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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Abstracts (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/27785-abstracts.html)

tayla4me 09-12-2007 05:08 PM

Hi flippnout,


I know of 2 people who have RSD/CRPS as a result of a simple venepuncture prodecure for routine bloods.
I would have thought that this would constitute the diagnosis CRPS Type 2 as they were told that the pathology staff had in fact damaged the nerves in the cubital fossa and yet they both have been diagnosed as CRPS type 1:confused:
Is it any wonder there is such confusion amongst us.
I do know however that these people have had major improvements from stellate ganglion blocks and ketamine infusions, one having gone back to work with just a tiny patch of pain in the originalinjury site.
This is a disease seems to have it's very own agenda in each and every body it chooses as it's host.
Regards
Tayla:hug:

Vicc 09-13-2007 07:52 AM

oops...have to try again

Chemar 09-13-2007 08:52 AM

I am making a request for this discussion to remain *on topic* and *within the guidelines*, which means NO personal attacks or flame posts please.

This is not singling anyone out as it is evident that more than one person is becoming personal in their comments instead of keeping the debate objective

I have removed one post and I am about to edit others that are found to contain flame comments

I would greatly appreciate everyone's co-operation on this

We want to allow open debate and discussion here, but we simply cannot overlook the guidelines in doing so.

thank you
Cheri

buckwheat 09-13-2007 09:04 AM

Dear Chemar,

I have 3 son's that are very close the fights at times were unbelieveable. But they care about each other very much. Much Love, Roz

Chemar 09-13-2007 09:23 AM

Roz

perhaps if you could read the MANY reports and VERY irate PMs we are receiving on all this you would understand that maybe others dont see this as you do

When violations of the guidelines are reported to us, we are obliged to act within those guidelines

I repeat, flames and personal attacks will not be permitted here.
Civil debate and discussion will



thank you
Cheri

Chemar 09-13-2007 10:06 AM

ok
I am back from having to rush out to take care of a very important business thingy....

I really do want to post on a lighter note because I care, as does the whole admin/mod team, about all of you and for you to feel comfortable and honest in your posting here.

We are honestly not trying to restrict free speech here, even when it becomes a bit heated.

We stay out of most discussions, even tho they may get a bit heated at times.
We value exchange of ideas and information, and rely on you, the members, to apply your own knowledge and experiences, or research articles , etc to agree with or refute other comments posted.

That is healthy debate.
Disagreement while remaining objective rather than subjective in comments

When things take a personal turn, and posts are perceived as attacks or written in a flaming manner, and when we get reports and PMs, we discuss things on admin as much as possible and reach consensus, having looked at as many aspects and views as possible, and when we act, we act in accordance with the very reasonable guidelines that DocJohn has in place.

Those guidelines really arent harsh or restrictive...they are really just guidelines most of us apply to our everyday life....to be respectful of others and treat them as we would hope to be treated.

We really dont intervene a lot, and do try to allow a lot of leeway ( the guidelines are not written in stone )

but when other members of the board, report a post we have to look, evaluate, and act as admin decisions is made.


Of course we cant all be expected to agree, or even to like one another.
But it isnt unreasonable to expect to be treated respectfully by those who disagree with us.
We all have the right to be treated within the guidelines here, just as we have to abide by them.

This is a board filled with highly intellectual and also very caring members.
Let's see these debates reflect that.

with respect and care for all members here
Cheri

buckwheat 09-13-2007 01:34 PM

Dear Tayla,

Just a thought but why did your 2 mates need to have blood drawn in the first place. Hugs, Roz

flippnout 09-13-2007 02:50 PM

Tayla4me,
I hope you are ok today! along with everyone else out here :)
That is my point there is so much confusion of this horrible moster we all have here. There has to be a study done and try to come up with a conclusion to this, otherwise I feel some docs do not take this monster as being there instead you have some docs who say it is a junk diagnosis.
That is why it is COMPLEX REGIONAL PAIN SYNDROM too complex for me, that is why I trust my doc I have now. I say find a doc you trust and knows of RSD/CRPS and go from there, I'm sure we all agree there, if some of you do not have a good doc yet I hope you find one soon. Try going to your teaching hospitals connected to a Uni. thanks

tayla4me 09-13-2007 06:22 PM

Quote:

Originally Posted by buckwheat (Post 147743)
Dear Tayla,

Just a thought but why did your 2 mates need to have blood drawn in the first place. Hugs, Roz




Hi Roz,

One was for a pregnancy test and the other for Thyroid function tests.
Just normal everyday stuff:(

I have blood drawn very regularly and whilst I must admit I am usually quite nervous, I have never had a problem from it (so far):rolleyes:
Take care Roz
Tayla:hug:

Vicc 09-14-2007 05:40 AM

Tayla,

One of your more recent posts piqued my curiosity so much that, even though I think it unlikely you will answer, I have to ask a question.

You wrote: ...when I read the research of many very learned people who have spent years developing the theory behind the cause of RSD/CRPS then I tend to find comfort from the consistancy from these people. It also makes good sense to my level of understanding.

Can you tell me which theory you agree with?

Do you agree with the one that claims that RSD results from a peripheral nerve injury?

Or do you agree with the theory that this disease is caused by damage to nerves in the sympathetic nervous system?

Or do you agree with the one that says RSD begins with a peripheral nerve injury that completely heals, leaving no symptoms, which are then assumed by the central nervous system?

Oh, yes, and if you think they all make some sense, can you explain how you find consistency between these three competing explanations of RSD?

(Added later) The reason I doubt you will answer this is that you have not yet answered an important question I asked earlier on this thread:

Since it appears to be widely accepted that CRPS-I (the overwhelming majority of RSD cases) is NOT caused by nerve damage, why do you insist that it is?

Auberon 09-14-2007 10:22 PM

More thoughts on the scientific method
 
Please excuse my jumping in here, respectfully Vicc, and Tayla, I think it is more that they are nerves misbehaving - not performing normally in type I and we categorically don't know why. There is no black & white with any biological system.

I comment herein respectfully and this is probably a case of semantics and being pedantic on my part. I would think we are in the realms of hypotheses as in "a supposition made as a basis for reasoning, without assumption of its truth, or as a starting point for investigation" .....Concise Oxford Dictionary.....and to quote the dictionary again

" Theory: Supposition explaining something especially one based on principles independent of the phenomena etc.

Unfortunately, I think we are still at the hypothesis stage despite being aware of this incidious thing since the American Civil War. I fear CRPS has been studied in such small groups and work done on medical practice stats and opinion rather than collective studies that it is limited in its application of certainty. These doctors mean well but they don't have access to large numbers of patient and I might add that the researchers also mean well but they just don't have the numbers...as in size of sample. They are often using numbers like 50 participants.....very small samples. It is that fundamental.

So we come to the expectation of the impossible .....at this stage.....a theory is able to be proven with a degree of certainty whereas a null hypothesis can be disproved with a degree of certainty so an hypothesis can be confirmed with a reasonable statistical degree of certainty but the numbers don't appear to exist collectively.

As we don't KNOW all of the roles of the nervous system jigsaw puzzle and its interaction with the bodies’ systems this becomes quite curly.
In fact, that might get us as a group heading somewhere whereby we can try to influence the researchers were we to do it tactically on how we are most affected.

It's like the null hypothesis in stats. You say the opposite to that which you wish to prove & then prove it is wrong.....then you know the hypothesis proper (the theory) is correct within defined limits of certainty.
I'm not well enough by any stretch of the imagination to try to collate a meta-analysis along these lines.

The hypothesis that is out there that appears to give the most consistent little snippets of relief is that it is related to the nervous system. It must certainly include the nervous system as pain receptors are involved and certainly the higher order operants of the Higher order control of Autonomic functions.

I also think it curious that if nociceptive pain is relieved by opioids and the balance of pain source for many patients is nociceptive then they get a fantastic improvement in quality of life. I think there seems to be some confusion (I'm not sure that is the right word) with the Gate Control Theory and SCS has given such a degree of relief to so many patients - sadly, it didn't help me and yet opioids delivered intrathecally gives tremendous relief for some.

Those meds that quieten the nervous system whether they be anti-epileptics, tricyclic antidepressants have been a boon to many. Again...not I.

I am merely suggesting that if we were to, as patients, suggest the major irritants (stimulant) and the responses they cause us in large numbers we might actually get somewhere and work with the researchers to crack this nut.

The British and the Canadian RSD groups are great too.
We are a big group but if data could be combined worldwide before research is done rather than retrospectively reviewing small studies, a positive direction might be found for us all.

Very best wishes
Auberon

tayla4me 09-15-2007 12:28 AM

Vicc,

I find it interesting to think that you would expect me to have any further dialogue with you after your PM to me and your post on another forum
Based on the information you have supplied I do not agree with your hypothesis regarding IRI being RSD and you don't agree with mine.
Let's agree to disagree and at least leave our integrity intact.
I respectfully ask you to not mention me in any more of your posts and I will afford you the same courtesy.

Tayla

tayla4me 09-15-2007 12:54 AM

Quote:

Originally Posted by Auberon (Post 148266)
Please excuse my jumping in here, respectfully Vicc, and Tayla, I think it is more that they are nerves misbehaving - not performing normally in type I and we categorically don't know why. There is no black & white with any biological system.

I comment herein respectfully and this is probably a case of semantics and being pedantic on my part. I would think we are in the realms of hypotheses as in "a supposition made as a basis for reasoning, without assumption of its truth, or as a starting point for investigation" .....Concise Oxford Dictionary.....and to quote the dictionary again

" Theory: Supposition explaining something especially one based on principles independent of the phenomena etc.

Unfortunately, I think we are still at the hypothesis stage despite being aware of this incidious thing since the American Civil War. I fear CRPS has been studied in such small groups and work done on medical practice stats and opinion rather than collective studies that it is limited in its application of certainty. These doctors mean well but they don't have access to large numbers of patient and I might add that the researchers also mean well but they just don't have the numbers...as in size of sample. They are often using numbers like 50 participants.....very small samples. It is that fundamental.

So we come to the expectation of the impossible .....at this stage.....a theory is able to be proven with a degree of certainty whereas a null hypothesis can be disproved with a degree of certainty so an hypothesis can be confirmed with a reasonable statistical degree of certainty but the numbers don't appear to exist collectively.

As we don't KNOW all of the roles of the nervous system jigsaw puzzle and its interaction with the bodies’ systems this becomes quite curly.
In fact, that might get us as a group heading somewhere whereby we can try to influence the researchers were we to do it tactically on how we are most affected.

It's like the null hypothesis in stats. You say the opposite to that which you wish to prove & then prove it is wrong.....then you know the hypothesis proper (the theory) is correct within defined limits of certainty.
I'm not well enough by any stretch of the imagination to try to collate a meta-analysis along these lines.

The hypothesis that is out there that appears to give the most consistent little snippets of relief is that it is related to the nervous system. It must certainly include the nervous system as pain receptors are involved and certainly the higher order operants of the Higher order control of Autonomic functions.

I also think it curious that if nociceptive pain is relieved by opioids and the balance of pain source for many patients is nociceptive then they get a fantastic improvement in quality of life. I think there seems to be some confusion (I'm not sure that is the right word) with the Gate Control Theory and SCS has given such a degree of relief to so many patients - sadly, it didn't help me and yet opioids delivered intrathecally gives tremendous relief for some.

Those meds that quieten the nervous system whether they be anti-epileptics, tricyclic antidepressants have been a boon to many. Again...not I.

I am merely suggesting that if we were to, as patients, suggest the major irritants (stimulant) and the responses they cause us in large numbers we might actually get somewhere and work with the researchers to crack this nut.

The British and the Canadian RSD groups are great too.
We are a big group but if data could be combined worldwide before research is done rather than retrospectively reviewing small studies, a positive direction might be found for us all.

Very best wishes
Auberon



Hi Auberon,


A great thought provoking post.
I agree, there are NO definites just as there are no two RSD/CRPS patients alike.
I hope you are as well as you can be.
Cheers Tayla:hug:

Vicc 09-15-2007 12:58 AM

It ain't that easy, Tayla,

On Steff's thread PN Board suggested I post here, I asked you to stop misquoting me and stop falsely summarizing my views.

On the thread KimmyDawn created in order to allow Steff's thread to focus on her questions: Discussion of Vicc's hypothesis on RSD, I again asked you to stop misquoting me and falsely summarizing my views.

On this thread I asked you to stop misquoting me and falsely summarizing my views.

Now that I suspect the mods have warned you to stop misquoting me and falsely summarizing my views, you suddenly talk about leaving our integrity intact? You want to leave the impression that my integrity is in question?

I respectfully ask you to not mention me in any more of your posts. Tayla, if you can provide a single example of my mentioning your name on any thread in which you weren't misquoting me and falsely summarizing my views. I will promise to never mention your name in any of my posts that don't directly reply to your words.

I find it interesting to think that you would expect me to have any further dialogue with you after your PM to me and your post on BT.

I'm not sure whether it's a violation of the TOS to discuss PMs, but since you bring it up, my one-word reply to your assurances that you weren't deliberately misquoting me was, I felt, appropriate.

I did not mention your name in my post at BT, but I certainly talked about your behavior. I joined in a discussion there about being banned from NT, and I talked about my reservations about how deletions and bannings take place here. It is againt the TOS here to discuss those things, so I did it where such discussions are permitted.

Based on the information you have supplied I do not agree with your hypothesis regarding IRI being RSD and you don't agree with mine. I know you disagree with mine, but I honestly don't know what yours are. I asked you to clarify them in my last post, but you apparently choose not to.

If you want to end what has been going on throughout three different threads, you will have to accept that this time I will have the last word. Reply to this and I will reply to your reply. You can avoid what could become an endless stream of replies by answering the last question on my last post.

If you do that, my soul will be at rest. Otherwise, if you want this to end, allow it to end now; without reply...Vic


kimmydawn 09-15-2007 09:45 AM

Enough is enough with this issue, y'all.

What started as a debate has turned into a personal "I'm gonna prove my point and have the last word doing it" sorta thing, splintering into various threads and hijacking other discussions. That would be fine if this forum were set up for that. It would be fine in PM. It would be fine if it involved just the few engaging.

HOWEVER...

This forum is for support...for anyone and everyone who needs it. When an issue becomes a personal quest for being right, flames thrown in, etc., it kinda ruins it for everyone, yes?

Because there are several members of this forum who read, lurk, respond, etc. for its mission, I'm requiring that the discussion on this end here. If you want to continue to prove points, attack, etc., take it to PM where those that don't want to see it can ignore effectively, and those that do want to continue can without it affecting others.

From this point it's not on the administration if posts are removed, it's on the member involved. It's easy to blame the administration when its worked non-stop, ignoring other parts of the community and their personal lives to watch a debate that's turned into a personal argument of purpose to put MUCH time into something where the members involved work with it little and continue.

A debate is not a debate if there aren't opposing sides making a stand, nor is an argument...put the member on ignore or simply don't respond. If you feel you must, do so in PM...to be in accordance with the guidelines, but more for your fellow members here.

Regardless of why one chooses to do it, it needs to be done and the disruption in this forum needs to end...for the success of this forum but also for the comfort and care for your fellow members.

Again, any post continuing this personal public argument will be removed for the whole of the membership, and yes, the administration can be blamed...blamed for caring for the whole of this forum, its members and this community.

I appreciate the care and passion of each and every person, and that's one reason the debate continued even after personal flames. However, there comes a point when a personal argument/debate becomes disruptive to those around it. This is that point. The members involved need to "lay it down" and move forward. If they can't, the administration will aid in that...again, for the many that attempt to use the forums for its mission.

KD

JOAN_M 09-15-2007 10:43 AM

A Big Amen Joan

fmichael 09-15-2007 04:04 PM

a slightly different take on this one
 
What I find is so interesting is how the same patterns repeat from thread to thread. See, e.g. http://neurotalk.psychcentral.com/sh...ghlight=Deluca

Basically it goes something like this, (1) thesis, (2) antithesis, (3) please show me the proof for your thesis/antithesis (maybe even a full text article if you've got one available), followed, almost invariably by (4-A) how dare you misquote me or (4-B) you're using an unfair argument, as opposed to (4-C) simply providing the requested backup information.

I feel that if members could simply back up there assertions with the wealth of information out there - and for those who need a little refresher course check out Molecular Biology Made Simple and Fun, D.P. Clark and L.D. Russell (Cache River Press, 2000) or Clinical Physiology Made Ridiculously Simple, Stephen Goldberg, M.D., (MedMaster, Inc. 2004) - we could all move a little more expeditiously from thesis to antithesis to synthesis.

There you have it, Dialectical Materialism in daily life and practice.

Mike

kimmydawn 09-15-2007 05:07 PM

I think you make a good point for possibly all of us to take notice of, Mike. What's worked historically, and what hasn't? View that objectively and make attempts to change what we don't like/tolerate...knowing we can't control anyone but self. If we acknowledge that we can't make others hear us, understand us, etc., if they can't/won't, it's easier to lay something down.

So, in the future it might be good to work up to the, "I hear what you're suggesting. Please show me how you came to that conclusion." That might be a good point to analyze based on the responder's choices.

If they give more to work with, move forward. If upset starts, there's nothing more you can gain because no more information has been given, etc., then maybe it's a good thing just to move on from it. It's like that in almost any conversation. It does take two.

Another option might be to *with respect*, agree to disagree...to say, "I respect what you're saying even though I might not understand it all, but based on what I do understand...I disagree. We can agree to disagree."

Also, it's OK for others to disagree! We're all very individual in our lives and illnesses. Having someone disagree with us, then explain why, can really help in gaining expanding understanding and knowledge. We still may disagree at the end of the day, but it should all be OK. Saying, "I disagree" is NOT a bad thing...not at all...when it's said with respect.

From there, it can be laid down knowing that all was done that could be, and moving on is easier, I think...remembering that a debate or argument has to have *at least* two sides...

Just my two cents...

I think it's ok to continue to discuss how communication can be better (as we are now), but want to remind those replying that this continued discussion is for that and not to blame others, flame, make stands, pointing out another's past words or actions, etc...in essence continuing the argument.

Thanks!

KD

Vicc 09-15-2007 06:30 PM

Hi Kimmy,

I pretty much agree with your first post, and am completely willing to see the "he said..they said" thing die. And my bestest RSD friend for years and years is asking me not to make what just happened "my hill".

I imagine you have been made aware of my posts on another forum, about my hill, and even if you aren't, I made it pretty clear what I was contemplating.

I value my bestest friend's advice, and so I have not taken any irreversable step.

I'm not quite sure I understand your second post. Your reply to Mike.

He wrote a reply that doesn't make any sense at all, and it was clearly intended to prove that when I can't find facts to support my view in a debate, I resort to accusations.

If your second post means that I am not to be allowed to talk about ALL of the flaws in his presentation, this is probably my hill after all.

I'll wait for your reply, telling me whether or not I am allowed to offer an alternative to what Mike wrote. After a certain period of time, I'll assume you don't feel the need to state the obvious, that everyone is allowed to debate ideas, and then I'll post my reply...Vic

carose 09-15-2007 06:50 PM

Because the 60's happen to be the time period most of my ideas were formed I am of the "make love not war" say what you want I will defend your right even if I disagree!! :D I have read with interest everything that anyone posts, took what applied to me, and left the rest. I was taught when I did not understand something, to let it go until such a time as I felt it was important enough to study on my own and see if it made any better sense to me. I have done that here and was surprised at what I learned on my own, but using others research. Because we are all unique we react to RSD according to not only how wide spread the RSD is, but what other health issues are going on within each of us. Some people can get by without many meds, others need a handful to make it through the day. I can walk, but not hike like I use to, but have limited use of my hand:( Some have limited use of their whole body:(:(:(, but we each have something of important to share with others. I look forward to reading everyones post each day, some days I cheer-like when Allen got his much deserved SS and other days I offer up prayers for those not having a good day. I learned it takes courage to go on a long trip, but that the trip is worth it and understand that sometimes we have to pay for playing.

I have not been posting as I had skin cancer on my face that was removed, but the Dr. wanted me to do a topical cream for any remaining cancer cells, even the drug company that makes it said not to use it if you have some other types of health issues:eek:. Just removing the area of cancer,it
was on my cheek bone by my eye ,set off my RSD with my head and eye burning and PAIN. So I have been searching for a better answer, for me anyway, of treatment.

As we said in the 60's PEACE :hug:Carose

kimmydawn 09-15-2007 07:21 PM

Quote:

I pretty much agree with your first post, and am completely willing to see the "he said..they said" thing die. And my bestest RSD friend for years and years is asking me not to make what just happened "my hill".
I'm so glad to read that, Vicc...really. You are valuable, and I see your intent as good. I truly do. However, in letting something die then we lay it down. In other words, we move forward and away, yes?

Quote:

I imagine you have been made aware of my posts on another forum, about my hill, and even if you aren't, I made it pretty clear what I was contemplating.

I value my bestest friend's advice, and so I have not taken any irreversable step.
Again, I'm glad. You have a good friend. Yes, I'm aware and I think you predict my responses/reactions inaccurately. ;) If you want to discuss that more, PM me. I will say that I would not have accomodated with a ban. We rarely ban here...much more rarely is a active member completely banned. Again, if you want to discuss it more, my box is open.

Quote:

I'm not quite sure I understand your second post. Your reply to Mike.

He wrote a reply that doesn't make any sense at all, and it was clearly intended to prove that when I can't find facts to support my view in a debate, I resort to accusations.

If your second post means that I am not to be allowed to talk about ALL of the flaws in his presentation, this is probably my hill after all.

I'll wait for your reply, telling me whether or not I am allowed to offer an alternative to what Mike wrote. After a certain period of time, I'll assume you don't feel the need to state the obvious, that everyone is allowed to debate ideas, and then I'll post my reply...Vic
First, of course you can respond to what Mike wrote. However, please remember that we're discussing communication and bettering it at this point. Also, we're not furthering the argument. So, in considering those, if you would like to respond with respect with what you disagree with, that's fine. He made an observation, and did so in a general tone, then followed it with a suggestion which would help in his opinion.

You asked, so I'm going to respond honestly. You said, "to talk about ALL of the flaws in his presentation". That is your perception or opinion. I'm not saying that mine is opposed to your's. I'm just stating a fact. Some might not see it as flawed; others might. So when posting in disagreement, stating such absolutes can feeling attacking or hurtful to the one to which you're responding. It can make one feel defensive, as it can have a personal tone. See?

On the rest of the quote, please read my post again, Vicc. I stated that he made *a* good point, not that I agreed with every word stated. I'm not saying I disagree either. I don't think that's for me to do. What is for me to do is to help members stay within the guidelines for all that use this forum and community. The point was...what has worked historically and what hasn't. I made my own post, with my own thoughts, from there.

You see, I don't know every detail of history and even if I did, my perception is not another's and I'm not about to dictate to others how they should perceive or comprehend written word. It is difficult to do with MANY variables that come into play in the online world. That's why I gave *my* perception from *my chair* and mixed it with my own suggestions based on my knowledge and experience...again, in moving forward.

I appreciate the fact that you're willing to let it die. I think it's so important to do at times. So many times we have to pick and choose our battles in daily survival or we can expend energy on things that can just sap more of it without really benefiting us in the end nearly to the degree that it's depleted us.

If you'd like to discuss anything on a "personal" level, please PM me. I was sick for a few days, but am feeling better now and pretty much full-force again.

I will again remind everyone, though, that we can continue the discussion in regards to communication and avoiding conflict, but not in regards to continuing a "side" in a debate or argument that has occurred...in moving forward as has been stated. Any such posts *will* be edited or removed in their entirety in caring for the members of the forum as a whole, and even those lurking or reading in hopes of finding a place of understanding, information and hope. I've been there. It hurts to think that in those nights I was searching in desperation, I might've hit a brick wall with a battle in a place where I sought respite.

Peace,

KD

kimmydawn 09-15-2007 07:25 PM

Quote:

Originally Posted by carose (Post 148465)
Because the 60's happen to be the time period most of my ideas were formed I am of the "make love not war" say what you want I will defend your right even if I disagree!! :D I have read with interest everything that anyone posts, took what applied to me, and left the rest. I was taught when I did not understand something, to let it go until such a time as I felt it was important enough to study on my own and see if it made any better sense to me. I have done that here and was surprised at what I learned on my own, but using others research. Because we are all unique we react to RSD according to not only how wide spread the RSD is, but what other health issues are going on within each of us. Some people can get by without many meds, others need a handful to make it through the day. I can walk, but not hike like I use to, but have limited use of my hand:( Some have limited use of their whole body:(:(:(, but we each have something of important to share with others. I look forward to reading everyones post each day, some days I cheer-like when Allen got his much deserved SS and other days I offer up prayers for those not having a good day. I learned it takes courage to go on a long trip, but that the trip is worth it and understand that sometimes we have to pay for playing.

I have not been posting as I had skin cancer on my face that was removed, but the Dr. wanted me to do a topical cream for any remaining cancer cells, even the drug company that makes it said not to use it if you have some other types of health issues:eek:. Just removing the area of cancer,it
was on my cheek bone by my eye ,set off my RSD with my head and eye burning and PAIN. So I have been searching for a better answer, for me anyway, of treatment.

As we said in the 60's PEACE :hug:Carose

You're a role model in your description of applying what you can and leaving the rest! Thank you for sharing that! So much can be learned even when we disagree. Again, thank you.

On a personal note, I'm sorry to read of your recent added struggle. :( You're in my thoughts.

I appreciate your post and participation. :)

KD

Vicc 09-15-2007 07:34 PM

Hi again Kimmy,

I'm tired. I'm too damn tired to go back for another round. "Coach, throw in the towel".

You are absolutely right in saying: So many times we have to pick and choose our battles in daily survival or we can expend energy on things that can just sap more of it without really benefiting us in the end nearly to the degree that it's depleted us.

I won't be replying to Mike's post (or hopefully any other on this thread). I think I'll take a nap instead...Vic

kimmydawn 09-15-2007 07:38 PM

(((((( Vic ))))))

You nap. Tomorrow is another day...another start.

You're valuable here. Move forward knowing that. Don't look back, but move forward knowing your intent is good...as is every member of this forum I believe.

If we would all *choose* to believe that same thing, it would always be a good thing. If we first say, "I know their intent is good, so am I reading this right?" it might help in communication.

Fresh starts are wonderful and I see alot of us making the best of them. :)

I think we all try to do that every day.

KD

wakegirl 09-15-2007 10:09 PM

thank you for stopping the throw down (via keyboard of course)
 
i just wanted to say thank you to the admin folks. i joined this forum for a place that was absent of the judegement i feel on a daily basis, and while most of the information was interesting (i have learned over time to take bits and pieces i find interesting or worth further investingation) and ignore the rest. unfortunately when the discussion turned into an i am right you are wrong and to make me change my opinion you must supply a factual basis i felt like this might not be the place for me. up to this thread everything that has been dicussed has helped me to look beyond all of the things i have learned about rsd/crps and investigate the vast quantities of information all of the great members have to share.
honestly vic the first few posts of yours seemed so completely off when compared to everything my doctors have said, i thought i would avoid the confusion and skip every thread initiated by you. however after a few days of avoidence i was drawn back into your wealth of knowledge. some of the things you express are difficult to fathom and some cause me to shake my head and wonder what kind of meds he is on. after reading and rereading your posts i relized that the information you are sharing is probably not mentioned by my doctors because it doesnt fit in the mold the have incorporated. i have taken some notes and will be discussing them with both my pm doc and the nuero who did my scs. i think you information is wonderful in a number of ways. i just wanted to let you know that i would be more receptive to a thurough reading if it didnt feel like i was slumming through a verbal fist fight. please continue to submit your interesting view points, it would be a shame if someone who thinks so far beyond the box were absent. i don't mind if you add questions that will help to solidify or discard the information. you seem like a very intelligent person unfortunately sometimes when your explinations are so complex and the context appears so confrentational to those eho disagree i struggle to read the thread. i am a fighter (verbal and physical) and when someone throws out a challenge to the informattion i have had pounded into my head my firts reaction is to fire back, possibly with something relevent possibly with something completely off the wall just so you know i have read your thread and am struggling to find any applicable value. i guess my visits to the shrink that taught me to slow down snd think about my response before i blurt it out, and to rememberthe more riled up my comments the more rilied up the response i can expext to recieve. there reallly isnt anything whether differing opinions are expressed or whether or not factual data is supplied, if it is something that interests me i will look into myself.
from polar edges of the intellectual spectrum you both expressed opinions, they may have a solid foundation, they may be something someone read while they were waiting in line for their prescriptions to be filled at the pharmasist. the interesting information revieled from both authors wil send me online in search of information.
just because someone submits something you find misleading or wrong doesnt make them wrong it makes them interested in new information. i am intreged by the information you express so please when you find something you think is interesting contine to contribute it.
im not saying who was write or wrong. quite the opposite really. as someone who sat on the side lines i learned a great deal from one writer stating something and another one saying you are completely wrong. i reaaly enjoy the treads. i read them everyday snd honestly the last couple of days i havent logged in because i was affraid that i would be sucked into the vortex of the dissagreement and the increased stress would cause problems. i like coming here because it makes me feel better the two parties involved made me feel like this may in fact not be a place for me, however the note from the admin made me rethink and i have decided to remane a member of the group.
we wont a;ways get along but as long as we deal with the situation in the appropriate way things should be ok.
you are both amazing members of the group. with lots of great information to share. the negativities supplied seem to belong in a much more controverial based forum (what can we do to fix the environment, ;eft wing v. right wing.)
please keep up the great posting snd free yourself from the tension of conveying information we all have the right to interpret in our own way
thank you for making a great page where we can feel free from retribution to say the things we need to say in order to make the increased physical ailments shelved for another day

kimmydawn 09-15-2007 10:25 PM

(((( wakegirl ))))

Thank you so much for your kind and honest post. Your sharing has shown us that conflict and upset can really affect so many more than just those involved, and I appreciate your honesty in sharing. I'm so glad you're here and are going to stay!

Differing opinions, and even respectful debates, can really show us so much, yes? But one important thing you said was (paraphrasing) having to get through the battle to find the good stuff. It's hard when feeling good...almost impossible when feeling badly, etc.

Thank you again so much for your perspective and honest views...stated in such a respectful way while showing both agreement and disagreement. The tone throughout remained the same even when showing disagreement. That tone was appreciation and care.

The work you've done on your own approach shined through. :)

Again, I'm glad you're here and staying. :) If you ever need, don't hesitate to PM.

KD

Vicc 09-16-2007 09:28 PM

Hi wakegirl, you wrote:

honestly vic the first few posts of yours seemed so completely off when compared to everything my doctors have said, i thought i would avoid the confusion and skip every thread initiated by you. however after a few days of avoidence i was drawn back...some of the things you express are difficult to fathom and some cause me to shake my head and wonder what kind of meds he is on. after reading and rereading your posts i relized that the information you are sharing is probably not mentioned by my doctors because it doesnt fit in the mold the have incorporated.

To me, this means I have accomplished what I set out to do: Try to get someone to ask questions, not just accept what is said because a doctor is saying it. (They're usually right, but not always).

And about questions: some of the things you express are difficult to fathom

I know they are. I have tried and failed to teach people what ischemia reperfusion is, and couldn't do it in less than 3,000 to 4,000 words; and they were even more difficult. Now I try to make points that make people ask questions, and hope they will aim some of those questions at me.

I ask for questions. I beg for them. There are gaps, disconnects, in what I write, but that's because I am raising points, not delivering lectures designed to answer every possible question before it's asked.

Anyway, I think if you read my posts you'll see that I try to answer every question presented to me: even when all I can say is "I don't know".

Please, everyone, if you don't understand what I'm saying; if the dots aren't connecting; ask me....Vic


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