Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Sandi 2 years 5 months ago #66801

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
Is everything ok, Sandi? Haven't seen you on in a while.

Please Log in or Create an account to join the conversation.

Sandi 2 years 5 months ago #66827

  • MelA
  • Offline
  • Posts: 883
  • Karma: 2
  • Thank you received: 285
Cindy I would think she's ok - she was here 3 days ago.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Fay

Please Log in or Create an account to join the conversation.

Sandi 2 years 5 months ago #66832

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
Oh, ok, Thanks! I must of just missed her! So used to seeing her post almost everyday.

Please Log in or Create an account to join the conversation.

Sandi 2 years 4 months ago #66909

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
Hmmm, still nothing. Cindy should someone call 911 and check up on her welfare?

Please Log in or Create an account to join the conversation.

Sandi 2 years 4 months ago #66911

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
According to the userlist, she was on today, so I feel better.

Please Log in or Create an account to join the conversation.

Sandi 2 years 1 month ago #67716

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
Has anyone heard from Sandi recently? It seems to have now been over a month since she has been on. Would Jeff or Carolyn know? Does anyone know how to best contact them?

Please Log in or Create an account to join the conversation.

Sandi 2 years 1 month ago #67724

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
I've been thinking of sending her a private message. I think she still checks the boards but doesn't reply very often anymore. Don't know who Carolyn is, but you could send a private message to either Sandi herself or Jeff or Carolyn.

Please Log in or Create an account to join the conversation.

Sandi 2 years 1 month ago #67730

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
I think Carolyn is the site owner -- Sandi herself mentioned her on my thread when we were talking about an app for the site where people could track symptoms against treatments... I will send her a PM!

Please Log in or Create an account to join the conversation.

Sandi 2 years 2 weeks ago #67944

  • johnmerrick
  • Offline
  • Posts: 118
  • Thank you received: 8
can anyone update on sandi please?

thanks

Please Log in or Create an account to join the conversation.

Sandi 2 years 2 weeks ago #67945

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
Still no word. I keep checking on when she last logs on, but she hasn't posted in a long time. I hope she's okay.
The following user(s) said Thank You: johnmerrick

Please Log in or Create an account to join the conversation.

Sandi 2 years 2 weeks ago #67951

  • johnmerrick
  • Offline
  • Posts: 118
  • Thank you received: 8
you know the problem could be financial instead of medical. maybe she wants to get compensated for the work she does. i mean she does a lot of work here she is all over this place posting. whatever the reason it's a BIG loss.

Please Log in or Create an account to join the conversation.

Sandi 2 years 2 weeks ago #67954

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
Yes, a big loss. When you posted that lab data I was thinking. Gosh, can anyone but Sandi respond to that?

Here is another jewel of a post by her. Was totally stunned when I saw this. She had Herpes viruses as the culprit YEARS before I created my ITP table. Even has Candida as a possible influence.
pdsa.org/discussion-group/7-treatment-general/29145-dapsone-lyme-disease-itp-connection.html#54260

Poseymint may be of help when she catches up on posts. JJ too?

You may not have been around. Rob16 and momto3boys used to be big contributors not that long ago too.

Please Log in or Create an account to join the conversation.

Sandi 2 years 2 weeks ago #67956

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1897
  • Karma: 7
  • Thank you received: 545
I noticed the lack of posts by Rob16. Such a shame he was so helpful when I was first using this site.
I notice there is a pdsa Facebook group too. I wonder if any of them post on there. I haven't joined it, I'm wary about Facebook and it's invasion of privacy

Please Log in or Create an account to join the conversation.

Sandi 2 years 2 weeks ago #67957

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
Mrs. B, there are 2 facebook pages. I joined the wrong one at first but finally found the right one. I am a member and do post there once in a while. Haven't seen anyone from here post there. Unless on Facebook, they are members under different names and I don't recognize them.
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Sandi 1 year 9 months ago #68487

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
I popped in here to see if Sandi resurfaced. I hope she is doing well and just choosing not to participate for whatever reason. If you're reading this Sandi, know you have made a positive difference in so many lives.
The following user(s) said Thank You: mrsb04, Hal9000, johnmerrick

Please Log in or Create an account to join the conversation.

Sandi 2 weeks 6 days ago #71890

  • Rob16
  • Offline
  • Posts: 1120
  • Karma: 2
  • Thank you received: 269

I noticed the lack of posts by Rob16. Such a shame he was so helpful when I was first using this site.

I just looked in at this thread to see if there had been any word on our dear Sandi. How sweet to stumble on those kind words from you, Mrs. B! Life became more and more demanding, and I had to cut out some important activities in order to make room for others, like raising my six-year-old grandson. I intended just to cut back on my time here, but found it hard to stay involved without being sucked right back in, so except for occasional lurking, I just quit coming back. 

Ellen has been stable all this time, with fairly low platelets being an annoyance more than anything else, and only becoming a small problem when she needs to get her platelets up for a medical procedure. My own autoimmune journey is a longer story for another time.

Sandi's reason for leaving is her own business, and I am confident that her life is better for it, full of children and grandchildren and trips to the beach, without constantly checking her computer for new postings to respond to. My only regret is that I did not fully let her know how much her work was appreciated. Someone mentioned that her position was uncompensated, in which case her contribution was even more remarkable. I hope she knows that this forum has managed to stay alive in her absence, thanks to so many of you who have remained active and helpful to all of those who arrive here as scared as we were way back when.
The following user(s) said Thank You: johnmerrick

Please Log in or Create an account to join the conversation.

Sandi 2 days 5 hours ago #71915

  • johnmerrick
  • Offline
  • Posts: 118
  • Thank you received: 8
i'm back just to see if sandi came back. looks like she hasn't.  thank you for all your help sandi.
 i hope where ever  she is she is getting all the help see needs.
god bless.

Please Log in or Create an account to join the conversation.

Sandi 1 day 22 hours ago #71916

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
It's been almost 2 years since Sandi has posted. Don't even know if she's still a member.
I do miss her words of wisdom.

Please Log in or Create an account to join the conversation.

Sandi 1 day 12 hours ago #71918

  • Rob16
  • Offline
  • Posts: 1120
  • Karma: 2
  • Thank you received: 269
Sandi is still listed in her profile as a member and as a moderator.
Her last post was May 26, 2019 after fading out over 3 months.
From elsewhere on the internet, she was enjoying family and travel as of this fall,
so hopefully there is no cause for concern.
Wherever you are, Sandi, thank you!

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo