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Post by jeffn on Nov 26, 2009 8:20:25 GMT -5
Thanksgiving day is probably not a great day to start a new troll but there is always tomorrow right? So what other Scleroderma websites do you frequent? I find all web boards SD or otherwise that I frequent to have different "personalities" and that personality changes or at least varies over time. I feel the change is due to the personalities and input of regular posters. As the regular posters change, as they seem to do, so does the vibe of the board. How do you find the "personalities" of other SD boards. What do you like about them and what don't you like? "Personality", content, attitudes, features, etc. Not trying to start any fights so behave guys I'm just curious.
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Post by christel on Nov 26, 2009 12:13:32 GMT -5
That's an easy post for me to respond to since I only read this one. I tried poking around some of the other ones but didn't have the patience to get to know the personalities. This one works for me just fine...!!
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Post by steve201 on Nov 26, 2009 13:34:21 GMT -5
I'm on this one..and living with SD sight...I was going to inspire but that site sucks...living with sd is too depressing cuz everyone talks about thier hurts and depressions... they won't take advice that will help them..or are they just so focused on their misery that they can't take advice...I have no idea...but this site is more focused on helping and offering support ...and being more open with less rules of engagement....informations is strength..it's key to fighting the battle......
Steve
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Nov 27, 2009 15:17:35 GMT -5
Hi Everyone, First, thank you Jeff for keeping this terrific website moving and fun (yes, Steve, you make it fun too!). This is an excellent website for us SD folks, and it is getting better and better every day because of the increasing number of new members, their experiences, and their increasing posting contributions. My favorite aspect of this site is that everyone here is here for SD and everyone has a good attitude. I can go on mentioning some of the positive aspects of this site, but I think that Steve's head is big enough already! Just kidding Steve; we all love you, man.. The Inspire site just sucks. It sucks out your good attitude and pleads for you to join in the "misery loves company crowd". I have not looked at my daily emails of "what's new" on the Inspire site for quite a long time; I just delete them immediately. This distaste became unbearable shortly after one individual on that site decided to negatively bias everyone and anyone with the belief that AP doesn't work. This person made this misleading outspoken pronouncement for all after the person failed to notice improvement after this person's short and inadequate attempt. By the way, Jeff, I am being nice, considering this person's efforts are like someone who has HIV and makes no effort to not infect others with it. AP can and does work - it can and does save lives. To otherwise mislead many concerning such a life and death matter is reprehensible. The RBF BB is terrific, and I spend my time there mostly because there is a lot of new posts and topics to check out. Although many of the posts primarily involve some of the other AI's that AP can help, I find it useful to learn how AP is helping these other AI's as well. Additionally, these other AI posts share many similar AP issues as us SD folks on AP. I wish I could post new topics on tis and the RBFBB site simultaneously so all SD folks can benefit or be involved. In my case, I also occasionally look at a Raynauds and Peripheral Neuropathy site, but they are essentially completely stagnant, without dynamic member commenting. So in summary, the best sites to camp out in are this site and the RBFBB site. Randy
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Post by joannern on Nov 27, 2009 18:28:17 GMT -5
I really found Inspire to be a downer. I have not gotten much info over there and they are way too rigid aobut mentioning anything but themselves. I too now delete ther emails each morning and do not visit the site.
I was so angry when one of the Inspire moderators just deleted our board at her whim that it perhaps has colored my whole view of that site. It also really changed my view of the SD society itself. They maybe could not have stopped the person who shut down our board but they sure as heck did not have to embrace her as one of their moderatorso on Ispire. To me that simply said heck with all of you who wanted that board we will go along with limiting your freedom of speech and it is now us or nobody. WRONG!!! We have moved on and grow stronger each day. Thanks to Steve, Cubby and Jeff's efforts.
Randy could you post the link to the peripheral neuropathy board? I would be interested it taking a look at it.
Thanks. Joanne
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Post by steve201 on Nov 27, 2009 21:14:00 GMT -5
I owe you Randy....don't know what I owe you...but I owe you one!!.... ;D ;D Steve
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Post by isobelle44 on Nov 28, 2009 8:03:18 GMT -5
This board is also my favorite board. Maybe for me its because so many of you were on the old board and that is where i started and learned about this disease and ap, and got comfortable. I have not been diagnosed with systemic, diffused, or crest. My problem is a bad case of morphea so far that is. This board and the old one and all of you are a God send. I do check out inspire sometimes but not to often, i find the same thing there that you do. I look through the topics and if one pertains to my problem will click on it, thats about the extent of it for me. Sometimes i do go to the international one. But this is the main one for me, i dont post alot but i read it most every day. Sharon
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mumof3
Junior Member
Posts: 51
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Post by mumof3 on Nov 28, 2009 19:07:26 GMT -5
I really like this site. The people on here are supportive and have a good sense of humour. I don't always post but I do visit regularly.
The Board I frequent the most is the RBF BB. I am so grateful that it was the first site I found when I was first diagnosed. It provided me with hope. The people on there are great and very knowledgeable. They are the ones that educated me, encouraged me and got me started on AP.
I don't know what I would have done if Inspire was the first site I stumbled across when I was first diagnosed. It is the most depressing and pessimistic site. I read posts once in a while to educate myself about medication etc. I always end up reading some really sad posts and end up feeling down afterwards so I try and stay away from it.
A few times a week, I check out the Rheumatic Support Board. They have some good information about AP and loads of info. about supplements. The people on there are also really positive and supportive.
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Post by jeffn on Nov 30, 2009 20:29:07 GMT -5
Thanks for the kind words Randy. I just post on two sites at this point. Here and RBF but mostly here. I have been feeling well and at times I find it an effort to stay engaged with the boards. The RBF is a trove of info, they really have some knowledgeable folks there and over time the SD presence has been growing. Early on after the SDF move to inspire I tried to post and get involved there but just have given up of late. I know there are some from here that frequent that board and are trying to help folks out and I applaud your efforts. I just became very frustrated with a few there and no one seems to ever use a search feature so it gets very repetitive and I don't find very much hope there. As I said I find it frustrating but they will go on just fine without me anyway and I need my sanity. So most of my board time is spent here. I think we are doing well and have a good group regulars. I think thats what makes or breaks any board. We have also been getting some new folks. If you are new check out the NEW new members forum and maybe introduce and tell us a little about yourselves.
So thanks everybody for contributing and keep posting.
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aajmom
Junior Member
Posts: 76
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Post by aajmom on Dec 2, 2009 13:37:17 GMT -5
I only post on this board. The people here have always felt like "family" to me, so once this board was created I was once again happy and didn't need to go looking elsewhere!- Adriane
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Post by kathsherman on Dec 2, 2009 16:05:40 GMT -5
Although, I read and rarely post on the Inspire site, I feel obligated to seek any or all knowledge (regarding sclero) possible. This site feels like "home". I have many valued friends here and have gained much comfort from others that really understand and care on this board. Respectfully,our treatments may vary, but we are all here for each other and that is what matters to me..... Kathleen xo
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Dec 3, 2009 0:13:03 GMT -5
Randy could you post the link to the peripheral neuropathy board? I would be interested it taking a look at it. Thanks. Joanne Joanne - Forgive me for taking so long to respond. The PN site I have gone to is www.neuropathy.org/site/PageServer?pagename=webxI am NOT impressed by it and hope to find a better one soon. Any suggestions? In the mean time I am pursuing an electric stimulating device called the ReBuilder www.rebuildermedical.com/index.phpIt has received terrific reviews from Winston of the RBFBB site. Now his PN is attributed to diabetes, not SD. My family doctor just Rx'd the device for me and hopefully it will now get covered to some degree by my insurance. Randy
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Post by klw1960 on Dec 3, 2009 9:39:17 GMT -5
I visit this one more often and sometimes go to Inspire and ver rarely post but appreciate the postive attitude, sense of humor and medical knowledge shared on this site.
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Peggy
New Member
Posts: 33
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Post by Peggy on Dec 3, 2009 18:31:16 GMT -5
I post on this board and sometimes on Inspire and another board that was started by other members that were tired of being sensored on the International site. I still go to that board and post if one of them jumps out at me and I think I can contribute. I have just taken the position that if there is a new person recently diagnosed I try to post as I remember how scared and confused I was when I was first diagnosed.
I have to admit I applaud the RB therapy that has worked for so many but also feel isolated in that I tried it and unfortunately wasn't one of the lucky ones to have it work for. Sometimes that treatment gets pounded as the cure-all and it is frustrating to hear as I sure hope there is some other hope for me.
Randy thank you for the site on peripheral neuropathy. That's how my disease started and it was because of going to the International Nueropathy site and posting a help that they directed me to the neurologist who finally helped me and listened to me and got me a diagnosis after a very frustrating year of going from doctor to doctor.
I have also been blessed to form a small group of ladies that also left the International site and we have formed a support pact where we have become friends more than just people with this disease.
I just try to tell myself that when some poor sole posts they are looking for help and advice and if I can help them in any way I try to do that. If it weren't for some of the people on these boards I don't know where I would be so I try to return the favor. I know it's frustrating that some are so depressed but I also know that some of them are afflicted so terribly compared to me that I can't imagine that they have a whole lot to grab on to. I was brought up with the saying that "the more you give the more you get back" so I will continue to visit the boards just to see if something jumps out at me.
We are brought together by this dang disease and because of that we have formed a bond that people who don't know what we go through can truly understand. This disease has changed my life dramatically but I have adapted and have embraced "it is what it is". I have my good days and my bad days. I try to really enjoy the good days and realize it is a good day. I cherish the little things and have come to realize just how precious good health is and just how much I took it for granted. That's something you can't teach anyone it's just something they come to realize themself when something afflicts them.
But more than anything I always try to be helpful and not tare someone down, trivialize what they are talking about, and try to be there for them. That's because there are some days when I need them to be there for me.
Warm hugs, Peggy
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Post by sherion on Dec 3, 2009 20:39:50 GMT -5
I'm on a couple other sites but rarely post on any of the others except one. The International site censors way too severly in my opinion. If someone needs help they often need the name of meds or treatments that help. Another board also censors but not to the degree as the International board. Their problem is that it may be days before your letter is posted. Who wants to wait that long for a response?? I prefer this board and one other because of the friendship, and openess that we can discuss ANYTHING! I don't do AP or any other treatment but I sure do like reading about them. Never know when the info will come in handy.
Sherion
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