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#11
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OT - About my OTs, Help Needed
Julie_Snowshoe wrote:
(I think everyone might find the story interesting): http://www.butyoudontlooksick.com/ar...e-miserandino/ I'm not CN, but I want to thank you, Julie, for posting this link. As someone with a relatively invisible disability, I often point friends & others to this link, as it explains so much. Deborah |
#12
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OT - About my OTs, Help Needed
On 8/17/2011 10:42 PM, Julie_Snowshoe wrote:
On Aug 17, 11:15 pm, wrote: On 8/17/2011 9:52 PM, Julie_Snowshoe wrote: On Aug 17, 5:52 pm, wrote: I'm not being over-sensitive here, I'd like some advice. I know I "OT" a lot - probably twice as much or more as anyone else here. I'd rather not do that because it *does* cause some frustration and I'd just rather not do that to anyone. Some of you may be WWW savvy enough to help me with the questions at the bottom of this post. The problem I'm having is that I've *tried* to find other forums about support for the things I'm going through and they're either 1) so seldom used that the last posts in some are from 2010 - it won't do a bit of good to subscribe to a group that nobody else uses, and 2) like the ones for depression, they are so toxic with trolls and just plain insensitive people that the group ends up *hurting* those who go there for help. The other problem I have is that what I have is so damned rare that nobody, except certain scientists, even know it exists. There *are* active RSD forums, and I've been there, but it's just sort of the same things said over and over - there really is no help to be had because there's just nothing anyone can do about it. I haven't seen a single forum about the MTHFR gene mutation, but there may be some about the things the mutation cause like "ischemic bowel disease", "ileostomy", "spontaneous blood clots" (although that's pretty rare in itself), etc. But I just haven't found them. Does anyone know how to find groups (Google didn't do it for me). So... if I start a group or a blog about any of the above, Does anyone know how I can get people to know about it and participate? Any advice would be greatly appreciated. -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net Lori, When you post OT here, you aren't searching for specific information on the disease you have. You come here and post OT for emotional support. That's what we're here for, but your post said you've tried to find active support groups. You have to decide if what you want is a support group for your specific disease or a support group of people who can truly understand - and face it, most of us can't. Have you ever read the story at the following link (?) and if not, stop now and read it before you respond to my post (I think everyone might find the story interesting): http://www.butyoudontlooksick.com/ar...hristine/the-s... Now, assuming you've read that, you'll probably think, "Wow, I can so totally relate...or a year ago or two years ago I could relate but my disease has progressed past that point." I'm going to tippy toe around this one, but the point I'm making is that there are many people that suffer similar day to day emotional issues. Rather than trying to find an active support group for people who have RSD, look for an active support group of people who suffer similar pains, similar frequency have similar emotional challenges. You may be able to find the support you need that way. Begin that search by looking he http://www.butyoudontlooksick.com/boards/index.php This said, I'm not saying we don't want you here - or that I don't want you here - I'm just trying to help you find the support that you asked for in your original post. hugs Julie Thank you Julie, that was exactly what I was asking and I didn't take offense (and you *never* have to tippy toe around me, I've known you long enough to know your innate kindness and generosity). That's the first time I've ever read the spoon story and, you're right, I can relate. And it may help me explain things to the people around me who get tired of dealing with my illness (but can then go back to their "normal" lives and are able to forget about it for most of the time, but they can *never* know what it's like to deal with it *all* of the time). -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net I was directed to that site from someone who has lupus, but as I was exploring the forum to see if it was something that you might find comfort with I found posts from people with all types of illnesses that result in acute and chronic pain, severe symptoms similar to yours, depression - all of the symptoms that you might expect and many that you've experienced. Check out the forum section, maybe start in the introductions and see if they might give you some emotional support. Their issues are not confined to lupus. hugs Julie I just registered and posted my first post on the "New Members - Say Hello" forum. Again, thanks for this reference! From the little I've read it sounds like a lovely supportive group. -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at: http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net |
#13
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OT - About my OTs, Help Needed
CatNipped wrote in news:9b335aFkq2U1
@mid.individual.net: Thanks Hop! I would never have found those links on my own. I'll try slogging through it, at this point any information at all would help. Unfortunately I haven't found a doctor who was willing to really discuss this with me to help me understand what's going on and what I can expect in the future. As far as RL support groups, I don't think there are any in Houston, I"d tried looking for them and found a few links, but they were all abandoned. At this point I think I'm going to settle on finding a good psychiatrist to see if he can help with these mood swings and depression. Again, thanks for all that effort, it's really appreciated. hey catnipped i font mind your OT stuff, if i am not interested i wont read it, but i wont kill file you either unlike that rude person, i reserve my kill files for trolls. |
#14
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OT - About my OTs, Help Needed
CatNipped wrote in news:9b2rhuFsgU1
@mid.individual.net: I'm not being over-sensitive here, I'd like some advice. I know I "OT" a lot - probably twice as much or more as anyone else here. I'd rather not do that because it *does* cause some frustration and I'd just rather not do that to anyone. Some of you may be WWW savvy enough to help me with the questions at the bottom of this post. The problem I'm having is that I've *tried* to find other forums about support for the things I'm going through and they're either 1) so seldom used that the last posts in some are from 2010 - it won't do a bit of good to subscribe to a group that nobody else uses, and 2) like the ones for depression, they are so toxic with trolls and just plain insensitive people that the group ends up *hurting* those who go there for help. The other problem I have is that what I have is so damned rare that nobody, except certain scientists, even know it exists. There *are* active RSD forums, and I've been there, but it's just sort of the same things said over and over - there really is no help to be had because there's just nothing anyone can do about it. I haven't seen a single forum about the MTHFR gene mutation, but there may be some about the things the mutation cause like "ischemic bowel disease", "ileostomy", "spontaneous blood clots" (although that's pretty rare in itself), etc. But I just haven't found them. Does anyone know how to find groups (Google didn't do it for me). So... if I start a group or a blog about any of the above, Does anyone know how I can get people to know about it and participate? Any advice would be greatly appreciated. I don't mind your OT posts. In fact, they make me realize how lucky I am and I should be grateful. Bobble |
#15
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OT - About my OTs, Help Needed
CatNipped wrote in rec.pets.cats.anecdotes:
Julie_Snowshoe wrote: When you post OT here, you aren't searching for specific information on the disease you have. You come here and post OT for emotional support. That's what we're here for, but your post said you've tried to find active support groups. You have to decide if what you want is a support group for your specific disease or a support group of people who can truly understand - and face it, most of us can't. (snips) Thank you Julie, that was exactly what I was asking and I didn't take offense (and you never have to tippy toe around me, I've known you long enough to know your innate kindness and generosity). That's the first time I've ever read the spoon story and, you're right, I can relate. And it may help me explain things to the people around me who get tired of dealing with my illness (but can then go back to their "normal" lives and are able to forget about it for most of the time, but they can never know what it's like to deal with it all of the time). I know how you feel in many ways. If you'll recall, we met in a support group. That one, wasn't right for me so I stopped pulling it but it worked well for others. -- |
#16
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OT - About my OTs, Help Needed
Julie_Snowshoe wrote in rec.pets.cats.anecdotes:
http://www.butyoudontlooksick.com/ar...istine/the-spo on-theory-written-by-christine-miserandino/ BTW Julie, that's a great story. I'm spoon hording today after overdoing it earlier in the week. I knew it at the time but I needed some nice mother-daughter time so it was worth it! What the article misses to an extent is that part of it. That sometimes you do over-extend knowingly (still, within reason though) because you can't just sit at home every day. Part of what Lori needs is a truely effective pain management clinic (and I don't mean drugs but the emotional management side of it). Clinical depression is very common among pain suffering people and some are more affected than others. Some need more help with it and some just naturally have it or gain it very young due to adversity as a child. Lori is the first type and I am the second. It's sometimes painful when she and I talk together because we both inately know this about one another and have for years. I wish to hell I could teach it to her. We'd both need a support group site to post on to at least even *try* and it has to be one she's comfortable with. |
#17
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OT - About my OTs, Help Needed
On 8/18/2011 7:04 AM, john sumner wrote:
wrote in news:9b335aFkq2U1 @mid.individual.net: Thanks Hop! I would never have found those links on my own. I'll try slogging through it, at this point any information at all would help. Unfortunately I haven't found a doctor who was willing to really discuss this with me to help me understand what's going on and what I can expect in the future. As far as RL support groups, I don't think there are any in Houston, I"d tried looking for them and found a few links, but they were all abandoned. At this point I think I'm going to settle on finding a good psychiatrist to see if he can help with these mood swings and depression. Again, thanks for all that effort, it's really appreciated. hey catnipped i font mind your OT stuff, if i am not interested i wont read it, but i wont kill file you either unlike that rude person, i reserve my kill files for trolls. Thank you John. I don't always respond to all posts, but I read them all and I've enjoyed all of yours so far. You sound like a very kind and sensitive person and you are very welcomed here. -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at: http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net |
#18
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OT - About my OTs, Help Needed
On 8/18/2011 10:23 AM, cshenk wrote:
CatNipped wrote in rec.pets.cats.anecdotes: Julie_Snowshoe wrote: When you post OT here, you aren't searching for specific information on the disease you have. You come here and post OT for emotional support. That's what we're here for, but your post said you've tried to find active support groups. You have to decide if what you want is a support group for your specific disease or a support group of people who can truly understand - and face it, most of us can't. (snips) Thank you Julie, that was exactly what I was asking and I didn't take offense (and you never have to tippy toe around me, I've known you long enough to know your innate kindness and generosity). That's the first time I've ever read the spoon story and, you're right, I can relate. And it may help me explain things to the people around me who get tired of dealing with my illness (but can then go back to their "normal" lives and are able to forget about it for most of the time, but they can never know what it's like to deal with it all of the time). I know how you feel in many ways. If you'll recall, we met in a support group. That one, wasn't right for me so I stopped pulling it but it worked well for others. Yes, I do remember. You're the one thing (maybe the only thing) that came of that experience for me that was very positive and good. I'm not welcome there any more so unsubscribed a long time ago. It's a shame, because it was the only newsgroup I found for chronic pain support - it's a shame the group itself was a pain in the a$$! ; I know I tend to whine more than most. But I also just talk and write more than most also, but like everything in life the bad is *always* noticed while the good is often just ignored or taken for granted. Not whining about that, just noting a fact of life. -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at: http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net |
#19
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OT - About my OTs, Help Needed
On 8/18/2011 10:52 AM, cshenk wrote:
Julie_Snowshoe wrote in rec.pets.cats.anecdotes: http://www.butyoudontlooksick.com/ar...istine/the-spo on-theory-written-by-christine-miserandino/ BTW Julie, that's a great story. I'm spoon hording today after overdoing it earlier in the week. I knew it at the time but I needed some nice mother-daughter time so it was worth it! What the article misses to an extent is that part of it. That sometimes you do over-extend knowingly (still, within reason though) because you can't just sit at home every day. Part of what Lori needs is a truely effective pain management clinic (and I don't mean drugs but the emotional management side of it). Clinical depression is very common among pain suffering people and some are more affected than others. Some need more help with it and some just naturally have it or gain it very young due to adversity as a child. Lori is the first type and I am the second. It's sometimes painful when she and I talk together because we both inately know this about one another and have for years. I wish to hell I could teach it to her. We'd both need a support group site to post on to at least even *try* and it has to be one she's comfortable with. You are *SO* right about that. Fortunately or unfortunately, I come from a family that is totally, disgustingly healthy. It's very, very seldom that one of them even gets a cold, much less the flu. There are no chronic diseases in my family, my grandmother lived to be 104 and at her 100th birthday celebration she got up and danced with one of the band members. To the very day of her death (a stroke while she slept) she didn't even use a cane or a walker. My mother is 86 and she bowls on a league once a week, goes line dancing once a week, rides the exercise cycle in her rec room for half and hour every day, and walks about 5 miles every day. She's always out and about shopping and going to the casinos and bus trips with the AARP. She doesn't even have osteoarthritis or achy joints - she has no aches and pains *at all*. My two older brothers are very active in any number of activities and travels, and my husband has never been sick a day in his life until his recent heart attack, and even that only kept him down for a week or so. My former best friend doesn't "believe" in doctors and hasn't taken a single prescription medication in her life. She "broke up with me" because I didn't call her as much as she called me because I was "always in bed by the ridiculous time of 9PM and couldn't stay up to a decent hour to talk". She said the friendship had gotten too one-sided. That said among other *MUCH* more hurtful and untrue things (she *was* drunk at the time, she was *always* drunk after 7PM which is the real reason *why* I didn't call her, it was too stressful to put up with her drunken anger - she is a "mean drunk"). So there is *nobody* in my RL who has any inkling of an idea of what I go through every day. They believe that I'm just being a) lazy, b) overly dramatic, c) seeking attention or d) being a hypochondriac. They get very impatient with me, angry when I can't do something they want to do, and tired "listening to me whining all the time". -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at: http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net |
#20
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OT - About my OTs, Help Needed
On 8/18/2011 9:13 AM, Bobble wrote:
wrote in news:9b2rhuFsgU1 @mid.individual.net: I'm not being over-sensitive here, I'd like some advice. I know I "OT" a lot - probably twice as much or more as anyone else here. I'd rather not do that because it *does* cause some frustration and I'd just rather not do that to anyone. Some of you may be WWW savvy enough to help me with the questions at the bottom of this post. The problem I'm having is that I've *tried* to find other forums about support for the things I'm going through and they're either 1) so seldom used that the last posts in some are from 2010 - it won't do a bit of good to subscribe to a group that nobody else uses, and 2) like the ones for depression, they are so toxic with trolls and just plain insensitive people that the group ends up *hurting* those who go there for help. The other problem I have is that what I have is so damned rare that nobody, except certain scientists, even know it exists. There *are* active RSD forums, and I've been there, but it's just sort of the same things said over and over - there really is no help to be had because there's just nothing anyone can do about it. I haven't seen a single forum about the MTHFR gene mutation, but there may be some about the things the mutation cause like "ischemic bowel disease", "ileostomy", "spontaneous blood clots" (although that's pretty rare in itself), etc. But I just haven't found them. Does anyone know how to find groups (Google didn't do it for me). So... if I start a group or a blog about any of the above, Does anyone know how I can get people to know about it and participate? Any advice would be greatly appreciated. I don't mind your OT posts. In fact, they make me realize how lucky I am and I should be grateful. Bobble Thank you Bobble, I am so glad you feel that way. I loved reading the story of "The Spoon Theory" because there *are* two sides to it... the perspective on the person dealing with a chronic illness, and the realization of a healthy person of all the things they may take for granted and should cherish about their lives. -- Hugs, CatNipped See all our masters at: http://www.PossiblePlaces.com/CatNipped See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at: http://www.professional-geek.net/rpcablog/ Email: L(dot)T(dot)Crews(at)comcast(dot)net |
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