17 replies to this topic

[pammartin]

Because I can fall into the unintelligent thinking person I tend to be, (on a regular basis, I fear) I had to share a story.  (Notice I did not say 'short' story.) 

Sometime in the past two weeks I posted my email on here, was not thinking of email, instead was thinking of Facebook connection.  So, within 12 hours I received my first congratulatory email.  There was a woman who passed away from CML overseas, and she was going to leave her fortune to me, if I followed a particular set of rules, the first of course was me sending several hundered dollars to the place of origin to 'settle her affairs'.  The email was ready for unspoken questions, why me?, well this woman has been following my progress on the CML support group, (ok, been there less than a few weeks), I was chosen out of who knows how many, (why does everyone get that same letter?), and the funds are guaranteed, all you have to do is send your money over there. 

I was instantly in a rage.  Yeah, I know there are nasty people in this world, and they take advantage of others, but there is no low where someone will stop before crossing so many social rules, they are less than human.  I read daily about people who are struggling to get their meds, pay for them, meet the copays, and here I have this con artist wanting me to send $500, I think don't remember, was high dose, and I will be rich.  Yeah, I send five hundread and they disappear.  Although enjoy people trusting them comes with time and understanding.  This was just ridiculous.

I believe this kind of behavior is prutrid and vial.  Not only are they taking advantage of some very nice people, they are ruining the acceptance of another because of the behavior.

I would hope no one takes these correspondences seriously, and please do not send any money anywhere, no matter what the case.  I supposed I should report it or do something, that usually goes no where.

So fellow CML patients,   beware of your caring and compassion.  We come here for information and get it, but are not waiting for the 'rip off',

Beward, my fellow CML people, there is a monster out there wanting to relieve you of your cash. 

stage

[PhilB]

Hi Pam,

There are indeed some very nasty people out there, but there are ways to fight back...

A Scottish author created the character of Bob Servant and had enormous fun replying to the scammers and basically driving them insane:

http://www.bobservan...vantEmails.html

The Lions, Gold & Confusion starts slowly, but builds to dizzying heights!

Maybe we should all get together and try something similar for you?

Phil

[pammartin]

Hi Billie,

I hope you had a chance to get some rest.   I hated Facebook, then one of the instructors I had a class with posted all notes on the site.  So I was forced into submission, bit the bullet and joined.  I still do not post as much as others, I just can't get into the idea of telling someone I am going shopping at Wal Mart, headed to a movie, or going out to eat, unless they are meeting me, I would sincerely hope they didn't care!  But I do have some pictures, ok well many pictures of my son and of the trip we took this spring.  I hedge a bit on info, this way it isn't giving exact location.  I do pay bills online, make appointments online, even order pizza online, so I guess I have fell into that trap.  Where I fight is, I am not interested in a smart phone, (ok everybody pick yourself up off the floor and breathe again).  I have a huge screen for desktop, bought a fairly good sized notebook just for that reason.  I am not going to look at a 2in. by 4in. screen and 'surf the web' or read emails.  I did look into a notepad, but I just wasn't as interested as I would have to be to pay the price, guess I am showing my age with the 'no smart phone' thingy.

It sucks you had such a horrid experience with the wonderful 'social network' site.  I admit to being drawn in, I now play several of the games and check out what others are doing.  It has been an easy way to tell several people who do care how I am doing and what is going on, but I still prefer a face to face engagement if I want to have any kind of conversation.  I have always been a body language reader, so when I do not have the person in front of me I end up second guessing and reading tone into words, disasterous when communicating with others via email.

I used to have problems with sleeping, but then along came Ambien, my problem is staying awake about half hour after I take the pill. One moment I am typing and then the next moment I am snoring and slobbering on the keys.  Oh yeah, I fell asleep.

I am off for blood work, will let you know if you are the winner.  Someone had to hijack your information, that just really sucks!  Let me know if you find any of the disgusting people who try to take advantage, I will put on my boxing gloves and be right up to help!

Get some sleep

Pam

[HeatherZ]

Phil - that is hysterical.  I definitly need to look into getting the books.  I nearly wet myself while reading.

[pammartin]

Phil!  That was fantastic!   Lets set up a group meeting and get some payback going!

[jrsboo]

Billy,

Go up to "Your Stuff"

Click on "Profile"

Go to the right side of the page.

Click on "Edit Profile"

Under "User Name" make sure the red dot is in "Hide"

Under "Email" make sure the red dot is in "hide"

Leave everything else blank except for your zip code.

At the bottom of the page click on "Save"

You will continue to see your full name but others now only see the first part of your email address as your name (everything after the @ symbol will be hidden).

--Caroline

[LivingWellWithCML]

A few months ago, someone offered to sell me part of their liver because I had posted some questions regarding elevated AST and ALT levels.  The post totally caught me by surprise!

It was compelling, but a bit out of my price range .......... LOL

[GerryL]

Hi Dan,

I would have asked did they have a nice chianti go with it?

Hannibal Lecter: A census taker once tried to test me. I ate his liver with some fava beans and a nice chianti (Silence of the Lambs)

[pammartin]

Hi Billie,

No secrets, I wanted you to win. I never received a call.  Either this means I am not worthy of the attention anymore or they are consulting.  Either way with an oncologist and a hematologist you would think one of them would have returned my calls to their office.  I only called once to each one, stating I had bloodwork done and would appreciate results, so not like I was being a pain in the arse.

I wanted to talk to at least one of them, I have a lymph (I think) at the hairline that has went bananas and started to grow me a horn.  That and my b/p is down quite a bit, almost getting to the possible too low point, I had to stop at pcp yesterday for b/p check and she was a bit concerned.  Add to that, the increase in the Sprycel has started the water retention, my ankles look like I am 7 months pregnant.  These may be all regular side effects, but as everyone knows, panic mode kicks in, the diagnosis still way too new.

So here I sit grumping with both offices, I realize I am not as ill as some and may not need the attention others need at this moment, but the frustration mounts as I sit and ponder.

Hope you are feeling better.  I am hoping I get a call today, as soon as I know, everyone here will know.

Pam

[pammartin]

That is one of my all time favorite lines from a movie!  And Anthony Hopkins delivered it with style and grace, let alone a chill I still feel after umpteen viewing's!

[GerryL]

Hi Pam,

I'm on Gleevec - which can send your blood pressure down as well and I was able to come off my BP medication.

I also get fluid retention with the TKI, which funnily enought then sends my blood pressure up when the fluid retention is at its worst.LOL I also don't eat much salt and drink a lot of water and exercise etc. but nothing really works apart from taking a fluid tablet a couple of times a week.

I loved Silence of the Lambs both the movie and the book. I think Anthony Hopkins is great in anything he does.

[pammartin]

I also love Happy Feet, am partial to Penguins, didn't know about part two, I can't wait.  I picture his offspring being a part of the movie.  I have never heard of the Bear movie.  Or if I have the brain is not responding well today.  I will look it up!

Eventually, I hope you get some sleep, Night Owl.  take care

Pam

[pammartin]

Billie!

You won, you got it!  I hit 502,000 today.  White count is holding at 4,200, magnesium is back to acceptable levels, and hemoglobin is nearly perfect.  I am a bit low on potassium, but hey they took away the Hydrea, so I went from loosing 4 pills a day and only gaining one.

For anyone else you would have been right on target, unfortunately, as was mentioned, I can be a pain in the ass, so I had to make you wait on your winning number.

Hope you are getting some rest and feeling better!

Pam