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Joselita · 04-22-2007, 03:10 AM

Vic,
I should already be in bed now, but since I am having troubles in that area again, I am still up. I came to check email and look at a few things before turning this thing off and hitting the sack with a book I am reading, and I saw that last post of yours on the "Upset" thread. I thought that I needed to write something, because I understand where you are coming from and have some things to say that might be helpful. At least I hope they are. I couldn't just go to bed without saying what I wanted/needed to say to you, because I could hear that you are upset...or maybe a better word is disheartened? (Sorry...my vocabulary seems to diminish as the night/morning goes on, and my brain goes from just being "rusty" to being down right LEAKY! ROFL)

First, I think that the reason that you might not have had some of the feedback that you expected from your first posting in that thread, is because it kinda didn't fit with what the OP was talking about. I think that you would get more response if you maybe moved it to a thread unto it's self? At least that is what my opinion on the matter is (and we all know about opinions....lol).

Second, you DID get a couple of "attaboys" there for that post. Did you notice the "Thanks for this!" box right under your posting, where Allen and Joan M both gave you "Thanks"? That is one of the newer features here on the forum. It allows folks to give a "Thanks" for a particular post without having to do a lot of typing. So, there is proof that your posting was and is appreciated.

Third, I am kinda confused as to why you think that your post(s) would burn bridges" or **** off folks? I read them both, and I don't see anything as to why that would be a worry? In fact, I am very much looking forward to this new website that you say you and Allen are getting together to get up and running. I admit that I have fallen out of the swing of things around here, but I really don't see why anyone would be upset with anything that you had to say in that post. If someone doesn't agree with it, then that is different than being upset, you know? Personally, I didn't realize that cyanosis isn't listed by docs as an RSD symptom/problem. That really does blow my mind, because I always thought that looking for the odd colors and mottling was one of the ways that docs got their clinical dx for RSD, and always assumed that it would be indicated in medical records.

I guess that I have to amend that last "point" I had there, because going back and rereading that post, I guess that I can see where maybe Mike would get a little upset, since you do kinda call him out....and maybe where folks that are all about Dr S might not be too happy. But, I do think that most everyone knows that all docs aren't right for everyone, and that there will be people who are going to have issues with ANY doc, no matter how much of an "expert" them may or may not be, if the doc in question didn't/couldn't/wouldn't help them personally. I know that you have your ...erm...."issues" with and about Dr S, and that is fine with me. I have never seen the man, and don't really think that I ever will (since I am not interested in the ketamine treatments, and especially not the German Coma ones that he seems to be doing a lot of now). I just take what I think works from whoever/whatever/where ever I find it, and see what I can use or make of it for myself. For example, I DO NOT agree with lots of things that the infamous Dr Hooshman says about RSD, or how he was treating his patients (or a lot of them) and NEVER would I go and see the man myself, BUT....I do agree with some of the things that he says completely. If that makes any sense? I guess that I feel the same way about most docs, Dr S included, so the things that you have to say about him really don't matter that much to me. If you are worried that folks get turned off by your posts, and are worried that maybe the comments about Dr S are going to upset folks....maybe you could kinda leave that part out, or tone it down a bit? Like I said, that is the only thing that I can see that might upset folks at all about that post (and it didn't upset me...so please don't think that. Ok?)

I really do think that if you put that post in a different thread (it's own?), that you might have more response to it. Also, there is the thing around here about long postings. Personally, I don't mind reading them in the least. Probably because I write them myself, LOL. But there are folks that can't read them, or get turned off by seeing them (This I know, because I have had the same things happen with my posts as you are having with this one. I have seen someone ask questions that they wanted answers or advice for, and have taken the time to sit and answer or try to help as much as I could, only to have my post(s) be ignored. Yet, someone else can follow further down in the same thread and answer some of the same things in the same way that I did, only shorter, and get all kinds of thanks. It DOES get kinda aggravating and disheartening, so I do understand how you feel about not having much feedback on what you took so much time to write for all of us to read and use. Just wanted to let you know that). However, I don't see how you can make your posts shorter without losing MASSIVE amounts of very pertinent info. So, I AM NOT telling you to shorten things up at all! I am simply trying to explain another reason why you might not get the response that you ought to get (at least in my opinion!). I figure that it is everyone's loss when they don't read the longer posts, because they miss out on LOTS of info. However, I do understand that there are those that can't read them for various reasons (vison problems, can't stay seated long enough, and don't remember what they read in between rests well enough...those kinds of things). I don't know what there is to be done about that part of it, as I have never been able to figure it out myself. ROFL, and we all know how long my posts can get (like this one is probably going to turn out to be...lol)!

I DO want you to know that I for one really appreciate all of the time and effort that you have taken now and all through the years to try to help figure out what RSD is all about, and what we can DO about it. Instead of sitting around saying "I wish that someone would do something to help find a cure", you are actually getting out there to TRY to do just that. For that, we are ALL indebted to you. I lament the loss of all of the work that you had put up on BT, since as you have already said, it looks like it is gone forever (I have kept a check on the "progress" of having that database back up for reference...and it seems as though it is NOT a priority whatsoever, although NO ONE will come right out and say that. Probably because they know that they would loose a lot of their members if they did fess about it. But, as my Momma says, "Actions speak louder than words", and the actions are that the database is lost, or at least that it will not be put back up on the web because it is NOT a priority. Shoot, BT it's self is NOT a priority anymore, really. Kinda sad when you think about it....and makes you sick when you think of ALL of the data that is lost for so many forums....but it does make me appreciate this place even more). I am very glad that you are still forging ahead with your work, and I am very happy that not only will you be posting it HERE, but also trying to keep it ever safer by putting it on a separate website too.

Basically, I just want you to know what I think the reason is that you didn't get a lot of response (have to remember the "Thanks" that you did get so far, though), and to let you know that I soooo appreciate you and what you are doing for all of us. I am so glad that you are still willing to do this research and then to try to write what you find in a way that all of us can understand (because, while I am not a complete idiot, and do have a pretty good vocabulary, I have to admit that all of that medical jargon that is in those articles and what not just kinda makes me go "huh?" and are hard for me to keep my brain focused on while trying to read. Especially the ones with all of the formulae and symbols and what not that look like some kind of other language to me...and probably are for all I know! LOL). So please keep up with good work, and know that you have LOTS of folks that have and do read what you write. You have to ALWAYS keep in mind the people that are true lurkers and never post, but DO come every day to read. That is one reason that I am actually glad that we are can see how many Views a thread has, and not just the number of replies. It lets you know that folks are reading....even if they aren't posting. LOTS of those "views" are the lurkers....so don't forget about them. They are quiet.....but they are here for the same reasons as the rest of us, and also want to find as much info as they can (speaking as one that has been known to go into "lurkerdom" for extended periods of time).

Alright. I am going to end this now, because I will probably start to repeat myself very shortly (even worse then I already have. LOL). I do want to say, besides all of what I already have said, that it makes my heart happy to see you posting. I worry about you when you get too quiet for too long. Shoot, I worry about you anyway, my friend, because I care about you so very much. I hope that you still know that. Your being here is part of what makes this place "home" for me. I wanted you to know that, because so very many times recently I have seen you write about how much you care about and love all of us here, how we are right up there with your family in you heart. I want you to know that the feeling is mutual, at least on my part. You are loved, and you are cared about...and we NEED you here. I Need you here. I wanted you to know.

Lots of Love and ((hugs)) for you, my dear old friend. Promise me you will keep on posting, just like you always have? Know for sure that I am one that is reading...Ok?

Love Always,
Jose