Is HU making adjustments? Yesterday I received my first summary of what's new (most recent posts) but everything was a day or more old. There was nothing from that day, though there were new posts. I have not received notifications of individual posts for two days, though when I go to the site there are new questions, responses, and posts.
I thought I had things fixed when I changed my settings a while ago. I was at least getting information about individual posts.
Frustrated (aka Pat)
I had to laugh - at least the tagging worked properly for your post Pat! And INFORMATION is not what we are getting!!
Seriously, the site has been quiet lately but despite that, I don't think I'm getting all notifications and as you say, what does arrive is still delayed. Until we can be sure that notifications are working reliably, just check the 'Latest activity' (or 'News feed' if you are a member of more than one community). That's very inconvenient I know...
You are far from alone in your frustration!!
Neil
I do just go to the site, which is how I know that I have missed notifications on two sites for the last two days. I didn't process the tag. Funny!
There was a very quiet day and I thought my Latest Activity page had frozen - I kept reloading it but to no avail. In the end I realised, though I wasn't sure, that there simply hadn't been any posts.
It is once again taking ages to load every page....sigh!
Also, I think we need to make it clear in our responses, exactly who we are responding to, because responses to individuals, in the middle of a thread, are often appearing a long way from that person's post....... and if you can make sense of that sentence, well congratulations!
sparkler x (very slow and unsparkling)
Hi Sparkler, I was a bit like you yesterday - thinking the site was unusually quiet, and wondering if it had frozen or something. Hopefully it means people were all feeling well and able to do other stuff. For me it was washing day, being Monday, so that kept me busy. In between washes, I was working on the design of a publicity leaflet for a community centre I'm involved with (as a volunteer). I was a nurse in my former life, not a leaflet designer, but after retiring, I've been finding other outlets for my energies.
Which makes me think... I wonder how many other people have had to give up things from their earlier life, due to CLL, but are finding new outlets for their creativity, that they never expected?
Anyway, I started this post so you wouldn't be disappointed by another quiet day on this site. And because I felt like a break from leaflet designing. And because I know what you mean about the confusion in long threads. It's not always clear, who is responding to who. I am responding to you (Sparkler) right now. Which is probably kind of obvious. But it's a open/public message, so anyone else who wants to be part of the conversation is very welcome. And if by any chance this became a longer thread, then later on, it probably won't be so clear who's responding to who.
So, as you say, we need to make it clear in our responses, exactly who we are responding to. Starting off with people's names is a good start - maybe even listing several names, if several have been involved in a conversation.
I hope you are having a good day, and are now not so "slow and unsparkling" as you described yourself earlier.
Paula xx
Hi Paula.
Thanks for posting, so I wouldn't be disappointed to see nothing new. Lol. I seem to have bursts of activity on the site, when I post a lot and then I run out of steam and just read others'.
I have had to give up so much since my dx but it will make me even more sad to talk about it......maybe later..... It's good that you have found new outlets for your energy though.
I'll let you get back to your leaflet designing now 
sparkler x (speeding up a bit now)
Hi Sparkler,
I'm also very closely attached to my computer, and have become much more involved with this online community recently. It's partly because my CLL is "progressing" so issues here are more relevant. It's also because I feel I'm beginning to get to know different people, and feel for them in their different situations. I certainly feel for you, with your pain and mobility problems and broken tendons - as if you didn't have enough other things to deal with... I do hope the physio helps.
Re new outlets for energies - I think the support you give to others on this site, and your very human presence here, is definitely a positive outlet for your energies.
Paula
P.S. Just wondering which other CLL communities you are part of?
Hi Paula
Like you, I enjoy feeling that I am getting to know (as much as you can, online) some of the people here.
Thanks for your kind words regarding support. However, it works both ways - I have received much support too, from others, including yourself. That is what makes forums such as this, so good; we can all give and receive support. It easier when there is a 'human' feel to the site and of course, support comes in many forms.
Warm wishes to you
sparkler x
Hi Sparkler,
I can't imagine a slow sparkler, so please get your sparkle back. I had hoped that you were doing somewhat better, having seen more from you lately than we've had for too long a time...
Neil
Good to hear your promising news, Sparkler and that you've recovered some of your sparkle. Well done for pushing and pleading - I'm pleased your efforts have been rewarded.
I suspect you are right about pain being your reward for extending yourself, but let's hope we are wrong about that. Do make sure you ask your Physiotherapist about what kind of warm up process is recommended for you and also what will help with the post effort recovery process. Will soaking in warm water help and are any additives to the water (different salts, etc) recommended? Make sure you take a list of questions with you that you want answered along with a friend, notepads and a voice recorder.
I really hope you find someone that has experience in what you've been through or very similar.
Neil
Slow days on the site are a good thing if they mean no one has issues or needs help. The day I posted about there were posts - I just didn't get any notifications ohter than a day old "what's new at HU" or something like that with a list of posts - all old. I would love to see a day in the future when all of the health oriented on line sites become social clubs, because our health issues have been resolved, but we enjoy communicating. I'd also like to have some of the people who follow the site and are doing very well check in periodically - doesn't have to be a regular thing, but a yearly report or something would be nice to see and encouraging for new comers.
Sparkler - I'm so sorry you are having such a tough time with the tendon issue. I had one friend several years ago who had a torn achilles tendon because of Cipro. I know she wore a "boot" for a long time. She is fine now.
Hi Pat
I hope you receive notification of this response to you......
I wasn't disappointed the day there were no posts here (that was a bit of a joke between Paula and me) but I was concerned that the page may have frozen.
It would be good to hear from people who are doing well from time to time, I agree but I recognise that we are all different and this is reflected in the way we all choose to use the site. Some read and don't post at all.
Warm wishes
sparkler x
Dear Sparkler, I have mild plantar faciatis which gives enough daily issues. But to have to go through what you're going through would be very difficult. The only thing that helps my plantar f. is a joint supplement. It's called GLC 2000. I get it online at GLC Direct.com. I learned about the horse version GLC 5500 at the racetrack and the GLC 2000 from Hall of Fame (and now riding again) Gary Stevens. It has really helped me and my horses which are all off the track. Needless to say, Everyone here is included in my prayers and I know other members are praying also. There is nothing more powerful than prayers ! ps I have taken Cipro and Flagyl for a recurrent tummy infection, but so far don't think it has caused me problems, luckily.
Hi Buckinhard
Thanks for thinking of me and responding.
I'm sorry to hear you suffer with Plantar Fasciitis; I believe it can be very painful.It's good that you have found something to help but are you not able to recover completely, or is this something that you have to live with forever?
I used to use something, recommended by an American friend, called 'Mane and Tail' - you may have heard of it, as it's for horses? I used it on my hair and it was brilliant for a sleek and shiny look!!!
Best wishes to you
sparkler x
Hi Sparkler,
Heehee, what cowgirl doesn't know about Mane and Tail ! It's sold in tack shops as well as in shampoo aisles in the grocery stores, it's very popular. Funny thing, I buy large bottles of inexpensive people conditioner for my horse's tails. Mane and Tail is too expensive when one bathes as many horses and as often as I do.
I don't have much trouble with the P.F., when I feel a little something coming on, I take the joint supplement then I'm good to go. It flares up since I wear riding boots 90% of my walking life then I switch to sandals and I aggravate the PF.
I see another Dr for the nausea thing I get, find out what he has to say AND I will tell the Dr. I prefer something other than cipro/ flagyl combo. I am so sorry you have deal with your terribly sore tendons, even my little attacks is a twist in the britches. I hope you're getting a tad bit better as time goes on.
Denise
I've just received an email from HealthUnlocked saying that they have just "introduced a major improvement to new member registration."
Of particular interest to us is this additional news of a long awaited breakthrough:
"In addition to improving member registration, we have also been very busy fixing some of the biggest issues that community administrators and users have notified us about:
* improving the reliability of daily/weekly notifications which should be running smoothly now for everyone
* releasing the ‘Show More’ button at the bottom of the personal NewsFeed & Community Activity Feed
* access to the HealthUnlocked messages (which was affecting 1% of members)"
(My emphasis above - please let HealthUnlocked know if you are still having difficulties with notifications via their feedback page: support.healthunlocked.com/...
You're welcome to complain here too of course.)
The announcement concludes:
"Beyond fixing errors and building new features, Joel Patrick, our Head of Engagement, launched a new comprehensive process for user testing. In this regard, we started inviting a selection of administrators and members who are taking time to give us feedback about improvements to HealthUnlocked before they are rolled out.
Thank you for all your feedback. We are already taking it onboard as we refine these new features."
Neil
sounds wonderful ! You guys really do a wonderful job with this FABULOUS site ! I am grateful to you and everyone who posts ! Thank you Neil and Joel.
Hi Just when I felt I was getting used to the new site HU have gone and changed things again. Hopefully this time it will bring about an improved site.Best wishes
I just tried the link to HU as I am still not getting the notifications in the formats that I have requested, and now, when typing a post or reply I get a bar across the area where I'm typing about cookies, si I can't see what I 'm doing. I filled out the form with my comments, sent it and got a message saying that I hadn't, but with everything blank.
I'm afraid that I'm underwhelmed with their "support"!
Thanks Pat for providing HU with feedback on this problem. If you'd like me to follow this up, please copy me with the response you 'received' from HU.
That cookies advisory appears on my PC as a semitransparent banner across the bottom of some (not all) of the site web pages. I've noticed it can be an inconvenience if I'm replying and my reply drifts into the cookie advisory area, so I sometimes need to resize the reply box (which can also prove hard to do vertically at times).
I've noticed that notifications are now working far better than they have in months, so the recent fix does seem to have worked somewhat. I say somewhat, because I still don't see notifications for all the changes that are occurring which used to be the case with the old site.
I couldn't get my post to them to go through. I got to their page, filled everything out and got a message back saying that I hadn't done something that was needed. I had. When I went back to the page to try re sending it it was blank. I played around trying to retrieve the filled out page and got no where. I suppose I shoul try again, this time telling them about my experience with their "support" page.
Trying again is all I can suggest Pat. You should get a 'knowledge based' web page of possible suggestions based on the content of your support request email, but in my experience, that has only rudimentary help suggestions so I've always proceeded on to sending my support request, after which I get a proforma acknowledgement email and then maybe a specific support email from Amedeo.
Although there are still problems with the site (pages are often painfully slow to load, for me) I can vouch for HU that they are trying to sort everything. I am one of the members who was contacted by them for feedback etc., and I have spoken on the phone to Joel Patrick - he asked me to tell all of you this, as proof! I told him about as many problem areas as I could. I am confident that things will improve......
sparkler x
This is my rant for the day
Confused are the dr.s still using chemo with new drugs
new to the site
Working with CLL!
Medical update with no Ibrutinib 
