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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by messadivoce on December 26, 2004, at 15:35:16
Did everyone survive Christmas? How's everybody feeling? Do some people still have company? Who gets to go back to their T this week? I envy those who do.
I am still at home and thank goodness, I start working tomorrow. I have had just a little too much family togetherness. But as for my T, I'll have to wait to see her until the 1st week of the new year. :-(
Posted by annierose on December 26, 2004, at 15:59:47
In reply to And the dust settles, posted by messadivoce on December 26, 2004, at 15:35:16
Hi M -
I'm taking a break from getting ready for some company. AND ... I had to work today (retail) so I'm beat. I like entertaining, so once they arrive, I'll relax and enjoy the conversation.
Yes, I do get to see my T this week! I was so surprised too. I'm sure it has to do when the holiday fell this year too (Saturday). And I can't wait to share my holiday angst with her.
All in all, I had a very nice Christmas. My children were thrilled with Santa (one still believes) and are playing so nicely with one another (please let this period last forever). My husband was very helpful Christmas morning and that was the best present he could ever give to me. And I look forward to saying good-bye to 2004. Did not like this year at all!!
Posted by peacefeline on December 26, 2004, at 16:40:39
In reply to And the dust settles, posted by messadivoce on December 26, 2004, at 15:35:16
Hi, and very good questions!
I feel relieved the holidays are over. Usually I like them, but this year was too full of losses and I just want to be done with it.
My only company who visited us was my dad, who left this morning. But we'll see him later in the week. We are always happy to see him, especially the kids.
And no, I don't get to see my T this week. :-(
Have two weeks off, so twenty-one days between sessions. It's a really long time. I did have a message from her on my voicemail which I sometimes listened to, but we changed local phone companies and it's gone to wherever messages go when they disappear.
I will be very glad to get back to seeing my T in January, but I'm also glad she takes time off every so often because I would be in a world of hurt, if she burned out and had to quit before I'm ready.
Another question with this same thread: How many of us had one of our worst years EVER in 2004?
Posted by gardenergirl on December 26, 2004, at 17:55:51
In reply to Re: And the dust settles, posted by peacefeline on December 26, 2004, at 16:40:39
My mom just left with my sister and her fiance. Aaaaaah, it's quiet again. My mother can not let two minutes go by of silence without filling it. Inane stuff. I never realize how much I appreciate quiet until I have to be around my mother.
My sister and her fiance will be back tomorrow for a couple more days, and then we all go to Detroit to see extended family. That should be fun, but I can easily get overstimulated, so I do need my quiet time.
All in all, it was a quiet holiday. (Did I just write that?) I guess I mean quiet in that we were homebodies and just stayed in, ate good food, and went to bed early.
I see my T Wednesday, and I am looking forward to it. I only had one week off from him, so it wasn't so bad. And 2004 wasn't so bad either, thank goodness.
gg
Posted by Fallen4MyT on December 26, 2004, at 19:48:51
In reply to And the dust settles, posted by messadivoce on December 26, 2004, at 15:35:16
Hi well I survived and did well we kept it quiet and all but I didnt get to see family and am not sure I was up to it physically and mentally ...So it was OK....My T I will be seeing and that is good not just cause I have issues to work on but because it will be an outing lol odd as that sounds I do not do as much in winter and it's bad for me...its a good way to get me out and all. Sad I know lol.
> Did everyone survive Christmas? How's everybody feeling? Do some people still have company? Who gets to go back to their T this week? I envy those who do.
>
> I am still at home and thank goodness, I start working tomorrow. I have had just a little too much family togetherness. But as for my T, I'll have to wait to see her until the 1st week of the new year. :-(
>
>
Posted by Dinah on December 26, 2004, at 21:34:01
In reply to And the dust settles, posted by messadivoce on December 26, 2004, at 15:35:16
Posted by B2Chica on December 28, 2004, at 17:48:22
In reply to Re: And the dust settles, posted by Fallen4MyT on December 26, 2004, at 19:48:51
i have a few days of peace. made it through.
have had LOTS of sleep last couple days and i think it helped. i feel good today. dare i say 'normal'???-more major social interaction cuz of new years eve. i wish i could make some excuse and just stay home alone (emphasize ALONE). This mask grows weary quicker and quicker- can't keep it up like i used to.
though i haven't technically started therapy with this new T he recommended a book and i just went out and bought it today. i'm anxious to start reading it. i don't see him till the 6th. feels like an eternity. but somehow having this book is like having a little part of him near. and starting next monday i can call pdoc if i need to.
(BTW, i did call pdoc's work last week and left message about AD but don't think he'll get it till monday).
thanks and hope everyone has a good new years.
b2c.
Posted by Lonely on December 30, 2004, at 2:15:24
In reply to And the dust settles, posted by messadivoce on December 26, 2004, at 15:35:16
Starting in late Nov. we were besieged by a battery of tests for my spouse who had some significant neurological symptoms. I finally got brave and tried to cancel his Dec. 10th appt. only to be rebuffed by the neuropsych office (although they did it very nicely). After my spouse rescheduled for a too-late date I called them back; of course they were getting testy and I ended up taking him in at the original date of Dec. 10th - and missing Christmas activities. It was for neuropsych testing. I spent many long hours writing up his med history (18 pages) and my observations instead of doing Christmas letters to friends.
The neuropsych thing followed a screw-up with a sleep-study test in which they swore up and down it had to be finished on the Thanksgiving week-end. Bull. Again, messed up the holidays. But, I fell for it. Then they didn't tell me they were letting him sleep in because it was a week-end, so, when I didn't hear from him by 6:45 I called him. Then, I hadn't heard from him by 8:30 and called again, this time telling him to get his rear home. I was scared; he's got brain damage, memory loss, and history of neurological disorders. I raised havoc w/sleep center - they even did the wrong test. Later the neurologist's office got involved. THE PROBLEM IS THAT HEALTH CARE PROVIDERS JUST DON'T NOTICE THAT BRAIN DAMAGED PEOPLE SHOULD NOT BE SEEN ALONE FOR ANYTHING!!! No matter how pleasant the patient seems to be, there are some wheels that just don't turn right!
Suddenly there was an unexpected brain MRI on Dec. 19th. They didn't control the bleeding from the shunt (IV for contrast) and he started bleeding in the changing room. I dragged him back to the technician. The techie did not use sterile procedures; he put tape on the chair and then on my spouse's arm close to the "hole." He did not wear gloves either and my spouse has Hep C !!!! Well, would have served them right! They also forgot to tell him to take wallet out of his pocket so the magnetic strip on his bank card was wiped out - couldn't use it for gas the next day. Then the joker of a radiologist misinterpreted the films. I just found it out two days ago from the radiologist who showed us all the new lesions in my spouse's brain. Today my spouse took a sudden turn for the worse.
So, two days before christmas, Dec. 23rd, he was back at the neuropsych's office finishing the testing which really took about 4-1/2 hours all together although they ranted and raved about how it would take 8 hours. It was good of her to finish up on such short notice but somehow, I feel like smacking some health care workers up side the head. Yes, I'm venting!
Christmas Day was alone, no family for hundreds of miles, a spouse crying and myself crying. We went to a restaurant for dinner, one of the few in the area open on Christmas Day. We actually had a delicious meal of blackened catfish, salads, hot yeast rolls, peach cobbler, gelatin salad with fruit & nuts, & tapioca. Then looked at Christmas lights and called my mom on the other side of the country.
Oh, well, I just hope my spouse is still walking and talking next year at this time. I feel cheated; I used to love Christmas - this year I've forgotten how to love, I guess. Okay, I guess deep down I'm scared.
Posted by peacefeline on December 30, 2004, at 20:44:13
In reply to Re: And the dust settles, posted by Lonely on December 30, 2004, at 2:15:24
Lonely,
You could use some major hugs, I think! I'm so sorry this all happened around Christmas.
My h is brain damaged too, mostly from car accidents but he's had 20 separate injuries to his head. It's a wonder he can function at all. And, like you, I've noticed how nearly all MD's and other medical people are terribly ignorant about head injury! I think it hasn't been well-taught in med schools. They can save the person's life in a case of bad trauma to the head, but whatever comes after that, in the following weeks, months & years, is a total mystery to most doc's.
We finally found a neuropsychologist who is awesome and has made all the difference. But my h still strugges, 19 months after the last car wreck.
I hope that your h can be helped. Is it from injuries that he has these lesions? How long have you been dealing with these problems?
Can you believe the stupidity of that MRI tech? Maybe the person was new. But then they should have been supervised more closely.
Best and warmest wishes to you and your h.
Susan
Posted by Lonely on December 31, 2004, at 17:31:23
In reply to Re: And the dust settles, posted by peacefeline on December 30, 2004, at 20:44:13
Thanks, Susan - you're absolutely right. And, crying and raging as I left T's office yesterday, she did hug me. First time but I always shyed away from her.
My hubby has lesions in the corpus callosum that have destroyed parts of his brain from multiple sclerosis. In a sense, it literally eats up the brain over a period of time - faster for some people and very slow for others.
I developed a workshop on customer service for a major hospital here a year ago. One of the points I made (via role play) was that any time a brain injured person is hospitalized (or in a clinic) there should be another person who is contacted at all times re tests, meds, procedures, discussions, permission, whatever. When my hubby was in hospital 2-1/2 years ago with Stroke/MS attack they hauled him off for a heart catherization and never told me. I thought they had taken him away because he had died. I read quite a few people off the riot act - I was not nice. But, not sure I got through to them.
Ironically, just yesterday the company that makes one of the MS injectable drugs talked to my hubby on the phone but never talked to me. They still don't understand that he has dementia (mild) as well as manic depression and MS brain damage. At least the neurologist's office has caught on part way. Now, I've got to work on the Copaxone people.
As some one in a similiar situation I would like to extend my warmest regards and understanding to you and your hubby also.
> Lonely,
>
> You could use some major hugs, I think! I'm so sorry this all happened around Christmas.
> My h is brain damaged too, mostly from car accidents but he's had 20 separate injuries to his head. It's a wonder he can function at all. And, like you, I've noticed how nearly all MD's and other medical people are terribly ignorant about head injury! I think it hasn't been well-taught in med schools. They can save the person's life in a case of bad trauma to the head, but whatever comes after that, in the following weeks, months & years, is a total mystery to most doc's.
> We finally found a neuropsychologist who is awesome and has made all the difference. But my h still strugges, 19 months after the last car wreck.
> I hope that your h can be helped. Is it from injuries that he has these lesions? How long have you been dealing with these problems?
> Can you believe the stupidity of that MRI tech? Maybe the person was new. But then they should have been supervised more closely.
> Best and warmest wishes to you and your h.
> Susan
Posted by peacefeline on January 2, 2005, at 17:07:45
In reply to Re: And the dust settles » peacefeline, posted by Lonely on December 31, 2004, at 17:31:23
Thanks, Lonely!
You sound plenty strong enough to handle this, though you might not always think so. How lucky for your h that he has someone to advocate for him (and, indirectly, for other brain-injured people!)
I can vouch for your statement that brain-injured or -damaged people need to have someone accompany them to appointments. My h had his very first appointment ever with a psychiatrist in November. It was an evaluation and took over an hour of face-time, plus the doc checked over a lot of files, etc. Anyway, I was allowed/requested to sit in on the meeting. Good thing, too, because most of what was said was completely forgotten by my h within two weeks! Even the most important parts! He has no memory of it whatsoever. I did warn the doctor in a letter so that in future visits, which I will not be in on, anything important will be written down for him to take home and look at later.
This would never have even been discovered if not for some chance conversations between me and my h. I also warned his other doctors and therapists of the same problem.
Something else you may have noticed in your h is what I've only recently discovered with mine: his sense of reality is being messed with due to the very large gaps in his memory. I thought last year that his memory looked like Swiss cheese, but now I'm thinking fishnet, more like. So his imagination "fills in" whatever facts he doesn't have. Like watching a complicated drama, but the TV keeps blinking out for a minute or two every little while, and you have to guess what's going on.
Best of luck to you in your ongoing struggles with the system. It's not fun but sometimes we get surprised with some success.
Susan
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