other communities I will need to leave because you disapprove of my presence in?
Can you tell me what you think about ERP and HST / ComB model therapies since I’ve asked you three times now and you are a doctor with an expertise in parasympathetic nervous system behavioral issues?
You think $120 is “so much?”
