Re-Emerging

[estherchaya]

After my last post, I disappeared again.  This was not by design.  On May 29th, I was supposed to see my gastroenterologist in the afternoon.  Before leaving for my appointment, my home health nurse came to change the dressing on my central line (a Hickman catheter).  When he was here, he was concerned, because it looked like my line was getting

Comments

[magid]

I remain appalled by what you've had to deal with on the health front, and in awe that you cope as well as you do.

I hope the therapist is a good fit for you, and that the gastroenterologist has something useful to suggest. (eta: and that you successfully get the diagnosed-while-delirious stuff taken off your record.)

[estherchaya]

My biggest concern now is that the gastroenterologist will no longer take me seriously, because apparently they are reading a lot into what I said and did in my delirium. Apparently, I was messing with my feeding tube pump, saying I was throwing up when I wasn't (they concluded I was having nightmares of vomiting and thought it was real), and other things. Unless I can convince her that the real me has no connection to that delirious me that she saw, I'm pretty much done at Hopkins. But no other hospital will touch me either - because they'll all refer back to Hopkins' records in order to treat me. There are only two motility specialists in the state of Maryland - and they're both at Hopkins. Argh.

[estherchaya]

Thanks re: your eta. My primary care provider (a CRNP) suggested that I may want to get a psychiatrist to reevaluate me now that I'm not sick (or as sick as I was in the hospital) to support my request for a HIPAA amendment to my hospital record. She's probably not wrong that this would help.

[magid]

I hope this helps; it would be insult to injury to have time you were delirious and unlike your regular self held against you in finding treatment after so long wrestling with the gastroparesis.

[estherchaya]

Well, at the very least, it would leave me with a feeling of vindication. Right now I feel a bit like I'm losing my mind. It's not a pleasant feeling. Having another reputable psychiatrist tell me I'm not crazy would probably ease my mind a little!