New OM plaque vs total eye removal

Posted By
Anonymous
4/13/2013 11:11pm
Activity
Replies: 7

Hi folks, much to my disappointment, I decided last evening to remove my original thread on this subject. I wanted to tell those of you who were kind and gave me some good information on this topic, thank you. Please feel free to post again. I think many OM people like myself struggle with this decision on treatment. . I know, I did.

I m so sorry you have had problems, I cannot understand what has happened to all the forums. I too shared my story so others may benefit from my decisions good or bad the future will tell us. I have no idea what went on here but I had my posts copied and used to discredit me , by what was meant to be a source of support for OM patients.

it did not used to be like this in 2007 when we were unified but there were fewer of us yet we knew far more.

 

I do hope these malicious events stop happening, I am sure that whatever happened to you was unrelated to me as I am in the UK and you I think are in the US. However there seems to be a similar problem across the water.

 

While we are divided we will not make a good patient group anywhere.

 

Hope things improve and you are comfortable with your decision for your treatment.

Good luck my fellow warrior.

Thank you . I wish, I could have only deleted the "flaming" post, as there were so many post that were full of good info and folks sharing their experience. Hopefully they will re-share. I have faith
The majority of people are good and kind. As you stated above in regards to other forums, it only takes a couple of these flame throwers to join a few forums and spew their hate . They are looking for an argument . I fell victim , and I thought OM was enough suffering for me especially on a SUPPORT forum. Okay, we'll its swept under the rug, the flamers know who they are.... Lets move on... The worlds not stopping for us!! We have a lot of living to do.... Now, I'm off to watch The Masters!!!

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

Hi Everyone,

We are all in this together and need to be a support for one another.  I've been on the forums for over 6 1/2 years and have never experienced anything like what has transpired recently on many of the boards.  I'm sorry that people have experienced such negativity lately and really feel for all of the "newbies".  We are here for you.

Our community is growing, not because the incidence of OM has increased, but because of social media.  During my journey, I have met some of the most amazing people and have developed friendships that will last a lifetime.  I was just talking with a friend the other day and she said she was coming up on her 4 year anniversary since diagnosis.  I said to her that I couldn't believe we have only known one another for 4 years.  It feels like we've been friends all our lives.

I cherish these relationships and what I have found is that everyone finds their own little niche or group.  

Hang in there everyone!  Together we will find a cure.

Hugs to all.

Anne Marie

Anne Marie, thanks for the positive energy. I've been meeting some awesome folks fighting Om, since my initial not so pleasant experience. The support for each other has been wonderful. I love the Om forum on fb...it's rich with resourses and great folks ready and willing to be there for the .good days and the bad . This forum is a great place as well.

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

Hi Everyone,

We are all in this together and need to be a support for one another.  I've been on the forums for over 6 1/2 years and have never experienced anything like what has transpired recently on many of the boards.  I'm sorry that people have experienced such negativity lately and really feel for all of the "newbies".  We are here for you.

Our community is growing, not because the incidence of OM has increased, but because of social media.  During my journey, I have met some of the most amazing people and have developed friendships that will last a lifetime.  I was just talking with a friend the other day and she said she was coming up on her 4 year anniversary since diagnosis.  I said to her that I couldn't believe we have only known one another for 4 years.  It feels like we've been friends all our lives.

I cherish these relationships and what I have found is that everyone finds their own little niche or group.  

Hang in there everyone!  Together we will find a cure.

Hugs to all.

Anne Marie

Not sure why my posted came up twice.

Cindyann, which OM Facebook group are you talking about, as there are several?  

Here's the link that was started by an individual OM person, not an organization.  https://www.facebook.com/groups/219970988124534/  There are files on this site that you might find helpful.  You can request to join and will be asked your connection to OM.  This is done because we had people joining that had no connection to OM.There's a great group of individuals on this site.  There's also one called Eye Cancer, that was also started by an individual member.  https://www.facebook.com/groups/16504669014/

The Eye Cancer Network:  https://www.facebook.com/groups/ECNPatients/  This site was started by Dr. Paul Finger, who acutally started the first eye cancer patient online forum in 1998.  

All 3 of these groups are closed and only members can see the posts.

Hope to see you on one of those sites as well.

Take care.

Anne Marie

Hi Anne Marie, I was invited on the forum last week, that was started by an individual!! Would have never known it existed had I not received emails with invites on another board. I had already found the one with Dr. Finger. Some really good info.Thank you for sending the good information ... I'm always looking:)

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.