I'm so sorry your elderly dog is ailing, Cassi. I know how hard that can be. Very hard. You take your time and be good to yourself. I hope he continues to hang in there and improve a little bit more.
Cassi440 said:
I am so sorry assybish. I am not ignoring you. My elderly dog is going through a health crisis and I thought I was going to have to guide him to the Rainbow Bridge to meet his bossy mate Lucy. He has improved a bit but right now I am so gutted from the physical fatigue of his care and the emotional scare I can't think my mY out of a bag. The letter is a great idea. Give me time to recover and I will try to help.
Thanks DLT. He is able to stand and walk now but his belly is still red from the days he was incontinent. I appreciate your kindness and don’t want to take away from the original thread here. I will post separately soon.
Awww, the poor puppy. I hate when my furry little ones suffer.
True, the original post was about the diagnostic merry-go-round. I have been on one for sometime and literally today, when I thought I was down to my last specialist appt, they found something so off I go for 3 more rounds of testing, etc. And like we said in the beginning, I am trying not to project, even though the doc says not to worry at this point. Oh what fun being a Sjoggie is.
Ab, if you are looking for a response from moderators, it is best to message us directly, and not assume that we were onsite on a particular day and reading your comment. We are all volunteers, and some of us have health issues, too. Criticizing the mods and members isn’t a great first step to uniting everyone in a common cause. Let’s talk further about writing a letter by message, okay?Thanks.
assybish said:
No Interest - shame - have to do it myself I guess very disappointed I thought the idea of a forum was to get together for the common cause.
Sjogrens foundation don’t have any impact and have achieved little in terms of research lobbying government or pharma/ and as I said they want a membership fee from SS sufferers .
Really am disappointed to get no response wonder if pople really do want to find a cure .
I have already contacted British Chinese and American research centres myself so guess I’m on my own.
Cassi don't worry I was n't expecting a response specifically from you and sorry about your dog - my favourite and most loved cat was killed by a virus she caught from cows only 6 weeks ago and I'm still devastaed by it so know how it feels with animals ( I prefer tem to humans most of the time,
Dancermom I didn't expect an immediate response from the moderators but I had received emails showing that you had all been active on the site. I wasn't jus expecting responses from Cassi or mods it was an open suggestion to all memebers and only 1 responded out of the many memebers. Yes I was and am dissappointed I have gone out of my way to help and supply good technical information and research findings etc which take at great deal of time and we are all ill on site - but to get no response from any one other than DLT88 is very frustrating to me as I thought I was suggesting something that would give us all a chance to get our suffering across to govenment and pharm and wanted many people to contribute and offer suggestions as to content which could then be condensed by mods into a formal "letter" coming from the forum not just individuals but hey I got it wrong again. I dodn't pm any mods exactly becuase I wanted it to be an open input from all members not just somehting written by me and a mod and I also wanted to see if members had any interest in taking action and not just moaning about doctors lack of treatments lack of research etc but I guess I got my answer. I am working my butt of personally writing to major research institutes who are at the cutting edge of SS worldwide and am getting some interesting responses but I thought it would be good if we as a acring sharing self supporting group could actually come together to give these organisations a better feel of the real situation with SS - most researchers are totally ignorant of the numbers suffering from SS and the degree of pain debilitation and suffering they experience as most of the stuff "out there" on official medical sites state time after time SS is a non life threatening, slowly progressing not very dangerous disease affecting only a few menopausal women so no wonder the politicians and researchers have no impetus to do anything.
Sorry I am unapologetic for my post other than to cassi who (understandably as it was she who was fed up with the poor treatment she was getting) thought I was waiting for a personal response from her . if you readad my post agin it is clear that I was asking all reders what they thought of the idea and mods especially - I was not saying go out and write it on your own but before I (and I assume the mods) were to put any effort into this then we needed a mandate from the large nimber of forum members and we got 2 responses - I guess that answers the question which is why I am so frustrated and disappointed and feel I am on my own. I don't post every day and have never comlained about my symptoms I just try to help with any knowledge I have or any personal experiences of what has helped me ( not a lot except squiggle toothpast - and even there I got 1 thank you) . Perhaps I just don't belong in a womens forum in a foreign country.
Sorry to have taken awhile to reply. In theory, I think you have a good idea but my brain is too tired to conceptualize a global plan. I was thinking of trying to meet with other associations within my medical center area to see how they got started and built traction and raised awareness.Then develop a plan that can be replicated in other large medical center areas. I live in the US. I just have no energy at the moment.
assybish said:
Cassi don’t worry I was n’t expecting a response specifically from you and sorry about your dog - my favourite and most loved cat was killed by a virus she caught from cows only 6 weeks ago and I’m still devastaed by it so know how it feels with animals ( I prefer tem to humans most of the time,
Dancermom I didn’t expect an immediate response from the moderators but I had received emails showing that you had all been active on the site. I wasn’t jus expecting responses from Cassi or mods it was an open suggestion to all memebers and only 1 responded out of the many memebers. Yes I was and am dissappointed I have gone out of my way to help and supply good technical information and research findings etc which take at great deal of time and we are all ill on site - but to get no response from any one other than DLT88 is very frustrating to me as I thought I was suggesting something that would give us all a chance to get our suffering across to govenment and pharm and wanted many people to contribute and offer suggestions as to content which could then be condensed by mods into a formal “letter” coming from the forum not just individuals but hey I got it wrong again. I dodn’t pm any mods exactly becuase I wanted it to be an open input from all members not just somehting written by me and a mod and I also wanted to see if members had any interest in taking action and not just moaning about doctors lack of treatments lack of research etc but I guess I got my answer. I am working my butt of personally writing to major research institutes who are at the cutting edge of SS worldwide and am getting some interesting responses but I thought it would be good if we as a acring sharing self supporting group could actually come together to give these organisations a better feel of the real situation with SS - most researchers are totally ignorant of the numbers suffering from SS and the degree of pain debilitation and suffering they experience as most of the stuff “out there” on official medical sites state time after time SS is a non life threatening, slowly progressing not very dangerous disease affecting only a few menopausal women so no wonder the politicians and researchers have no impetus to do anything.
Sorry I am unapologetic for my post other than to cassi who (understandably as it was she who was fed up with the poor treatment she was getting) thought I was waiting for a personal response from her . if you readad my post agin it is clear that I was asking all reders what they thought of the idea and mods especially - I was not saying go out and write it on your own but before I (and I assume the mods) were to put any effort into this then we needed a mandate from the large nimber of forum members and we got 2 responses - I guess that answers the question which is why I am so frustrated and disappointed and feel I am on my own. I don’t post every day and have never comlained about my symptoms I just try to help with any knowledge I have or any personal experiences of what has helped me ( not a lot except squiggle toothpast - and even there I got 1 thank you) . Perhaps I just don’t belong in a womens forum in a foreign country.
I think that you have a most promising idea here, your knowledge is extremely valuable, but your delivery was surely scalding! I strongly suggest you take a step back and reread your comments and accusations, and know that they were certainly not as promising as the idea.
I do not feel compelled to offer an explanation for my absence, but know that the mods and members are not always on here every day, and do not, can not read every word. Some would rather avoid this kind of reproach all together, it's not something I personally feel up for, but you see I signed up for it!
If you would like to open a discussion asking for volunteers for this project, I think that you will get help with this, as it is something that needs to be done. Just realize that we do not have your expertise or education, so patience is required, we don't know where to go with it. We don't know who the research labs are, and wouldn't it be better to include some names rather than just send them off without accurate direction?
If you would prefer to work with someone of your educational caliber, I have a personal friend who is a moderator here on BF, and along with dancermom and I, a member of mod support who would most likely be glad to work with you/us on this. I will have to ask him.