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The Personality Of The Forum And It's Value


issie
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I've been on this forum for about 2 years now. Many have come and gone. Some are very good researchers and have a very good grasp of how the body works and functions - others are here for encouragement and support. Some are 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, hopefully, 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 why those 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. Others may not know what they, themselves, are going through and 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 the brilliant diamond - that it is.

Issie

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Issie,

you have proven once more (even though I believe none of us here needed proof) that you are an extraordinary lady. Thank you for putting into words what many of us may think/feel. Thank you, thank you, thank you. We're really blessed to have you as a part of this community... I just wish the circumstances of all of us coming together were different.

blessings,

Alex

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There are a few characters I really miss. Some that really helped me when i first got diagnosed way back in 2004. Some were very knowledgable and had some good tips like licorice root, tumeric (which didnt work for me, but did for many), and a few other things.

Prettyinpink, Todd, Eric were always good value.

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Agreed! This is such a valuable place.

I first found DINET in 2004, and it was a lifesaver for me! At that point in time I had already had POTS for 10 years, but it suddenly became very severe. At that time I was living in the middle of nowhere in Alaska and didn't know what to do. The information on the website and the support on the forum was so valuable. It has continued to be a help for me over the years, and I have made some very close friends through DINET.

I like DINET so much, and that is why I volunteer here. This forum and website is a valuable resource, and I want to see it continue on for a long, long time. Thank you to everyone who participates here and helps to make DINET such a great place!

Rachel

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Well said, Issie ~We've got personality ~ :rolleyes::D:unsure::huh::o;)B):lol::wub::mellow: ~ and who could ask for more? I <3 it here!

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Perfect description, Issie! Many different paths OI/Dysautonomia takes.. Many different needs of the members at different times in our journey! Throw in a bunch of Type A persoanlities from all over the world and Boo-Yaa... a great, smart, diverse forum that also doses hugs and encouragement when needed!

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Great description, Issie. :) I'm just glad to have others to talk to about this. I went through it alone for so many years, not knowing what was wrong with me. I still can't believe there are other people out there going through the same thing. I can talk to certain family members about this, but it gets old for them and they don't really understand anyway. It's nice to be understood.

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I'm glad you guys liked it. Just think, we all run back here at one time or another - because we do get something we need from here. Be it a new friend, support when we are down, a new understanding of something we'd not considered before or to just have people around us that we can relate to. I think, this forum gives us all these things and more and it is a valuable place to be. So, glad I found it myself. You guys all shine - what a beautiful diamond.

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  • 3 weeks later...

I'd like to thank Issie and Rama in particular. I find i get too emotional reading the journal articles. your posts are great because you know the lit so well and by coming on to dinet i can find out new info without reading depressing prognosis formation (which is hard to avoid when reading the literature).

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Thanks for posting this Issie - because I am involved in different groups, and hear silly cirticism of this forum regarding the censorship. I like that this is a safe place, with no one swearing or spouting out all kinds of negative doctor craziness (even thought I need to sometimes, but do it on my own time), and it is safe for to get help here. I send everyone who needs support to Dinet, links are all over my blogs. The POTS symptoms list from here is what I printed out and brought to my Internist back in 2006, after having uncategorized OI and being told "you are anxious and probably have an adrenal problem" for 4 years, and my doctor agreed it was POTS (and UVA and EP confrmed this). I was active on here for a while then, but stopped coming on because I found it very depressing, there was a different tone back then- and I was lucky enough to start feeling better and was in "remission" until the end of 2010. Coming back on here has been the best thing, the most useful tool while trying to figure out the medical side of things, as well as getting emotional support. I love my FB group, but there are some wacky folks on there, and I really appreciate all the info and connections made on Dinet. And I met my first local POTSy here! In almost 10 years of having Dysautonomia!

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  • 4 years later...

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