day of 3/19
Went to the copy shop to have the SEID info I'd put together for my PCP dr copied, then to the office. i always take a book to fill the time. Good thing, he was running an HOUR late -- by 11AM! When they finally puut me in an exam room, i was beat and lay down on table. Iwas there to see hom about losing my balance musltiple times a day, but my busy little mind spent the who;e time thinking about what I would say to him in 90 seconds when I gave him the packet. Finally he cane and dwe addressed the balance issue and came up with a plan to figure it out -- ENT guy is next.
So after that I gave him the packet and my 90-second review and asked hom to PLEASE read it before my next appt in 2 wks, which I had already made, JUST to addess the CFS/SEID. He thanked dme and said the chances he'd read it were "sslim to none". WRONG ANSWER, but he was already out the doior. I asked 2 or 3 of his office ppl and 1 nurse to PLEASE "kinda nag him" to read it. Also asked one of the office folk to find out, if they would/could, if he's still in tthe "it's all in yur head" camp, telling her if he was, I'd have to find a new doc. She got a very serious expression, conferred several minutes with another girl in the office, and promised me she would gently nag him and find out if he doesn't believe CFS/SEID is a real thing and let me know.
That was a lot of stress, so I took the rest of the day to rest and recover. Light day tomorrow; good!
So after that I gave him the packet and my 90-second review and asked hom to PLEASE read it before my next appt in 2 wks, which I had already made, JUST to addess the CFS/SEID. He thanked dme and said the chances he'd read it were "sslim to none". WRONG ANSWER, but he was already out the doior. I asked 2 or 3 of his office ppl and 1 nurse to PLEASE "kinda nag him" to read it. Also asked one of the office folk to find out, if they would/could, if he's still in tthe "it's all in yur head" camp, telling her if he was, I'd have to find a new doc. She got a very serious expression, conferred several minutes with another girl in the office, and promised me she would gently nag him and find out if he doesn't believe CFS/SEID is a real thing and let me know.
That was a lot of stress, so I took the rest of the day to rest and recover. Light day tomorrow; good!
Replies
Dr appointments are SO hard on us! How crappy to have illnesses that make even seeking out treatment so difficult. And hard to advocate for ourselves from bed! I\'m sorry your Dr replied in that way. Oh how many times I\'ve printed out things, copied info, written pages of notes, etc for medical professionals. And usually going over it in my mind hundreds of times beforehand. Don\'t give up on them though. There ARE great ones out there who believe us, want to help and take the time to listen. I have a wonderful team that I\'m grateful for and I know lots of fellow sufferers that also do.
There are \"good doctor lists\" online if you are interested.
Supportive hugs...
Thank you, loveandlighttoyou! I appreciate the support and encouragement. I know it\'s a challenge for *many* of us to find appropriate caregivers. This was just the first appt where I mentioned CFS/SEID to him in about 4 years... I\'d hoped he might have opened his mind a little since then... I guess not.
good doctor lists\"? I can\'t think of what I would google to find such things... Do you have any links or suggestions where to find them?
Thank you so much. I hope you have a terrific day!