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#1 pammartin

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Posted 19 March 2012 - 02:46 PM

No one knows anyone else for the most part on this board, we are all bound by a modem of trust and lymphoma or leukemia.  Everyone is human and everyone is entitled to an opinion, no matter what that is.  This group is one of the most caring places I have found, including my own family since diagnosis.  I believe each person should step back and consider why we are here, we all have lymphoma, leukemia or care about someone who does.  It is not our fault we have these diseases, and looking at the possibility someone could be pretending to have these diseases is a horrific thought, no matter what the reason.  If anyone is interested, please look for my post titled 'Thoughts' from a few weeks ago.  This is an open site, and if I have to read about Oakley sunglasses or other gibberish within a thread about CML, then I am not ashamed to post something I felt was important.  If the devil is going to rain down upon my head, I have a pretty hefty umbrella and my head is even harder. 

Thanks for reading

Pam



#2 Judy2

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Posted 19 March 2012 - 05:11 PM

Hi Pam,

Thank you for posting. I have been feeling a little leery with some of the posts on this board the last month or so,  http://community.lls...e/134765#134765  I do not wish to offend anyone, the only thing I ever wanted was to be of help. I feel that I have met many wonderful and caring people on this board, so much so that I have tried to go out of my way to offer as much support as I can. In turn people have been wonderful to me, my CML journey has been made easier by all of you on this board. At this point, unfortunately, I no longer know who I can trust. Susan had posted a heartfelt reply to a discussion and now I find that post has been deleted. We are all dealing with a devastating and lifelong illness, we need each other, we offer support and a place to vent and  now I do not feel the level of trust I once did. So, thank you, Pam, for posting. I'm hoping I will, at one point, feel more comfortable with this board again.

Judy



#3 Sunshine48

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Posted 19 March 2012 - 05:26 PM

Hey Pam and Judy! I read your post on "Thoughts" from the link Judy added and I agree with you whole heartedly. I know who you are talking about too they messaged about changing my faith and I'll be cured and stuff. Like This should be a site to where we can all come talk, vent, look for support among other cancer patients and not be judged. I think it's sad people have moved to these types of sites to promote, scam or whatever else they do to people especially in a lot of cases people whom are vey vulnerable. It's like craigslist, when you post something to sell and you get replies saying hi send me your information and i'll mail you a check and then you can drop off your merch somewhere. Really? It's sad what the worlds come to and this is still the internet and we don't know each other personally so always be guarded with personal information but just know there are real people out here like us who truly care ! by the way yes the transplant doctor told me i could have my dog near me when I get released for that first 100 days just not to let her lick my mouth or touch her bowls... It's Cats and reptiles they say you can not be around so YAY I'll have Lilly by my side at least that'll be something "normal" to have around since I'll be in lodging out there and not my home. Stay strong ya'll and I pray for everyone on this site daily!!!



#4 CMLSurvivor

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Posted 19 March 2012 - 06:15 PM

I agree with this. It is incredibly disheartening when people take advantage of others. Especially when they are fighting an illness/desease or are elderly. It is incredibly hard to tell who is telling the truth and who is not when on a computer. Not like back in the old days where you would have a face to face conversation and could get a feel for the person by there actions and tone in voice. Even on the phone you could get a feel for that. I have banned Face Book because I feel people have forgotten how to socialize due to the computer. My own personal feeling. Also with everything else to deal with, I don't have the time.

I think for most of us on the CML board, who have CML or are a caregiver for someone with CML we are here to help each other out, and it is like a violation to us when someone missuses this site. It is for us to help each other out and support each other with our CML troubles which can cause a whole host of other problems, like depression, anxiety, etc.

Hopefully we can weed out the missusers!!! Not sure that's a word, but I don't know what else to call them that is polite.



#5 pamsouth

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Posted 20 March 2012 - 01:17 AM

Hey Jud & Pam,  I guess I don't follow the threads as closely as you guys.  What is going on?

sounds like someone is exploiting on the discussion board, yes?

Pamsouth


PamSouth


#6 Marnie

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Posted 20 March 2012 - 07:50 AM

I could ignore the post and simply acknowledge that the guy is a jerk.   But what really irritated me was that he filled people's inboxes with additional messages.  Sheesh!  That said, the person to whom the jerk posted did take care of it very nicely (sounds like he got a barrage of messages) and I don't think the inappropriate religious guy has posted again.



#7 pammartin

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Posted 20 March 2012 - 09:19 AM

Hi Marnia and PamS,

At the risk of deletion and offending, I am going to post this reply.  Although it is vague, it is the best I can do.  When I posted my original 'Thoughts' and again yesterday, I was not addressing the religious posting many of us received, although that one annoyed me it did not provoke me into a response.  I am going to have to leave it at that.

Thanks for reading

Pam



#8 Sunshine48

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Posted 20 March 2012 - 04:56 PM

Hey Pam, sorry about the bottom of my last post about my puppy, it was the other Pam who had asked lol. i'm sure you were confused or thinking I was crazy... I get what you're saying with your posts though, I gave my personal email and phone number to someone thinking I was being a friend and helping someone out less fortunate then myself and it was all nothing which was very disappointing. Like you said we do not know each other personally an be careful who you trust and what you do. I agree whole heartedly though if anyone is asking for morney or anythign else then they are a scam and or here for the wrong reasons! This is not a place to gain sympathy and from others who are battling this cancer in order to gain money or profitt for something else. It's suppose to be a place where we come to talk, vent, ask question and be around people who are in our shoes. If my post gets deleted then so be it but people who are here for wrong intentions should leave, it's not fair to the people who are here who want and need support from others battling..






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