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.
I can’t think of the exact quote right now, but I’m reminded of one to the effect of us tending to see the darkest motives in those closest to us, while being more likely to give more distant strangers a greater benefit of the doubt.
I’ve often found it to be true, where there is a temptation to judge a given behavior in a harsher light in someone we know well, than the same behavior would be judged in someone else.
I suspect your moms actual clients actually do get the benefit of a greater degree of professionalism than you do.
Interesting way of looking at things. And sure, she is probably much more professional with them. But the depths of her craziness… honestly, between her and my equally insane father, I’m glad I came out relatively sane. My brother did not. He’s currently taking absolutely massive doses of shrooms because he thinks it’s psychologically vital (no doctor has told him this) while his “supervising” wife sleeps next to him and writing on Facebook about his hallucinations and how they are so important psychologically to him. Like a month ago he was touting the benefits of microdosing. Now he’s at the point where he’s so disassociated from the world when he takes them that he thinks he has conversations with strange beings while being in other worlds. At least he knows that isn’t real, but for how long?
And that’s just his latest craziness.
I stick to weed. It helps with my neuraglia pain and it’s sure helped on this trip when I can get back to my room and vaporize some after dealing with my mother.
I’m sorry to hear about this setback. I’m crossing my fingers for you for finding a solution to your health troubles.
She’s also quite hard of hearing despite having hearing aids,
One thing to help you out with her on this. My aging mother was having the same problem and in talking to her I learned how isolating this becomes. There’s only so many times a person can ask someone to repeat themselves before its socially awkward. Many times the hard-of-hearing person eventually just gives up and nods pretending to hear and just becomes not part of the conversation. They can be a room full of people and be totally alone.
I found that her hearing aid brand has an external (bluetooth) microphone option and got her one. These are called “Buddy mic”, “Handy mic”, or “Partner mic”. It is a small rechargeable batteried mic that can lay flat in the middle of table of people (omnidirectional mode) or clipped on a lapel (unidirectional) that will isolate just the one person its next to (to combat loud noisy places and bring out the voice of the person being talked to). There’s usually a smartphone app the user can control modes and further filter sound. The one I got also has a 3.5mm audio input so you can plug it direction into a sound source like a TV which will pipe the sound right into the user’s hearing aids.
Find out her hearing aid brand and model and do a google search to see if hers has one. It will likely be a couple hundred dollars but it is a GAME CHANGER. My mother has had it and used it for months now and uses it all the time. If she is having trouble hearing in a conversation, she’ll quietly pull it out, set it in the middle of the table and is back in the conversation being able to hear everything and respond. She loves it!
The same may help your mother, and its possible some of the friction you’re experiencing from her may be her frustration with being sidelined because she can’t hear and her getting frustrated with that and it coming out on you.
Thanks for letting me know, although she absolutely never listens to any medical suggestions I might make even though she has plenty about me. She does say her hearing aids don’t work very well anymore, so she clearly knows she has to get new ones. And she does take care of her health. Hopefully she’ll get the right ones that do something like that.
Hi! I just read this, and man that is such a frustrating situation to be in. I dealt with severe food aversion when I was in high school, and ended up getting a diagnosis of gastroparesis. Similar to you, there was a day where I just suddenly got “better”, although I never recovered to the point of having a normal appetite for a person my size. I never reached the point where the smell of food triggered a gag reflex, but I’m definitely familiar with how personally we take our relationships with food and how that must be affecting you and your family. I’ve been in situations where I desperately wanted to eat something in order to make someone’s effort feel appreciated, but haven’t been able to because of my body. When I read about you not being able to get a meatball sub for your daughter, it brought up feelings I hadn’t thought about in over a decade.
Do you know of any mutual aid groups that could help you with transportation or lodging or financial aid in Rochester, if you ever have to go back? It may be worth looking for other ways to access care
Thanks. I do know they have financial aid and such. My mom is wealthy and offered to pay for it, which I really couldn’t turn down despite her insanity. I wouldn’t mind staying in a Motel 6 or whatever, but I can’t complain about being in a much more comfortable AirBnB. She’s also offering to help cover the massive medical debt I’m already in and that will only get larger, so I can’t act like I’m in any way ungrateful since I really appreciate the help.
However, I also did not expect it to be this bad. And I really didn’t realize how bad her memory and hearing are. She’s 82, so I should have just expected that, but when it’s your own mother, you don’t really think of her as this old lady who doesn’t have all of her faculties. Not unless it’s really obvious.
Anyway I will not do that next time, if there one, so I will definitely be looking at other options. If I’m unlucky and I do have to come back, it might be the summer, in which case my wife and daughter can come along.
Thanks again.
No problem! My mutual aid budget is reserved for helping a trans friend move out of Tennessee right now, but please let me know if you have an emergency expense come up and I might be able to help
Thank you!
I hope they keep looking into it and get something figured out. I assume they’re doing basic blood work like a comprehensive blood panel? Autoimmune diseases? Unfortunately, my experience in the medical field is that sometimes if they can’t figure it out relatively easily, they sort of give up, and eventually the condition gets worse and becomes more obvious and easier to diagnose.
I’ve had every test you can imagine.
When I was there, I had a lot of tests… but they never tested for type 1 diabetes, and it turned out I had type 1 diabetes.
I’ve had that tested elsewhere. I’m only here because every test and even gallbladder surgery has failed.
Hey. No need to answer. Probably already tested for it. But if not, consider pancreas issues. It can annoy everything around it when crabby.
I had a HIDA scan which would very likely have picked up any abnormalities there, but also plenty of blood panels that would likely detect it. The gastroenterologist hasn’t brought it up as a possibility, but I can mention it.
I am curious about your daily diet.
Fasting responsibly with plenty of water has been used for thousands of years as a healing mechanism or reset for gastrointestinal issues. Perhaps a hard reset may help and then slowly reintroducing things like organic bone broth and working towards nutrient rich whole foods and vegetables, with lots of water and good sleep.
This is coming from a place of love as I am a fan of Flying Squid.
I am rooting for you. Sending good thoughts your way.
This man is a good resource on fasting if you’re interested— Dr. Dominic Dagostino
My ‘daily diet’ is Ensure and V8 with the occasional chai latte or root beer.
If I could eat vegetables, I would eat vegetables.
I recall you saying part of the problem you have is hypersensitivity to the scents of various foods. If you can tolerate V8, I’d assume you can consume vegetables in liquid form in general? You could consider getting a juicer and making some different blends. Personally, when I was starving, I tried surviving on protein powders and very soft foods but that wasn’t working. Eventually I made chicken broth, chicken and blended it up sometimes with potatoes, corn or rice, and it doesn’t sound appetizing but actually worked great and saved me from starvation. I found some neutral tasting protein powders that were good with juice or broth too… pea and hemp worked for me.
I can tolerate V8 if I don’t inhale and get rid of the glass/can immediately. It’s more of a last resort thing.
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?
Even morning sickness tops out at 7-9 months, lol. Hang in there. Hopefully they sort you out. Mayo is certainly the right place to be trying.
Thanks, I hope so.
And yeah, my wife had morning sickness almost her entire pregnancy. It’s one of several reasons why I never brought up the idea of having a second child.
It’s tough having parents that aren’t able to understand what you’re going through. I know all about that.
Keep seeing doctors. Specialist. Just keep going, someone will figure it out and you’ll be glad you didn’t give up on it.
Chin up, brother
Thanks. I just wish I could have taken virtually anyone else. But she was my only option. And she’s paying for the AirBnB. Not for gas though.
