More reasons I'm grateful for this forum

[Endless]

Insomnia has a good side. Time to reflect.

There are so many reasons I'm grateful for this forum. Here are more that I've been thinking about.

- It accomodates everybody. For some that means they can make the print big on their computer screens, rest their eyes when they need to, hanging out here at odd hours, dropping in from home because it's too hard to leave the house, etc. Mostly because we can work it around seizures. I love that I can log in from a dark cool room with my head packed in ice (headaches)

- Writing in here helps keep our minds sharp. It's the way I've chosen to use my brain, especially with research or harder topics. Some days it's not really possible, but most days it is, even if it's for a few minutes.

- We do get help, information, and support for ourselves, but it also gets us out of our own skin and gives us a chance to help others. No medicine on the planet that comes close to helping another human being. It raises spirits.

- We can take our time. We can take ten minutes or ten hours writing a post, depending on how we feel. And then when we screw it up we can go back in and edit it (I end up doing that a lot). Or just leave it. Doesn't matter.

- Speaking of it being in writing, lots of us in here have problems making things clear. I am grateful that I can type something out, put it away, read it later to make sure it makes sense before posting it in here. Or not. It's great that it doesn't really matter if it makes sense or not. Personally I'm much better in writing than I am speaking. If I was talking this to you it'd be a mess, wouldn't say what I mean it to. Even if it sounds logical at the time.

- I think I already said this, but repeating it is good. We don't have to go anyplace to participate.

- We can be ourselves and get support, even though sometimes we feel we can't anywhere else.

- By listening to others, we know when I'm getting good treatment and when we're not. It sets the bar to a higher standard.

- We get the explanationswe don't get from our docs. Whether it's that they are too busy or just don't know. But when we put together what all our neurologists have told us, it answers a lot of questions our own docs just don't know or else don't care to share.

Q: Why do our docs feel they have to discount what's in here (oh - it's just to provide emotional support and to deal with symptoms), or they get huffy about the fact we are in here, or that we share information and not just hugs? Because this forum is so good for us in so many ways.

This was one of those days where it took hours to write something. The forum will always wait for it.

 

[elizzza811]

You couldn't have said it better - I feel the same way. I have trouble sleeping many nights too, and it's nice to know that others experiencing similar troubles, similar symptoms, a similar loss of independence (without a driver's license) are here to lean on. Plus it's always nice to throw new ideas out there to debate with regards to what triggers or causes seizures and get some feedback.

 

[Nakamova]

I'll be seeing a new neurologist in August, and I'm debating how much to say about what I've learned here at CWE. Sometimes you just mention the Internet and the docs do indeed "get huffy".

I know that it can sometimes be a problem for doctors when patients get info off the internet that is unreliable, or unhelpful or potentially even harmful. My sister-in-law is a doctor, so I get to hear her side of things too. But it would be nice for the docs to take a moment to understand WHY folks feel so much more comfortable getting support and info from the web; I suspect that a a primary cause may be the dearth of genuine listening and respectful communication in the average doctor's appointment.

 

[travel bug]

Hear, hear!!!:agree:

Ditto everything you said, Endless, plus it's just very user friendly. I wish other message board designers would check out CWE and/or consult with Bernard. This forum spoils me

 

[survivor]

Well dear all, who listens to us? Or to put it in other words how much are we interested in telling our problems to those who really dont understand what we are saying! I go to the hospital, work, try to be very intelligent and gud to all, come back home, do all house hold chores, be nicest nice to my daughter and I do it daily! But what abt the depression i face on times, what abt the times when i get too annoyed on small things, what when at times prescribing drugs at hospital my mind goes blank and i do not remember a single drug, what when I am working and something happens in the head and i just stop for a while to give my hard working brain a little rest??????? And what abt now, when I dont remember, what exactly i intended to write? Dear Endless, this is our place, I can not tell these things to anybody, but i m writing it here! This is a nice place, really nice and if God helps me I intend to make such forum in India too. BUT.................... here comes a but! I feel, can I do it? When completing the houes hold chores is a challenge....................how to pursue this one??????????? And I have less knowledge abt net and all...lets see!

 

[Endless]

:agree: Yes, I agree.

Docs can get a little huffy when you walk into an appointment and your info doesn't jive with theirs, or they simply don't know about something that you do. When we research a specific topic in the peer-review literature, our info is often more up-to-date than the doc's is. We all know that we don't expect docs to read everything there is out there - that would be humanly impossible. If they don't know about something we don't hold it against them, as long as they have an open mind to what we're sharing with them. But I think some of them feel threatened or inferior and they close their minds to it, or are even hostile to what you are saying.

I'll be seeing a new neurologist in August, and I'm debating how much to say about what I've learned here at CWE. Sometimes you just mention the Internet and the docs do indeed "get huffy".

I know that it can sometimes be a problem for doctors when patients get info off the internet that is unreliable, or unhelpful or potentially even harmful. My sister-in-law is a doctor, so I get to hear her side of things too. But it would be nice for the docs to take a moment to understand WHY folks feel so much more comfortable getting support and info from the web; I suspect that a a primary cause may be the dearth of genuine listening and respectful communication in the average doctor's appointment.

 

[trust]

:agree: Yes, I agree.

Docs can get a little huffy when you walk into an appointment and your info doesn't jive with theirs, or they simply don't know about something that you do. When we research a specific topic in the peer-review literature, our info is often more up-to-date than the doc's is. We all know that we don't expect docs to read everything there is out there - that would be humanly impossible. If they don't know about something we don't hold it against them, as long as they have an open mind to what we're sharing with them. But I think some of them feel threatened or inferior and they close their minds to it, or are even hostile to what you are saying.

hello everyone, nice to find wonderful people here who truly care for all. my baby who is only 8 months old has seizures. has anyone heard about unilateral megalencephaly ? thank you.

 

[Eibhlin]

:agree:

Exactly, and there is a shortage of neurologists, which means they are over-worked regarding number of patients, so they can't find the time to research to keep on top of things. Even when they do get to research, the findings of articles in peer-reviewed journals are usually a couple of years old (at least) and studies are often funded by pharmaceutical companies.

I think if every neurologist actually wrote down symptoms that patients present with, instead of writing a summary, it would provide invaluable data for analysis.