About three years ago, I was in a psychiatric unit (nothing new for me) except this time the psychiatric PA determined that she needed to start with a clean slate. She discontinued all of my psychiatric medication and started me on just one. Sadly, within 3 days of discharge I had serious reactions to that one medication and had to be readmitted to the psych unit because I was unstable on absolutely no medication.
I also became increasingly ill. Over time I developed a chronic nausea that would not abate. A year in, it was so bad I was back at the psychiatric facility because I wasn’t sure I could live my life like that any longer. Two years in and I had sort of learned to cope.
Almost three years in, either I had just become used to it being a part of my life, or it had abated some. I still was in pain and felt terrible, but the intensity was less. Then suddenly, when my pdoc restarted some meds, it disappeared.
Both my neurologist and my psychiatrist had thought it was a neurobiological issue. My labs were wonky and there were things to indicate that it wasn’t psychosomatic. It’s just kind of astounding how much better I feel.
Anyway, through the process of meeting with specialists, surgeons, etc I learned to keep a book with all of my labs, scans and tests organized by type and carry it with me to each appointment. It was my way of advocating for myself.
It’s easy for me to get into an appointment and just kind of freeze. I forget what I want to talk about or what is important to me that day.
So now, even with my mental health providers, including therapists, I prepare lists so I don’t have to Memorize all of the things that I want to say or cover with them ahead of time. It’s been really useful for me so that I can make sure that I cover all of my bases with my providers and also so that I don’t get so stuck when talking to them. It really helps if I get with one who has a tendency to steamroll because I know what needs to be covered and I can show them the list.
It’s been a powerful way for me to help advocate for myself. It only takes a few minutes of my time and it is really useful to do. I feel so much calmer, organized and in control when I have a list. I highly recommend it.