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#1
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OT - About my OTs, Help Needed
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 |
#2
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OT - About my OTs, Help Needed
On Aug 17, 4:52*pm, CatNipped 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 You may have seen this already, but this website seems to have a lot of current discussions: http://www.healthboards.com/boards/f...play.php?f=108 |
#3
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OT - About my OTs, Help Needed
On 8/17/2011 6:29 PM, hopitus wrote:
On Aug 17, 3:52 pm, CatNipped wrote: 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). Any advice would be greatly appreciated. CatNipped http://www.merckmanuals.com/professi...ml?qt=ischemic bowel disease&alt=sh http://www.merckmanuals.com/professi...alt=sh#v894669 http://www.merckmanuals.com/professi....html?qt=blood disorders from MTHFr&alt=sh All these from an online medical encyclopedia for professionals called Merck Manual which I consult from time to time about much simpler matters. I seriously doubt whether you will gain much 411 for yourself from these links or Mercks because frankly it took everything I know about medical terms to even *find* these links in the Manual. You asked, and finally a small contribution I could make to possible comprehension on your part. I regret they are not "groups" as I visit a small collection re mostly corporate hacking and Market quotation/ stocks/commerce in-depth analysis, way not medical discussions. I had to "fine-tune" the last link down from "genetic mutations".....difficult because most concern testing *on newborns or infants* patients, not adults. Your doc was not b.s.ing you when he stated he was maybe one in one hundred who would detect MTHFR deficiency; many, many other disorders fit symptoms analysis and simple tests, presenting "answers" without further analysis or testing of patient. And you thought he was a wise- ass. If you read this, you'll think otherwise. If you have not already, consulting a local patient advocacy or nursing forum group may point you to a RL focus group that meets regularly where you live. 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. -- 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 |
#4
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OT - About my OTs, Help Needed
On Aug 17, 5:52*pm, CatNipped 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...e-miserandino/ 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 |
#5
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OT - About my OTs, Help Needed
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...e-miserandino/ 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 |
#6
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OT - About my OTs, Help Needed
On Aug 17, 11:15*pm, CatNipped 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 |
#7
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OT - About my OTs, Help Needed
CatNipped 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. I agree with Julie - you come here for emotional support because you know people here, and you trust them. Most people here probably can't give you advice about your particular diagnosis, but you seem to get a lot of support and caring from people. My feeling is, people here are grownups and they can choose to read or not read your posts. I'm sure it was hurtful when blanking on name told you he was killfiling you, but you know, it's kind of a blessing in disguise. If everyone who didn't want to read about your health issues just put your posts in their killfile, then the only people reading your posts would be friends who want to know how you are. That said, here's a suggestion. You could come up with a subject line tag indicating that the post is about your health, weight, pain management, depression, etc. Maybe one word such as "ILLNESS" or "PAIN" or "MTHFR" (I still can't get over that acronym ). Then people who didn't want to read about that stuff could filter out posts having that tag. That way, they wouldn't have to killfile all posts from you. As the guy whose name I can't remember said, he was sorry to have to do it because he likes your cat posts. Joyce -- The average, healthy, well-adjusted adult gets up at seven-thirty in the morning feeling just terrible. -- Jean Kerr |
#8
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OT - About my OTs, Help Needed
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...e-miserandino/ 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 I don't know why I associated this with this post, and it probably won't be funny to most anyone else, but it made me laugh out loud. Maybe someone else here with a disability (and I *do* know there are others here as ill or more as I) might get a small chuckle too. Now that I'm on SSDI and not working and pretty much "bedridden" (gawds I hate that word), I tend to lose track of the days - even to the point of not being able to distinguish the weekend from weekdays. Just now I was thinking I have to call my doctor tomorrow but didn't know if he'd be in his office because I didn't know what day of the week it was. I instantly/automatically looked down at my pill case to see what day was written on it! That's my new "calendar"!! ; -- 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 |
#10
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OT - About my OTs, Help Needed
Also...
I really, really, really hope all this bru-ha-ha over my medical issues doesn't discourage anyone else from writing here about their own problems, because I really would like the chance to give back the support you've all given to me! -- 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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