|
|
Reply
| | From: juds (Original Message) | Sent: 2/24/2008 4:21 AM |
Welcome. Help yourself to a nice beverage and a tasty snack, if you like. Come on in, find a comfortable chair. Take a look around the room, greet the members that you know and make the newcomers feel at home. The lights are soft and the ambience is mellow. Tonight is the first of our bi-weekly meetings, here at SOMPeople. At each of these meetings we will address a particular aspect of our SOM life. This first session will be an opportunity to share some of the topics that we would like to discuss in these threads. I am thinking that keeping the topics fairly narrow will allow you to share without feeling that you have to tell everything in one big post. For example, one sesssion could be about medications that we've used. How they worked, or did not work. Another could be the use of patches and occluders. These topics can address particular aspects of our medical experiences, but should also be concerned with the familial, social and work related issues that we face. Each topic session will come with some guidelines to get you started. I am thinking that our next session, which I will introduce early in March, should be a history of our own, personal experience with SOM, as well as an opportunity to reintroduce ourselves to one another. What you share can be as brief or detailed as you like. It doesn't matter if you've already told your story, we would all love to hear it again. In case you're wondering why I have chosen this time to do this, I have been culling information from all of the posts that have been made on this site, and on the one of our previous sites which still has part of the message board online. It doesn't function, but I was smart enough (beamin' with pride here) to archive it. Anyway, I quickly realized that much of that info, whilst pretty darn interesting, might not be the current status for most of us. Firstly, I would like to hear your ideas for subsequent sessions. So, that is what this thread is for. One more thought. Even though we do not have any minimum posting requirements here, I really hope that everyone will contribute at least a tiny bit of information in support of all of our members and potential members who would benefit from hearing what you have to say. I truly do not think that it is any kind of imposition to feel that it is reasonable for everyone to contribute to this information base. Even if you pop in just to say that you are reading, but don't have anything to contribute. Additionally, I will be sending a shorter version of this post in two e-mails to our membership. One will come directly from this site, and the other will come from one of our group's Yahoo! e-mail accounts. Let us have at it! What topics would you like to see covered in these sessions? |
|
First
Previous
2-11 of 11
Next
Last
|
|
Reply
| |
Good thinking, Juds! A+ Since, try as we might, I guess we aren't going to find either a universal cause or a perfect cure, coping seems to be a real need. I have gotten just major assistance from reading what others have done to help with everyday situations that pose extrordinary difficulties for SOMers. Such things as driving, reading, working with computers, going down stairs, lighting (ambient vs flourescent), patching, continuing with passtimes that require vision that doesn't bee-bop around--all those things. Possibly some of these could be topics on their own--easier to chime in that way with hints, problems, experiences, etc. Likewise, medication experiences could be updated and would be helpful. Sometimes, it's just finding that there is actually a name of another medication that could possibly work--and how else would you know that unless you found it here? Nobody lists "May assist with Superior Oblique Myokymia" on their medication info. inserts! Some people are dealing with SOM on top of other eye conditions or issues. How do they cope? What helps? If you have the time to read all of the posts, there is a wealth of info. But for frustrated newcomers who really need help, and for those whose SOM has suddenly lurched into high gear, those topics seem to be high priority--and right now, a lot of helpful tidbits or narratives are hard to locate. Fully understanding that it is NOT an obligation, it would be great to hear from some more people about experiences both positive and negative. It would give a lot of direction to an effort to group some of our good information. The social support aspect cannot be underestimated. It has been a godsend to me as many of you know. Um, that would probably be because I'm not exactly verbally restricted. At least, once I finally joined up, I'm not. Annie |
|
Reply
| |
Hi Everyone
I'd definitely be interested in hearing how people cope with working at computers for long periods of time. I'm back at work tomorrow as my maternity leave has ended - so not looking forward to the effect it's going to have on my eye!
Hope you're all well.
Tere |
|
Reply
| |
I'd like to know how many other people trip over their own feet, or have trouble looking down. Unless of course, it may be just me. I am one person who deals with other eye problems besides the som so I can be very supportive if others do. So, if anyone wants to start a thread about that, I'm in like flinn! (I take my eyesight very seriously now!) Do we all have stiff necks? Do we all get headaches? Was I the only one who didn't know my head tilted to the left for 365 days? That sort of thing. I know we have links to meds and our histories and natural herbal otc stuff, etc etc. But since I'm a med freak, I'd like to know about that. How do your families react? And how do you react to their reactions? Does anyone but an som person really understand this affliction? I mean, really really understand? Seriously, I think not! Are we mostly right eye afflicted? Gosh, I got a lot of questions all of a sudden! Inquiring minds want to know! |
|
Reply
| | From: juds | Sent: 2/25/2008 3:30 PM |
Here is a partial list of what has been suggested. I will copy and paste this into a new post as more are brought forward. Keep in mind that this list is dynamic. Also keep in mind that many of the issues are inter-related in subtle, and not so subtle, ways, and will be covered in more than one thread/issue/category, because that is, quite simply, the nature of human experience. Before you read the list, I want you to keep in mind that many, if not all, of these topics will elicit some pretty personal and meaningful dialogue. To be perfectly honest, I have resisted doing this kind of more formal approach to information gathering only because of the privacy issues concerned. You have to keep in mind that anyone can noodle by here and read what we have written, which is exactly the open nature that this site needs to have. As long as we are careful about sharing identifying information, we will be just as fine and as safe as we always have been. O.K., that needed saying. - Our SOM histories. The long, the short, the good, the indifferent, the bad, and, let's not forget the absolutely horrendous.
- Physical issues. Tripping, stumbling, all kinds of binocular vision difficulties. What are the physical side-effects of having SOM? Head tilt? Stiff muscles? Inability to read? The list goes on, doesn't it!
- How we cope with computers and other issues, both at work and at home. Not just the actual physical difficulties associated with our weird vision, but the inter-relational issues, as well.
- Medications. What has been suggested by our doctors. What we have researched on our own. What we've tried, the protocol, side effects, successes and failures. This could include non-medicinal substances, if you think that it won't muddle the issue. Otherwise, non-prescription substances can have its own thread.
- Other treatments that we've tried. Traditional, non-traditional, herbal, body work, chiropractic, patching, occluding, and whatever else you have tried. The subject is wide open.
- Other visual issues, conditions, diseases that we have. This thread could also cover any other physical or emotional conditions that we have, as well.
- Driving and other mobility issues.
- Family and friends. What is the impact that our SOM, or any other physical or emotional issue, has had on our relationships. Heady stuff here, and we will need to wear our loving-support caps on this one for certain.
- Environmental conditions and issues that affect our ability to function. This could include seasonal changes, sunlight, nightime situations, indoor and outdoor lighting conditions.
- Our view of ourselves, our relationships and our place in the world, as persons with a chronic condition. This issue will manifest in everything we write, but I feel that this may very well be the most important information that we have to share.
- A Guidelines thread where some ground rules will be addressed. A total yawner, but necessary nevertheless.
As I was writing all of this, it occured to me that the twice a month scheduling of these sessions might not be as helpful as I thought. I was hoping to, in addition to making this information more readily available, build a greater sense of community amongst us. Oh, well, whilst what we have is truly fabulous, I was hoping to make this more structured. Clearly, we don't need that. It's just the project organizer in me. I apologize. So, I would also like a little input from all of you regarding this next idea. I am thinking that I will create threads for all of the topics on a single day. That way, none of us have to suffer the frustration of waiting for a particular topic thread to be begun. Anyone can write about any of the topics whenever the inspiration strikes them. I know that I would feel some frustration whilst waiting for the other topics to be addressed. Besides, at my age, I have to write things down so that I don't forget them, and then hope that I can find the notes when I need them again. If all the topics are posted at the same time, we can write whenever we want to do so. Additionally, posting all of the topics at once is inspired by another issue. I have a favorite public radio program in which the host often talks about what the next program's topic will be. I guess that most of them do. When that happens, I almost always talk back to the radio and tell that darn host, "Great, make me wait a whole week. I want the information now, you, you, you, sassy host!" Anyway, I'm thinking that it would be nice to have every topic posted at one time, in individual threads. I like this idea. What about you??? These threads should probably have their own message board, so that it does not become lost in the lovely tangle of information on this message board. I would simply add that board to the list of references that I have (finally) been putting into each new member welcome thread. Another thought that I have been having over the past several years is that it would be nice to have real time chats. One of our portal groups has chat available on it, and I have access to a few other chat options that are fairly convenient to use. I would probably schedule them every other week at a specific time. Or two specific times, rembering that we have members who are located in a gazillion different time zones. Thoughts? |
|
Reply
| |
Yes to all of the above. We'd still keep our uncategorized posting for fun, information, companionship, general support, and the occasional bat, correct? Annie |
|
Reply
| |
I've been gone most of the weekend, and just got home from an eight hour seminar on Excel, so please excuse me, but...Huh?
I'm for it, I'm sure, but not too sure what it is I'm for. Mainly the last suggestion on posting all of the topics at once. Sorry, I KNOW it's me, but my techno mind is out of memory, so I'm having difficulty. I just wanted to post here, and tell you that I will support anything that creates a better exchange of information in an easily located and viewed fashion. And I am relatively certain that is where this is headed. Thanks as always, Juds, for plugging away to make this website better and better.
Now I'm getting out of these fancy clothes (instead of scrubs), getting a nice cold glass of an adult beverage and reading something totally uneducational. |
|
Reply
| | From: Lynne | Sent: 3/3/2008 2:56 AM |
Aaaahhhh Juds, The original name! Brings back memories of all the help you were those many years ago. Any word from Zesty Chicken? XO Lynne |
|
Reply
| (1 recommendation so far) | Message 9 of 11 in Discussion |
|
Ahh yes...the original name. I was so glad to have found such a wonderful place. It was (and is) so helpful to me when I was a newbie with this inconvenient disorder. (to coin a phrase) I learned more about this som on the site than at my doctors. And what did happen to Zesty? Seems to have dropped out of sight (no pun intended) |
|
Reply
| |
SOMPeople saved my sanity (such as it was and is) many a time, though I was just looking in and hadn't joined. When I stumbled across it, the only emotion I can remember is elation. Yep, I remember Zesty......... |
|
Reply
| | From: juds | Sent: 3/5/2008 3:11 AM |
Because I am truly (and I'm serious about this) making every effort to be the most loving, supportive and caring person that I am capable of being, one of my precepts is that I will not discuss past members, except to say that whilst I've never asked anyone to leave our support group, I have had occasion to be supportive when someone decides to leave voluntarily. Two of those persons who decided that our group was not working for them created problems for other members, something that I will simply and clearly will not tolerate here. Frankly, I would have preferred that they stay and do the personal work that would have made it more comfortable for them to be here, but that is a decision that only the individual can make. Sometimes the best help that you can be to someone is to simply stay off of their path and allow them to journey on, holding them in loving support and wishing them well. I am willing to discuss this issue if you care to e-mail me, but it really shouldn't be discussed online in our group. I hope that answers the question. I will be fine tuning the subject/topic threads for the new, specific information message board this week, hoping to have them ready to go by Saturday or Sunday. The first thread, which will be bumped as needed, will give an overview of the information base that we are attempting to create, give some guidelines and make a place for additional ideas to be proposed. I have just finished (oh, dear goodness, I hope so) a most stressful ten days, so give me a few days to recover my sense of well-being and get back on track. Just as Jeanie needed a lovely adult beverage (hers was rum and something, I think raspberry CrystalLight, her homage to healthy living, I'm guessing!!!! ), so do I think that I need a few dozen of something similar for myself. I am not, truly, suggesting that sufficient quantities of adult beverages are the cure-all for one's problems, but they surely don't hurt the average person, one who does not have issues with the stuff. One of the many things, humerous, desperate and delightful, that we used to say at the shelter is, "That's nothing alcohol can't fix." Truer words are seldom spoken. Unless the cure involves chocolate, of course!! |
|
First
Previous
2-11 of 11
Next
Last
|
|