Just when I think it’s safe to go back in the water

I can’t forget that it’s General Conference weekend. I leave all the petty internet drama behind and focus on the GOOD STUFF!

Another Jaws attack!

Why do I think that all people with Cowden’s Syndrome are nice?  Or kind?  Or respectful?  Or want to help each other in their health journey?

I decided to give ANOTHER (different) support group a try.


I had another run in with a girl.  A girl I kind of [virtually] “looked up” to at one point because she’s a previvor..  (Well, she slammed that ideal into dust now!) – you think you are trying to share info. with the CS community because it’s actually kind of small, and then you get crapped on.  YET AGAIN.

And what’s so funny is this person blew smoke [in the group] days ago and said she was leaving the group.  She didn’t like that others weren’t giving her what she wanted, or something.  And then plays the “BLAME GAME” that SHE’S getting attacked when she’s spewing venom and nastiness of “poor me” stuff.

I wanted to make sure (months ago on Twitter) that she knew of the risks of colon cancer (because it was newly added).  Granted, I didn’t share it in the BEST way, but I apologized afterwards.  And we went our separate virtual ways.  Then a bit later I saw she was following me again, which was really odd.  But no matter.  I figured she had put it past her because why else would she be following me on Twitter again?  And that was why I decided to start reading her blog again.  Remember also I had looked up to and really admired her for her previvor status.  Not anymore, obvi.  I’m thankful I have some other contacts who are outstanding examples to me of what it means to be a previvor and I can go to them for questions/support/advice/questions, etc.  I’m glad this one vetted herself out REAL QUICK LIKE.

Now, this incident she and I had was MONTHS AGO.  If you can’t move on – then I don’t know what to tell you.  But I will suggest the following:

A), Don’t follow me on Twitter.  And 2).  Delete my comments from your blog.  Eventually I would have noticed they were gone and I too would have moved on. I thought we were all adults here (apparently I was mistaken)….no big.

Then last week or something she posted in one of the Cowden’s Support Groups.  I didn’t get involved directly but I was getting upset with her holier than thou attitude.  It wasn’t directed at me, but I was sticking up for the other person she was attacking.

But during all this I’d still visit her blog.  Because I thought she was incredible for making the choice to be a previvor.

NOW….wait for it.

She posted something on her blog in which I commented asking if she was BRCA+ as well as having CS.  She then came back into the support group (WHY NOT COMMENT BACK ON YOUR BLOG?  HUM?  DRAMA YOU SAY?  YAH.  I DON’T NEED ANYMORE OF THAT) – and went on about her medical history.  OK, that’s fine and dandy.  Then she starts talking about this mean Twitter girl (READ – ME) and that her doctor was speechless for a minute.  BECAUSE I TOLD HER TO MAKE SURE SHE WAS GETTING SCREENED FOR COLON CANCER!  BTW, I wasn’t wrong.  People who have Cowden’s Syndrome are at risk for colon cancer so a colonoscopy is part of the screenings.  Just sayin.

But be an adult for Pete’s sake.  Don’t be a 6th grader and air your dirty laundry with me in the support group in front of everyone else.  Please don’t post this garbage in front of newcomers who might be scared out of their mind with Cowden’s Syndrome and all the unknowns it brings.  Have some class.  Sheesh.  She went on and on about me so passive agressively that I didn’t even read the entire post.  I just laughed out loud when I read it!

I am the mean, mean, Twitter girl!

I’m not perfect. I don’t share things the right way all the time.  CS is scary. And when I find someone else who has CS I’m like, “WAIT!  Maybe you don’t know about X or Y or Z!” – So….

She calls me out in the group….when, wait a moment.  This is now the SECOND time she’s had a run-in with someone.  Things that make you go hmmm.  Maybe it’s not me after all?  Maybe it’s her?!  In fact, it IS her.

This is not support.

[I am not the best person to offer support but I can sure as hell tell you this is not it.  Once is a while a person will find my blog searching “Cowden’s Syndrome support group” and this is what they will know?  Well, I am here to tell you there ARE kind and loving people who have CS.  I have virtually met 2 of them.  Granted, there are more I know.  But I’ve made virtual connections with 2.  And they are amazing people.  So, if you are diagnosed with Cowden’s Syndrome do not give up hope.  Keep looking.  If you look online to the major places where you can find support groups and they don’t work for you, keep looking.  KEEP LOOKING.  That’s what I had to do.  And, if you get bullied or something like that from certain people, block them and move on.  I promise you WILL find support. It might take a while. Or it might not even be VIRTUAL support.  Maybe it will be in another way.  But just DO NOT GIVE UP HOPE and do not give up looking.]

I apologized already for the incident months ago to this person; I was over it but some people hold grudges.  That’s OK.  I know I’m not perfect and in my way of trying to help another person it backfired.  That’s OK too because I know I had only good intentions.

People who have CS aren’t all wine and roses.  So what am I going to do next time?  I don’t know.  Am I going to share anything I’ve learned or read with anyone about anything?  Well.  Granted. I shouldn’t let this fruitcake ruin me or my day because what if the next time I meet someone with CS and they do not know about the new screening guidelines and they can take it to their doctor to share?  I need to change my delivery is all.

I don’t know who to give the credit for this. A friend posted this pic on Facebook and I thought to myself, “WOW! How right it is for what happened a few hours ago.”

I put this, and it all, in God’s Hands now.


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