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 know this is distressing and depressing, but try not to let the lack of diagnosis get you down. When it comes to unusual stuff, it can take years. It took so long for my partner to be diagnosed with Endometriosis, hEDS, and POTS, literally years for each one individually. She struggles a lot because many of the things that could help her interact badly with her other meds, so she has to pick and choose what to “treat.”
Anyway, the amount of time it takes can be brutal, but don’t stop looking for answers, and don’t stop advocating for yourself.
Also, try to minimize the amount of time with your mother if you can, because that certainly isn’t helping your mental state.
Thank you. The problem is I don’t have years. I can’t just not eat solid food forever. I was overweight when this started but I’ve lost 80 pounds and the weight loss has not stopped. This is kind of a desperate last hope and we don’t know what we’ll do next.
Try not to lose all hope. As shitty as it sounds in terms of quality-of-life, lots of people are unable to eat normally. I’ve known a few who had a feeding tube into their belly. Like I said, the issue of quality-of-life notwithstanding (because we all know that’s not a great quality-of-life), there’s solutions that will at the very least keep you alive until a better solution is found.