Deleted

I hear you Madalot and I appreciate where you are coming from!

Hawthorne wrote:I hear you Madalot and I appreciate where you are coming from!

Thank you. That's nice of you to say. I'm starting to find this entire thing exhausting. I feel like I'm having to defend a position that most people should understand.

Madalot, I agree that you should absolutely do what YOU think is best. If you have a good but organizationally disjointed medical team, then be the squeaky wheel that manages to get all those gears working smoothly together.

I think people here might be confused by your basic emotional need to vent----despite the fact that we too are often here to vent. After reading your last post or two, I finally understand that you are not here so much looking for advice as you are here to share your experience and occasionally vent.

Regardless, the problem-solvers here instinctively tend to go into problem-solving mode when they hear what sounds like a need for help. You should definitely let your medical team be your problem solvers. And please feel free to continue venting and sharing here as you see fit. I think our well-meaning problem solvers finally NOW understand that you are not here to have your problems solved on a message board.

Good luck. Rooting for you.

-SWS wrote:Madalot, I agree that you should absolutely do what YOU think is best. If you have a good but organizationally disjointed medical team, then be the squeaky wheel that manages to get all those gears working smoothly together.

I think people here might be confused by your basic emotional need to vent----despite the fact that we too are often here to vent. After reading your last post or two, I finally understand that you are not here so much looking for advice as you are here to share your experience and occasionally vent.

Regardless, the problem-solvers here instinctively tend to go into problem-solving mode when they hear what sounds like a need for help. You should definitely let your medical team be your problem solvers. And please feel free to continue venting and sharing here as you see fit. I think our well-meaning problem solvers finally NOW understand that you are not here to have your problems solved on a message board.

Good luck. Rooting for you.

If someone wanted to ask a question and make a suggestion or two, that's perfectly okay with me. I've said numerous times that I'll take all the input and advice I can get. But there's a fine line between "have you asked this? do you know what this test showed? have they considered this?" and what I've gotten in the last few days. Throw the information out there, but leave it to me to figure out what to use, what to discard and how to use the information I've gotten to best suit my situation. When a person hammers you to death with questions, then makes you feel like a incompetent boob because you can't answer them -- that's where I draw the line.

But thanks. I've decided to keep the specifics about my situation more private for now to protect myself. But I appreciate the good wishes.

[I deleted my post here because I realized later that parts of it may be misconstrued. I am not expressing my thoughts very clearly today. ]

Throw the information out there, but leave it to me to figure out what to use, what to discard and how to use the information I've gotten to best suit my situation.

Your statement above helps me to understand even better. You prefer free-flowing suggestions and you understandably want to be in charge of your own decisions. Truth is that's my preference as well.

Whenever you'd like to solicit free-flowing advice around here, I think forum members will now better understand your preferences. This is also the correct place to vent at our circumstances or vent at the system IMHO. On this message board patients rule. And that simple fact gives me a much-needed sense of empowerment over my own at-times trying circumstances.

So I am glad you are here to share, to vent, and to even solicit free-flowing opinions or comments from the crowd. We're here!

-SWS wrote:

Throw the information out there, but leave it to me to figure out what to use, what to discard and how to use the information I've gotten to best suit my situation.

Your statement above helps me to understand even better. You prefer free-flowing suggestions and you understandably want to be in charge of your own decisions. Truth is that's my preference as well.

Whenever you'd like to solicit free-flowing advice around here, I think forum members will now better understand your preferences. This is also the correct place to vent at our circumstances or vent at the system IMHO. On this message board patients rule. And that simple fact gives me a much-needed sense of empowerment over my own at-times trying circumstances.

So I am glad you are here to share, to vent, and to even solicit free-flowing opinions or comments from the crowd. We're here!

Thank you. I appreciate it. I think I'll lay low for a few days and see how things go.

Madalot wrote:I think I'll lay low for a few days and see how things go.

I, for one, will be sending good thoughts your way....

HI Madalot,
I used to work with patients in the ICU. I noticed one of the signs that they were getting better was that they would start to give me sh*t for things they did not like. It was great..loved it. A true sign of spirit returning in someone who had been so ill that they could only accept whatever was decided for them. I can remember one patient in particular and it still makes me smile.
So Madalot, no need to apologize or to explain for getting angry. You are taking charge of your life and your illness. Good for you. You go girl!!

Certainly the mood swing can be a sign and a good sign.

What confuses me is you never communicated your thought or feeling to those who were following along. Or via PM to those who were spending a good part of their day trying to help.

I know as I read Muffys' post, I remember thinking how brilliant and thinking of the thought and time that went into posting that message. And how lucky we all are to have someone willing to give their time soo freely.

As was already mentioned, it is difficult whenever words and pictures are the only means of communication. I think that communication is also a lost part of our culture, unfortunately. Some of this difficulty is not only the sender but the vast differences in the life experiences of the receivers - throughout the world.

I have to say I think you got more than your moneys worth from all the advice provided thus far. One might say more than in real life too.

Wishing you continued success and improvement.

OutaSync wrote:

BlackSpinner wrote: My ex husband now called Catherine.

Really?!!!!

He/she contacted me on Facebook last summer with the news after not connecting for the last 20 years. What is even more .... Catherine is a friend of a friend of my oldest daughter and they had met socially.

Hi All

One of the first things I learned about relating to people was that any knowledge I had that was useful to others was useless unless I could present it to them in a receivable manner.

Why responsible forum members keep on asking newcomers who have been abused by SAG/Muffy just because he gives good information at the same time he abuses them is simply beyond me. Why don't they ask SAG/Muffy to help without being abusive. Why does the newcomer have to overcome all these unnecessary obstacles.

Muffy has been helpful to me, but he has also been unnecessarily difficult. He is the cause of the problem, and he is the only one who can fix it.

I am ashamed of some of my posts to people, but I have also learned how better to deal with difficult posts. I think it is time the need to change was given to Muffy, not some newcomer who has enough problems already.

I refuse to be conned into supporting Muffy because he can be helpful. He is abusive. He does not need to be abusive. Consequently he is a seriously flawed helper.

And I think it is shameful that this forum consistently defends him, and tells newcomers they have to put up with his abuse.

Mars

Now i'm confused, did Muffy remove the abusive post or something?

akcpapguy wrote:Now i'm confused, did Muffy remove the abusive post or something?

Abuse in the guise of helping is still abuse.

If you look you will find many posts defending SAG/Muffy's abuse, to start with just have a look through this thread.

And I doubt that SAG/Muffy himself would deny that newcomers have left the forum because of him.

Mars

I recall a very nasty abusive post that SAG deleted aimed at akcpapguy a couple years ago. SAG didn't post that abuse. I didn't see the next post SAG deleted but I do know there was more than one that SAG deleted and that SAG lost his spam delete button because of this action.