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My Visit To Mayo Arizona


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Rama- curious as to why you feel that in the past this forum was more helpful than it is now.

Without this forum, I would never have known that I have POTS, and I would have believed my dr. that I have anxiety that I don't know about or feel :wacko: .

Being somewhat new, I am curious - what do you feel has changed about the forum?

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Hi Everyone

Just a gentle reminder of some of our Forum Rules:

Respect For Others

A tone of kindness is appreciated in all discussions. ..... please do not be judgmental in posts.

Public Disagreements with Other Members

Please ...talk to any member you disagree with privately.

The full text of the Forum Rules can be accessed by clicking on the "Forum Rules" at the lower right of this page (scroll all the way to the bottom).

Thank you!

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I've been on this forum for about 2 years now. Many have come and gone. Some were very good researchers and had a very good grasp of how the body works and functions - others were here for encouragement and support. Some were here to GIVE encouragement and support. It takes all those people to survive this illness. For those that do not have the need of this in any of the different facets they will just leave, quietly. But, for some this is their lifeline. They are so ill that this is the only means of communciation and friendship that they have. I feel so sorry for those of you who are in this place in your lives. And hope that one day, very soon, you will be better functioning and will not have to depend as much on the forum for your association and as a means to keep your sanity. But, for now - it is the reason they are able to endure what they are going through.

Others are very good researchers and understand the body and how it works and functions. They have insight into this illness and try hard to help us all to learn what each term means and what it may mean for us. It helps us to sort out what is going on with our bodies and hopefully, to determine which line of treatment would be best for us to pursue in regard to how our own bodies are functioning. Without these, this forum would just be a place to talk about how bad we all feel, and not have much if any hope for a solution. I find those people very, very valuable.

Then there are others, who have dysautonomia in one form or another - who really don't talk that much about themselves. But, try their best to support those who are going through rough periods of their illness. Even though others may not know what they themselves are going through - it may be just as bad as the ones they are trying to comfort. We all need a hug and someone to say "I care, you can make it through this."

So, as for my thoughts on the forum. It's got it's ups and downs. Periods where it seems to be allot of people crying and in distress. Times when there is allot of research and discussion. And other times, where theres a laugh or a joke or maybe even a song to talk about. It has many facets and it requires all those facets to make it shine - like a brilliant diamond - that it is.

Issie

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Sorry did not mean to come across judgmental or disrespectful.

People reads these forums often seeking information and I attempt to provide the other side of opinions at times to ensure that a balanced view is provided. Peace!! :)

Rama,

Personally, I didn't see that you were disrespectful. You just stated how you felt about what was being said. It seemed that the argument and disrespect was in the other corner. LOL (outside observer)

I, for one am VERY, VERY happy to have your input. And value the knowledge and information that you share. I Hope you're always around, we need people to sort out all the many things that are printed, researched and explained. You seem to be there for us all when there is something technical that we can't decipher or understand. Maybe sometimes, we don't completely understand what you say (it's way over my head sometimes). But, I value what I do understand.

Thanks Rama!

Issie

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Excellent post regarding the tone of the forum, Issie.

The only thing that I want to add to this topic is that if sheer will power through exercise, doctor's recommendation, medication would get a relapse, I would have been cured long ago. I did exactly was what described and pushed and pushed and pushed through it. It didn't cure me. Trying harder is not a cure. I know that for a fact.

On the other hand, Lemons.. It sounds like Mayo AZ was a WONDERFUL experience for you. You have a plan. You have a PLAN! That is a wonderful thing to have and from my experience, having a plan to go by, to give to another doctor back home, to an ER, to rehab people, etc. etc. is worth it's weight in gold. I am SO glad you had the opportunity to go to Mayo AZ and I wish you the very best in putting this crazy disease behind you!

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