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.
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.
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.
I think one could plausibly add "overbearing" and "annoying" based on what we've seen, but there's definitely more to be unpacked here than is appropriate on an anonymous internet forum.
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
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?
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!
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.
So you're a grown adult, with a wife and daughter, and your mum is paying for your stay, and you're sat on the internet bitching about her? Get a grip
Have you even looked up the dictionary definition of aversion?
aversion
Definitions from Oxford Languages · Learn more
noun
a strong dislike or disinclination.
"he had a deep-seated aversion to most forms of exercise"
Phobia is a fear of. Aversion is a dislike of. So no its not a phobia unless you are scared of food. In the grand scheme of medical research they are pretty damn similar and your scientific paper link just sums up that the brain and nervous system have control over digestive functions. Congrats, your mother-funded trip and your expensive doctor diagnosed that you dislike food and so react when you are made to try it. They called you whiny in medical speak and pointed you to the mental health people