New Forum, & Philosophy of Illness

[Guest 12StringANSGuitar]

Hi,

I was wondering whether its possible to add a new forum here.

I feel that POTS is possibly the major issue of discussion within the 'general discussions', but at the same time, the word 'dysautonomia' is often used within the context of someones comments.

Because of the nature of this disorder/malady(and some of the things I've read since that first post of mine weeks back), there is obviously other ANS issues other than POTS that people are dealing with, and maybe if those other dysautonomic issues are broken down into their respectable categories and discussed by those who either have them, or have comments on them, possibly our cumulative experiences with each will allow a quicker comprehension of all of these.

Additionally, I feel a graph would be very helpful in terms of establishing a History, and a Time Line, that has an eye on these different dysautonomias, and the events that proceeded their appearance within each individual.

I'm not certain exactly what would be the best way to organize such a categorization of this graph of your experiences, but I feel from what I've read here, that the members could agree on a reasonable format for such a thing.

The idea of course is to effect our Experiences Table Graph, which would serve as a co-research Lab(even if its not scientific, its your personal experience, and what could be better?), that may allow us clues to how our life experiences may share a common thread that led to this point(your condition).

I don't know if that's something that the webmaster could easily do, because I'm computer illiterate, but I don't think it would be that difficult.

But, I do really think we need to break things down within the framework of this History's Map of Experience, or Experiences Table Graph.

I wish all of you the best! I never would have even thought much at all about this topic, if it wasn't that someone who suffers it, hadn't taken time to help me with my own personal problems.

At this time, I have branched off into looking at things in the area of reflexology,

and some basic neural science things(very basic, because I'm pretty slow on this stuff- and its vast in the amount of material!).

*I know my initial post about comparing the 12 Cranial Nerves that seem to become involved in the course of what this ANS malady does, was a bit out there, but I feel even more at this point, that I might have had it somewhat on target.

I have a tendency to philosophize alot about the nature of our being, and our place within the Universe(who wouldn't think these things?), and a common fault of mine is to compare 'all things relative level', with 'all things Absolute/Universal'.

I feel this ANS system is the life giving system that precurses even the function of our Genetic Code. Both are almost like 'Constants' functioning within us(similar to our Universal Constants).

I can't say exactly which 'body constants' would equal that of the 'universal constants', but I feel this works for me in trying to comprehend these matters.

I guess I thought this, because I was thinking about everything as a 'program', and which 'instructions' are always 'running' in the background that we don't see?

Well, the ANS, and the Genetic Code, would fit that description easily.

At this point, the best I can hypothesize, is that the Universal Body is one large Neuro-Chemical Messaging Construct. All things are inter-connected and involved in this activity of 'messaging'(and its all Neural).

The idea of 'neural', is becuase there's a logic and law to how the Universe works,

therefore conscious(or consciousness) intention is behind all things.

This will sound different, but if you could imagine/visualize a seamless neural construct with no individual 'identities'(yourself, trees, planets, apples, etc), then you could see how everything is ultimately plain 'information(data), and energy.

And this 'energy-data', is all about Neuro-Chem inter-activity.

I missed something because I'm in a rush, but all this is why I think the Constants of the Universe, bear directly upon certain constants within our Body-Mind.

*And, the Bio- Pre-Sets that I've learned about the ANS system, are most probably the 'Constants' within our our bodies.

thankyou for allowing me that!

Jeff

p.s., I have alot of personal family issues(illness), and that is why I will not be able to post often, but I do look here.

[DancingLight]

Jeff,

We have discussed in-depth at other times the lay-out of this forum. The moderators are already spread too thin. Also, the general consensus that people liked the forum the way it was...they liked having the General Discussion and having everything in one place. Most did not want to break it down into subcategories. You can do a search function (top rigth-hand corner) and type in "rebuilding our community" to find more in-depth discussion of this topic.

If you want a forum in which the topics are more broken down, into say, NCS, POTS, PAF, etc. you can check out the NDRF forum which is broken down that way. However, most people only frequent the General Discussion part there also.

As for your graph, I am not sure that I at all understand it even being scientifically possible???

Post when you can...read to your heart's desire.

Hope this helps.

Emily

[MightyMouse]

Jeff, your request is something that should be directed to Michelle Sawicki, the site's owner.

As a moderator, I can tell you that I'm not sure a forum, such as you describe, is possible here. First, while Michelle owns the site, the system is run by ipbhost's software, and as such 'is what it is'. Each feature we add costs money. The hosting of the regular webiste costs money. The hosting of the forum and use of ipbhost software costs more money. Up until a year or so ago, Michelle paid all those expenses out of her own money as DINET itself has very little cash reserves. We have no paid staff. Michelle, by default, is the "webmaster". I have done some website work for the sale of bracelets, but other than that, there's no other "webmaster" than Michelle.

Right now, we are focusing on better physician awareness, and that involves printing and mailing a large number of brochures, and pretty much takes up a good bit of cash.

I think what your asking for is, in some manner, already present on this forum and the website, but in a different format. The dinet site has information and articles on all the current known forms of autonomic dysfunction:

MSA, POTS, NCS, PAF, etc. Also, there are personal stories that are on the main site, describing the specific course of illness for each person who has volunteered and taken the time to write up their history and impressions about dealing with their illness.

Final call on this one is up to Michelle, of course, but from where I stand, I cannot see how it would be possible for us to implement your request.

Nina

[MomtoGiuliana]

"Additionally, I feel a graph would be very helpful in terms of establishing a History, and a Time Line, that has an eye on these different dysautonomias, and the events that proceeded their appearance within each individual.

I'm not certain exactly what would be the best way to organize such a categorization of this graph of your experiences, but I feel from what I've read here, that the members could agree on a reasonable format for such a thing.

The idea of course is to effect our Experiences Table Graph, which would serve as a co-research Lab(even if its not scientific, its your personal experience, and what could be better?), that may allow us clues to how our life experiences may share a common thread that led to this point(your condition)."

Hello Jeff

I am not familiar with this kind of graph that you describe. However, as has been stated already, there are personal stories provided on the DINET web page. This forum itself also serves as a way to share personal stories. It is also possible to post a "poll", if you are interested in trying to categorize the various personal experiences of forum members.

Welcome to the forum and Take Care, Katherine

[Michelle Sawicki]

Hi Jeff,

I second Nina and Katherine's thoughts here. I've checked out other forums that do have split categories and everyone still posts in one main category.

Feel free to use the poll feature regarding factors preluding the onset of dysautonomia.

Take care,

Michelle

[steph37822]

oops

[briarrose]

Jeff

Welcome!

I agree with the others too. I understand you wanting a seperate category but everyone is usually so similar that they would stick to one main page, that's how it is on NDRF (National Dysautonmia Research Foundation) too.

What we share in common is the Dysautonomia. I see POTS as just having an additional symptom, the tachycardia on that diagnosis. It's the dysautonomia that causes us to have many of the same symptoms and treatments no matter what our diagnosis the only difference would be the beta blocker wouldn't be necessary for many without the tachycardia. And I believe what I'm trying to say to you should fit your theory.

Also, over time many of us change and get additional diagnosis. I started off with some weird symptoms for a month and then the tachycardia hit me. A year later I progressed to have NMH. Looking back on it though I could say that 20 years ago I had NCS because I use to pass out when I would get over heated. Over the years I've had several doctor's tell me different diagnosis and some even told me that they knew that something was wrong but they didn't have a clue what or how to treat it. This is a very complicated illness.

thx for your thoughts, it was interesting to read.

Steph

[Guest 12StringANSGuitar]

Jeff,

We have discussed in-depth at other times the lay-out of this forum. The moderators are already spread too thin. Also, the general consensus that people liked the forum the way it was...they liked having the General Discussion and having everything in one place. Most did not want to break it down into subcategories. You can do a search function (top rigth-hand corner) and type in "rebuilding our community" to find more in-depth discussion of this topic.

If you want a forum in which the topics are more broken down, into say, NCS, POTS, PAF, etc. you can check out the NDRF forum which is broken down that way. However, most people only frequent the General Discussion part there also.

As for your graph, I am not sure that I at all understand it even being scientifically possible???

Post when you can...read to your heart's desire.

Hope this helps.

Emily

<{POST_SNAPBACK}>

:;

Thankyou Emily and others too,

I am new, so if this is agreed upon to as what works the best, then that is fine; but I did feel that since POTS was listed aside the other ANS related disorders in the left hand margin, I thought the association Dysautonomia = POTS, was not precise, and that the need toward clarity- with such a complicated issue that even Docs don't seem to comprehend properly- would better be served by way this seperation of the 'keys'.

Now I know POTS = a Dysautonomia, so is it that the usage(almost inter-changeability) of Dysautonomia with POTS, because when someone gets POTS, its like the culmination of having all the Dysautonomias together, and that would mean that its the worst case scenario? Or is this mainly a POTS message board?

Well either or, I just like things being specific, and the inter-change of the Dysautonomia with POTS, confused me.

Nuff of that, I'm getting dizzy with my own rambling .

________________________________________________________________________________

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As to a chart of graph:

I have not given much consideration as to its topics as yet, but I feel that those who suffer this, will possibly have a greater chance(if enough people were on board and participated) of finding 'some' solutions to this malady, if we could compare our own life experiences here.

I really don't know how far researchers have gone into 'early life' correlations of those who develope this disorder, but I do know that egos and $$$, get in the way of the different participants from sharing what they know with each other(thats just the way the community happens to be in most cases).

And this is something that we can do(to a degree- because I'm no scientist, and I don't know how many of you are; in either case, I'm not talking comparing microscope findings, only life experiences- especially as child) freely right here, without the influence of any competitive research restrictions for sharing info.

Again, I need time to think of what would serve us all well to compare on a chart, and others certainly will have ideas of their own.

I'm a big believer in the causality thing, so I do believe whether it started at conception, or in the genes, or in some early life traumatic episode,, there will be things that will possibly indicate how this developed.

This may seem vague, but I'd like to know how many of us have worn glasses since we were very young. How many of us had bad posture while young(chiropratic thoughts here). And also whether any of us were shy/insecure while young(shyness would cause a child to drop his/her head, and create chiropratic issues, which would crimp neural pathways from brain into body....possibly).

Along with this chiropractic idea, and also with reflexology theory,,,, I wonder whether anyone had issues with their gait during childhood. I was slightly bowlegged and pigeon toed. In reflexology, they talk about our 'grounding' to the earth. So I wonder if I was badly 'grounded' from the start, and maybe this could have figured into the development of how the ANS is affected.

I guess you'd have to strongly believe that we are truly an electrical being, and that our 12 Meridians(from reflexology), figures into how our ANS/Electrical System might be distorted by a physical issue(or even an early child psychological issue).

I will think of more things.

As to the wearing of glasses while a child, I actually forgot my thoughts on this.

I've more, but per usual, its noon in Philadelphia, and must go to work quickly!

p.s., Did anyone of you note a change in your handwriting during the coarse of your ANS problems? I have read a tad on grapho-analysis(it was my Dads hobby), so it would be interesting to note that too. I"ve handwriting issues since youth, and about 1992, they became worse. I also developed what may be the NCS thing then, and I didn't know it until recently(self diagnosed, but I've almost no doubt about it).

have nice day; everyone feel well!

Jeff

[Michelle Sawicki]

The forum is geared toward people with POTS, NCS, MSA and PAF. The majority of the people here do seem to have POTS.

You'll probably get a greater response to your questions if you start a new topic and put them in poll form.

Michelle

[Guest tearose]

Hi!

Not everyone can wrap their dysautonomic brain around new information! You give the reader a lot to read and think about! It is a kinda newly revived skill for me!!!

You sound like you are in a thinker, musician, philosopher, scientist mode right now. That is a lot to multi- task...and to deal with family issues too! Catch your breath and sit down.

My insight: The universe is like strands of a DNA molecule. There is a code, there are strands, connections, a biggness and a smallness....but don't waste any time on the tiny differences. Try to find the connections, the things that unite. These connections are what heal and help. The tiny differences, the big differences...life has enough that challenges and divides...you will have to deal with the challenges by the fact that you are alive!

Like the music that is created from the separate strings of a guitar...

Enjoy the music you create from your own guitar and share the tune with others!

best regards, tearose

[Guest 12StringANSGuitar]

The forum is geared toward people with POTS, NCS, MSA and PAF. The majority of the people here do seem to have POTS.

You'll probably get a greater response to your questions if you start a new topic and put them in poll form.

Michelle

<{POST_SNAPBACK}>

:

I understand Michelle.

I also apologize for the delay in response; I'm truly distracted by other things, and I'm easily de-motivated by those other things,, so that is why I didn't respond(same as other thread I started).

I guess I am thinking that certain specific things gathered into one graph would be a good thing, and would enable a quicker insight as to how similar experiences have led people here to this point in their lives.

I feel I could start a hundred new threads on this site, and get however many responses,, and in the end, time is eaten up with each and every personally related experience. I think from what I see here, we already have the freedom to relate our personal experiences(which is a good thing obviously), but I am differentiating the 'similar' from the 'personal', in the graph idea.

Again, I don't want to be confused on this idea of seperating what is 'shared/similar experience', from the 'personal'.

I absolutely think its great that you have community here, and that feeling of community comes from the relating of personal matters bearing on this malady.

I see Steph(in the Zero-Gravity thread), attempted to re-start the shared or similar experience idea, and I will attempt to jump back in on that.

As to the scientific value of this(if we do it), I am not a scientist for one, so I don't know if it would mean a thing from their perspective. But, I do think there is some potential in pinning one or two things down.

*just want to say, I can't make any promise that I can respond promptly here; I'm a recovering alchoholic, and have a Mom with dementia, and sick father too.

I know all of us have our family problems and personal problems with health(everyone with their own to greater or lesser degree), but I'm just being honest about my over-all energy. My intentions are the best... I'll just leave it at that.

thankyou....everyone feel well please,

Jeff

[Guest 12StringANSGuitar]

Steph,

I just read thru this whole link you offered:

http://dinet.ipbhost.com/index.php?showtopic=322&hl=what

I found myself mesmerized by the common history of symptoms that many of you, and myself share.

I'd have to say above anything else, I feel very lucky that my friend recommended I look at this website(and ndrf), and that I am able to do things still. I truly would have thought I had one of those things that the Docs just stare at you and tell you its just in your mind, or your friends joke and say maybe you've been abducted by aliens.

There's a whole lot I could say on this right now, but I want to do some more research.

thankyou Steph!

[Michelle Sawicki]

I have done extensive research on symptoms relating to POTS. See:

http://www.dinet.org/symptoms.htm

You might want to look over the whole site. I think many of your questions will be answered there.

Michelle