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Old 09-27-2009, 12:51 PM #1
dparhat dparhat is offline
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Default Advice about support

My wife was diagnosed with PN back in January 2009 it has been extremely painful for her and very hard for her to deal with. She gets very emotional and short with me almost daily. I was looking to find a support group or something like that in the San Diego area. Or any other advice on how to help her and I deal with PN? I am willing to go to a support group for spouses as well.

Thanks David
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Old 09-27-2009, 02:00 PM #2
stagger stagger is offline
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Hi David,
Does she use a puter if so she is welcome here and the information that is at hand is only a keyboard away.
Lanny
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Old 09-27-2009, 02:25 PM #3
dparhat dparhat is offline
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Quote:
Originally Posted by stagger View Post
Hi David,
Does she use a puter if so she is welcome here and the information that is at hand is only a keyboard away.
Lanny
Yes she has one I have let here know about this forum and hoping she will join in her own time. I was looking for some support for myself also
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Old 09-27-2009, 03:28 PM #4
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There is an anger phase to any chronic disease state.

Anger that relief cannot be had quickly.
Anger that it isn't fair.
Anger that doctors can't help much.
Anger realizing that this may be for life.

All people have to go thru this with any serious painful, or debilitating condition.

Eventually people do come around. And sometimes there can be improvement. But that takes time.

If this is severe for you and your wife...there are counselors that deal with chronic pain, etc, who can help. Certainly, coming here and seeing the posts of others in the same boat may help too.

I think this is a wonderful outlet here, myself.
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Old 09-27-2009, 10:43 PM #5
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I'm unfortunately right in the middle of the angry/scared faze and desperately need to snap out of it. I'm off to my first chronic pain support group meeting on Wednesday and hope it will lift my spirits. Is there anything like this in your area?
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Old 09-28-2009, 01:04 AM #6
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Default David and 'Since'? Scared comes with the territory!

And I have had every right as you, David about your wife and you, Since, to be scared spitless at times! It took me a very lucky ONLY 14 months to get diagnosed, others here taught me to 'keep at it' and I did. I have an auto-immune neuropathy and I've considered drastic options at times? Only to learn of others here who aren't as lucky as I to have been diagnosed in time to help or can't find competent docs who CAN help! I've been lucky to live in an area where there 'happen' to be lots of very good smart docs and they even [at rare times] try and work with each other!
I Encourage your wife, David and you, 'since' both to take a peek at the 'Sticky's' at the top of this forum This will give you some of the legit and other researches we all have picked up in trying to understand better the WHAT ALL THE FUDGE that is happening to us!
Mrs D is super right in saying we have what are 'categorized' as chronic diseases.... And YES! Honestly there is and must be a set of mourning stages that you go thru..there is no doubt about that at all! But, we live on as we will? We can moan a whine [and I try not to too often?] when we need to, but then DEAL WITH IT! Only we can do what needs to be done-listen to your bodies and hearts and minds. IF they are yelling this 'isn't' right? Go with it! Because you likely are right. That is what second, third and more opinions are for! Our neuro issues aren't always easy to diagnose, and the options for pain relief are limited. I've opted to go w/out neuro pain meds in all but the worst circumstances as the 'side effects'? To put it politely? They aggravate other medical immune issues.
Knowing what all happens that causes your pain, then learning all about the drugs [and their possible additional consequences?], then getting any and all physical therapy you CAN get to get up, about and moving! IS essential to a person's well-being! I call it revenge on this crud. Read all of the NT member's stories...one will fit you I'll bet.
Just know that we are here! We understand. We all have dealt with the fears, and some face it daily. It becomes a part of life as it's now been re-defined. Don't be shy about asking questions, even silly ones? Sometimes it's those 'little things' that can give you clues to the real problems.
Sort of, you have to be your own 'medical detective'? And I have to say that since I've found NT and it's predicessor? I've learned enough to not only get me a diagnosis, but treatment and I've found a super bunch of people here who really care! Keep at it and go for it! After all, what have you got to lose?
Make lemons into lemonaide...who's got the neutrasweet or lo-cal alternatives? We've got LOTS of lemons, put them to use! 's - j
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Old 09-28-2009, 11:09 AM #7
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There is a support group for PN in San Diego the 2nd wednesday of every month listed at the neuropathy association.
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