Post by Juds, Administrator on Jan 17, 2017 19:13:54 GMT
So, anyway, we SOMers have a long and interesting, one might say torturous history, not including having superior oblique myokymia which is brought us together in the first place.
The second place is the web sites we try to keep going. Our most recent incarnation is at Yuku, a free php forum. That format saved us from being completely scattered when MSN closed their social media groups stuff. We have been doing well at our site for a long time, but it has its own wonkiness and many of our members have great difficulty gaining access to it. The most often heard problem is that members are locked out somehow. Whatever the access problem, it continues and there is not anything we can do about it.
My purpose here is to do my best to maintain an on-line presence for people with superior oblique myokymia. That is it. Nothing else.
Oh, sure, I love the friends I have made and have been blessed to meet several of them in person. We even tried a get-together one fond, long ago year, which was fabulous.
Times and lives change and people come and go. They post for a while, use the resources we have, are inspired to go out and find more of their own. They stick around in that they visit the site, read what they like, sometimes pop in to say 'hello' and then go on with their wonky lives.
That is what a support group is supposed to be. You come for help and information, perhaps receive the support you need/want and then take only what you need from the group and go on to have the best life they are able to have.
A SHORT HISTORY
We first came together when Phil put up a simple site that drew the rest of us old-timers. It was so wonderful to connect with other people who immediately knew exactly...I cannot express how important this is...exactly what I was experiencing. Like many people with a rare, barely known and greatly misunderstood, misdiagnosed and madly misjudged (more about that late, I think) disorder, my medical history with SOM was only slighly less onerous than my personal one.
When I was finally diagnosed I went home and searched for information. The search results did not even fill a single page. It had nothing to do with the primitive computer I had or the state of the Internet then, both so different from what we have available now.
Heck, searching on the Internet back then was a struggle; now, the search engines practically do everything for you with the merest input. We are all happy about that. Yes. Yes, we are.
To be continued. Really
The second place is the web sites we try to keep going. Our most recent incarnation is at Yuku, a free php forum. That format saved us from being completely scattered when MSN closed their social media groups stuff. We have been doing well at our site for a long time, but it has its own wonkiness and many of our members have great difficulty gaining access to it. The most often heard problem is that members are locked out somehow. Whatever the access problem, it continues and there is not anything we can do about it.
My purpose here is to do my best to maintain an on-line presence for people with superior oblique myokymia. That is it. Nothing else.
Oh, sure, I love the friends I have made and have been blessed to meet several of them in person. We even tried a get-together one fond, long ago year, which was fabulous.
Times and lives change and people come and go. They post for a while, use the resources we have, are inspired to go out and find more of their own. They stick around in that they visit the site, read what they like, sometimes pop in to say 'hello' and then go on with their wonky lives.
That is what a support group is supposed to be. You come for help and information, perhaps receive the support you need/want and then take only what you need from the group and go on to have the best life they are able to have.
A SHORT HISTORY
We first came together when Phil put up a simple site that drew the rest of us old-timers. It was so wonderful to connect with other people who immediately knew exactly...I cannot express how important this is...exactly what I was experiencing. Like many people with a rare, barely known and greatly misunderstood, misdiagnosed and madly misjudged (more about that late, I think) disorder, my medical history with SOM was only slighly less onerous than my personal one.
When I was finally diagnosed I went home and searched for information. The search results did not even fill a single page. It had nothing to do with the primitive computer I had or the state of the Internet then, both so different from what we have available now.
Heck, searching on the Internet back then was a struggle; now, the search engines practically do everything for you with the merest input. We are all happy about that. Yes. Yes, we are.
To be continued. Really
