New website advice

[andreafm]

Just wanted to let people know that the front page Activity Sheet [the little House on the red menu's above] does not update very quickly at all....which means you don't think anyone has replied to your question when they may of.

It can take over a day for the posting to reflect on the Activity Page and so I suggest people do not rely on this if they are wanting to see up to date postings/replies.

Instead you can click on the Questions or Posts menu [above] and then select "Activity" from the drop down menu which is to the right of the posting.

Hope you find this helpful and can make sense of my explanation....let me know

Andrea

[goodlife]

Andrea, cheers buddy I'm still trying to get to grips with it... though sadly I have had a few PM's now from other friends who are leaving. Very sad....but let's keep trying . Jill xx

[andreafm in reply to goodlife]

Yes it is sad mate...I am going to keep posting as much as I can....but it is feeling rather lonely...apart from you and a couple of others. I am sorry to hear others are leaving but I am willing to keep trying and each time I write to Healthunlocked with a problem they do seem to be dealing with it even if the layout remains the same

Perhaps once the technical issues are dealt with the other matters can be looked at more easily.

We are now getting notifications by email which will flag up when someone has replied to a posting and if you click on the link in the email it will go directly to that part of the posting....so that's a bit more helpful...

Also I had problems access via my smartphone but closed the phone right down and then started it up again [this empties out the cache and temporary files] and it now works o.k....slightly different layout to my laptop though...but does at least work now.....trying to be thankfull for small mercies as they say.

Andrea

[behcetshurtsbeyondwords in reply to andreafm]

Sigh... this is just plain frustrating This site became a lifesaver for me at a time when I needed it the most. I quickly realized that this wasn't just a place I could come to once and a while when I needed a question answered, but that it was becoming a place I could come to at any time of the day, however many times a day I needed, just to feel connected to the world again and feel like I belong somewhere. I am from Canada, not the Uk, but I decided to keep coming back here because it was the most active support forum I could find for Behcet's. Its just very, very sad and discouraging that all of these changes and supposed "upgrades" have made things more difficult for all of us, and now, it's becoming fairly inactive. I still have many times where I am unable to sign-in without great difficulty and sheer frustration, and some times I just choose to give-up and take a break because the added stress is not what my body needs right now. But then I start feeling lonely and feel like I'm missing out on something. I keep coming back to try getting in, but I can definitely understand some other's frustrations and choices to not bother coming back. Like you guys have said, all we can do is keep posting, keep bugging the site administrators, and keep hoping and praying that this site becomes the comforting and supportive place it once was.

I just had my Infliximab infusion last Thursday, along with 200mg Solu-cortef injection-- but I'm still feeling very crummy. I've gone into a bad flare now for about a month where I'm getting piercing, stabbing, and ripping pains in my intestines and having issues with bloody and green coloured mucous. I've also been battling exhaustion and bad pain attacks elsewhere in my body. I really do hope that things improve for us on our forum, sooner than later, because I'm not too sure how much more frustrations I can put up with.

-Jenna

[andreafm in reply to behcetshurtsbeyondwords]

I really get how you feel jenna and wouldn't want anyone to make themselves worse with the added frustrations of trying to logon time and time again. I too am finding it really difficult at times....but am determined to try and keep talking to people as long as there are people out there to talk to.

My feelings are if I stop doing that, then others will stop doing that and then the forum will definately die and fade away.....I know it is really difficult but it is up to us at the end of the day..... I do respect other peoples decisions.

I am so sorry you are still feeling crummy and the infliximab is not really helping...I am also taking Infliximab and although it has been the best for me in terms of no or little side effects....it isn't really sorting me out either. I guess that is the nature of the beast as they say...it rather has a mind of it's own doesn't it.

I can't say I have ever had remission or really a gap in my symptoms and I am a right battler...like you sound to me..... But there does come a time every now and then that all roads lead to one and life in itself just becomes really hard and very frustrating.....that's when this forum comes into it's best and we have always been there for eachother....I do hope the demise of the forum will not be down to an upgrade

We are also having a heatwave here, which for some in other countries may not be that hot. But for us Brits here in the UK we are just not used to it. It was only last month we were still having to put the heating on because winter wouldn't go away....so the heat where I live went up to 33 degrees yesterday, which might be lovely if I were near the seaside, but alas I live near Heathrow Airport [our busiest] just outside London and there is no air here......I can here the rumbling in the distance of an impending storm and the thunder has been going on all night - with a threat but no rain.....not often I pray for rain but I would fancy it right now just to clear the air a bit.

Just for a little laugh...I am sitting here early in the morning in my bikini as I have just kept on sweating all night and ran out of things cool enough to put on.....and no I am not going to post a photo of that...I will leave it to your imagination LOL

Hope you pick up soon and keep in touch

Andrea

[tinkmbs]

Hi both

Been having many problems too, still here though, it's sad to loose people all we can do is hope that one day they will come back.

Going through a bad flare at the mo with ulcers down below feeling pretty down.

Take care sue xx