Posted by Van (198.62.124.3) on August 18, 1999 at 11:37:07:
I am new to this site. I am 41. I have had these things (episodic) since my early teens. I have learned more about them in the past 3 weeks that in all that time. I “used” to think I was the only one. I “used” to have thoughts and feelings no one else had. I still confuse my friends and relatives. I “had” no one to share with, who even sort of understood.
Below are my thoughts about several things—all from attending this site. I am writing because I am scared that people new to the site might get wrong impressions and leave. People who need help. This post will archive soon enough, but might catch a few new folks.
1. Thanks
Thank you for being there, for talking to each other, for sharing information. Knowing that I can come here and selectively read what I want/need at any given time is important.
2. About cliques
I see that people have created relationships. That is reassuring. I do love to see the “positive” posts. But, I also admit to getting frustrated when I have to go thru so many “touchy feely” posts to get to one’s that are my targets: meds, dosages, doctors, insurance, etc. When I want information, especially just prior to another neuro visit or after a med stops working, I want to find info fast. I guess I figure one must always put up with one thing or another. There are some days I read the touchy ones just to get a “positive” feeling in places that my spouse cannot find—though she tries so hard.
3. Venting & Carl D
I can tell not all of our personalities would mesh if we were put into a room. We are not all “touchy feely” nor are we all “distant”—and none of us are either way all of the time. If put into a room, you would find one who is great for med information, but had the personality of a spoon. The lively positive person may be fun to talk to, but cannot be specific enough. A quiet/shy person might be totally overlooked, and they might never get the information, either postive statements or medical info, that they need. A negative person might not make a lot of friends, but many would listen because they say the things that you think deep inside, and for a 1000 reasons would never admit to. Others may be there more out of curiosity, and you’ll not learn much from them at all nor make friends.
Think in terms of the convention being planned. All these types will be there. All would go for personal reasons—some obvious and many not. But they would not go without some reason. I feel the same way about this site. They have determined that they need to be here, and it’s like being at a party/function where you are stuck for the duration, where some folks make you uncomfortable, others make you laugh and sometimes you just grab a handful of appetizers and stand in the corner and watch. Let each be their own, look for the positive, and make your own decisions about who to approach or to let approach you. Also understand that you cannot always understand what another is thinking, no matter what words come out of their mouths.
3. Talk of medications
People should remember to be careful and talk to their doctors. Don’t try something just because another said to. Not everyone has the same responses. Not everyone is properly diagnosed. Remember to always check the side effects (Topamax can increase chances of kidney stones and that is especially not good for those who have had them previously). Interactions with other meds you are taking. Always question the med you are on, really pay attention to what it is doing. I for example am finding that Prednisone is masking symptoms and my ability to tell when another is coming and that means more surprises when I least expect them.
4. Remember that anything you post can likely be recalled sometime in the future by somebody. Perhaps someone you do not want to have that info. This should not make you be quiet, just respect that fact and think before posting or sending e-mails. Your company or insurance company could be watching?
That is my 2 cents worth. I did take much of the information I have learned from this site to my doc this am. She was more than amazed. She learned new things and wants me to send meds/other info as I learn it. It made me feel more responsible for my own well-being. I thank all of you and all of your posts for that. Also, the chat line was the most fun ever last night. I really enjoyed that too.
After re-reading the above, the word “I” was used a lot. This page is a personal statement, but “I” very much feel the “WE” by being here. Those who are new to this site should be given the chance to see and hear it all. Maybe some of the new suggestions for Medical info, etc would be good, and then the searching could be shortened. Maybe there could be a Venting chat room or post board. Maybe a new visitor will have new and fresh solutions—or a cure?