time for a break

[TEMBO]

Bety;

You expressed my feelings to a tee. Thank you!

God Bless,
Karen

[cthomas555]

I am sadden that a f’n minority feel they have the right dictate to me how to think, feel and what to speak about on this forum.

I have had Myelodysplastic Syndrome for 11 years and I feel that gives me some rights. Caregivers are not the only ones who suffer as a result of this disease. I have children who suffer as well, but they do not try to shut me down because of their pain.

I am very disappointed in the members of this forum who do not feel there is space for us all to share views.

I am ashamed of you few who will not allow others the freedom to oppose your view or who only want to hear from people of like point of views. Hang your heads in shame! And no! I have not finished speaking on the subject. So be damn with you! If you don’t like it…read another topic already.

Chris

[Jack_dup1]

Chris,
I agree with you, if they don’t like the subject of the post, then don’t read it. There is no need for name calling and labeling, but the post has had 73 responses, there must be something positive to it, it has certainly got me thinking about healthcare, any of us who have had medical bills pile up, sit there and think that there has to be a better system. If money is not a object then I quess you would look at things differently.
Jack

[Bkwits]

I found the insurance discussion interesting and informative.
Barb

[KWJ]

I am new here, I come to get info and HOPE. I do participate at another MB and have for years. There is nothing wrong with discussing topics and having meaningful debates. However in this instance when you start slamming people and posting emails about the people in question, you have stepped over a line of common decency.

I get that some of you really dissagree with Patti, but to be snarky about her choices is not right. She is trying to do whatever she can in her MIL’s fight. As we all are. Whether you have the disease or you know someone who does, we all need hope and caring.

This arguing is really a turn off who those of us who need any help we can get. When every day we are fighting to gain some insight that may help keep our loved ones here.

[seekay]

Hi Patty,

We’ve not met, but I also feel badly that the insurance discussion was being criticized and that some personal “barbs” were thrown. In all, I found the debate to be an honest and germane one–related to the nature of this forum. And I sensed that you were, as always, speaking from your heart.

I do not have MDS (although I have a close friend who does), but I do have growing sense of the need to live a life of common decency and respect for others as much as I can, no matter what their station in life. I also recognize that there is frustration and anger that people have (I have it too!) which sometimes gets vented in a way that ends up being a little hurtful, or maybe a lot hurtful. Sometimes not really intentionally.

It is hard when we all are just typing into a computer screen and not having to say these things face to face. There is a kind of strange effect with the “net,” where inhibitions are “lifted” and people feel freer in a way just to let their feelings out.

I have a feeling that this phenomenon of “internet expression” is partly what happened in that forum. And I hope that is what happened. We are all connected in a strange and wonderful way through this forum. Perhaps we can find a way to make amends so that no one ends up feeling bad, hurt, and shut out.

I hope you will continue to post here. Geebeebee and others as well. Whatever the tone of those postings, the motivation behind them all were sincere–I could see that. It’s just differing points of view and the usual imperfectness of expressing ourselves in the English language.

Christine

[willie]

Patti When my wife was first diagnosed one of my children spent months and alot of energy trying to get me to take her to the Bolivian jungle to get treated by a shaman. This was usually with a mind altering concoction (ayawasca). It was tough to explain that I did not want a person with a blood disorder travelling 2 days into the jungle. Others from the US have done so. We chose the accepted medical route and it was ok for awhile. I have to believe that there could be other solutions. These solutions are not supported by our custom and by the insurance companies although that is changing. Good luck to your MIL and you with your efforts. Ultimately they may be just as effective as the accepted attempts at a positive solution.
Willie

[Bkwits]

Hi Christine,
In your post, you said>>>>>We’ve not met, but I also feel badly that the insurance discussion was being criticized and that some personal “barbs” were thrown>>

I hope that you weren’t referring to my posts as “barbs”. I respect Patti and everyone here. We’ve all been through a lot. Sometimes its just a relief to discuss something besides sickness and dying.
Regards,
Barb

[cthomas555]

KWJ,

I know nothing of “posting emails and “slamming” people and I admit that emotions sometimes do get high and that you find that upsetting for you. As a friendly and concerned suggestion I would recommend that you stay away from discussions of that type and stick with the ones you find more supportive and comforting.

I’m not try to tell you what you *should* read. I have no more right to do that as you do not have the right to tell me what type of feelings or emotions I can express when I write.

I wish your dad healing and comfort and I wish you peace.

Chris

[seekay]

Dear Barb–

Sorry, of course I wasn’t referring to you at all. I don’t think I even read what you wrote. Just a poor choice of words. I apologize for the misunderstanding.

Looks like we’re all making amends here? That feels better.

Sincerely,

Christine

[Bkwits]

Thank you, Christine. That is a relief. I have consulted this forum in some of my darkest hours. I hope Patti and Greg return soon.
Regards,
Barb

[Andrea Organist]

Patti–Oh gosh, I hope it wasn’t MY post that offended!!! Your posts have been so so useful to me!!! I am so sorry if I offended you, really, the important thing is to hang together! Or we will all hang separately!!

Andrea

[BETTE BOOP]

I HAVE BEEN WITH MDS FOR4 YEARS AND NOT BEING A DR. OR NURSE I AM VERY WILLING TO TELL MY EXPERIENCES. IN TWO YEARS I HAVE HAD THREE CANCERS AND SURE WE ALL MUST DO WHAT WE CAN TO HELP OURSELVES. BUT FOLKS DON`T GET INTO TO MANY DISAGREEMENTS. LIFE IS SHORT. IF SOMEONE DOESN`T AGREE FINE. MOVE ON. WITH GOD ON OUR SIDE WE HAVE HELP. LOVE TO ALL BETTE

[Author]

Posts