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Focus Group On Disabilities...


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#1 Marcianna

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Posted 26 April 2009 - 12:12 PM

I am attending a focus Group with Student Nurses from Tacoma Community College on the 28th of April.

We will be discussing medical issues and how nurses can be more aware of our needs as persons with disabilities. I am not sure how long I will get to talk as a representative of PWN's But please give me your feed back. What would you like me to try to get through? what are the issues that you are most concerned with? I wish I could have given you all more notice on this, but I just found out myself. Thank you! Your input is much Appreciated!!!

#2 dogdreams

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Posted 26 April 2009 - 02:55 PM

Rule #1: We are not making it up! Don't dismiss our symptoms as psychological. Cuz they ain't.

#3 Lais02

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Posted 26 April 2009 - 05:54 PM

Rule #2: N has no effect on our intelligence, so don't talk to us like we're in kindergarten (unless we are smile.gif )

#4 BaRb79

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Posted 26 April 2009 - 07:26 PM

Rule # 3.
You can't catch my N/C. Ask questions...Im very happy to tell what I know. But don't treat me like a diease pls.

#5 jenji

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Posted 26 April 2009 - 09:20 PM

Rule #4

If you don't understand this illness, go ahead and ask but never assume and make idiotic comments that are insensitive and dismissive. Comments like: oh, well we're all tired, I wish I could take a nap too.

Also, I really think you should impress upon professionals Rule #1:
Investigate, investigate, investigate and do not mimimize or dismiss a person who is clearly suffering as having a psychosomatic condition just because it doesn't show up in a routine blood test. When hearing sx with fatigue, sleepiness, passing out (could be cataplexy), for the love of God, order a sleep study before you start throwing psychological diagnoses around. It's ignorant and traumatizing for those of us who have been through that show, only to later find that we indeed have a chronic neurological illness. If you ask me, that kind of response from a medical professional is a form of malpractice, as it causes trauma and undue stress for the patient.

jenji

#6 Marcianna

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Posted 28 April 2009 - 07:58 PM

Thank you to everyone who responded. It went very well!
The nurses were extremely interested in what we go through. Some of them had no idea what N was and were rather shocked about the cataplexy... It was a group discussion with about 25 people involved so it was difficult to talk about it much with out dominating the conversation. I actually figured it would be. So I made a point of making sure I gave them notes with all the information I could find....including the things you mentioned here.

Congratulate yourselves!

We just helped create better more aware medical professionals!

#7 sleepless sleeper

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Posted 28 April 2009 - 09:45 PM

QUOTE (jenji @ Apr 26 2009, 08:20 PM) <{POST_SNAPBACK}>
Rule #4

If you don't understand this illness, go ahead and ask but never assume and make idiotic comments that are insensitive and dismissive. Comments like: oh, well we're all tired, I wish I could take a nap too.

Also, I really think you should impress upon professionals Rule #1:
Investigate, investigate, investigate and do not mimimize or dismiss a person who is clearly suffering as having a psychosomatic condition just because it doesn't show up in a routine blood test. When hearing sx with fatigue, sleepiness, passing out (could be cataplexy), for the love of God, order a sleep study before you start throwing psychological diagnoses around. It's ignorant and traumatizing for those of us who have been through that show, only to later find that we indeed have a chronic neurological illness. If you ask me, that kind of response from a medical professional is a form of malpractice, as it causes trauma and undue stress for the patient.

jenji

eloquent. I sometimes imagine you writing with a fluffy quill.

#8 sleepless sleeper

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Posted 28 April 2009 - 09:49 PM

QUOTE (Marcianna @ Apr 28 2009, 06:58 PM) <{POST_SNAPBACK}>
Thank you to everyone who responded. It went very well!
The nurses were extremely interested in what we go through. Some of them had no idea what N was and were rather shocked about the cataplexy... It was a group discussion with about 25 people involved so it was difficult to talk about it much with out dominating the conversation. I actually figured it would be. So I made a point of making sure I gave them notes with all the information I could find....including the things you mentioned here.

Congratulate yourselves!

We just helped create better more aware medical professionals!


KUDOS TO YOU!
Thank you, Ms. Moderator Extraordinaire! You rose to the occasion, and it sounds as though you shone beautifully. Thank you so very much for doing this.


#9 dogdreams

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Posted 28 April 2009 - 09:58 PM

Tell them they can test for a patient faking C or not by testing their reflexes. True C causes a patient to lose their reflexes, which you cannot fake. Then they'll know it's neurological, not psychological.

#10 dogdreams

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Posted 28 April 2009 - 09:59 PM

Oh *BEEP* I missed it. Oh well. Maybe next time. crap

#11 jenji

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Posted 28 April 2009 - 10:04 PM

QUOTE (sleepless sleeper @ Apr 28 2009, 10:45 PM) <{POST_SNAPBACK}>
eloquent. I sometimes imagine you writing with a fluffy quill.



..stop looking in my windows. smile.gif

jenji

#12 Marcianna

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Posted 30 April 2009 - 05:15 AM

QUOTE (dogdreams @ Apr 29 2009, 03:59 AM) <{POST_SNAPBACK}>
Oh *BEEP* I missed it. Oh well. Maybe next time. crap


=) no worries! I am sure the oppurtunity will arise again!!

#13 Henry G

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Posted 30 April 2009 - 02:43 PM

QUOTE (BaRb79 @ Apr 27 2009, 01:26 AM) <{POST_SNAPBACK}>
Rule # 3.
You can't catch my N/C. Ask questions...Im very happy to tell what I know. But don't treat me like a diease pls.


I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually smile.gif

#14 Marcianna

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Posted 30 April 2009 - 05:26 PM

QUOTE (Henry G @ Apr 30 2009, 07:43 PM) <{POST_SNAPBACK}>
I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually smile.gif


OH!!!! so that is how I caught it!!! from one of those LAZY bastards I use to date! ....... freakin figures!

#15 sleepless sleeper

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Posted 30 April 2009 - 07:57 PM

QUOTE (Henry G @ Apr 30 2009, 01:43 PM) <{POST_SNAPBACK}>
I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually smile.gif


drum roll "bah dum bump"

#16 sleepless sleeper

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Posted 30 April 2009 - 07:58 PM

QUOTE (Marcianna @ Apr 30 2009, 04:26 PM) <{POST_SNAPBACK}>
OH!!!! so that is how I caught it!!! from one of those LAZY bastards I use to date! ....... freakin figures!


date a vampire

#17 Lais02

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Posted 30 April 2009 - 10:09 PM

QUOTE (sleepless sleeper @ Apr 30 2009, 05:58 PM) <{POST_SNAPBACK}>
date a vampire

???? is this a new cure!?

#18 Marcianna

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Posted 01 May 2009 - 10:54 AM

QUOTE (Lais02 @ May 1 2009, 03:09 AM) <{POST_SNAPBACK}>
???? is this a new cure!?





girl what have I told you about those vampire? all is well and good till you lose a quart or more of blood....

#19 sleepless sleeper

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Posted 01 May 2009 - 02:24 PM

QUOTE (Marcianna @ May 1 2009, 09:54 AM) <{POST_SNAPBACK}>
girl what have I told you about those vampire? all is well and good till you lose a quart or more of blood....


drum roll "bah dum bump"

#20 dogdreams

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Posted 01 May 2009 - 09:29 PM

QUOTE (Henry G @ Apr 30 2009, 12:43 PM) <{POST_SNAPBACK}>
I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually smile.gif

HAHA! Cataplectics do it on the floor and I'm a PWN I'll sleep with anyone! Totally contagious. Like yawning. wink.gif