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<blockquote data-quote="dreamer" data-source="post: 136048" data-attributes="member: 1697"><p>witzend- I apologize.....um.....I am not sure I understood your post? Gosh my brain is more swirling than I realized, no wonder I am typing away to empty it so I can settle donw, LOL. </p><p></p><p>Um...lets see..my load is now MUCH lighter than it has been in ------oh maybe 20 years right now? Lightest it has EVER been. Son had been haveing to go back to Eye docs at univ weekly....then every 2weeks...we did that for 18 months. FINALLY we are now at every 4 months for one eye doctor and every 6 months for the other 2, and once a year for Shriners. Nothing is being actively treateed really....son is doing good, holding his own.stable. He will be on this follow up schedule always now, from my understanding...which I guess is why I am haveing a hard time careing if we go or not and resenting how it will disrupt us...they will not be DOING anything- just kinda checking on him.....but- there is not really anything anyone expects to get better or worse. He is who he is he is how he is and he just is, LOL. ANd he hads adapted to everything. His eye causes no problems really.....he walks.....his seizures are no worse, and have neever been obvious to casual observation, and he has learned over the years since he was born with them to just keep on trucking or whatever. </p><p></p><p>I have been stranged entirely and totally from my famil for many many years, with a LOT of hard things between us. ANd prior to that it was ME who did all the reaching out and helping out....but they are not close anyway....my husband has no family at all.....my husband cannot be trusted with anything, oldest difficult child does not drive......is more like an 11-12 yr old......easy child is at school and work most of the time....and becuz I have been handling husband, difficult child, easy child and son so intensely for so many years----and becuz I have not worked etc now in years--- we do not KNOW anyone to ask for any help. Altho trust is hard for me, too....becuz on the few occasions when I have trusted people who have supposedly offered help- most of the time, they backed out at very last minute, causeing far more problems than ever. </p><p></p><p>The good part is....remember, husband does not work..I do not worjk......oldest difficult child is homeschooled and does not work, and son is homeschooled. This does free me up to do all these things on my own schedule....and that helps a lot. easy child goes topublic school is a senoir and works after school an weekends and is going to college in fall. (to a dorm) </p><p>So-----when I take son to RMH and am gone from home, we do school at RMH.....but oldest has to wait for me to get home. ALL house chores wait for me......oldest still cannot manage to handle a chore list. (makes her far too anxious) easy child keeps one eye on husband and difficult child when I am at RMH....(and she drives) difficult child has a bank account so easy child can drive to store and either pay with her money or with difficult children money......and or they can bring husband with them......</p><p>difficult child takes care of the pets. husband does what he always does.......nothing. </p><p>we have learned over the years how to manage..maybe it is not always optimal, but....we get by. </p><p></p><p>One good thing that has come from all of it? difficult children psychiatrist is also far fr away......when I take eac child to their appts......it is a LONG car ride with just me and whichever kid.....and it has opened the door for them to talk with me.....gave us opportunities for conversation, shareing time that have helped so much. Plus all my kids adore their docs, their docs adore my kids.....and me and my kids extend the travel time becuz we are so busy spending that time together.....we now tend to dilly dally. By now I am not sure I would want to give that time up with any of the kids, LOL. </p><p>Even in the hotels-----just me and the one kid.....they musta figured out they could not do anything about it so I guess they kinda settled in to make the best of it, and so did I. </p><p>But nah, there isn't anyone TO ask for help. Never has been. </p><p>I suppose that might be part of why sometimes my replies to people might be so much more .....weird....?? than some other peoples? I really have been very very very alone dealing with it all all these years. The diagnosis'es. the medical crisises, the chores, the finances etc..everything. when people say "pick your battles" I had to do that in the most very literal sense and to the max extremes. and when I was so very ill and quadriplegic, it was really really a mess! But it REALLY hit home for me pick my battles. It sure has changed me profoundly and changed how I look at things immensely. </p><p></p><p>BUT by now? it is so much a part of life....and I have this newfound GREAT appreciation simply FOR just life itself......</p><p></p><p>hmmmmm........life is weird. LOL. </p><p></p><p>Hey, I think I am settleing down, LOL! all talked out. </p><p></p><p>Yes, I use lists, calenders.and I post and vent and then I let things go. I type it and then it is gone. Off my shoulders. me and my calender and spiral notebook.....I keep detailed lists and manage to keep up easily with them. and I post and when I type, I process what I am thinking, and then I stop worrying about anything, once I type it. </p><p></p><p>Awwww...so..see you guys got to have these posts here from me..but now that I have typed them, "I" can now go to bed, LOL, cuz now it is out and I read it and -----all is well. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /></p></blockquote><p></p>
[QUOTE="dreamer, post: 136048, member: 1697"] witzend- I apologize.....um.....I am not sure I understood your post? Gosh my brain is more swirling than I realized, no wonder I am typing away to empty it so I can settle donw, LOL. Um...lets see..my load is now MUCH lighter than it has been in ------oh maybe 20 years right now? Lightest it has EVER been. Son had been haveing to go back to Eye docs at univ weekly....then every 2weeks...we did that for 18 months. FINALLY we are now at every 4 months for one eye doctor and every 6 months for the other 2, and once a year for Shriners. Nothing is being actively treateed really....son is doing good, holding his own.stable. He will be on this follow up schedule always now, from my understanding...which I guess is why I am haveing a hard time careing if we go or not and resenting how it will disrupt us...they will not be DOING anything- just kinda checking on him.....but- there is not really anything anyone expects to get better or worse. He is who he is he is how he is and he just is, LOL. ANd he hads adapted to everything. His eye causes no problems really.....he walks.....his seizures are no worse, and have neever been obvious to casual observation, and he has learned over the years since he was born with them to just keep on trucking or whatever. I have been stranged entirely and totally from my famil for many many years, with a LOT of hard things between us. ANd prior to that it was ME who did all the reaching out and helping out....but they are not close anyway....my husband has no family at all.....my husband cannot be trusted with anything, oldest difficult child does not drive......is more like an 11-12 yr old......easy child is at school and work most of the time....and becuz I have been handling husband, difficult child, easy child and son so intensely for so many years----and becuz I have not worked etc now in years--- we do not KNOW anyone to ask for any help. Altho trust is hard for me, too....becuz on the few occasions when I have trusted people who have supposedly offered help- most of the time, they backed out at very last minute, causeing far more problems than ever. The good part is....remember, husband does not work..I do not worjk......oldest difficult child is homeschooled and does not work, and son is homeschooled. This does free me up to do all these things on my own schedule....and that helps a lot. easy child goes topublic school is a senoir and works after school an weekends and is going to college in fall. (to a dorm) So-----when I take son to RMH and am gone from home, we do school at RMH.....but oldest has to wait for me to get home. ALL house chores wait for me......oldest still cannot manage to handle a chore list. (makes her far too anxious) easy child keeps one eye on husband and difficult child when I am at RMH....(and she drives) difficult child has a bank account so easy child can drive to store and either pay with her money or with difficult children money......and or they can bring husband with them...... difficult child takes care of the pets. husband does what he always does.......nothing. we have learned over the years how to manage..maybe it is not always optimal, but....we get by. One good thing that has come from all of it? difficult children psychiatrist is also far fr away......when I take eac child to their appts......it is a LONG car ride with just me and whichever kid.....and it has opened the door for them to talk with me.....gave us opportunities for conversation, shareing time that have helped so much. Plus all my kids adore their docs, their docs adore my kids.....and me and my kids extend the travel time becuz we are so busy spending that time together.....we now tend to dilly dally. By now I am not sure I would want to give that time up with any of the kids, LOL. Even in the hotels-----just me and the one kid.....they musta figured out they could not do anything about it so I guess they kinda settled in to make the best of it, and so did I. But nah, there isn't anyone TO ask for help. Never has been. I suppose that might be part of why sometimes my replies to people might be so much more .....weird....?? than some other peoples? I really have been very very very alone dealing with it all all these years. The diagnosis'es. the medical crisises, the chores, the finances etc..everything. when people say "pick your battles" I had to do that in the most very literal sense and to the max extremes. and when I was so very ill and quadriplegic, it was really really a mess! But it REALLY hit home for me pick my battles. It sure has changed me profoundly and changed how I look at things immensely. BUT by now? it is so much a part of life....and I have this newfound GREAT appreciation simply FOR just life itself...... hmmmmm........life is weird. LOL. Hey, I think I am settleing down, LOL! all talked out. Yes, I use lists, calenders.and I post and vent and then I let things go. I type it and then it is gone. Off my shoulders. me and my calender and spiral notebook.....I keep detailed lists and manage to keep up easily with them. and I post and when I type, I process what I am thinking, and then I stop worrying about anything, once I type it. Awwww...so..see you guys got to have these posts here from me..but now that I have typed them, "I" can now go to bed, LOL, cuz now it is out and I read it and -----all is well. :-) [/QUOTE]
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